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Lost my Mum four years and my bestie nearly 3 years ago. Talk to her about whether she has a Will. What does she want for her end of life care. Does she want to be buried or cremated? Thoughts for a service/funeral? Religious or non-denominational?
Does she have Super? Has she picked a beneficiary? If she has Super is her funeral covered? These are very practical considerations.
Sorry if this is a bit too long and some might not be relevant to you, but I figured I'd just give you something a bit comprehensive.
***
There's a lot of stuff you can have pre-prepared and then make up a list for things that can only be done once she's gone.
1. When my mum passed she'd already paid for and organised her own cremation. She'd restructured her banking accounts so that everything would be accessible for the people who needed it (e.g. a lot of 'her' accounts were moved into joint accounts with her partner). Titles for housing/cars were also reorganised.
If someone is staying in the house then you'll want to look at services like power, phone/internet, water, etc being put in their name. If not then that all gets sorted out afterwards (see below).
Rental agreements are another one you'd probably want to look at if that's relevant.
The less you have to include in the will the better. The less you have to sort out afterward the better. Your mum will appreciate knowing things are already sorted out. She's already worrying about your futures, you don't want her feeling like she's leaving you all with a big mess to sort out.
2. But then there's stuff that needs a death certificate, like withdrawing super or closing down accounts/loans, government programs, services you no longer need, etc. That sort of stuff was put on an easy-to-read list and given to the people responsible.
For example:
* I have an account with xy bank
* Here's my account name, number and BSB
* Call the bank and ask to close the account using my death certificate
If it's not on a list, assume it will be forgotten.
You'll find the death certificate does a lot of the work in these situations. 99% of the time they're generally not going to screw you around too much. That 1% will be excruciating because you might not be in the right mental state to deal with it.
2. We went through her things and she decided who was getting what (mostly just sentimental items). She picked where items were going, I made sure they got there.
Going through all her old photos was a really nice moment. When she does pass, you might feel cut off from a lot of her history. I know I really appreciated the chance to go through her photos with her and talk about parts of her life that had never come up before. There's a good chance she'll be a little more open as well.
She'll also probably be pretty happy to know that the people who care about her will be getting items to remember her by. A fear of being forgotten is normal.
She had a lot more peace of mind and it just meant we weren't trying to do all of that in the aftermath, we could just focus on grieving and being together as a family.
***
Two more bits of advice:
1. Speak to her doctors/nurses (especially palliative care) and lawyers, they will point you in the right direction.
My mum hired someone to handle the on-the-day logistics. That woman was great.
The moment Mum passed, we called her up and she took over. She organised the death certificate, she dealt with the hospital and she organised the body being sent to the crematorium, all of that on-the-day bullshit you just don't need to do yourself.
Again, lawyers and palliative care will likely be able to point you in the right direction.
2. Speak to the doctors and be very upfront.
Most people don't talk to their doctors enough. My mum was an oncology nurse who passed from cancer. She had a really good idea of what to expect and what she could ask for.
She had a very upfront agreement with the doctors/nurses. She didn't want to suffer so she was put on a pain relief program that would aggressively ramp up as her situation deteriorated.
You have to understand the rules are different once you're palliative. Doctors will normally put your long-term health as the clearcut #1 priority, for your mum that priority shifts towards her comfort.
"I don't want to feel any pain, drug me up to my eyeballs and let pass away peacefully and pain-free" normally isn't a line that works on doctors. It will work for your mother.
***
One more thing, my Mum had a bit more time to work through all of this, but it made the whole process a lot easier. For you guys, it's going to be tough because this sounds like a shock announcement so it would be very normal if you're already a little bit dazed and emotional.
Be kind to yourself and be kind to your family.
You're all probably going through quite a bit more than you realise.
Solaris is fantastic. For an organisation that relies on donations and volunteers I will certainly be making sure they get a slice of my pie once my time comes around if they are still around and operating just knowing they are aroind if and when you need them.
They were recently struggling to find funds but managed to pull through, my mum has/is also putting them in her will I believe.
I'm going to try to volunteer there if I can as well, I'm financially poor, but rich in gratitude 🩵
Just adding to this that if your mum wants access to her super early to do things and pay for things then due to her diagnosis she should be able to access it tax free and early.
I was trying to find her details before I posted that initial comment. It was someone Mum had organised and it's been a couple of years.
I wish I could be more helpful, palliative care might know.
Also does your Mum live with your sister? Does she own or rent? When your Mum goes can your sister afford to live where she is? Will you have to pack up a house etc?
Very sorry for you mate, anticipatory grief can be bloody worse than a sudden death.
Mother in law passed suddenly on the weekend. It's not an easy subject to broach with your mum but it's really important to get her thoughts on how best to celebrate her life.
A lot of people say "I won't care, I'll be dead" but everything that is put in writing makes your lives as next of kin so much easier. There is a ton of fighting surrounding what to do regarding funeral, wake etc because MIL was very "meh" about forward planning and everyone has different ideas on what she would have wanted. I wish we had some guidelines on what she specifically wanted so the family could focus on grieving instead.
My Mum had funeral insurance and had planned hers. She asked us to pick the basic flowers and told us what songs she wanted. She threw us for a loop as she decided to have a Polski Catholic priest do the service. We weren’t that happy about it. We are non-practising Catholics and my Dad is Polski. Mum drifted from the church because of obvious reasons and both my brothers are gay.
My bestie had cancer and lasted longer than they thought and it was sort of sudden. After proselytising and lecturing me about not having a will, she did not have one. Her parents buried her. She wanted to be cremated. It’s very painful.
Also all passwords/accs/bills/etc. Mums partner passed and trying to cancel cards or login to emails was hard with no passwords. Now my mum has a prep folder with all that stuff in it. A conveyancer or someone similar can help prepare wills and paperwork with you.
As someone who works in healthcare I'd suggest getting mum tied in with palliative services if she hasn't before you need them. It fucking sucks seeing people die in the ED in pain rather than at home in bed, or a nicer quieter place with expert care and good drugs because of failure to plan.
To the above point about super, stating in her will where she wants her super to go (either specifically or as part of her estate in general) doesn’t actually do anything; there’s separate paperwork specific to super that has to be done if there are specific requests about where super goes
Yep, that sounds like what I’m thinking of. I’ve seen multiple media stories about people who erroneously believed their super would be distributed a certain way because they said so in their will, and those responsible for distributing it ended up doing so completely differently to the rest of their estate
Can she put in a request to transfer her super out before death?
That way it all forms part of the estate and you won't be taxed on it yourself
I'm going through something similar. My condolences mate. It'll be a long 6 months, I wish I had more to offer
Sorry about the diagnosis bud.
Taking the time now to get everything set up, planned and in order now not only helps keep your mind on track, but it makes things much easier, smoother and less stressful when the time comes.
Best of luck.
Just be very careful when asking these question especially the will and executor part you don’t want to sound “like a monster” with the way you describe your sister she might go half cock if you blurt these things.
If she doesn’t have her affairs in order I would suggest and I don’t know how to frame this to not sound like an ass so forgive me for framing it but you would have to put your emotions to one side the entire time, be then man and get these affairs in order on her behalf asap to her wishes. The will and POA if one doesn’t exist will be about $1,200
Tact is the most important thing here be the rock for everyone and when she Finnaly moves on and the funural is done hire a hotel room with just you and your wife no one else and have the biggest loudest cry of your life in the dark.
In terms of a will and being an executor, states offer a service where they can do this for free. When my Mum passed away my Dad had his paperwork drawn up for free by NSW Trustee and Guardian. Got a will, made me the executor of his estate and gave me POA. Saved some cash and was very quick.
Practical things to discuss now:
- Will
- passwords
- accounts
- funeral preferences
- bill name changes if necessary
- birth certificate etc (need details with death cert and funeral arrangements) where are located
- their contact list
- donor?
Things after:
- arrangements on possessions
- funeral
- sale of house if applicable
- death cert
- accounts closing etc
This has a good list on page 13-14: https://clinicalexcellence.qld.gov.au/sites/default/files/docs/improvement/end-life-care/bereavement-booklet.pdf
Please contact Solaris Care in Perth.
I'm a 36 yo old in Perth, quite enmeshed with my mum who also got diagnosed with cancer 6 months ago.
Mums just finished chemo, but we don't know the results yet.
Solaris Care made it FAR EASIER to handle.
They are also 100% free.
It made mum feel a lot more secure in knowing that everything for the end of her life is organised and sorted so it won't be a burden on us.
I am really sorry to hear this is happening to your family. If you need to, feel free to reach out 🩵
Hey lovely, I lost my mum two years ago to breast cancer and it fucking sucks. I don’t have much to say other than look out for each other, but also look after yourself. Don’t be afraid to take time for yourself if you need it. Sending love, it’s such a shitty situation. Be kind to yourself. xx
My wife was diagnosed with stage 4 melanoma, they thought she wouldn't make more than a couple of weeks. (had it in the brain). In her situation the medical things fell into place and the support network also fell into place. The palliative care people can and will move Earth to help. If they don't automagically turn up, you can contact them, they are wonderful
Lost my dad to lung cancer 6 years ago. I was 22 at the time, bro was 18. It turned our life upside down. It was a huge defining and turning point in my life.
My coping mechanism was withdrawal, and I regret I did that. Every time I spent with my dad 1 on 1, I just couldn't hold back the tears. He saw how sad I was and assured me he was getting better... he wasn't. I think, make frequent trips to visit, it will cost you financially but this is the last chance you have if it's terminal.
It will be hard, but put on your brave face. Your mum needs you to do that for her. I regret I couldn't with my dad. Break down in front of your wife but not your mum. Your mum doesn't need that burden, she needs people around her to be her rock.
If your mum doesn't have a will, get her to write one, ASAP. The financial aftermath after my dad's passing was a nightmare. (He refused to write one because he saw it as a death sentence).
Wishing you and your family the best of luck. 💛
Edit: I saw your reply for more practical tips. Besides the will, I suggest you look into funeral arrangements, (my dad wanted to be laid to rest overseas, so we cremated him and flew his ashes back). Funeral costs are not cheap. Do you want a wake? Burial, cremation?
Also, what about your sister? If your mum goes, what will she do?
I've lost both my parents to cancer in the last 5 years, I'm 37. This is what I reckon you should think about:
1. Spend as much time with them as possible. Even if they're annoying, you will only remember the good parts. Make some more good memories.
2. See 1 but with any kids you might have.
3. Take lots of photos. Especially good for young kids to remember them.
4. Talk to your mum about treatments. It's quality of life vs. time left, and there's no good answer. Chemo hits like freight train. Your mum will be literally out of action for a whole week after treatment.
My mum eventually died because of sepsis from a fall because she was weak from chemo.
Note: I'm not recommending either path, but whatever you pick just be ok with whatever happens, and understand it's your mum's choice.
5. Talk to your oncologist about less intense treatments. Again, it's quality vs. time. No good answer.
6. Talk to your mum about her will. Whoever is nominated as the executor of her will should know her wishes, take the time to clarify anything now.
7. Talk to your mum about any funeral arrangements she might want. Even ask if there's anyone she doesn't want at her funeral. Now's not the time to care about social politeness.
8. See 1-3. These are the most important ones.
9. Decide if she wants a vigil / death watch, and who should be present.
10. Identify anything that's taking money out of her bank accounts, like direct debit. These payments will cease when the bank is notified of her death. You may need to keep things like house utilities going if someone else is living at her home.
11. Get passwords for all her online accounts including emails or other social media. This makes organising the funeral a lot easier so you don't forget her favourite 3rd aunt twice removed.
12. Identify any credit cards so these can be closed.
When it comes to preparing emotionally I don't think you can. Death and grieving is a process that has to be experienced, you can't take shortcuts. If I could say anything it would be:
* If you have kids, especially very young kids, make time for you to be a grieving son or daughter, not a parent. I couldn't do both at the same time.
* Avoid coping strategies like alcohol or other drugs. These only delay the process.
* Get together with the people who loved your mum and remember the good times.
* Cry, as much as you feel like.
* Cry together. Grieving as a community is better than alone.
I'm sorry you have to go through this mate.
[Making an Advance Care Directive](https://mail.google.com/mail/u/0/?tab=wm#inbox/FMfcgzGtxKWCsgCXZGSsbZlgpLsCJQCN?projector=1&messagePartId=0.1) so when the time comes there's no confusion about what her wishes are, you may need to also get an enduring power of attorney. You may experience your own existential crisis, try to stay centered all you can do is to be the best support you can be. Time cures all things.
Along with will and other advice here, work with her on an advanced care directive (or what it's called over there). So she has a say over how she's treated in hospital if she is incapacitated
I recently learnt about [Gather My Crew](https://www.gathermycrew.org.au/), which is an app for coordinating friends to pitch in and help someone's recovery.
Allows people to slot in for things ranging from driving him to hospital visits, right down to walking the dog and mowing the lawn. Designed to be accessible to people who only casually know the person (e.g. neighbours who want to help out with the dog-walking, gardening, etc).
Haven't used it myself, but sounds like a good idea for coordinating all of the 'things' that need doing.
Spend as much time as you can trying to make memories especially for the little ones. Enjoy every moment you can.
Remember the Doctors are just making a prediction and that it is not set in stone. My dad was given a couple of weeks with Leukemia and lasted nearly 8 years (stubborn bugger.)
Make sure paperwork is set up of course, will, power of attorney, how your Mum wants to be remembered (funeral/cremation, scattering of ashes)
Start her gathering a big list of accounts and passwords through something like bit warden that she can leave you as the emergency accesor if she doesn't log in after X months etc .
This really sucks. My thoughts go out to your entire family.
Best advice, and this will be unpleasant, but talk to your mum about her will (find out if she has one,and if not, get her to write one, and find out who her executor is). Also, find out what accounts she has that can be closed now and what will need to be closed after her passing. I just lost my gran recently, and it's been challenging finding and dealing with all this. If necessary, establish a power of attorney to help with some of this.
Establish a power of enduring guardianship and discuss with your mum how she wants to be treated so the guardian can act accordingly should the need arise. Make sure the whole family is aware of her decision to avoid any conflicts later.
As for your sister, whilst you didn't say she has a disability that causes her co dependence if it's the case it may be prudent to explore with her what support networks are available for her sooner rather than later.
As time goes on, and if your mum finds herself in palliative care, remember most services also offer support to families if you or someone else needs to access it for some guidance or self-care.
Finally, encourage your mum (and family close by) to begin the process of sorting stuff it can both be stressful and cathartic doing this. I encourage doing this with her as it will offer her an opportunity to remember things and, more importantly, pass along little pieces of family history that may otherwise be lost.
https://www.leukaemia.org.au/how-we-can-help/
The leukaemia foundation is fantastic at offering support for both patients and families. They can help link your mum and family into different services depending on what she needs ie. rides to hospital, accommodation, financial counselling etc.
Hey OP, might be a weird thing to offer - but I'm driving from Geelong to Perth early next month. If there's anything you want me to take over for you like gifts or letters, I'd be happy to deliver it - probably slower than post, but your hand to theirs. (I'm also traveling with a dog if allergies are an issue). Alternatively, if you don't mind it being slow going, I've got a passenger seat free too.
I've been sick recently myself, going over to visit family. There's a lot of raw emotion here that's hitting pretty close to home, because if things had gone a bit different might have been my family asking these questions. Nice to see some checklists I can follow myself for if the worst happens. Cheers everyone posting their experiences. Big love to you all.
Reflecting on this again , you are amazing , I will bank the sentiment but not necessarily take you up on the offer . Safe drive , have a beer for me the Nullabor roadhouse , good spot to run the dog as well x
You're all good, the sentiment was the main thing. Afraid I can't drink but I'll do something fizzy and toast to you and your mum. Reckon my dog would never come back if he saw how long he could run for out there haha! But I'll put him on a long lead and let him go wild. Keep well mate.
sorry to hear you're going through this. It may be worth reaching out to the hospital, they can refer to counselling services which are valuable to the family as well as the patient, and refer to some practical services
First off I'd like to say sorry for the bad news. My mum died of terminal cancer nearly 8 years ago so I have been down this path.
There's a couple of things I'd strongly suggest you sit down and discuss with your mother ASAP, namely finances. Dispersement of superannuation amd other assets, funeral costs and planning, and your sister's position going forwards.
They're not easy conversations to have, but let me assure you it's much easier to do this stuff now than after your Mother passes and your family is grieving. From watching my Mother she took satisfaction in knowing exactly how things would play out, and funeral homes can be predatory to grieving families as well.
It's not a good situation, but deal with what you can while you have the frame of mind to deal with it.
Do what you can to be there for support and make sure you have your own self care as well
The leukaemia foundation
I cannot stress this enough, they will help with all sorts of shit you don’t think of. You name it. Talk to them.
I can’t and would never speak to another person’s situation but I was diagnosed with BCRABL AML. Short version is I should be dead but I’m not. I just passed 5 years in remission. The technology is chasing down this shit disease and new treatments are happening. Hope matters.
My best wishes to your mum and you and your whole family.
That’s amazing! May you continue to outrun this asshole of a disease for a long time.
My dad has AML and we have seen first hand just how quickly treatments are moving, and literal lifesaving measures were available to him that weren’t there a year ago.
I second the leukemia foundation, they are just amazing.
Kind of surprised at the lack of comments addressing the sister situation. Are you going to take on the task of caring for her when your mother is no longer able to? What are the logistics of that going to be? Will you relocate to WA while your mother is still with us or attempt to have her and/or your sister relocated. Sorry for not having any suggestions but hopefully someone touches on the topic..
Yeah fair comment. I was vague on this aspect intentionally. It is an emotional dependency/autism and other intellectual aspects, it certainly is a large part of the issue. We are working on a resolve , that hopefully gets them out of public housing and into a more manageable, comfortable situation. So we are privileged in that respect , but fuck it’s going to a nightmare / transition/ emotional roller coaster for them and us to try manage from interstate . We aim to get over as much as finance and practical will allow
I've been there,lost my mum exactly 2 years ago.be prepared for her to pass earlier (my mum was given 6 months,she lasted 2 after getting the news)
say everything you want to say,take as many photos as you can.
it's going to suck for some time after she dies.once the funeral is over,you'll probably start to "come down" after that,the shock will start to wear off etc.it will really,really,really suck.words can't describe what you'll be feeling.
yeah,do all the funeral and will stuff as early as you can,but above all,don't forget to be with your mum as much as possible.you really don't know what you've got until it's gone.
I'm so sorry that you're all going through this.be there for each other,and don't let petty shit get in the way of anything.
So sorry you’re going through this. I lost my dad almost two years ago. I read one of your comments about practical and my dad was super practical and had some good months before he passed, some of the best things dad did for us were;
Organise his bank accounts, will, funeral, bill, phone, subscriptions, super, and told us explicitly his wishes around end of life care, who had medical power of attorney, and where he wanted to die (hospice not home). He was also transparent about his will as much as he needed to be so there were so surprises after he passed. He also designated a charity of choice. He shared all passwords (except a few which annoyed my mum trying to close last funny annoying things).
Engaging with good palliative care/support early as possible helped so much too with care for him and support for mum.
On a not practical note:
Dad also sat with me and handed me every ‘special’ thing from his old boxes he wanted me to have over coffee. Old concert tickets, photos, things he kept from when I was a kid. And he told me why he kept them and why he wanted me to have what he gave me. He didn’t keep much, so it was great to hear the stories on what was passed down.
He also wrote letters to each of the family and close family friends. He went into hospice before he wrote mine and my mums though. I kept the blank paper anyway.
The last months aren’t all doom and gloom. It’s still a time to get the camera out and to get out as much as possible. Create memories and ask so many questions. Love extra much and support each other.
All the best.
Edit: spelling
Sorry you're going through this. I'm 37 now and lost my dad last year in November 2022 to Leukaemia. It started out as myelodysplasia and morphed into Leukaemia. He was given 18 months max. He was put on Azacitidine and Venetoclax which gave him some quality of life. He also had a bowel polyp that had to be removed, located in a difficult spot... As a result, he had to stop the Azacitidine and Venetoclax. The Leukaemia came roaring back, this time terminal. My partner being in the medical profession speaks that language, so was able to help dad out by asking for a sub-cut port to be put in and help with pain relief.
My dad was a very practical man. He had all his funeral expenses paid for years before he became unwell. The day after the haematologist delivered the bad news, Dad was in town seeing his financial advisor, getting all his shares sold. The house was tidied up, gutters cleaned etc. He did everything he could to make sure that Mum would be comfortable and not have to worry as much. He even said he knew how hard it was going to be for us all.
I'd never wish anyone go through what I had to see. Especially when my dad had all his marbles and knew full well what was going to happen. I distinctly remember when the haematologist told us it was terminal and he had 48 hours left. We took a final photo together. We went to the bottle shop and bought him some nice beers.
It was tough on my mum though, waiting on a death certificate, in order to close bank accounts, change the title of the house etc. The car was in dad's name, so we had to go to Vicroads. Closing/terminating his phone plan with Telstra was a pain too.
Each day now, it's still hard. I don't stop thinking of Dad. Missing out on seeing grandchildren grow up, and spending time with mum in his retirement years. But that wasn't his story.
Since then I've bought a boat. I go fishing with my brother sometimes. I threw myself into learning about all marine-related things. Licensing, servicing the boat, safety. All that jazz. When you're out on the bay, I can be honest and chat to my brother about what I miss about Dad. Being on the water is peaceful and quiet. I'm sure he would have approved.
Am going through this very thing with our Mum right now. Things we've done before she has gotten too tired:
1. Organised paperwork, power of attorney, finalised her will.
2. Organised her funeral with her wishes, song choices, photos and outfit. She has decided for cremation over burial.
3. Gone through family photos and put them into piles for family to have after her passing
4. Made a memory book for visitors to write their memories of mum if they wish to. Something for us girls to look back on after we have grieved her passing.
5. Spent as much time together and reminised.
6. Organised palliative care. She has decided on Palliative At Home, the nurses and doctor come as many times as needed throughout the day or night, Organised a bed, anything she has needed they are on to it.
Make sure you take time to work through the emotions of it all. It may catch you by surprise, but it is all part of the grieving process. Be kind to yourself. My thought are with you.
I’m at the tail end, with no more than a week left with my mum.
Just get all the paperwork done. All the insurances, power of attorney, whatever else.
It’s hard to do towards the end, and once it’s all in place, just work on making sure she’s comfortable and seeing the people she loves.
Best of luck to you all, I wish you and her a painless journey.
Practical things to discuss/action:
Will
Power of attorney
End of life care (who & where)
Voluntary assisted dying
Funeral wishes
Passwords to phone/computer
List of friends details to inform them
Withdrawing some money in cash for when accounts freeze until probate granted
Ask cancer council re grief groups, counselling, things that will make her more comfortable
Bucket list for your mum
And then also very important - spending time together, taking photos, talking about memories and wishes, showing the emotion and love while she’s still here - the less you leave unsaid the better. It’s a tough thing to go through and I wish you all the best.
Great advice about contact lists and passwords hadn’t thought of that . And good point bucket list , I think just getting the band back together so to speak , get the grand kids a memory an md mum a chance to be grand parent before the inevitable
Thanks dude big love
Hey there. I lost my parents pretty young. You’ve had lots of great advice, but I wanted to give you the best advice in the whole world- let it go.
Let go of any and all anger from your childhood, any jealousy/issues with siblings and forgive your mum for anything she did that you’re holding in your heart with resentment.
Enjoy the time you have with her, have someone else take lots of photos of the two of you together. I’m sorry this is happening to your family.
Hard days for all concerned I’m sorry to say but there is some great advice here.
Get the money/beneficiaries sorted and it clears the air PLUS talk to your Mum about her funeral.
Sounds a bit morbid but it will take the significantly reduce an already stressful situation.
Ask her watch she wants.
Favourite flowers, music, any poems read out or religious passages if that suits?
Most of all determine if your Mum wants a modest occasion with a wake afterwards or happy to have a bigger event.
Don’t forget, funerals are bloody expensive and while your Mum might want a small, family only affair, don’t forget, it’s her choice and it will go a long way at helping her cope respecting her wishes.
I managed to get my parents to choose and pay for their funerals and it saves on the added stress trying to organise it during an already stressful time plus it keeps meddling family out of insisting they know better and really making things distressing…believe me!
Sorry to hear that your having to contend with this shit hit the sooner you can sort things then you can concentrate on spending some quality time with your Mum and that is absolute gold.
Good luck
Super needs a legally binding beneficiary or they can ignore nominated choice. You get the form from the super company.
Also there is no tax payable if it is part if it comes out before she dies - if you use the terminal reason to pull it out.
Get wills sorted.
My husband has leukaemia. It's a bitch of a ride. Blasts are visible leukemic cells. Ask if she is going on any trial drugs? My husband has AML. He is on a trial drug to prolong life. It is working well.
There are four types of leukaemia. Acute means fast. Chronic means slower. Then you need to know if there are any genetic mutations involved. Genetic mutations make it harder to treat.
Finally, reach out to the leukaemia foundation. They are absolute legends. They have resources for families and group sessions about topics via zoom.
It is all overwhelming right now. Take a breath. . r/leukaemia seems geared towards US treatment options. Thats all I can think of right now.
I'm very sorry about your news.
Look up the Cancer Council for support services. You're not the only ones struggling with a bad diagnosis.
If you can, try to get over for a couple of weekends to give your sister a break. Offer to help her with any paperwork or other admin stuff that needs doing if your Mum's not able to do it herself. If the kids can come as well it will cheer your mother up.
Get the kids to make her some drawings.
Check your mother has a will and her super has a defined beneficiary. It's not being greedy, it will just save a lot of mucking around.
Hi,
Health professional working in cancer care in WA here!
Sorry to hear about the situation.
I would recommend contacting the Cancer Council on 13 11 20 who can point you in the right direction. They seem to be pretty good for general advice.
If your mum is getting treatment at a public hospital you can request for her medical team to refer her to the social worker to assist with things like finances and getting more practical support from services at home if that's a concern. Most public cancer centres have a social worker attached. I think even private hospitals also have social workers to help with these things.
Your mum can also request to be linked with a cancer nurse coordinator (they have expert nurses to help people with different cancers) to guide her through treatment and give individualised practical advice, as well as refer patients and family members to services for emotional support.
Wishing your family all the best.
I’m really sorry to hear this. My wife lost her mother to a similar blood cancer 2 years ago. She was in Ireland while the borders were closed here, since we weren’t permanent residents at the time only my wife could travel and was trapped overseas for months grieving her mother who passed shortly after she got home.
Anyway - savour every second. Record videos of her. Record her voice. Even if it’s her reading something mundane, you’ll treasure these candid and ad hoc little memories that you’ll capture.
Sorry you’re going through this. It sucks.
So I lost my mum 1 year ago on the 24th of September.
I'm 34 with an older sister, 36 and twin younger brothers 31.
Biggest thing I would suggest is ask your mum to write each of you a letter for after she passes.
Record videos of her talking.
Take pictures.
You'll miss her always. But being able to go back amd hear her voice or see her doing something in a video help me so much.
Get her will done.
Another thing to start thinking about early is goals of care. It’s better to think about it before she becomes very unwell, but have her start thinking about what kinds of medical interventions she would want on this journey. I.e. would she want CPR if her heart stops, would she want to be intubated, would she want to be taken to ICU. When would she want them to stop treating things and just make her comfortable.
She should also think about who would she want to make decisions for her if there comes a time when she can’t make them for herself.
Spend as much time as possible with her .
Possible to take few more time with you and Sister together?
I lost my dad to cancer, what I REGRET is not spending enough time with him . Cause , we were not financially well and I had to make money to survive 🥹
My mum was diagnosed around Feb 2021 and passed away in December the same year. There is nothing I can say to prepare you for the coming months. It's extraordinarily hard to express in words, but honestly it will likely be the the hardest and worst time of your life. I think the worst of it for me was watching her disintegrate into a shell of a person that was just not my mum anymore, and the guilt and shame of wishing she would go sooner because it was so hard to see her in so much pain. Then there was further guilt and shame at the wave of relief I felt when she did go. I feel like all of that on top of the grief just makes it so much worse. I guess I'm sharing this with you in case you go through the same feeling so you know you aren't alone. Truly sorry that you have to go through this mate and I wish you all the best. It will be rough, but your friends and family will get you through it.
I lost my mother in 2014, all I can suggest get all the affairs in order sooner rather than later, ie power of attorney, all the financials, funeral arrangements, there are plenty of solicitors out there who will be able to help you and your mum, get the ball rolling now, it’s a tedious time consuming process.
My dad is going through terminal lung cancer right now. He used to be a heavy smoker so it wasn't much of a surprise. But that doesn't really prepare you for everything around the disease, so I guess I'll share with you my experiences and frustrations about this whole thing.
Initially he was given 6 months from April. It's now close to October and while he's never going to be cured, it doesn't look like that number means much. In fact doctors can't really give you an accurate timeframe, they're making a guess based on an average and practical experience. It could be longer, it could be less. You just can't know.
Your mum and your family is going to experience so much bullshit from all parts of the health sector. Doctors don't talk to each other. Everyone is overworked, jaded, and unavailable. That's the reality of our health system post-covid. It's going to be so much back and forward between palliative care, between her GP, between her pharmacy just to get approved for morphine or whatever your palliative care doctor prescribes. There will be waiting. There will be erroneous bills because someone didn't talk to someone about your situation.
There's going to be discussion of an action plan. It's going to be hard, depending on your mum's needs vs your family's capacity to cater to her wishes. In-home palliative care is extremely tiring. Everyone needs to help out. But everyone in your family will react to cancer differently, and it gets so frustrating feeling like you're drowning at times because no one understands that you need help with care. Palliative care won't take you unless you're at death's door. Aged care homes won't take you because you're too high-level needs. Hospitals don't have beds. It's suffocating.
But you have to get help where you can and you have to claw for it. Get aged care help. Domestic Assistance, Personal Care. Your mum will need help with cleaning the house, washing clothes, towels, bedsheets, mowing the lawn, and eventually showering as her body deteriorates and she can no longer do things for herself--especially when on morphine. Get an ACAT referral, approach aged care organisations like Anglicare, Baptistcare etc and don't back down from getting the help you need. Your mum will need respite, and whoever is going to care for her needs respite. Get that service. Get emergency respite services when you need. Get counseling services for your mum and you, her carer, everyone. It's going to be really hard, and you can't confide in your family because you can't overburden them.
Your mum's place needs to be assessed for accessibility. There's probably going to have to be ramps set up, bathrooms changed. Commodes, wheelchairs, hospital beds bought. Medication and your mum's condition needs to be documented daily. There needs to be a care plan. There needs to be phone numbers saved. If your mum requires 24h oxygen, you need to ask her doctor about getting a form filled and sent to her energy provider to subsidise the incredible increase in usage and cost. Someone will also have to stand in as primary carer and inform/apply to centrelink for a carer's allowance.
Others in this thread have already mentioned legal things and end-of-life plans, so I'll leave it at that. I hope my experience will help you.
You are amazing and generous with your advice . Lots of practical legal advice for sure , but none of this I had considered. Thanks for sharing big love
I moved interstate to be back with my parents when they passed, but that's me. Just don't risk missing saying goodbye because you can't get a flight.
Ask what music she would like at her service, it's an absolute bastard of a job when you're grieving.
There's a lot of good advice here. And as I'm a social worker in a hospital.....
PLEASE. GET YOUR MUM TO DO HER ADVANCE CARE PLANNING if she hasn't already done it!!!
Enduring Power of Attorney (I think it's an Enduring Power of Guardianship in WA) and Advance Health Directive being THE UPMOST IMPORTANT ONES.
I cannot tell you how many headaches and stress and grief could have been saved by having these two documents. It takes 20 minutes to fill in and sign in front of a JP, max. If your mum is an inpatient, see if the hospital has a JP you can use. Your mum's state government will have their EPOA version you can print. Your mum can talk to a solicitor from the Cancer Council if she wishes.
If she asks 'well why do I need this', think of it like car insurance. You don't need it right now, but there may come a time where we need these documents in place. It's for her own safety to ensure she is getting her preferred treatment and that her family and treating team knows what she wants and prefers for her care.
Funeral arrangements as well. We are fortunate to have an amazing team up here who will actually come into our hospital to meet with patients. They are so open and welcoming about the conversation and will spend the time with your mum figuring out exactly what she wants.
In regards to emotional coping, being clear about prognosis, treatment options, and clarifying everything with the oncologist/treating team helps a lot of our patients and their families. Don't be afraid to ask questions about the type of care your mum is getting and why. I personally would rather a patient and their family ask a million questions about their care and get answers than sitting there in the unknown.
Finally, the cancer council has GREAT resources for your mum, you, your sister, and your wider family. They have a helpline and also have solicitors to help talk you through the advance planning processes. They have a state based service finder and tips to support children through the grief process as well.
For children, Kids Helpline has a lot of great resources for grief as well and tips for parents and a Parent-line if you need it.
This is a lot longer than I intended but hope this helps!
No worries mate. This can take a huge toll on your and your family's bodies and souls. During these next few months it's okay to take time for yourselves and check in with each other. Even now, grief is normal and healthy (I always say I'm glad to know you're not a robot because I'd be worried if you weren't experiencing *something*) and don't be afraid to reach out to your supports, personal or professional.
Another bit I forgot to mention, this will be more for your mum but it would be a good time to start thinking where she would like to die. Many people pick their homes as it's a familiar place, others may pick hospice or their local hospital. Since your mum lives in Perth, I'm hoping they have some good palliative care support available to her if she does want to die at home, and this is often subject to availability and prognosis (e.g. our local service will only work with those who have a prognosis of less than 3-6 months).
Also another resource I forgot is the Lung Foundation Australia. They specifically focus on lung diseases such as lung cancer and also have some good information and a support directory.
Take care of yourselves. You're in for a rough ride but there are supports out there for you and your family to help cope. 🤍
Sorry to hear about this for your mum, you and your family.
Same thing (same shitty type of cancer and also from Perth!) happened to my family a couple years ago in the middle of COVID. Managed to get back to Australia and spent a couple weeks with my mother before she passed.
Look into the services provided by Silverchain. They helped a ton - not only with advice and support but things like morphine injections in the middle of the night and a hospital bed for the house. They may be able to help provide assistance to your sister and mother for other matters - my dad is still around and my sister is living in Perth, and my mother had sisters in Perth who were really helpful. You’re going to have to lean heavily on outside assistance… the oncology department at Fiona Stanley hospital were great and they may also be able to point you in the right direction too.
Take care of yourself and other loved ones - it doesn’t help if you also get sick too from anything easily preventable (it adds to the stress for everyone when other pressures pile on).
If possible, see if there are any possibilities to ‘work from home’ if you’re able to. Plan your leave of course, but money troubles on top of these trouble are not something that is easy to deal with.
You might want to check that your mother’s affairs are in order (e.g. will, outstanding payments on things etc.). Getting all the bank account and bills sorted is something that someone will have to do.
I don’t know about you, but I felt guilty for moving away for many years and never looking back too much. Then coming back much later and realizing there are so many things you have left to say and time you should have spent with your mother. If you’ve done the same by moving to Victoria, learn to forgive yourself.
Take care.
Keeping you and your family in my thoughts and prayers.
On the more practical side, looking at the will and beginning to tie up loose ends is important. My uncle invested some of my Nanna’s money years before her death. My Dad is the executor of the will and is having a hell of a hard time getting what remains of that investment out of the bank (NAB - uncle used to work for them and shouldn’t have invested the money in that type of account).
As for things with your sister, it might be a good idea to get her into counselling now so that they can equip her with strategies to cope on her own once your Mum passes.
The nature of the relationship between your sister and your mother could get complicated. Is she living with her? Financially dependent? Disabled? These are all things that need to be documented and cleared up otherwise she could have claim on your inheritance (if there is any).
Now is the time if she wants to wright and leave letters for the grandkids and any other friends and family. As time goes on she might want do it but will find it harder the longer she waits. When my family lost my mum she wanted to do this but was to far gone to handle it by the time it came up.
So my biggest bit of advice is don’t wait to do anything, the longer it’s put off the harder it gets.
Best of luck
My dad has AML and we are entering the last few weeks to months after 18 months of treatment. The leukemia foundation is a tremendous resource. My sister was just speaking with them about how to break the news of dad’s impending death to his grandson. They also helped us along the way with some financial assistance, helping navigate access to support services etc. It’s run by people who really understand the needs of the patient and their family. There are a few of their webinars on YouTube too, they have a lot of topics so there may be some relevant topics.
Sorry for your mum’s diagnosis. Fuck cancer.
If you have any specific questions that I may be able to answer, feel free to message me.
Is your sister unable to care for herself? You may want to get a social worker from the hospital where your mum is being treated to help out with sorting out services early. There can be long waiting lists for carers and assisted living homes for your sister once your mum has to pass on.
I lost my mum within 9 months of a terminal diagnosis. There's some excellent information here.
I will add - funeral. Try to talk to your mum now about here wishes. This was the one thing we didn't talk about, and making the decisions when you're frozen is awful and you second guess everything.
Also consider any questions you may have. I wish I had more time to talk to her about her life. I lost her in my mid twenties, and now 10 years on there's so much about her life I want to know but can't.
Put your mother first, your feelings about the situation second. Don't ever let her see you're upset or distressed. Be a rock and help her do whatever she wants and has strength for until the end..make sure eshe knows how much you love and appreciate her.
All the advice you've been given is great, so i don't have much to add. But my partner suggested I write my mum a letter telling her how much I love her. Tell her why, don't hold back, give her examples, make it twenty pages if you have to, and give it to her while she's with you.
It was easier for me to tell her how I felt when I wrote it down. It made me reflect on the life she's given me and appreciate her more. But most importantly, it gave her a reminder of my love whenever she needed it. She'll read it more times than you can imagine.
All the best going forward, mate.
My bestie (50yr F) has an inoperable tumor on her brain stem, she has about 9 months left. I think the best thing you can do, is simply just be there for her. Be a sounding board for all of her fears and anxiety. Its extremely shitty, and so fcking hard to imagine the world without them, but we have to be strong for them. Apparently constantly talking positively can be super annoying, so i try not to do that now. I just listen and reassure her that everything she is feeling, is valid and what is happening to her is so freaking unfair. I also lost my Mum recently to Dementia, so this one is really kicking me when I am down, but it isn't about the ones that are left here without the loved ones, it about making their journey as stress free as possible.
My Dad died suddenly 3 years ago, there's some things I was really glad he had in place and some I regret he missed:
A will - this one should be obvious
Solo executor - I was thankfully the sole executor of my dad's estate. My sister is great and it wouldn't have been a legal problem, but a bunch of things need signatures from ALL executors and that can be a logistical nightmare.
Money - her accounts will be locked as soon as the banks are notified of her death. Make sure you're ready to handle that, and make sure you know of all her accounts prior to her passing.
Probate - getting probate is the turning point from "fuck this sucks" to "ok I can handle this". My experience was that the biggest challenge to this was an unclear Will and a full accounting of the estate's asset's.
Set expectations - my dad's was pretty simple, but it was still about 8 months before I could distribute money to people in the will and over a year before I could finish the whole thing.
Avoid institutions and govt as much as possible - it's just an absolute pain in the ass to deal with these places as the executor. Anything she can do to clean all that up and consolidate that prior to her passing will save you a lot of heartache. Closing down my dad's business was an absolute ballache, even though it wasn't even trading by the time of his death.
Oh also prior to passing:
Power of attorney - don't get lulled into the hospital treating you like you're a decision maker just because you're the next of kin, that's just because you're making decisions to prolong her life. When the rubber hits the road and you need to make that final decision, you need power of attorney and even then you're going to need to get ready for a fight.
The hardest part will be watching her go, I'm sorry but you'll need to be the strong person in the room or the docs will prolong her life regardless of quality of life. You have to be that strong, probably angry (but polite, always polite) person in the room to ensure she has some dignity at the end.
Lost my dad 10 years ago after a 17 year back and forth tango with Cancer. First case I was 3 years old, and he passed away when I was 25. The cancer came back 8 times from memory. (Brain, bowel, liver, lung... etc).
Mum got cancer 3 months ago, and due to that history, it was very easy for us to take it all in stride. She's getting her last round of chemo today, and she's the chatty Kathy lifting everyones spirits.
I just want to say to "we can't solve/cure" the problem does have some wiggle room. My dad was told that he had no chance of survival for 3 of his battle with cancer, but in true ASD + ADHD style he said, fuck that, and went all Pluto's bet and tried everything (so did the chemo, surgery... etc), but also did all the functional mushrooms (Reishi, turkey tale are the ones to look at), Ian gauler foundation (in Victoria), meditation, acupuncture blah blah blah hippy dippy stuff and it worked. So I would advise atl east giving all that stuff a chance. At the very least, it would improve the quality of life for the last few months. If you give the immune system and body the best bloody chance, sometimes it's enough. Or at least makes those last few months better.I never paid too much attention to the exact details of what dad did, but he did focus on bringing down inflammation intensely if you are curious about terms to google. I dunno man, bloody Aspergers engineer dad's sometimes just say fuck you to the rules of biology.
We obviously didn't know it would work at the time though, and were grateful for all the extra days we squeezed out, so here is how we took it in stride:
Be grateful for every day. Video call every day and say you love them, and tell them all the memories that speak gratitude. Just recall all the loving effort she put in when you were young, and reminded her how much she is loved. I know it might make you feel silly at the time, but you'll treasure the memories of sharing your gratitude with her to her years down the track.
Take videos and photos of them doing the every day stuff: cooking, cleaning, gardening. Because when the journey continues without them, it's in those quite every day moments that the loss hits you the hardest, and being able to see them again doing every day stuff, it just... I dunno man, I don't really have the words, but take videos and photos of those ever day moments. Just an absurd amount of photos and videos.
Sorry to hear this, leukaemia is a bitch of a disease.
I lost my mum to it too. There’s lots of great advice here about the practical stuff (will, executor passwords, house etc) so I’ll go a different angle:
- visit as much as you possibly can. You won’t regret it.
- your own emotional support. Get a mental health care plan and a psychologist. Anticipatory grief is a thing and come with lots of emotions such as guilt. It’s damn hard seeing a loved on go through this, and having someone to talk to about it will help. Please don’t be stoic or think you’ll be ok. You won’t be ok for a while, but with the right support you can feel ok eventually and minimise the trauma.
- “bucket list” items. Your mum might not be up for much, but I’m sure she has some interests and places she likes. If she has some favourite gardens, for example, plan to go visit them together. Maybe it’s going to a restaurant (if she’s well enough) etc. Maybe it’s having fish n chips on the beach. Or getting someone to bring their puppy over. Gives you both something to look forward to.
- journal and letters. If she’s up for it, ask her to write down the story of her life. It doesn’t have to be an amazing book-length work, just some reflections and thoughts about her childhood, parenting, friends, career etc.
- photos and video. Take photos together, record her hanging out in the backyard talking to the dog or whatever. Don’t hesitate, don’t think it’s weird, just really make an effort to record some of the good times together. Videos on phones weren’t a thing when my mum was sick, and I’d give anything to see some video footage of her now and hear her voice, see her hand gestures and smile etc.
- If you’re likely to be with her at the end, ask Palliative care nurses/doctors etc lots of questions about end of life care (privately - she doesn’t need to hear it). There is an episode of Stuff You Should Know (podcast) on the process of dying. It’s a tough listen and they talk about the body in quite a sterile/medical way, but it’s very well done and informative. I wish I had a bit of an understanding of the actual death process prior. We were taking her to emergency when we should have just called palliative care, we were encouraging her to eat (and worrying when she wouldn’t) when we should have let her be… we just honestly didn’t understand the *physical process of death* and what that entails. The process of the body shutting down is predictable in some ways, because it happens to everyone. Knowing the order that things tend to happen may be helpful to alleviate your own distress in that moment and be able to focus on her comfort.
Good luck and sorry you are dealing with this.
My mum died from Leukaemia almost 7 years ago. Here’s a practical list.
Will (discuss who will be executor, it’s a lot of work)
Enduring power of attorney
Prepaid/planned funeral. Honestly the best way, then you don’t have to guess what she’d like, she can pick exactly what she wants.
Advanced medical directive for end of life decisions. My mother was in a coma on life support at the end and we knew she DIDN’T want to be kept alive on machines. Made everything easier because it was her wishes.
Withdraw super now to minimise tax
Apply for disability payments from Centrelink
Bank accounts (make sure you know all of the
So that you can contact them. Withdraw money BEFORE she passes to cover costs)
Tax, someone will have to file her last one after she passes so best to see an accountant now so they have all her details
Record her talking about her life and memories
One that we learned recently is that bank accounts that are solely in your mother's name will get frozen until a later date (unsure if until estate is sorted or just temporary, wasn't that involved).
If your sister has any kind of financial dependency then you may need to take preventative steps now. This could be by adding your sister as joint account holder (may have estate implications) or even just transferring some safety net money for until things settle out.
I'm very sorry to hear the news. Not sure if this is mentioned already but I recall a hospital bedside meeting with lawyers for power of attorney and enduring guardianship for my mother. Wish we did that in a more pleasant setting. Wishing you strength for the difficult journey ahead.
Lost my b-i-l literally last night after being diagnosed with a very rare form of leukemia under a year ago. It's been hell for my sister having to navigate the medical system for him, and overall the practitioners have been great, but any cancer patient needs a strong advocate. The patient may tend to be passive with medical care which leads to them being forgotten or pushed down lists. With a strong advocate batting for them, they'll receive better and more prompt care. That's what my sister did, being familiar with how the system works.
He went through two bone marrow transplants, so much chemo, and so much hope and disappointment. It's been a roller coaster ride of emotions and now it's over, less than ten days since they said he was terminal.
I don't envy your journey but wish you all the best.
Sorry to hear this news, this would be devestating for anyone
There is a youtuber called Paul In Perth who did a list like this for Jenny Apples' life expectancy diagnosis. It has some good ideas
[https://www.youtube.com/watch?v=QZ6EeqY0RNg](https://www.youtube.com/watch?v=QZ6EeqY0RNg)
Please get Will and other legal paperwork sorted and watertight. Speak to your mum about her wishes for your sister and her estate, then get a lawyer to confirm the paperwork supports this. It might sound callous but trying to sort that out post death is a nightmare.
Look into insurance policies, benefactors etc as part of that.
And please give yourself time to process then grieve. The big C sucks.
Lost a really good friend to cancer two months ago, I don’t have much advice to offer I’m afraid but I just want you to know that I’m so sorry for your mum and your family to have to go through this. I hope she has no suffering and I hope you get to spend some time with her before she passes
I think it’s the better health website that has a checklist of things you will need to think about taking care of when a parents dies. It’s super comprehensive including all the various places you might need to inform.
Fully understand the need to be practical - I’m 30 and my dad died a month ago after a cancer diagnosis in December ‘22. Old man had nothing sorted out and I have 4 brothers who are significantly older than me but who were just wrecks and couldn’t do any of it. Never thought I’d be doing it on my own or this early in my life, wish someone had told me to get started when dad got his first serious prognosis
All the advice here is great, but also ensure she creates an Advanced Care Directive to ensure she is cared for the way she wants when she’s unable to communicate that
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Lost my Mum four years and my bestie nearly 3 years ago. Talk to her about whether she has a Will. What does she want for her end of life care. Does she want to be buried or cremated? Thoughts for a service/funeral? Religious or non-denominational? Does she have Super? Has she picked a beneficiary? If she has Super is her funeral covered? These are very practical considerations.
Thanks so much, yeah that’s what I’m chasing , practical steps, not discounting the emotion , but like proactive helpful tips. Thanks again
Sorry if this is a bit too long and some might not be relevant to you, but I figured I'd just give you something a bit comprehensive. *** There's a lot of stuff you can have pre-prepared and then make up a list for things that can only be done once she's gone. 1. When my mum passed she'd already paid for and organised her own cremation. She'd restructured her banking accounts so that everything would be accessible for the people who needed it (e.g. a lot of 'her' accounts were moved into joint accounts with her partner). Titles for housing/cars were also reorganised. If someone is staying in the house then you'll want to look at services like power, phone/internet, water, etc being put in their name. If not then that all gets sorted out afterwards (see below). Rental agreements are another one you'd probably want to look at if that's relevant. The less you have to include in the will the better. The less you have to sort out afterward the better. Your mum will appreciate knowing things are already sorted out. She's already worrying about your futures, you don't want her feeling like she's leaving you all with a big mess to sort out. 2. But then there's stuff that needs a death certificate, like withdrawing super or closing down accounts/loans, government programs, services you no longer need, etc. That sort of stuff was put on an easy-to-read list and given to the people responsible. For example: * I have an account with xy bank * Here's my account name, number and BSB * Call the bank and ask to close the account using my death certificate If it's not on a list, assume it will be forgotten. You'll find the death certificate does a lot of the work in these situations. 99% of the time they're generally not going to screw you around too much. That 1% will be excruciating because you might not be in the right mental state to deal with it. 2. We went through her things and she decided who was getting what (mostly just sentimental items). She picked where items were going, I made sure they got there. Going through all her old photos was a really nice moment. When she does pass, you might feel cut off from a lot of her history. I know I really appreciated the chance to go through her photos with her and talk about parts of her life that had never come up before. There's a good chance she'll be a little more open as well. She'll also probably be pretty happy to know that the people who care about her will be getting items to remember her by. A fear of being forgotten is normal. She had a lot more peace of mind and it just meant we weren't trying to do all of that in the aftermath, we could just focus on grieving and being together as a family. *** Two more bits of advice: 1. Speak to her doctors/nurses (especially palliative care) and lawyers, they will point you in the right direction. My mum hired someone to handle the on-the-day logistics. That woman was great. The moment Mum passed, we called her up and she took over. She organised the death certificate, she dealt with the hospital and she organised the body being sent to the crematorium, all of that on-the-day bullshit you just don't need to do yourself. Again, lawyers and palliative care will likely be able to point you in the right direction. 2. Speak to the doctors and be very upfront. Most people don't talk to their doctors enough. My mum was an oncology nurse who passed from cancer. She had a really good idea of what to expect and what she could ask for. She had a very upfront agreement with the doctors/nurses. She didn't want to suffer so she was put on a pain relief program that would aggressively ramp up as her situation deteriorated. You have to understand the rules are different once you're palliative. Doctors will normally put your long-term health as the clearcut #1 priority, for your mum that priority shifts towards her comfort. "I don't want to feel any pain, drug me up to my eyeballs and let pass away peacefully and pain-free" normally isn't a line that works on doctors. It will work for your mother. *** One more thing, my Mum had a bit more time to work through all of this, but it made the whole process a lot easier. For you guys, it's going to be tough because this sounds like a shock announcement so it would be very normal if you're already a little bit dazed and emotional. Be kind to yourself and be kind to your family. You're all probably going through quite a bit more than you realise.
Legend . Sound advice. What’s was the title or profession of the lady stepped in to advise on these things
Contact Solaris Cancer Care. They will do this all for free 🩵 They are in Perth
Solaris is fantastic. For an organisation that relies on donations and volunteers I will certainly be making sure they get a slice of my pie once my time comes around if they are still around and operating just knowing they are aroind if and when you need them.
They were recently struggling to find funds but managed to pull through, my mum has/is also putting them in her will I believe. I'm going to try to volunteer there if I can as well, I'm financially poor, but rich in gratitude 🩵
Just adding to this that if your mum wants access to her super early to do things and pay for things then due to her diagnosis she should be able to access it tax free and early.
I was trying to find her details before I posted that initial comment. It was someone Mum had organised and it's been a couple of years. I wish I could be more helpful, palliative care might know.
Also does your Mum live with your sister? Does she own or rent? When your Mum goes can your sister afford to live where she is? Will you have to pack up a house etc? Very sorry for you mate, anticipatory grief can be bloody worse than a sudden death.
Mother in law passed suddenly on the weekend. It's not an easy subject to broach with your mum but it's really important to get her thoughts on how best to celebrate her life. A lot of people say "I won't care, I'll be dead" but everything that is put in writing makes your lives as next of kin so much easier. There is a ton of fighting surrounding what to do regarding funeral, wake etc because MIL was very "meh" about forward planning and everyone has different ideas on what she would have wanted. I wish we had some guidelines on what she specifically wanted so the family could focus on grieving instead.
My Mum had funeral insurance and had planned hers. She asked us to pick the basic flowers and told us what songs she wanted. She threw us for a loop as she decided to have a Polski Catholic priest do the service. We weren’t that happy about it. We are non-practising Catholics and my Dad is Polski. Mum drifted from the church because of obvious reasons and both my brothers are gay. My bestie had cancer and lasted longer than they thought and it was sort of sudden. After proselytising and lecturing me about not having a will, she did not have one. Her parents buried her. She wanted to be cremated. It’s very painful.
Also all passwords/accs/bills/etc. Mums partner passed and trying to cancel cards or login to emails was hard with no passwords. Now my mum has a prep folder with all that stuff in it. A conveyancer or someone similar can help prepare wills and paperwork with you.
As someone who works in healthcare I'd suggest getting mum tied in with palliative services if she hasn't before you need them. It fucking sucks seeing people die in the ED in pain rather than at home in bed, or a nicer quieter place with expert care and good drugs because of failure to plan.
To the above point about super, stating in her will where she wants her super to go (either specifically or as part of her estate in general) doesn’t actually do anything; there’s separate paperwork specific to super that has to be done if there are specific requests about where super goes
Binding and non bindimg beneficiares. Binding beneficiares need to be revalidated by said paperwork as stated above.
Yep, that sounds like what I’m thinking of. I’ve seen multiple media stories about people who erroneously believed their super would be distributed a certain way because they said so in their will, and those responsible for distributing it ended up doing so completely differently to the rest of their estate
Can she put in a request to transfer her super out before death? That way it all forms part of the estate and you won't be taxed on it yourself I'm going through something similar. My condolences mate. It'll be a long 6 months, I wish I had more to offer
Sorry about the diagnosis bud. Taking the time now to get everything set up, planned and in order now not only helps keep your mind on track, but it makes things much easier, smoother and less stressful when the time comes. Best of luck.
Just be very careful when asking these question especially the will and executor part you don’t want to sound “like a monster” with the way you describe your sister she might go half cock if you blurt these things. If she doesn’t have her affairs in order I would suggest and I don’t know how to frame this to not sound like an ass so forgive me for framing it but you would have to put your emotions to one side the entire time, be then man and get these affairs in order on her behalf asap to her wishes. The will and POA if one doesn’t exist will be about $1,200 Tact is the most important thing here be the rock for everyone and when she Finnaly moves on and the funural is done hire a hotel room with just you and your wife no one else and have the biggest loudest cry of your life in the dark.
In terms of a will and being an executor, states offer a service where they can do this for free. When my Mum passed away my Dad had his paperwork drawn up for free by NSW Trustee and Guardian. Got a will, made me the executor of his estate and gave me POA. Saved some cash and was very quick.
Practical things to discuss now: - Will - passwords - accounts - funeral preferences - bill name changes if necessary - birth certificate etc (need details with death cert and funeral arrangements) where are located - their contact list - donor? Things after: - arrangements on possessions - funeral - sale of house if applicable - death cert - accounts closing etc This has a good list on page 13-14: https://clinicalexcellence.qld.gov.au/sites/default/files/docs/improvement/end-life-care/bereavement-booklet.pdf
Maybe Advanced Healthcare Directive also
THIS! An AHD is so powerful in ensuring she is treated the way she wants.
I’ve lost both parents and endorse this. Very accurate and thorough.
Get probate Pay money to court for the privilage
Please contact Solaris Care in Perth. I'm a 36 yo old in Perth, quite enmeshed with my mum who also got diagnosed with cancer 6 months ago. Mums just finished chemo, but we don't know the results yet. Solaris Care made it FAR EASIER to handle. They are also 100% free. It made mum feel a lot more secure in knowing that everything for the end of her life is organised and sorted so it won't be a burden on us. I am really sorry to hear this is happening to your family. If you need to, feel free to reach out 🩵
Hey lovely, I lost my mum two years ago to breast cancer and it fucking sucks. I don’t have much to say other than look out for each other, but also look after yourself. Don’t be afraid to take time for yourself if you need it. Sending love, it’s such a shitty situation. Be kind to yourself. xx
My wife was diagnosed with stage 4 melanoma, they thought she wouldn't make more than a couple of weeks. (had it in the brain). In her situation the medical things fell into place and the support network also fell into place. The palliative care people can and will move Earth to help. If they don't automagically turn up, you can contact them, they are wonderful
Lost my dad to lung cancer 6 years ago. I was 22 at the time, bro was 18. It turned our life upside down. It was a huge defining and turning point in my life. My coping mechanism was withdrawal, and I regret I did that. Every time I spent with my dad 1 on 1, I just couldn't hold back the tears. He saw how sad I was and assured me he was getting better... he wasn't. I think, make frequent trips to visit, it will cost you financially but this is the last chance you have if it's terminal. It will be hard, but put on your brave face. Your mum needs you to do that for her. I regret I couldn't with my dad. Break down in front of your wife but not your mum. Your mum doesn't need that burden, she needs people around her to be her rock. If your mum doesn't have a will, get her to write one, ASAP. The financial aftermath after my dad's passing was a nightmare. (He refused to write one because he saw it as a death sentence). Wishing you and your family the best of luck. 💛 Edit: I saw your reply for more practical tips. Besides the will, I suggest you look into funeral arrangements, (my dad wanted to be laid to rest overseas, so we cremated him and flew his ashes back). Funeral costs are not cheap. Do you want a wake? Burial, cremation? Also, what about your sister? If your mum goes, what will she do?
Legend . Thanks for sharing and the advice big love
I've lost both my parents to cancer in the last 5 years, I'm 37. This is what I reckon you should think about: 1. Spend as much time with them as possible. Even if they're annoying, you will only remember the good parts. Make some more good memories. 2. See 1 but with any kids you might have. 3. Take lots of photos. Especially good for young kids to remember them. 4. Talk to your mum about treatments. It's quality of life vs. time left, and there's no good answer. Chemo hits like freight train. Your mum will be literally out of action for a whole week after treatment. My mum eventually died because of sepsis from a fall because she was weak from chemo. Note: I'm not recommending either path, but whatever you pick just be ok with whatever happens, and understand it's your mum's choice. 5. Talk to your oncologist about less intense treatments. Again, it's quality vs. time. No good answer. 6. Talk to your mum about her will. Whoever is nominated as the executor of her will should know her wishes, take the time to clarify anything now. 7. Talk to your mum about any funeral arrangements she might want. Even ask if there's anyone she doesn't want at her funeral. Now's not the time to care about social politeness. 8. See 1-3. These are the most important ones. 9. Decide if she wants a vigil / death watch, and who should be present. 10. Identify anything that's taking money out of her bank accounts, like direct debit. These payments will cease when the bank is notified of her death. You may need to keep things like house utilities going if someone else is living at her home. 11. Get passwords for all her online accounts including emails or other social media. This makes organising the funeral a lot easier so you don't forget her favourite 3rd aunt twice removed. 12. Identify any credit cards so these can be closed. When it comes to preparing emotionally I don't think you can. Death and grieving is a process that has to be experienced, you can't take shortcuts. If I could say anything it would be: * If you have kids, especially very young kids, make time for you to be a grieving son or daughter, not a parent. I couldn't do both at the same time. * Avoid coping strategies like alcohol or other drugs. These only delay the process. * Get together with the people who loved your mum and remember the good times. * Cry, as much as you feel like. * Cry together. Grieving as a community is better than alone. I'm sorry you have to go through this mate.
Thanks legend , super sound advice
Don't shut down emotionally like I did. Process your emotions in a healthy way, otherwise they'll be following you around for the rest of your life
Perhaps OP even book in now for a therapist to help him guide him emotionally through the next couple years.
[Making an Advance Care Directive](https://mail.google.com/mail/u/0/?tab=wm#inbox/FMfcgzGtxKWCsgCXZGSsbZlgpLsCJQCN?projector=1&messagePartId=0.1) so when the time comes there's no confusion about what her wishes are, you may need to also get an enduring power of attorney. You may experience your own existential crisis, try to stay centered all you can do is to be the best support you can be. Time cures all things.
Along with will and other advice here, work with her on an advanced care directive (or what it's called over there). So she has a say over how she's treated in hospital if she is incapacitated
I recently learnt about [Gather My Crew](https://www.gathermycrew.org.au/), which is an app for coordinating friends to pitch in and help someone's recovery. Allows people to slot in for things ranging from driving him to hospital visits, right down to walking the dog and mowing the lawn. Designed to be accessible to people who only casually know the person (e.g. neighbours who want to help out with the dog-walking, gardening, etc). Haven't used it myself, but sounds like a good idea for coordinating all of the 'things' that need doing.
Spend as much time as you can trying to make memories especially for the little ones. Enjoy every moment you can. Remember the Doctors are just making a prediction and that it is not set in stone. My dad was given a couple of weeks with Leukemia and lasted nearly 8 years (stubborn bugger.) Make sure paperwork is set up of course, will, power of attorney, how your Mum wants to be remembered (funeral/cremation, scattering of ashes)
Start her gathering a big list of accounts and passwords through something like bit warden that she can leave you as the emergency accesor if she doesn't log in after X months etc .
This really sucks. My thoughts go out to your entire family. Best advice, and this will be unpleasant, but talk to your mum about her will (find out if she has one,and if not, get her to write one, and find out who her executor is). Also, find out what accounts she has that can be closed now and what will need to be closed after her passing. I just lost my gran recently, and it's been challenging finding and dealing with all this. If necessary, establish a power of attorney to help with some of this. Establish a power of enduring guardianship and discuss with your mum how she wants to be treated so the guardian can act accordingly should the need arise. Make sure the whole family is aware of her decision to avoid any conflicts later. As for your sister, whilst you didn't say she has a disability that causes her co dependence if it's the case it may be prudent to explore with her what support networks are available for her sooner rather than later. As time goes on, and if your mum finds herself in palliative care, remember most services also offer support to families if you or someone else needs to access it for some guidance or self-care. Finally, encourage your mum (and family close by) to begin the process of sorting stuff it can both be stressful and cathartic doing this. I encourage doing this with her as it will offer her an opportunity to remember things and, more importantly, pass along little pieces of family history that may otherwise be lost.
https://www.leukaemia.org.au/how-we-can-help/ The leukaemia foundation is fantastic at offering support for both patients and families. They can help link your mum and family into different services depending on what she needs ie. rides to hospital, accommodation, financial counselling etc.
Hey OP, might be a weird thing to offer - but I'm driving from Geelong to Perth early next month. If there's anything you want me to take over for you like gifts or letters, I'd be happy to deliver it - probably slower than post, but your hand to theirs. (I'm also traveling with a dog if allergies are an issue). Alternatively, if you don't mind it being slow going, I've got a passenger seat free too. I've been sick recently myself, going over to visit family. There's a lot of raw emotion here that's hitting pretty close to home, because if things had gone a bit different might have been my family asking these questions. Nice to see some checklists I can follow myself for if the worst happens. Cheers everyone posting their experiences. Big love to you all.
Omg bro / sis that is the kindest gesture I have ever heard . Big love ❤️
Reflecting on this again , you are amazing , I will bank the sentiment but not necessarily take you up on the offer . Safe drive , have a beer for me the Nullabor roadhouse , good spot to run the dog as well x
You're all good, the sentiment was the main thing. Afraid I can't drink but I'll do something fizzy and toast to you and your mum. Reckon my dog would never come back if he saw how long he could run for out there haha! But I'll put him on a long lead and let him go wild. Keep well mate.
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Really kind thanks for your advice and time big love
sorry to hear you're going through this. It may be worth reaching out to the hospital, they can refer to counselling services which are valuable to the family as well as the patient, and refer to some practical services
Get your sister into therapy now. Don't wait. Find a psychologist who specialises in grief.
First off I'd like to say sorry for the bad news. My mum died of terminal cancer nearly 8 years ago so I have been down this path. There's a couple of things I'd strongly suggest you sit down and discuss with your mother ASAP, namely finances. Dispersement of superannuation amd other assets, funeral costs and planning, and your sister's position going forwards. They're not easy conversations to have, but let me assure you it's much easier to do this stuff now than after your Mother passes and your family is grieving. From watching my Mother she took satisfaction in knowing exactly how things would play out, and funeral homes can be predatory to grieving families as well. It's not a good situation, but deal with what you can while you have the frame of mind to deal with it. Do what you can to be there for support and make sure you have your own self care as well
The leukaemia foundation I cannot stress this enough, they will help with all sorts of shit you don’t think of. You name it. Talk to them. I can’t and would never speak to another person’s situation but I was diagnosed with BCRABL AML. Short version is I should be dead but I’m not. I just passed 5 years in remission. The technology is chasing down this shit disease and new treatments are happening. Hope matters. My best wishes to your mum and you and your whole family.
Thank you x
That’s amazing! May you continue to outrun this asshole of a disease for a long time. My dad has AML and we have seen first hand just how quickly treatments are moving, and literal lifesaving measures were available to him that weren’t there a year ago. I second the leukemia foundation, they are just amazing.
That’s so good to read you went into remission. I hope you continue well.
Kind of surprised at the lack of comments addressing the sister situation. Are you going to take on the task of caring for her when your mother is no longer able to? What are the logistics of that going to be? Will you relocate to WA while your mother is still with us or attempt to have her and/or your sister relocated. Sorry for not having any suggestions but hopefully someone touches on the topic..
Yeah fair comment. I was vague on this aspect intentionally. It is an emotional dependency/autism and other intellectual aspects, it certainly is a large part of the issue. We are working on a resolve , that hopefully gets them out of public housing and into a more manageable, comfortable situation. So we are privileged in that respect , but fuck it’s going to a nightmare / transition/ emotional roller coaster for them and us to try manage from interstate . We aim to get over as much as finance and practical will allow
I've been there,lost my mum exactly 2 years ago.be prepared for her to pass earlier (my mum was given 6 months,she lasted 2 after getting the news) say everything you want to say,take as many photos as you can. it's going to suck for some time after she dies.once the funeral is over,you'll probably start to "come down" after that,the shock will start to wear off etc.it will really,really,really suck.words can't describe what you'll be feeling. yeah,do all the funeral and will stuff as early as you can,but above all,don't forget to be with your mum as much as possible.you really don't know what you've got until it's gone. I'm so sorry that you're all going through this.be there for each other,and don't let petty shit get in the way of anything.
So sorry you’re going through this. I lost my dad almost two years ago. I read one of your comments about practical and my dad was super practical and had some good months before he passed, some of the best things dad did for us were; Organise his bank accounts, will, funeral, bill, phone, subscriptions, super, and told us explicitly his wishes around end of life care, who had medical power of attorney, and where he wanted to die (hospice not home). He was also transparent about his will as much as he needed to be so there were so surprises after he passed. He also designated a charity of choice. He shared all passwords (except a few which annoyed my mum trying to close last funny annoying things). Engaging with good palliative care/support early as possible helped so much too with care for him and support for mum. On a not practical note: Dad also sat with me and handed me every ‘special’ thing from his old boxes he wanted me to have over coffee. Old concert tickets, photos, things he kept from when I was a kid. And he told me why he kept them and why he wanted me to have what he gave me. He didn’t keep much, so it was great to hear the stories on what was passed down. He also wrote letters to each of the family and close family friends. He went into hospice before he wrote mine and my mums though. I kept the blank paper anyway. The last months aren’t all doom and gloom. It’s still a time to get the camera out and to get out as much as possible. Create memories and ask so many questions. Love extra much and support each other. All the best. Edit: spelling
Thanks for sharing, big love x
Sorry you're going through this. I'm 37 now and lost my dad last year in November 2022 to Leukaemia. It started out as myelodysplasia and morphed into Leukaemia. He was given 18 months max. He was put on Azacitidine and Venetoclax which gave him some quality of life. He also had a bowel polyp that had to be removed, located in a difficult spot... As a result, he had to stop the Azacitidine and Venetoclax. The Leukaemia came roaring back, this time terminal. My partner being in the medical profession speaks that language, so was able to help dad out by asking for a sub-cut port to be put in and help with pain relief. My dad was a very practical man. He had all his funeral expenses paid for years before he became unwell. The day after the haematologist delivered the bad news, Dad was in town seeing his financial advisor, getting all his shares sold. The house was tidied up, gutters cleaned etc. He did everything he could to make sure that Mum would be comfortable and not have to worry as much. He even said he knew how hard it was going to be for us all. I'd never wish anyone go through what I had to see. Especially when my dad had all his marbles and knew full well what was going to happen. I distinctly remember when the haematologist told us it was terminal and he had 48 hours left. We took a final photo together. We went to the bottle shop and bought him some nice beers. It was tough on my mum though, waiting on a death certificate, in order to close bank accounts, change the title of the house etc. The car was in dad's name, so we had to go to Vicroads. Closing/terminating his phone plan with Telstra was a pain too. Each day now, it's still hard. I don't stop thinking of Dad. Missing out on seeing grandchildren grow up, and spending time with mum in his retirement years. But that wasn't his story. Since then I've bought a boat. I go fishing with my brother sometimes. I threw myself into learning about all marine-related things. Licensing, servicing the boat, safety. All that jazz. When you're out on the bay, I can be honest and chat to my brother about what I miss about Dad. Being on the water is peaceful and quiet. I'm sure he would have approved.
Thanks for sharing . Yeah being on the water is a special place for reflection. Big love
Am going through this very thing with our Mum right now. Things we've done before she has gotten too tired: 1. Organised paperwork, power of attorney, finalised her will. 2. Organised her funeral with her wishes, song choices, photos and outfit. She has decided for cremation over burial. 3. Gone through family photos and put them into piles for family to have after her passing 4. Made a memory book for visitors to write their memories of mum if they wish to. Something for us girls to look back on after we have grieved her passing. 5. Spent as much time together and reminised. 6. Organised palliative care. She has decided on Palliative At Home, the nurses and doctor come as many times as needed throughout the day or night, Organised a bed, anything she has needed they are on to it. Make sure you take time to work through the emotions of it all. It may catch you by surprise, but it is all part of the grieving process. Be kind to yourself. My thought are with you.
Thank you x
I’m at the tail end, with no more than a week left with my mum. Just get all the paperwork done. All the insurances, power of attorney, whatever else. It’s hard to do towards the end, and once it’s all in place, just work on making sure she’s comfortable and seeing the people she loves. Best of luck to you all, I wish you and her a painless journey.
Practical things to discuss/action: Will Power of attorney End of life care (who & where) Voluntary assisted dying Funeral wishes Passwords to phone/computer List of friends details to inform them Withdrawing some money in cash for when accounts freeze until probate granted Ask cancer council re grief groups, counselling, things that will make her more comfortable Bucket list for your mum And then also very important - spending time together, taking photos, talking about memories and wishes, showing the emotion and love while she’s still here - the less you leave unsaid the better. It’s a tough thing to go through and I wish you all the best.
Great advice about contact lists and passwords hadn’t thought of that . And good point bucket list , I think just getting the band back together so to speak , get the grand kids a memory an md mum a chance to be grand parent before the inevitable Thanks dude big love
Hey there. I lost my parents pretty young. You’ve had lots of great advice, but I wanted to give you the best advice in the whole world- let it go. Let go of any and all anger from your childhood, any jealousy/issues with siblings and forgive your mum for anything she did that you’re holding in your heart with resentment. Enjoy the time you have with her, have someone else take lots of photos of the two of you together. I’m sorry this is happening to your family.
Hard days for all concerned I’m sorry to say but there is some great advice here. Get the money/beneficiaries sorted and it clears the air PLUS talk to your Mum about her funeral. Sounds a bit morbid but it will take the significantly reduce an already stressful situation. Ask her watch she wants. Favourite flowers, music, any poems read out or religious passages if that suits? Most of all determine if your Mum wants a modest occasion with a wake afterwards or happy to have a bigger event. Don’t forget, funerals are bloody expensive and while your Mum might want a small, family only affair, don’t forget, it’s her choice and it will go a long way at helping her cope respecting her wishes. I managed to get my parents to choose and pay for their funerals and it saves on the added stress trying to organise it during an already stressful time plus it keeps meddling family out of insisting they know better and really making things distressing…believe me! Sorry to hear that your having to contend with this shit hit the sooner you can sort things then you can concentrate on spending some quality time with your Mum and that is absolute gold. Good luck
Thank you
Super needs a legally binding beneficiary or they can ignore nominated choice. You get the form from the super company. Also there is no tax payable if it is part if it comes out before she dies - if you use the terminal reason to pull it out. Get wills sorted. My husband has leukaemia. It's a bitch of a ride. Blasts are visible leukemic cells. Ask if she is going on any trial drugs? My husband has AML. He is on a trial drug to prolong life. It is working well. There are four types of leukaemia. Acute means fast. Chronic means slower. Then you need to know if there are any genetic mutations involved. Genetic mutations make it harder to treat. Finally, reach out to the leukaemia foundation. They are absolute legends. They have resources for families and group sessions about topics via zoom. It is all overwhelming right now. Take a breath. . r/leukaemia seems geared towards US treatment options. Thats all I can think of right now.
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Sound , thanks dude x
I'm very sorry about your news. Look up the Cancer Council for support services. You're not the only ones struggling with a bad diagnosis. If you can, try to get over for a couple of weekends to give your sister a break. Offer to help her with any paperwork or other admin stuff that needs doing if your Mum's not able to do it herself. If the kids can come as well it will cheer your mother up. Get the kids to make her some drawings. Check your mother has a will and her super has a defined beneficiary. It's not being greedy, it will just save a lot of mucking around.
Hi, Health professional working in cancer care in WA here! Sorry to hear about the situation. I would recommend contacting the Cancer Council on 13 11 20 who can point you in the right direction. They seem to be pretty good for general advice. If your mum is getting treatment at a public hospital you can request for her medical team to refer her to the social worker to assist with things like finances and getting more practical support from services at home if that's a concern. Most public cancer centres have a social worker attached. I think even private hospitals also have social workers to help with these things. Your mum can also request to be linked with a cancer nurse coordinator (they have expert nurses to help people with different cancers) to guide her through treatment and give individualised practical advice, as well as refer patients and family members to services for emotional support. Wishing your family all the best.
Legend thanks so much for the reply and advice big love
I’m really sorry to hear this. My wife lost her mother to a similar blood cancer 2 years ago. She was in Ireland while the borders were closed here, since we weren’t permanent residents at the time only my wife could travel and was trapped overseas for months grieving her mother who passed shortly after she got home. Anyway - savour every second. Record videos of her. Record her voice. Even if it’s her reading something mundane, you’ll treasure these candid and ad hoc little memories that you’ll capture. Sorry you’re going through this. It sucks.
Thank you x
So I lost my mum 1 year ago on the 24th of September. I'm 34 with an older sister, 36 and twin younger brothers 31. Biggest thing I would suggest is ask your mum to write each of you a letter for after she passes. Record videos of her talking. Take pictures. You'll miss her always. But being able to go back amd hear her voice or see her doing something in a video help me so much.
Just lost my dad at 36 - have nothing helpful to say, just wanted to say I’m sorry.
X thanks my bro sorry to hear appreciate it
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Brutal , but thanks for the insight x
There might be some local resources/ support organisations that could help. You could try cross-posting this to r/Perth
Get her will done. Another thing to start thinking about early is goals of care. It’s better to think about it before she becomes very unwell, but have her start thinking about what kinds of medical interventions she would want on this journey. I.e. would she want CPR if her heart stops, would she want to be intubated, would she want to be taken to ICU. When would she want them to stop treating things and just make her comfortable. She should also think about who would she want to make decisions for her if there comes a time when she can’t make them for herself.
Spend as much time as possible with her . Possible to take few more time with you and Sister together? I lost my dad to cancer, what I REGRET is not spending enough time with him . Cause , we were not financially well and I had to make money to survive 🥹
My mum was diagnosed around Feb 2021 and passed away in December the same year. There is nothing I can say to prepare you for the coming months. It's extraordinarily hard to express in words, but honestly it will likely be the the hardest and worst time of your life. I think the worst of it for me was watching her disintegrate into a shell of a person that was just not my mum anymore, and the guilt and shame of wishing she would go sooner because it was so hard to see her in so much pain. Then there was further guilt and shame at the wave of relief I felt when she did go. I feel like all of that on top of the grief just makes it so much worse. I guess I'm sharing this with you in case you go through the same feeling so you know you aren't alone. Truly sorry that you have to go through this mate and I wish you all the best. It will be rough, but your friends and family will get you through it.
Thanks my bro , very kind
I lost my mother in 2014, all I can suggest get all the affairs in order sooner rather than later, ie power of attorney, all the financials, funeral arrangements, there are plenty of solicitors out there who will be able to help you and your mum, get the ball rolling now, it’s a tedious time consuming process.
Have known more than a few people that were given less than a year & stuck around for another 10+, here's hoping the same for your matriarch 😉
My dad is going through terminal lung cancer right now. He used to be a heavy smoker so it wasn't much of a surprise. But that doesn't really prepare you for everything around the disease, so I guess I'll share with you my experiences and frustrations about this whole thing. Initially he was given 6 months from April. It's now close to October and while he's never going to be cured, it doesn't look like that number means much. In fact doctors can't really give you an accurate timeframe, they're making a guess based on an average and practical experience. It could be longer, it could be less. You just can't know. Your mum and your family is going to experience so much bullshit from all parts of the health sector. Doctors don't talk to each other. Everyone is overworked, jaded, and unavailable. That's the reality of our health system post-covid. It's going to be so much back and forward between palliative care, between her GP, between her pharmacy just to get approved for morphine or whatever your palliative care doctor prescribes. There will be waiting. There will be erroneous bills because someone didn't talk to someone about your situation. There's going to be discussion of an action plan. It's going to be hard, depending on your mum's needs vs your family's capacity to cater to her wishes. In-home palliative care is extremely tiring. Everyone needs to help out. But everyone in your family will react to cancer differently, and it gets so frustrating feeling like you're drowning at times because no one understands that you need help with care. Palliative care won't take you unless you're at death's door. Aged care homes won't take you because you're too high-level needs. Hospitals don't have beds. It's suffocating. But you have to get help where you can and you have to claw for it. Get aged care help. Domestic Assistance, Personal Care. Your mum will need help with cleaning the house, washing clothes, towels, bedsheets, mowing the lawn, and eventually showering as her body deteriorates and she can no longer do things for herself--especially when on morphine. Get an ACAT referral, approach aged care organisations like Anglicare, Baptistcare etc and don't back down from getting the help you need. Your mum will need respite, and whoever is going to care for her needs respite. Get that service. Get emergency respite services when you need. Get counseling services for your mum and you, her carer, everyone. It's going to be really hard, and you can't confide in your family because you can't overburden them. Your mum's place needs to be assessed for accessibility. There's probably going to have to be ramps set up, bathrooms changed. Commodes, wheelchairs, hospital beds bought. Medication and your mum's condition needs to be documented daily. There needs to be a care plan. There needs to be phone numbers saved. If your mum requires 24h oxygen, you need to ask her doctor about getting a form filled and sent to her energy provider to subsidise the incredible increase in usage and cost. Someone will also have to stand in as primary carer and inform/apply to centrelink for a carer's allowance. Others in this thread have already mentioned legal things and end-of-life plans, so I'll leave it at that. I hope my experience will help you.
You are amazing and generous with your advice . Lots of practical legal advice for sure , but none of this I had considered. Thanks for sharing big love
I moved interstate to be back with my parents when they passed, but that's me. Just don't risk missing saying goodbye because you can't get a flight. Ask what music she would like at her service, it's an absolute bastard of a job when you're grieving.
There's a lot of good advice here. And as I'm a social worker in a hospital..... PLEASE. GET YOUR MUM TO DO HER ADVANCE CARE PLANNING if she hasn't already done it!!! Enduring Power of Attorney (I think it's an Enduring Power of Guardianship in WA) and Advance Health Directive being THE UPMOST IMPORTANT ONES. I cannot tell you how many headaches and stress and grief could have been saved by having these two documents. It takes 20 minutes to fill in and sign in front of a JP, max. If your mum is an inpatient, see if the hospital has a JP you can use. Your mum's state government will have their EPOA version you can print. Your mum can talk to a solicitor from the Cancer Council if she wishes. If she asks 'well why do I need this', think of it like car insurance. You don't need it right now, but there may come a time where we need these documents in place. It's for her own safety to ensure she is getting her preferred treatment and that her family and treating team knows what she wants and prefers for her care. Funeral arrangements as well. We are fortunate to have an amazing team up here who will actually come into our hospital to meet with patients. They are so open and welcoming about the conversation and will spend the time with your mum figuring out exactly what she wants. In regards to emotional coping, being clear about prognosis, treatment options, and clarifying everything with the oncologist/treating team helps a lot of our patients and their families. Don't be afraid to ask questions about the type of care your mum is getting and why. I personally would rather a patient and their family ask a million questions about their care and get answers than sitting there in the unknown. Finally, the cancer council has GREAT resources for your mum, you, your sister, and your wider family. They have a helpline and also have solicitors to help talk you through the advance planning processes. They have a state based service finder and tips to support children through the grief process as well. For children, Kids Helpline has a lot of great resources for grief as well and tips for parents and a Parent-line if you need it. This is a lot longer than I intended but hope this helps!
Thanks so much for your time and thought and great advice x
No worries mate. This can take a huge toll on your and your family's bodies and souls. During these next few months it's okay to take time for yourselves and check in with each other. Even now, grief is normal and healthy (I always say I'm glad to know you're not a robot because I'd be worried if you weren't experiencing *something*) and don't be afraid to reach out to your supports, personal or professional. Another bit I forgot to mention, this will be more for your mum but it would be a good time to start thinking where she would like to die. Many people pick their homes as it's a familiar place, others may pick hospice or their local hospital. Since your mum lives in Perth, I'm hoping they have some good palliative care support available to her if she does want to die at home, and this is often subject to availability and prognosis (e.g. our local service will only work with those who have a prognosis of less than 3-6 months). Also another resource I forgot is the Lung Foundation Australia. They specifically focus on lung diseases such as lung cancer and also have some good information and a support directory. Take care of yourselves. You're in for a rough ride but there are supports out there for you and your family to help cope. 🤍
Sorry to hear about this for your mum, you and your family. Same thing (same shitty type of cancer and also from Perth!) happened to my family a couple years ago in the middle of COVID. Managed to get back to Australia and spent a couple weeks with my mother before she passed. Look into the services provided by Silverchain. They helped a ton - not only with advice and support but things like morphine injections in the middle of the night and a hospital bed for the house. They may be able to help provide assistance to your sister and mother for other matters - my dad is still around and my sister is living in Perth, and my mother had sisters in Perth who were really helpful. You’re going to have to lean heavily on outside assistance… the oncology department at Fiona Stanley hospital were great and they may also be able to point you in the right direction too. Take care of yourself and other loved ones - it doesn’t help if you also get sick too from anything easily preventable (it adds to the stress for everyone when other pressures pile on). If possible, see if there are any possibilities to ‘work from home’ if you’re able to. Plan your leave of course, but money troubles on top of these trouble are not something that is easy to deal with. You might want to check that your mother’s affairs are in order (e.g. will, outstanding payments on things etc.). Getting all the bank account and bills sorted is something that someone will have to do. I don’t know about you, but I felt guilty for moving away for many years and never looking back too much. Then coming back much later and realizing there are so many things you have left to say and time you should have spent with your mother. If you’ve done the same by moving to Victoria, learn to forgive yourself. Take care.
Just tell her you love her and that you forgive her for anything unresolved, and you're sorry for being a teenager once.
Keeping you and your family in my thoughts and prayers. On the more practical side, looking at the will and beginning to tie up loose ends is important. My uncle invested some of my Nanna’s money years before her death. My Dad is the executor of the will and is having a hell of a hard time getting what remains of that investment out of the bank (NAB - uncle used to work for them and shouldn’t have invested the money in that type of account). As for things with your sister, it might be a good idea to get her into counselling now so that they can equip her with strategies to cope on her own once your Mum passes.
The nature of the relationship between your sister and your mother could get complicated. Is she living with her? Financially dependent? Disabled? These are all things that need to be documented and cleared up otherwise she could have claim on your inheritance (if there is any).
Now is the time if she wants to wright and leave letters for the grandkids and any other friends and family. As time goes on she might want do it but will find it harder the longer she waits. When my family lost my mum she wanted to do this but was to far gone to handle it by the time it came up. So my biggest bit of advice is don’t wait to do anything, the longer it’s put off the harder it gets. Best of luck
My dad has AML and we are entering the last few weeks to months after 18 months of treatment. The leukemia foundation is a tremendous resource. My sister was just speaking with them about how to break the news of dad’s impending death to his grandson. They also helped us along the way with some financial assistance, helping navigate access to support services etc. It’s run by people who really understand the needs of the patient and their family. There are a few of their webinars on YouTube too, they have a lot of topics so there may be some relevant topics. Sorry for your mum’s diagnosis. Fuck cancer. If you have any specific questions that I may be able to answer, feel free to message me.
Legend thanks for reply and also big love to you and your old man
Is your sister unable to care for herself? You may want to get a social worker from the hospital where your mum is being treated to help out with sorting out services early. There can be long waiting lists for carers and assisted living homes for your sister once your mum has to pass on.
Social worker for your sister and mum to support them with keeping up with appointments and self care
Spend as much time together as you can. You won’t get that time back xx
I lost my mum within 9 months of a terminal diagnosis. There's some excellent information here. I will add - funeral. Try to talk to your mum now about here wishes. This was the one thing we didn't talk about, and making the decisions when you're frozen is awful and you second guess everything. Also consider any questions you may have. I wish I had more time to talk to her about her life. I lost her in my mid twenties, and now 10 years on there's so much about her life I want to know but can't.
Put your mother first, your feelings about the situation second. Don't ever let her see you're upset or distressed. Be a rock and help her do whatever she wants and has strength for until the end..make sure eshe knows how much you love and appreciate her.
All the advice you've been given is great, so i don't have much to add. But my partner suggested I write my mum a letter telling her how much I love her. Tell her why, don't hold back, give her examples, make it twenty pages if you have to, and give it to her while she's with you. It was easier for me to tell her how I felt when I wrote it down. It made me reflect on the life she's given me and appreciate her more. But most importantly, it gave her a reminder of my love whenever she needed it. She'll read it more times than you can imagine. All the best going forward, mate.
My bestie (50yr F) has an inoperable tumor on her brain stem, she has about 9 months left. I think the best thing you can do, is simply just be there for her. Be a sounding board for all of her fears and anxiety. Its extremely shitty, and so fcking hard to imagine the world without them, but we have to be strong for them. Apparently constantly talking positively can be super annoying, so i try not to do that now. I just listen and reassure her that everything she is feeling, is valid and what is happening to her is so freaking unfair. I also lost my Mum recently to Dementia, so this one is really kicking me when I am down, but it isn't about the ones that are left here without the loved ones, it about making their journey as stress free as possible.
My Dad died suddenly 3 years ago, there's some things I was really glad he had in place and some I regret he missed: A will - this one should be obvious Solo executor - I was thankfully the sole executor of my dad's estate. My sister is great and it wouldn't have been a legal problem, but a bunch of things need signatures from ALL executors and that can be a logistical nightmare. Money - her accounts will be locked as soon as the banks are notified of her death. Make sure you're ready to handle that, and make sure you know of all her accounts prior to her passing. Probate - getting probate is the turning point from "fuck this sucks" to "ok I can handle this". My experience was that the biggest challenge to this was an unclear Will and a full accounting of the estate's asset's. Set expectations - my dad's was pretty simple, but it was still about 8 months before I could distribute money to people in the will and over a year before I could finish the whole thing. Avoid institutions and govt as much as possible - it's just an absolute pain in the ass to deal with these places as the executor. Anything she can do to clean all that up and consolidate that prior to her passing will save you a lot of heartache. Closing down my dad's business was an absolute ballache, even though it wasn't even trading by the time of his death.
Thanks bro sound advice
Oh also prior to passing: Power of attorney - don't get lulled into the hospital treating you like you're a decision maker just because you're the next of kin, that's just because you're making decisions to prolong her life. When the rubber hits the road and you need to make that final decision, you need power of attorney and even then you're going to need to get ready for a fight. The hardest part will be watching her go, I'm sorry but you'll need to be the strong person in the room or the docs will prolong her life regardless of quality of life. You have to be that strong, probably angry (but polite, always polite) person in the room to ensure she has some dignity at the end.
Lost my dad 10 years ago after a 17 year back and forth tango with Cancer. First case I was 3 years old, and he passed away when I was 25. The cancer came back 8 times from memory. (Brain, bowel, liver, lung... etc). Mum got cancer 3 months ago, and due to that history, it was very easy for us to take it all in stride. She's getting her last round of chemo today, and she's the chatty Kathy lifting everyones spirits. I just want to say to "we can't solve/cure" the problem does have some wiggle room. My dad was told that he had no chance of survival for 3 of his battle with cancer, but in true ASD + ADHD style he said, fuck that, and went all Pluto's bet and tried everything (so did the chemo, surgery... etc), but also did all the functional mushrooms (Reishi, turkey tale are the ones to look at), Ian gauler foundation (in Victoria), meditation, acupuncture blah blah blah hippy dippy stuff and it worked. So I would advise atl east giving all that stuff a chance. At the very least, it would improve the quality of life for the last few months. If you give the immune system and body the best bloody chance, sometimes it's enough. Or at least makes those last few months better.I never paid too much attention to the exact details of what dad did, but he did focus on bringing down inflammation intensely if you are curious about terms to google. I dunno man, bloody Aspergers engineer dad's sometimes just say fuck you to the rules of biology. We obviously didn't know it would work at the time though, and were grateful for all the extra days we squeezed out, so here is how we took it in stride: Be grateful for every day. Video call every day and say you love them, and tell them all the memories that speak gratitude. Just recall all the loving effort she put in when you were young, and reminded her how much she is loved. I know it might make you feel silly at the time, but you'll treasure the memories of sharing your gratitude with her to her years down the track. Take videos and photos of them doing the every day stuff: cooking, cleaning, gardening. Because when the journey continues without them, it's in those quite every day moments that the loss hits you the hardest, and being able to see them again doing every day stuff, it just... I dunno man, I don't really have the words, but take videos and photos of those ever day moments. Just an absurd amount of photos and videos.
Thanks bro appreciate the thoughts and the sharing of your experience
Get in touch with Solaris Care x
Sorry to hear this, leukaemia is a bitch of a disease. I lost my mum to it too. There’s lots of great advice here about the practical stuff (will, executor passwords, house etc) so I’ll go a different angle: - visit as much as you possibly can. You won’t regret it. - your own emotional support. Get a mental health care plan and a psychologist. Anticipatory grief is a thing and come with lots of emotions such as guilt. It’s damn hard seeing a loved on go through this, and having someone to talk to about it will help. Please don’t be stoic or think you’ll be ok. You won’t be ok for a while, but with the right support you can feel ok eventually and minimise the trauma. - “bucket list” items. Your mum might not be up for much, but I’m sure she has some interests and places she likes. If she has some favourite gardens, for example, plan to go visit them together. Maybe it’s going to a restaurant (if she’s well enough) etc. Maybe it’s having fish n chips on the beach. Or getting someone to bring their puppy over. Gives you both something to look forward to. - journal and letters. If she’s up for it, ask her to write down the story of her life. It doesn’t have to be an amazing book-length work, just some reflections and thoughts about her childhood, parenting, friends, career etc. - photos and video. Take photos together, record her hanging out in the backyard talking to the dog or whatever. Don’t hesitate, don’t think it’s weird, just really make an effort to record some of the good times together. Videos on phones weren’t a thing when my mum was sick, and I’d give anything to see some video footage of her now and hear her voice, see her hand gestures and smile etc. - If you’re likely to be with her at the end, ask Palliative care nurses/doctors etc lots of questions about end of life care (privately - she doesn’t need to hear it). There is an episode of Stuff You Should Know (podcast) on the process of dying. It’s a tough listen and they talk about the body in quite a sterile/medical way, but it’s very well done and informative. I wish I had a bit of an understanding of the actual death process prior. We were taking her to emergency when we should have just called palliative care, we were encouraging her to eat (and worrying when she wouldn’t) when we should have let her be… we just honestly didn’t understand the *physical process of death* and what that entails. The process of the body shutting down is predictable in some ways, because it happens to everyone. Knowing the order that things tend to happen may be helpful to alleviate your own distress in that moment and be able to focus on her comfort. Good luck and sorry you are dealing with this.
My mum died from Leukaemia almost 7 years ago. Here’s a practical list. Will (discuss who will be executor, it’s a lot of work) Enduring power of attorney Prepaid/planned funeral. Honestly the best way, then you don’t have to guess what she’d like, she can pick exactly what she wants. Advanced medical directive for end of life decisions. My mother was in a coma on life support at the end and we knew she DIDN’T want to be kept alive on machines. Made everything easier because it was her wishes. Withdraw super now to minimise tax Apply for disability payments from Centrelink Bank accounts (make sure you know all of the So that you can contact them. Withdraw money BEFORE she passes to cover costs) Tax, someone will have to file her last one after she passes so best to see an accountant now so they have all her details Record her talking about her life and memories
One that we learned recently is that bank accounts that are solely in your mother's name will get frozen until a later date (unsure if until estate is sorted or just temporary, wasn't that involved). If your sister has any kind of financial dependency then you may need to take preventative steps now. This could be by adding your sister as joint account holder (may have estate implications) or even just transferring some safety net money for until things settle out.
I'm very sorry to hear the news. Not sure if this is mentioned already but I recall a hospital bedside meeting with lawyers for power of attorney and enduring guardianship for my mother. Wish we did that in a more pleasant setting. Wishing you strength for the difficult journey ahead.
Does she have or need a power of attorney? It sounds like she might need one arranged soon
Make sure you have end of life instructions. Make sure someone has power of attorney. Make sure you've had a discussion about euthanasia.
Lost my b-i-l literally last night after being diagnosed with a very rare form of leukemia under a year ago. It's been hell for my sister having to navigate the medical system for him, and overall the practitioners have been great, but any cancer patient needs a strong advocate. The patient may tend to be passive with medical care which leads to them being forgotten or pushed down lists. With a strong advocate batting for them, they'll receive better and more prompt care. That's what my sister did, being familiar with how the system works. He went through two bone marrow transplants, so much chemo, and so much hope and disappointment. It's been a roller coaster ride of emotions and now it's over, less than ten days since they said he was terminal. I don't envy your journey but wish you all the best.
Sorry to hear this news, this would be devestating for anyone There is a youtuber called Paul In Perth who did a list like this for Jenny Apples' life expectancy diagnosis. It has some good ideas [https://www.youtube.com/watch?v=QZ6EeqY0RNg](https://www.youtube.com/watch?v=QZ6EeqY0RNg)
Please get Will and other legal paperwork sorted and watertight. Speak to your mum about her wishes for your sister and her estate, then get a lawyer to confirm the paperwork supports this. It might sound callous but trying to sort that out post death is a nightmare. Look into insurance policies, benefactors etc as part of that. And please give yourself time to process then grieve. The big C sucks.
Lost a really good friend to cancer two months ago, I don’t have much advice to offer I’m afraid but I just want you to know that I’m so sorry for your mum and your family to have to go through this. I hope she has no suffering and I hope you get to spend some time with her before she passes
I think it’s the better health website that has a checklist of things you will need to think about taking care of when a parents dies. It’s super comprehensive including all the various places you might need to inform. Fully understand the need to be practical - I’m 30 and my dad died a month ago after a cancer diagnosis in December ‘22. Old man had nothing sorted out and I have 4 brothers who are significantly older than me but who were just wrecks and couldn’t do any of it. Never thought I’d be doing it on my own or this early in my life, wish someone had told me to get started when dad got his first serious prognosis
Get a hold of the Cancer Council. Wealth of information and great connections to support of every kind. I speak from recent experience.
Fuck bro, I'm so sorry to hear that
Wishing your mum a whole heap of positivity.
When people ask if they can help, say yes and give them something they can help with.
All the advice here is great, but also ensure she creates an Advanced Care Directive to ensure she is cared for the way she wants when she’s unable to communicate that