What happens with care? TW - death wish

[DogDaysNeverEnd]

Sorry, this is long but I don't know who else to ask.

My grandma is 92 and is not well, but not from illness. She's quite well in her body, but her mind is playing tricks on her. She lives alone (grandad passed away 30 years ago) and now has 4 carers a day visiting. Some days she's fine, other days the calls come at all hours asking why we haven't visited or why the carer hasn't been yet (at 4am) or why it's dark (at 4am). She's saying she will stand in the road and shout for help (she probably couldn't physically get out the door but who knows if she was determined) and she almost set fire to the kitchen by leaving food under the grill last week. Her son (my dad) disconnected the cooker as the carers do food in the mircowave/leave cold food. She's also refusing food and only eating very little. She has occasional incontinence that we as family sort out or the carers depending who visits first. She is super stubborn, it took months to agree to any care help and she was adamant she doesn't want to go into care, although that might be wavering.

She desperately wants to die, sorry if that's hard on anyone, it is on her and us as a family as we stand by helpless. All her friends have passed, she never leaves the house which was her choice for several years but now it would be incredibly difficult. She reminisces, always has really, but now that is genuinely all she has. Her problem is her body is seemingly stronger than she would like. She's fallen twice and not called for help, I think because she hopes it's the end. This is devastating and painful and there is nothing we can say to make it better because there is no better. My 70 year old dad is now sick with the worry of it all. I'm sad for them both and feel utterly helpless.

Social services said they will do an assessment within 2 weeks to see if she needs 24hr care. Can anyone tell me how that happens? If they catch her on a good day she can be fine, and she fibs because even though she sort of knows she needs help she still won't admit it and she has no memory of the "episodes" when she's confused about everything. What are the options following assessment and can she be made to accept care/go into residential for her safety? Can we do anything nice for her? She has photo albums next to her and 2 family, 1 neighbour visiting every day but she cant see to read, has arthritis and can't hold a pen/knitting that she used to like and cant really focus on a film. She has a "dementia" clock but doesn't believe it when she's out of it.

Any advice or websites etc on the process or ways to support her appreciated. I can't do much but if I have info I can maybe reassure/support.

You are a wonderful granddaughter and I am sure you are a great support to your father as well. Unfortunately your grandmother sounds very much like my mother was at a much younger age. She would phone me in the early hours to say that she was sitting on her bed waiting for the carers and had been for two hours so could I come and get her up. This would be in the early hours of the morning. She had a "gro clock" but never knew whether it was morning or night. She wouldn't look out the window to see whether it was day or night.

A lot of people here have found that you only really get support when things reach crisis point. Two weeks is a long time to wait for an assessment to get things moving. It might help to raise a safeguarding concern with the GP and with the local council, especially as she is falling and threatening to wander into the road. I really hope you can get the help you all need soon.

I’m sorry @DogDaysNeverEnd , I don’t have much advice to offer, only sympathy. Your best hope is a sympathetic social assessment that recommends a move to some form of residential care. they will visit her at home and spend some time with her (about an hour in our case) talking to her about her life and how she manages various tasks and some gently probing to see whether she understands the consequences of what she’s saying. It helps if there’s at least one family member present who can correct any self delusion about how they are managing, and if you can keep a record of examples of when she’s had episodes that will help enormously. Social services will then signpost you in the right direction, depending on whether she’s dependent on them for funding or whether she’d be self-funding (eg by selling her house).

It’s really hard if your elderly relative is judged to have enough capacity to refuse that move as I have found, because while they can express a wish to stay at home they don’t really have the capacity to understand the stress the rest of the family is under.

One of my grandmother’s was like this and eventually had a big fall and died. She had an emergency button - I think she didn’t press it on purpose. The other died at 95 in a care home- she was depressed for the last 5 years of her life. Cried every time I visited her. It is heartbreaking and inhumane that our laws don’t let people die peacefully if they have had enough. Once they lose capacity though there is not much you can do legally. It can be heartbreaking.
It is also really difficult for family as nobody wants to tell a doctor to not treat a simple infection etc and I doubt they would listen anyway.

I see a lot of elderly people - some want to live for as long as possible, some really don't.

To me what is most important is that you and everyone caring for her (professional as well as family) and especially whoever has POA for her health and wellbeing respect her wishes, which I assume are to prioritise comfort and quality of live over living as long as possible.

Is there any written record of her wishes for her future healthcare (not personal care)? Does she have an advance decision? What medication is she taking?

If nothing else, ask her GP if they can complete a ReSPECT form for her, so in an emergency her wishes are known and decisions can be made based on those.

So sorry to read this OP. Am going through very similar with my 91 yr old DM though she is now in hospice care at an old people’s home after finally being forced to accept it was necessary after several scary episodes.

Problem is moving when a crisis point has been reached is really not optimal even in the case of someone who wants a quick exit, like your GM and my DM.

Is there no way a family member can be present for the assessment ? This would seem vital if the objective is to get accurate information. I guess you are in the UK where it seems as if the added complication is the SS and NHS will do all in their power to shirk responsibility at the slightest pretext and shift duties back onto family.

Your post was very moving with your love and care for your GM very evident. She won’t know it now, but she probably used to know how lucky she is.

Has your grandma had a memory assessment? That she doesn't know why it's dark at 4am or forgets you visited the day before suggests she has some dementia.

Either way she may still have capacity to make decisions and feeling that you would be OK about dying is very very common in the frail elderly.

Do any of you have Power of Attorney for Health, if not I would get it for her closest relative ASAP so they can advocate her wishes not to have lots of treatment.

I'd also ask her GP to make an advance care plan, to reflect her wishes about what she wants in the future.

I'm so sorry to hear this, how stressful.

It does sound as if residential care would be a lot easier on you all, but if she's had enough, it is really important to talk that through with everyone at the home - the manager, the nurses and in particular the GP. It isn't actually true that they have to treat infections etc but bloody hell you have to fight like dogs to get your loved one's obvious wishes respected. I would say it took 18 months to really get my mother's wishes respected and in her record permanently (they have a tendency just to reopen all the decisions without telling you as soon as one episode is over), with hospital definitely not happening, antibiotics 'as needed' definitively crossed off her chart and end of life drugs prescribed. My sister and I are hard faced bitches about this now and will fight anyone, because the system cares only about itself and not about the wellbeing of my poor mum.

So think very carefully before you press for residential care; but nonetheless it might be the right thing. If she has a fall though and dies in her own home I think most would prefer that tbh.

Thank you all for the replies and I'm sorry, but not surprised, to hear this isn't such an unusual situation. Its heartbreaking and also pretty cruel at times.

My dad has been sick with a viral infection and hasn't been able to follow up with SS. Yes we are in England. She has a "do not resuscitate" order in place I believe after a short hospital stay last year. Not sure if my dad as POA for health, will ask.

The GP was called a few weeks ago but apparently refused a visit because my gran turned down a kidney health screen a couple of years ago. I want to think they can't do that but that was the reason given. I need to chase that up. My gran has lost her hearing aids and now we can't even communicate, it's just ridiculous. Waiting to hear still about the assessment. I'll tell my dad about the memory check and see if we can get that, but at the moment my gran is effectively deaf so it's a battle to do anything. At 70 my dad at least is retired and has some time to follow up but he's floundering not knowing who does what and who to ask. Plus he has his own health issues.

I wish there was a "one stop shop" for elderly care. It's draining chasing all the different services and support she needs, although we are super glad any of it exists. It's hard to know where she would best be at this point. I respect her wish to die at home, but it really doesn't see to be doing her any good waiting for that to happen.

Thank you again, I'm going to read the replies back and make sure I take all the advice on board.

Sorry can I ask, is the treatment plan or asking not to be treated in addition to the "do not resuscitate"? I mean, the GP won't even visit so she's not getting medical care anyway, so perhaps not an issue...

I do wonder if some of her confusion is down to low level illness/electrolyte imbalance etc rather than full blown dementia. She hasn't had any medical care since last year in hospital when she had a UTI and had to have her phone taken off her because she was calling the police saying she was kidnapped. Maybe her confusion is a bit of illness too? If she could get a health check we might know more, will follow that up today.

It is very common for infections to cause confusion or delirium in elderly people. The loss of the hearing aids will also be adding to the confusion.

DNACPR is only about not attempting to restart the heart if it stops. Palliative care is completely different.

My sympathies. Mum is 88 and lives alone but increasingly unable to cope. She has a carer in the mornings to shower and dress her,and meals on wheels and a cleaner, but its not enough. She called me at 8pm last night to say all the lights in the house were out and she was sitting in the dark.( there had been an electrical fault recently so this wasnt impossible). I was working late,a 40 min drive away. Raced down the road fearing her falling to find her watching tv with her lamp on and all lights working. She insisted it had been dark and even the lights in the garden were off - they are solar! No power cut as everything working fine. She had also wet and soiled herself.
We have a meeting with social work this afternoon to look at " options". It is soul destroying but we cant go on like this.

Are you nearby? Can you take her to the gp?

Dnacpr is only about attempts to resuscitate her - Ie once she is not breathing and her heart is not beating. It absolutely does not cover any other treatment at all.

This is a really difficult situation, and to be honest I think you can only influence it if you are very involved/hands on with your gran.

Another GP has agreed to do a home visit, so that's some good news. We will be making a complaint about the first who refused care, because that's ridiculous.

Told my dad about the respect plans and he will try and be there when gp visits. At least they can start the conversation. He's also going to log her memory loss episodes and when she calls at odd times so we have a record. Today she explained how she'd been visiting her friend who died 10 years ago. It would be funny if it wasn't so terribly sad for her.

Turns out my gran has lost her hearing aids and bottom teeth... So that's going to be a fun game searching the house. There are no home visits for hearing aids or teeth so somehow we have to get a not at all frail but immobile elderly women to 2 different appointments to get her sorted. I don't how we will get her in the car.

Again, sympathy to anyone else facing this battle and thanks for the support.

@DogDaysNeverEnd where are you? Specsavers do home visits ( hearing and sight) We also found an excellent taxi service locally that can get anybody anywhere (for a fee, but not as expensive as you might expect)

She probably needs her own wheelchair for the taxi service though

Thank you @Thunderinglightly , will check out Specsavers. The good news in some ways is that my gran has conceded that a home might be the best place for her. Now waiting to see what the availability is like.

Her needs are becoming too great to manage well at home, she needs more immediate care including more access to medical assessment it seems.

That is good news indeed.

Can you start viewing nearby homes to get an idea of where you like/where has availability? Will she be self funding? Think about what location you would like to make it most convenient for people to visit.