Vascular dementia and home care. What next? Please.

[whatsupsis]

I am looking for anyone who has been in this position and what happened.

Mother lives in a bungalow alone. She has Vascular dementia and the decline since Feb was rapid. She went from being fairly independent to being bed bound and not moving (except for right arm) with in 7 months.

She has carers 4 times per day and me and siblings go every day too. She has a hospital air bed and a hoist and is very well looked after.

My issue is at what point do we need to look at nursing care? She is ok at home because she isn’t deemed at risk because she is in bed all day.

Social workers are happy to have her at home. I just worry what happens when she can’t give herself a drink. The carers have to feed her and I provide puree meals. She just keeps dropping her drinks. If we aren’t there they spill on floor or bed. Then she is with out a drink.

She is adamant she wants to stay at home. But when does that decision have to be made? Or what is the next step?
Thanks.

Medically, is she stable?
Do you think she has capacity to decide that if she stays at home, she might not get enough to drink, that this might shorten her life and give her more infections etc?

Personally I would try not to worry too much if she is having drinks with the carers - remember that meals include fluid too, especially puréed meals. Older people seem to survive on very little fluid. If literally the only thing that you are worried about is that she might not drink enough, and there’s no real sign of that damaging her, then imo this is more about your grief and stress in such a horrible situation, than a really big issue right now.

Also - she is going to decline further. A bit more to drink might not change that tbh. But if you are finding the stress of all this impossible, and I see why, then talk to social services about what would trigger them to consider 24 hour care.

I’m only worried that she’s alone for periods of time. We spend time there with her but really she’s alone a lot. She is very stable medically and we have strict handwashing in place so she’s never had Covid and she hasn’t had a cold in about 2 years.

I think I’m just worried she’s alone. When I mentioned that to one of the carers she told me she is getting more attention now than she would in a care home. We have Alexa set up so she can talk to us if she needs to and the house has cameras inside and out. I think I feel guilty.

I wish someone could tell me what the deterioration would be and how long she has left. She must be bored stupid.

I asked on a similar thread. My mum was provisionally diagnosed with VD around 3 weeks ago. Her downturn has been rapid and she has been in hospital a lot. She ended up coming back to hospital with dehydration as she was not drinking at all.

could she have a beaker on some sort of neck chain - so if she drops it it won’t go far?

the problem is getting a beaker which doesn’t spill of dropped. She can only drink from a straw and so if dropped the air inlet leaks. It’s not even just dropping it, she often won’t even drink because the effort is too much. I think her arm will stop moving soon.

I’m sorry. My mums has been very quick but she has a lot of chest infections and other issues. It was horrible seeing my mum in bed unable to move or talk.

Whilst you are propping up the care it will continue. Surely no parent would want this life indefinitely for their busy adult DC with jobs and families of their own? She’s happy for you to live like this??!!
I would inform social services and step away. A crisis you force might be the only scenario that moves things on and you can reclaim your lives.
The wants of someone toward the end of life don’t trump those of others in the prime of theirs.
If she owns her property this will fund her fees.

i think the carer is correct. If she was in a nursing home they aren’t in the room all the time. You have my sympathy as my mother was immobile and had carers four times a day and I basically had to be there all the time that they weren’t. Make sure you take time time for yourself.

@Rocknrollstaris your mum still with us? What is her condition?

If she becomes violent you will be told she needs to go into a suitable home. X

If she's bedbound and stable, and all of you are happy with the arrangement it's perfectly possible to stay at home until end of life.

The most difficult time with dementia is often when the person is walking around, falling over, getting lost, turning the gas on etc.

Even if she were in a care home, they would not be in her room all the time. Or entertaining her for long periods of the day.

I wouldn't think of her as 'being bored stupid' as her brain now works in an entirely different way to before, if she's generally happy and not frustrated then I doubt she is bored.

It likely is time, if you haven't already, to discuss with her GP whether she needs all her medication, getting rid of hospital appointments and avoiding hospital admissions.

As long as she is safe at home, she's probably happier there than on the dementia unit of a care home, which in my limited experience is horrific (like Bedlam).

However, if at any point you're not sure of her safety, think again.

As @AnnaMagnani says, I wouldn't worry about "loneliness" as her mind is not functioning the way it normally would. Being in familiar surroundings is important, as feeling completely disorientated in a different environment can hasten the confusion and decline.

None of this is easy OP, sorry you're facing this. 💗

Yes FIL was in an excellent care home but they absolutely couldn't stop other residents wandering in and out of his room and constantly nicking his socks.

TBF when he was wandering, he probably nicked socks as well.

OP, please be aware that not everyone shares this view that dementia units are like "bedlam." My experience with LOs on dementia units doesn't match this poster's. Some of them are wonderful, caring, laughter-filled places where residents and their families are supported with compassion and loving kindness. A good care home can be transformative for everyone. Moving your relative into dementia care releases you from the role of carer and allows you to reclaim your mother/daughter relationship.

Mum had vascular dementia. In the November she was managing little trips out and talking happily (not very coherent but still talking). She could walk a little with help. She had an episode in the December with a hospital stay and came home bed bound. The hospital sorted a peace plan which meant she would be only treated at home from then onwards. The decline was steady from then.

she had carers four times a day and family visited for a couple of hours between carer visits. We put a tv in her room, wall mounted, and she seemed to like this. She ate little bits of food, but really just tastes of this and that. Ice cream was popular. The GP said just give her what she fancies and don’t worry. She had fortisip drinks and a little soup too. She drank with a straw and liked water and tea.

she slept a huge amount. Because she was bed bound and showed no inclination to get up she was safe to be left. She had some spells of talking, these came and went, but she was cheerful and smiley to the end. In the March she clearly had another stroke and died peacefully the next day in her bed. I felt terribly guilty that she had been left alone so much, but she was honestly smiley and happy and like others have said she would probably have been left alone for long periods in a care home.

Oh, I wish that was my experience! I'm glad yours was.

I don't mean this as a cheeky question, but was it more expensive than the bog-standard ones? I do think you get what you pay for. My friend's mother died in a wonderful dementia care home, but it was very pricey.

It will be if and when risky issues start to happen such as her potentially trying to get out of bed and falling, getting distressed, losing significant weight, repeated utis, pressure sores etc. If she is is essentially content and stable then there isn't much more care that would be offered in a care home. Does she have a TV/radio/music playing? If she isn't drinking a lot then does she need more or longer visits to be supported to drink?

Oh perhaps you missed the part where the OP said that her mother has dementia. She’s probably oblivious of other peoples needs so I very much doubt that Mum is happy for her daughter to live like that - that’s what happens with dementia, your thought processing is compromised.
You make it sound like the Mum is self centred

Is a 24hour carer a possibility? I’m a private carer and know of several people who provide this service. I help by stepping in while they take a break.

My DM’s care home was purpose built for dementia (an Abbeyfield) and we were very happy with it.
We’ve had other relatives with dementia in different care homes (FiL with vascular, an aunt with Alzh.) and were perfectly happy with those, too.

I think we must have got unlucky, then. Sometimes these things have to happen in haste, and there are few available options. Everything looked great from a visit, but the reality was very different.

I suppose this is a good argument for lining things up in advance if that is possible.

Id say that the change comes if they are at risk to themselves. DM went into care last year, vascular dementia made her aggressive, violent, with a need to move and go out at the strangest times, she sundowned and became a danger to herself and to my DF. My DF was still at home until end of April, then he had a fall and fractured the top of his femur, developed post operative delirium, part of which was extreme agitation and wanting to get out of bed. Therefore, he couldn't stay at home because the risk couldn't be managed in the spaces between carers, the risk was far too high. He died last Sunday. DM is 83, looked after well and is happy in her own way, she certainly couldn't live alone as the world is a dangerous place for her now. DF's deterioration was 5 months to the day. So, it's all about weighing up risk rather than whether they are lonely. There is 24 hour care available within your own hone, but it's costly. Guilt can't really come through the door, no one can care for a family member 24/7 , once the need climbs too high then it's time to be paying someone else to do it.

I would have thought now is the time to get your mum into a care or nursing home. I'm sorry to say, but having watched my mum live with and eventually die from vascular dementia, it can be hard to understand quite how difficult things are likely to become. It will reach a point when your DM will need much more care than 4 visits a day and you popping in when you can. My dm's care home for the last 18 months of her life was an absolute godsend. They cared for her wonderfully and enabled her to have a dignified and pain free death.

My stepfather was bedbound at home. He had to go into a carehome because my mum died suddenly and he needed full time care. We didn’t see him for t weeks due to lockdown and we’re concerned about his decline but in reality he improved massively! He was got up and dressed every day, taken into the dining room for all meals, took part in activities with the support of the Pt coordinator and generally included. He was non verbal, fell asleep a lot but thrived for 2 1/2 years. I think it was the best place for him and he was well looked after.

If she is otherwise happy and the only 'risk' is you are worried she isn't getting enough fluids then I would leave her where she is now.

Carers can offer/support with drinks during their 4 x daily visits which is absolutely fine and in-between you can get things like Jelly Drops which are 95% water in gummy form.

My Mother has vascular dementia. Three years ago she went into hospital with a huge stroke and sepsis. The occupational therapist informed us she would be better in a home. My mum is double incontinent she cannot walk she cannot hear she talks in one word sentences. She cannot clear her throat has no circulation in her lower legs. I honestly do not know how much longer she can live like this! It’s bloody awful.

her home is absolutely amazing and they look after her so well. They keep us informed at all times especially when her care plan has to be adjusted.
the decision was made for us but she has been looked after and that is the main thing. I really feel for you and your family but for us it was absolutely the right decision.