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.

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.

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.

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.

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?!

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'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.

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.

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.