Vascular dementia and home care. What next? Please.

Yes, the staff were nice enough and I always go back with biscuits and chocolates to thank them whenever I'm in the area. Unfortunately, the place was mayhem.

I'm sorry your experience was so awful. I know I've been lucky but I've also worked very hard to build and foster positive relationships with every member of staff I encounter.

I'm sorry you had such a bad experience Beachtastic.

My mother's care home was was rated 'good' and was about £1200 a week (in the South East). She was self funding to start with, but LA funded towards the end.

Ours was £1500/week, which isn't cheap either, and the CQC reviews were good. It all had to be arranged rather quickly (respite care following hospitalisation after a fall that precipitated cognitive decline), and it sounds as though we were unlucky. I will never stop feeling sad and traumatised by the last few weeks of my parent's life. I'm glad others have had happier experiences.

I'd say, for my area, it's probably a bit more for self-funders than some care homes. However, they do take LA funded residents, which is vital as we cannot afford the fees indefinitely. Realistically, who can?!

OP I don't agree that your mum would get 'less' care in a care home. My mother had dementia and was in a care home for several years. (It was not 'bedlam'. There was a lovely atmosphere and the carers were wonderful.)

For her last two years the carers had to do everything for her. They did continence care, and gave her pureed meals, cake, and drinks. And she was only alone in her room at night, to sleep. During the day she was hoisted and brought down to sit in the lounge in a recliner type chair. There was usually music playing, and constant company with carers in the room to spot when she needed anything. They could quickly see if she was in pain or distress, and address that. For someone with such high needs, to me that is preferable to being left alone for many hours of the day.

I would just add that your mum does not need 'nursing' care, what she is having is social care. So she would need a dementia care home, not a nursing home.

Hello Op, just to say I'm in early stages of this journey too so wanted to send solidarity .... reading a lot of these threads is terrifying frankly and it's such an unknown how it will develop. Do you have a health LPA in place? That may help when / if the time comes that a decision needs to be made. But from everything I've read it is a very difficult journey so having a plan in place, understanding of finances, and options set out, is sensible. It's a horrible thing to be dealing with but try to have a plan in place (not that I have! But need to). I am moving my parents very soon so that they can settle in a new house before my dad gets bad; they're four hours away from me at the moment and I just can't see how I can help them from so far away. We're not exactly a close family but I do not see how I have a choice.

I was told by my late mother's social worker that she was getting more care at home than she would in a nursing home.

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.

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 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.

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.

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 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.

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.

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.

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

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, 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.

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.

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.

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.

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. 💗

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.

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