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Caring for elderly relatives? Supercarers can help

Need help/advice for termnally ill Mum please

12 replies

Earlybird · 26/12/2007 12:34

Forgive me for cutting/pasting text from another topic, but thought I'd also post here in case the Mumsnet 'ignore' facility causes those who could help/advise to miss my other post.....

In a nutshell: Mum's cancer came back, and since late October she's been having chemotherapy. She was due to have 9 sessions, and has had 4. One was cancelled due to her being too ill, and the most recent session was cancelled due to her general poor condition. In fact, the doctor took one look at her and put her straight in hospital.

When Mum went into hospital 6 days ago, we were told a day later by the holiday rota doctor (not her own), that 'it won't be long now' and 'make sure her affairs are in order'. The immediate problem - soaring calcium levels - has been dealt with. But Mum is anxious, paranoid, hallucinating (thinks there are bugs crawling on her bed, thinks she's all alone/hungry, etc), grumpy/angry and even aggressive (cursed at the nurse and refused to allow blood to be taken for a test the doctor ordered), and extremely maudlin (long monologues detailing/repeating unhappy scenes from her unhappy marriage).

Yesterday was the first day back for Mum's regular doctor who told my sister that there would be no more chemotherapy as Mum isn't strong enough to continue - ever, at this point. The doctor also said that Mum will probably be discharged from hospital in another 4 or 5 days, but that she will not be strong enough/well enough to return home. Even if she could go home, it is clear her condition will deteriorate, and anyway her dp couldn't/shouldn't be expected to provide care for someone in a serious/worsening medical condition.

So, we have been advised that hospital staff/social workers will help us locate a facility for Mum to go to........where she'll be given the medical care she needs until she dies.

My basic questions are these:

  1. What do we look for in a facility (presume we're looking for a nursing home?)? We'll be given a list of places that have space available, and will probably spend a day later this week visiting/looking. What are specific questions to ask, or what should we look for in a 'good' facility? (Hollywood horror images of grubby facilities with cruel staff fill my brain, atm)
  1. What do we say to Mum? She is forcefully demanding to go home, so it is clear she is unaware of her condition/future prospects. She's been in serious condition in hospital quite a few times before, and has always managed a miraculous recovery/return to her old routine. But that doesn't look likely this time. As far as I'm aware, she has never spoken to my sisters about 'what if' this scenario were to occur (we're not very close, so it is not the sort of conversation she would have had with me).
  1. Any general thoughts/advice from anyone who has been through this? Things you're glad you did/things you wish you'd known and/or thought of? Any helpful books?

Final relevant info: we're not in the UK, and I'm 4 hours drive away from Mum and sisters, but as the 'practical' one of the family will probably be sorting some/most of this out long distance and via visits. Later today, I plan to call a palliative care center to find out more. I have also been advised that there are no 'live in' hospices available in the city where Mum lives. And then of course - apart from what we'd 'like', and what seems 'right' - there is the issue of expense, and how it will be paid for (unclear about what, if anything, insurance will cover).

I really don't know where to begin, but of course want to ensure Mum is well taken care of. Don't want to be accused of (or feel guilty about) 'shoving her into a nursing home', but am unsure of what else (if anything) is practical/possible........thanks for reading and any practical/emotional advice much appreciated.

OP posts:
justaboutfullofXmaspudding · 26/12/2007 12:41

This reply has been deleted

Message withdrawn at poster's request.

mylittleponey · 26/12/2007 12:41

sorry this is happening to you.

check costs of the home. If your mum has assets over 22,000 £ I think she has to pay full costs? Sounds hard but get the financial costs sorted & see if there are any benefits you could claim. Follow it all up yourself - don't expect anyone to really help you.

mylittleponey · 26/12/2007 12:43

check out www.helptheaged.org.uk/en-gb/AdviceSupport/HousingChoices/CareHomes/default.htm

plus carehomes all have reports online

WideWebWitch · 26/12/2007 12:44

Oh god, poor you. My dad died in 2001, 3 weeks from diagnosis from death and we were told towards the end that only palliative care would be able to be offered. So I've been there and can tell you what happened/what was useful for us.

  1. Facility. I don't know but the local hospice (Bristol) told us they didn't actually take people about to die (weird huh? That's what I thought they did) but in the event he died in hospital before we could get him to one. This could happen in your case by the sound of it. Sorry, but it sounds a possibility.
  1. What to say to her. Tell her you love her. Make sure there's nothing unsaid (if approprate/realistic). We had a big party in a smart hotel with Champagne and canapes and a visitors book, all filmed etc and all my dad's friends and family came to pay tribute and say goodbye. It was very moving. But this may not work for everyone. I would make it clear to those close to her that they might want to see her. You don't have to say she's dying unless you want to, altohugh we did and made it clear to people that this was their last chance to see him. 150 people came.
  1. It's bloody hard. Be nice to yourself too. Be aware that people behave badly when they're grief stricken so try to accept that. Dad signed a will in hospital so we could deal with his overdraft. You should make sure she's got one or you won't be able to do a thing.

I'm so sorry, this is a very tough thing to deal with. And some people get practical and others can't so bear that in mind. Wishing you strength to deal with this and HTH.

WideWebWitch · 26/12/2007 12:46

And see about getting your own support system in place if you can. A friend or relative who's not directly involved who can help wtih children/kindness/listening to you when you need it.

foxinsocks · 26/12/2007 12:47

I'm sorry Earlybird. Which country are you in?

MeMySonAndI · 26/12/2007 12:47

Sorry to hear things have come to this point.

I have noticed that every country has different systems and expectations to cope with their terminally ill patients, so it would help if you said which country your mum is in. Perhaps somebody will come in with more information specific to the country of residence?

Earlybird · 26/12/2007 14:07

We're in America.

OP posts:
MKG · 26/12/2007 14:35

Earlybird,

I'm also in the US.

When we were told that my father didn't have long to live (also cancer, we were told about 2 weeks) we decided to do home hospice care. It's a lot of work, but to be honest it was wonderful. He was at home and had visitors every day. The hospice nurse showed my mom all the medication my dad needed, and showed her how to administer it so he wasn't surrounded by doctors all the time.

It was a lot of work, but the day he passed he was surrounded by family and friends. If this is an option for you, please consider it.

Earlybird · 26/12/2007 15:49

MKG - what you describe sounds a wonderful way of handling your father's last days. Mum is widowed and her companion/friend is really just a housemate - no romantic relationship - so don't think medicine admin is part of what we could ask.

What makes this more difficult is the timing - especially information gathering, which is nearly impossible as we're in the middle of the holidays. People simply aren't around atm. Makes it extremely tough to explore options/move toward a decision.

OP posts:
MKG · 26/12/2007 16:59

I feel for you. My father passed away Dec. 21st 2004. So I understand how tough it is. I believe that my mom learned to do that just to cut down on the amount of nurses in the house. You could have a full time nurse though. I hope that you are doing well, and have a lot of support in this terrible time.

deste · 08/01/2008 22:45

I took comfort from taking my mother home where she wanted to be. We did not want her to die in hospital. Her death notice in the paper said she died peacefully at home and when I read that I felt so glad that she did surrounded by her familly. I also could not admit to my mother she was dying, I just could not say the words.

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