So bloody exhausted waiting for someone to die 4

Have people seen this thread?
https://www.mumsnet.com/talk/elderly_parents/5220024-dnr

@coffeemonster28 sorry for your loss. Hope you're managing all the admin and funeral arrangements ok.

Thanks to eveyone for the kind messages as well, this board has been such a support over the last two months. Wish I'd found it years ago.

I find accounts of terminal lucidity, where a person (usually with dementia but sometimes other conditions where they seem a shadow of their former selves) suddenly alters in the final days or hours of their life and speaks again and recognises people, very odd but weirdly comforting. Something science can't really explain, but it seems to suggest that the essence of the person isn't destroyed by the brain disease

Yes. I've nursed and sat with many dying patients, and I've seen this over and over again.

Even people with extreme dementia can seem lucid for a couple of hours prior to their death.

Or they look at you, and you can see real comprehension in their eyes, a comprehension which has been absent for literally years. I do find that to be a comfort.

So sorry for your loss @coffeemonster28, I'm a new recruit to the boards - though I've been lurking for a year or so - and its reassuring to hear so many people say what a sanctuary this place has been.

So glad that you feel you have peace now, the relief must be immense.

I've been mostly reading posts rather than contributing to the board but coming on here to say that I have sadly "graduated" this morning after 5 very long years ever since my parents in law moved back to the UK after enjoying 16 years in the south of France. The board kept me sane as my MIL was going through cancer and died two years ago, my father in law followed this morning to be with her after 18 months in a care home with mixed dementia, with multiple hospital admissions and "prepare yourselves" conversations (sepsis, stroke, infection after infection, you name it). The virtual support from the board and the stories have been an amazing source of support and just wanted to send a massive collective thank you to everyone. Waiting for someone to die has been bloody exhausting and so tough but there is a profound sense of peace and relief for me, and at least I found a place where I can say that and be understood.

And I’m so sorry that you’ve lost your grandmother @PatchworkOwl, I remember very well those mixed feelings of being glad they’re no longer suffering but missing the person they were before when my grandmother died of dementia. Sending you the warmest of wishes.

Thank you @TomatoPotato 😊I am lucky to have some wonderful friends who have been a huge support, but I’m always wary of overloading them - sometimes it feels my life is a constant soap opera! This thread has helped me to feel less alone, even though it’s heartbreaking to see how many of us there are dealing with these issues.

Sorry for your loss @PatchworkOwl.

Re your comment These last few years have been utterly draining, losing her piece by piece. She believed in heaven, I hope she's whole again there.

I find accounts of terminal lucidity, where a person (usually with dementia but sometimes other conditions where they seem a shadow of their former selves) suddenly alters in the final days or hours of their life and speaks again and recognises people, very odd but weirdly comforting. Something science can't really explain, but it seems to suggest that the essence of the person isn't destroyed by the brain disease.

So sorry for your loss @PatchworkOwl

I’ve had a message from my mum asking if I can call the hospital about my dad’s latest PSA test. His levels were elevated (he has prostate cancer but it’s slow growing) and he refused a prostate exam. They want him to have another test in 6 weeks (he was on a 12 week testing regime) but there’s been confusion about whether having the catheter removed then refitted might cause issues - I was told by a nurse that having a catheter fitted can trigger an immune response in some men which will show up in a PSA test. The letter also says that if the levels are elevated again they want him fast tracked for further investigations.

Both my parents wear hearing aids so they really struggle on the phone.

Gosh Skade that's so much to deal with. I am sorry. Please don't feel guilty about how much you visit - it seems to encompass every emotion - fear, anger, hurt, guilt and sadness. I think everyone would be reluctant or fearful about visiting in those circumstances. I'm sure most people would find it hard to go once a month.

And however harsh it sounds it seems like she won't be aware of how often you are there - she's not fully there herself. So cut yourself a bunch of slack. We all just do the best we can. In painful circumstances.

That sounds an awful situation @Skade especially as your support network has gone. Do you have any friends who you can offload to? Welcome to the thread x

Hi all, I’ve been reading this thread for a while but finally plucked up the courage to join in, I hope that’s okay! My mum is only 72 but was diagnosed with early onset Alzheimer’s at 62. She was manageable until the start of last year and then suddenly seemed to just fall off a cliff, within 4 months she was in residential care, then hospital, then under section for 9 months. She’s now in a wonderful (and very expensive) dementia nursing home, and I know I am incredibly lucky compared to some but she is fully funded with continuing NHS healthcare.

My dad died of alcoholic liver disease 7 years ago at the age of 66. I am going through a very bitter divorce after 35 years of being with my ex-H, and his entire family cut me off overnight when he left. All I have left is my stepfather and my two wonderful adult sons.

My stepfather visits my mum every day. I do not. I feel so guilty to say that I hate seeing her. We never had a close relationship as she is on the autistic spectrum and was not great with expressing her emotions. She was the most incredibly intelligent woman (had three degrees!) and to see her as she is now devastates me. She is still mobile and incredibly aggressive- in the last year she has bitten me, punched me, broken my rib, you name it. I try to see her once a month but every time I leave her I sit in the car and cry with guilt and sorrow. I find myself hoping that an infection will take her away peacefully and then I feel worse, and my stepdad and I often disagree because he loves her so much he can’t bear to agree to just keeping her comfortable if an infection appears, and insists on antibiotics.

This thread has made me realise I’m not alone, and that I’m not evil for thinking the things I think, so I wanted to say thank you to all of you for contributing. I hope it’s okay to continue checking in from time to time.

I am sorry for your loss @PatchworkOwl. Remember them how they were and all the good memories.

Re earlier comments, I agree that things do get easier when someone goes into a care home re running the house, food,care etc. During COVID I was the only one of my family who 'bubbled' up with my Dad. I was there twice a week bringing his food, looking out for him, sorting out health and admin and cutting his hair. After Covid it was a decline - he never went to the supermarket again or left the premises, he started having more and more falls, carers came in but in the end he was no longer safe to live independently. Then moving him was a lot of work, selling the flat and clearing it all. So it was a relief at first to get him into a home and have all the housekeeping, medication management, doctors and hospitals, food and upkeep taken care of.

But of course at the same time my Dad's decline was speeding up - (that's why he went in) and the paranoia and anxiety that accompanied his loss of liberty and independence carries with it other emotional stress. Just trying to keep him in a better mood and distracting him is so hard - and his slightly nuts delusions are interesting to handle. Poor man. I don't resent it. But I'd like it to be over for him and his dignity.

@PatchworkOwl So sorry to hear about your grandmother. It’s a huge loss for you and Alzheimer’s is a hideous and cruel disease. I like to think of people being at peace once they’re released from the torment that dementia brings. I hope you get support in the period ahead dealing with the funeral
and all the admin that occurs following a death. Take care and give yourself time and space to grieve.

You might find you get quite poorly with a cold/flu and have to stay in bed for a while. It’s similar to when people work hard up to the holiday and then become ill as soon as they get on the plane (my DH does this all the time). It’s your body’s way of releasing the tension, the emotion and the grief. Look after yourself 💐

I am so sorry @PatchworkOwl. I went through very similar a couple of weeks ago with my mum. I know exact what you mean about hoping wherever she is now, she is herself there, the person I grew up with, not the broken shadow of a person she became.

@PatchworkOwl I'm so sorry to read of your loss.
At least she is finally at peace, and you can remember her as she was before she developed dementia. It's a cruel disease.

@TomatoPotato

Thank you. It'll be a while before I'm able to properly reflect on the last few years, especially the last few months. They've been utterly brutal at times. I wonder when I'll stop feeling so exhausted?

I’m sorry to read this and here’s a massive hug ((((hug))). At least she’s at peace now. And yes, try to remember the wonderful woman that she was.

Just coming by to let you know that my grandmother has passed away. She had a slow and steady decline with dementia over about 10 years, with various health crisis along the way. There were some good times and some very bad ones.

The last two months she had a sharp decline and was bed bound and mostly non-responsive. Visits were increasingly heart breaking.

It was her time to go, and I'm glad she's no longer suffering. But I think back and miss who she was before dementia. She had a huge hand in bringing me up and I was so lucky to have her in my life. (I am her next of kin, my mother is already dead).

These last few years have been utterly draining, losing her piece by piece. She believed in heaven, I hope she's whole again there.

Things do get better when your parent moves into residential/nursing care - sort of sadder but calmer, when you realise you've not got to shoulder the responsibility of running another household, buying the groceries, ordering the meds...I have my mother's house cleared now and time to get it sold, though that's probably another nightmare. The extreme weather we're having atm is a worry between potential storm damage and freezing temperatures, I just wish I was shot of it.

The care home has finally accepted that MIL shouldn’t go into hospital but should be made as comfortable as possible if she develops any co-morbidities. But she’s nails so I think we have to wait for the dementia to take its course.

Checking in to the new thread. Admin hassle here this week, the solicitor for MIL’s house sale wants the original PoA or a copy certified on every page, and naturally the estate agent has lost the certified copy we had. Over my dead body are we letting the original out of our hands, so off to the solicitor to get two more copies certified. Banks can check them online but either solicitors don’t have access to that system or this firm won’t do it.

, @SunshineSky81 . It’s so hard, and you can’t do all of it. I feel guilty about MIL but she started to decline in 2019 when DD was 8 - DD is 14 now, and in my bleaker moments I think MIL will outlive us all. I feel bad about her having had to go into a home, and had carers before that, but the alternative would have been to sacrifice everything we might have done with DD, and she had to come first.

I have been very clear with my father's care home and his GP before that that we would not want invasive exploration, diagnosis or treatment for cancer or other serious conditions. My Dad is 95 and talks about wanting to die every time I see him - what is the point? He has to die of something and NHS services are over subscribed.