So bloody exhausted waiting for someone to die 4

[StiffyByngsDogBartholomew]

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

Thank you for this thread. The first page perfectly summarised where we are: MIL , advanced Parkinson’s / dementia / osteoporosis and 4.5 yrs into nursing care, where she has been doubly incontinent, unable to speak or move, skin and bone. She’s had chest infections in that time, always treated with abs. This time, the home had said that she’s to weak to swallow the abs and they don’t recommend giving then intravenously in her condition, so they’ve been giving morphine and she’s on end-of-life. Yet they continue to encourage her to take complan and water. And it turns out that my SIL and even DH to an extent are actually hoping that they are able to ‘build her back up’ so that she can take the abs! I can understand that they don’t want to lose their mum but she’s already gone and they are supporting her being kept in this horrible limbo. At the same time, of course the home can’t starve her to death if she’s still able to swallow . It’s horribly confusing. After wrestling with it all I think I have to accept that she’s not my mum, and that I will support DH as best I can, whatever he wants.

@rickyrickygrimes

This sounds horrific, my heart goes out to you.

I'm so glad my mum's at home where I can make sure no one is "building her up". One of the HCAs is obsessed about increasing her liquids and would be giving her complan if she could.

It's terribly sad how some people want to keep their patients or loved ones alive at all costs.

Thinking of you xxx

That sounds like a terrible situation @rickyrickygrimes - my heart goes out to you.

My DM is getting to the stage your MIL is at. It’s pitiful to watch and we would not put our beloved pets through this agony.

And yet here we are, going into another New Year.

Thank you both. DH and SIL have been asked to meet with the dr tomorrow: fingers crossed that we will get some resolution that’s in everyone’s best interest.

My DH 95 is now in hospital. The care home thought he'd had a stroke but now maybe a UTI but given his delirium the hospital have decided to keep him in. It's all a bit confused. I will visit tomorrow. Not looking forward to it in terms of what I might find and whether he will know me. I feel upset that being in hospital in a very confused and dementing state must be very scarey for him. Oh dear. I'm wondering if the hospital will know about his POA and living will and DNR wishes.

@rickyrickygrimes I really hope the doctors are sensible and don’t suggest other life extending measures. There certainly seems to be a drive to keep people alive regardless of their quality of life. Although my mother died four years after being diagnosed with Alzheimer’s she might have been spared the last 12 months of complete indignity and distress if the NHS hadn’t persisted in feeding her up and giving her medication to stimulate her appetite.

if the NHS hadn’t persisted in feeding her up and giving her medication to stimulate her appetite.

This is just horrific. What on earth goes through these people's minds???? Keep alive at all costs? It's madness.

I don’t know, it’s baffling. MIL had absolutely had enough but it took endless arguments to get her care home to believe she wouldn’t have wanted any interventions to prolong her life, even though DH and BIL had power of attorney for her.

hope you don’t mind me jumping on here. Been following this as my FIL is on end of life. He has been having strokes - 2 yesterday , and he is remaining at home. He is on end of life plan, but wondered if anyone know if strokes are part of the end of life process ? Sorry this is all new to me and we are alll just overwhelmed. MIL is breaking down on the phone and I just feel I should be doing something, but what to do?

Strokes can be, yes, it depends on other problems. Like for example if your DF has atrial fibrillation (very irregular heartbeat), the blood sits around for too long in buts of the heart, then clots form, which cause strokes. Or a brain tumour could result in more strokes because of problems in the brain blood vessels.

I'm so sorry they are having such a rough time. I hope your df isn't suffering. Would your dm benefit from seeing her GP or a palliative care nurse herself? She must be really struggling.

Thank you for your kind reply. As a family we are all trying to rally round but my MIL is struggling with her MH and is refusing to have more carers round as she finds them intrusive. She said she feels a shadow of herself now she has been a carer for so long.

sadly, i have watched my FIL literally be pumped full of drugs to keep him alive over the last year, and his deterioration has been going on so long, we are all at the end of our rope now watching and waiting. Keeping our fingers crossed for a painless and quick end to my FILs life now, as it’s clear he is suffering. Two strokes in one day and he hasn’t regained full use of his mouth now. He has always been such a sweet soul and watching him like this is just awful.

My MIL died last night - peacefully but quickly - much to all our relief. There was no time to call family to be with her, but the nurses were there and called my SIL straight after. They told my DH today that it was like she just decided enough was enough, and went (which would be very like her).

thank you for the support, and courage to everyone still ‘waiting’.

Condolences @rickyrickygrimes May you always keep your happy memories of your MIL.

Very sorry @rickyrickygrimes. A peaceful death at least, if protracted by idiotic policies and attitudes. 💐

Sending condolences @rickyrickygrimes. Very sad times but your MIL is finally at peace and free from multiple awful and distressing conditions.

So grateful to have found this thread. My grandmother is 102 and a narcissist of the worst kind. She lives alone at home, bed-bound with two carers four times a day. My dm, 82 and uncle, 78, do all the cleaning and shopping but now my uncle is in hospital with a heart attack. Mum is falling apart trying to juggle and also be there for my elderly df 82 who is a bit frail. Does anyone know if there is any way to organise respite for the old witch? We are in Scotland.

Yes, what a relief for you! Sending much love xxx

Sending you condolences @rickyrickygrimes

@HellsBells67 I’m not in Scotland but presumably there’s an equivalent of adult social services that are aware of her situation? They should be able to help I would have thought.

If you contact your local social work department they should be able to organise respite - and hopefully for the sake of your poor parents and uncle - a permanent place in a care home. Do you know if she already has a social worker or who is the contact for the care package she already has?

Also in Scotland, and finding arranging any sort of care almost impossible. My mum is unable to walk unaided (by someone), and can’t climb the few stairs down to her kitchen. After 5 weeks we’ve managed to get on care visit a day, for 15 minutes at 11am. Utterly hopeless.

What we’ve found is that there has to be a crisis of some sort before any action will be taken. A fall or a delirium that lands them in hospital is more likely to be an opportunity to insist that more care be put in place. If there is even a hint that family will step / has stepped in, social services will back off and your parent will move down the priority list.

FIL (also Scotland) had a fall recently followed by two days in hospital. DH and SIL refused to accept discharge without care being in place - he’s very frail, confused / dementia - and it has happened very quickly. Hospital to Home care has been put in place to bridge the gap / assess (and get him out of hospital asap), and the local authority will kick in very soon with 3 x day visits, OT assessment at home etc.

OTOH my uncle (elderly but also disabled / in a wheel chair) has been told there are no carers available to help him despite him being assessed as needing 2-3 visits a day. My aunt continues to struggle on - as long as she does this, they won’t be prioritised. It’s a crappy Catch 22 as no one wants to leave their loved one in a dangerous situation.

Hi everyone. Sorry big rant coming.

My mum passed away last spring, sudden cardiac arrest, before Alzheimer's truly set in. I'm still so sad and trying to climb through the grief. I've barely got energy for myself and my family .

However, suddenly now, it's MIL I am worried about but my brain can barely cope. Whereas mum allowed me to help, and would listen to us, so everything could be simplified for her quality of life, MIL is just defying everything.
She is having more and more accidents in her car, to the point police also impounded the car as she'd not renewed her licence. Two accidents in 2 months and insurance co are fed up.

Clearly sense of perception is changing, can't see but insists she can drive yet keeps having accidents in the car. She's naturally accident prone herself falling over a lot which has been a life long issue. Fell again recently hurting her face but nothing major thankfully, my husband was with her, nothing tripped her she simply fell walking into her home.
Lives in this huge house she's not maintaining and never considered those costs when buying so it's collapsing around her. Refuses to talk about selling to free up cash.
Won't listen to anyone with advice these past few years, yet now she*t is hitting the fan expects us to drop everything upon each drama that 'keeps happening to her '.
Thousands of pounds in debt and doesn't care, only able to eat because of food bank support plus hasn't put money aside for old age and only receives a few hundred pension per month.

Mum did live with us a few years, contributed to bills and very social, but it was because she had a terminal disease and couldn't manage on her own, neither of which is the case with MIL, but DH recently said 'well, unless she comes to live with us' in terms of what to do. I reminded him his mum has her health, and can sell up to enjoy life, live somewhere much much smaller and afford things like carers eventually that way.
This is filling my head and they both just circle around not making any decisions or having Real conversations, when I already know how bad it could get and quickly. She's one fall or accident away from destitution or death but even now refusing to talk about options.
I'm exhausted and so is husband because she's so stubborn , ignoring us, and he's got no PoA for example.

Not sure what I'm asking for but just venting because I'm so tired and still grieving and can't really handle this on top. I'm scared he'll lose her, with no plans in place or important conversations or documents because she's a hoarder as well. That she'll end up here simply because she's made no plans for herself at all and still won't.

nodramamama my sympathies. I always think that it takes a triangulation approach in driving difficult messages home. Two options - one like an intervention where several family members come together and force the message you can't go in like this, you need to give up driving, down size to a nicer more manageable home and hopefully free up cash for living expenses and care in future. Best to have a dangle of something nicer - an example of a pretty flat or house either with special features or local amenities. The second is getting someone else with authority - friend, vicar, doctor, social worker - who can independently insist they address the issue and face up to making change.

The only other way I can imagine working is to say we refuse to facilitate you until you make changes - but that's harsh.

In other news my DF 95 is back in his care home very weak and frail after his admittance to hospital, infection and sepsis. We were told we were in end of life territory and he was dispatched with a palliative care package but has since rallied somewhat out of hospital (not surprising it was horrid). We have no way of knowing if he will continue to rally, take a sudden downturn or linger for months and then die. His delusions have been interesting especially when he thought there was a river flowing through the hospital ward, was looking for a parking voucher so we could head off for lunch in Oxford and that he'd been elected as mayor!

Thank you , sadly he's an only child, no other family members to help and she's not got any real friends and doesn't consider meeting for coffee or hobbies very interesting, and as such quite difficult and insular. Any friends she did have she's annoyed because she's blunt or ignored advice and they've distanced themselves.

She has nothing really wrong so doctors can't really help I don't think unless we can get her to to an Alzheimer's test (in our kitchen the other day she stood in front of our coffee machine waiting for toast to pop, saying she forgot where our toaster was after coming here for 14 years, plus other things going on, so I'm definitely worried).