Is a care home the only way?

[suzy95]

Hallo, I have just joined this forum.
My partner is 75 and although we've been in a relationship for the last 15 years, we've always lived separately about half a day's journey apart. He was diagnosed with Alzheimer's two years ago and it has gradually been getting worse. Carers come in morning and night to get him up and then ready for bed but the bulk of the caring is done by his son and daughter-in-law as he now cannot be left alone. I'm 55 and still work part-time so I have gone up every 10 days to look after him for about four days at a time. This was manageable for everybody but unfortunately his sleep patterns are now very disrupted. He gets up in the middle of the night quite a lot or doesn't even want to go to bed. He is occasionally aggressive with some of the carers but never with me. He cannot dress, wash or even make himself a hot drink and is unsteady on his feet. His speech generally does not make sense and his mind is elsewhere in the past a lot of the time. Nevertheless, he recognizes us all and interacts with us well. He is cheerful and responsive. His son and his wife have been taking turns to sleep there but his son is now saying that he feels exhausted and it's now the time for him to go to a care home.

I feel very upset by this as I thought this was only going to happen once my partner didn't recognise us and he is not at that stage yet although I accept that eventually he will be. I share power of attorney with his son and, although we get on reasonably well, I feel I have to tread carefully. Social services seem to think that night care isn't possible and that a care home is the only answer. I would very much appreciate people's views on things such as:

1. Is night care ever available for people with dementia funded by social services, even if we could find somebody? He wouldn't be able to pay for it himself.
2. We still need to cuddle and I'm wondering what sort of privacy there would be at the home?
3. As I have a long journey to get there I would want to stay with him for most of the day for at least two days at a time. Do care homes allow this or do they tend to be strict about visiting times ?

 

[sdmhred]

Hi Suzy

Like you I had always hoped mum would be at the stage of ‘not knowing’ when she needed residential care…but it has had to come earlier. Ihave held on to some advantage that she has been able to enjoy some of the activities and the staff have got to know ‘her’ a little.

in terms of your care home questions I suggest you go and visit and ask these questions. Mum has been in 3 and we have always had plenty of privacy. I tend to keep the door open but have been told it can be closed if I would like More privacy. We have arranged the room so the chairs and bed are faced away from the corridor so if you were to cuddle it would be relatively private.

I have also found no restrictions on visiting. I think one of the homes found it bizarre that I wanted to be there so often but I explained whilst mum has quality of life I want to share that with her. They couldn’t disagree with that!

I have also slightly twisted the concept of ‘visiting’. We used to live together so I don’t ‘visit’ I go to hang out with her as if we were at home. In the evenings the dim lights go on, loungewear is worn and we watch TV as if at home, I’m not visiting we’re at home.

Both homes advertise no visits during meals but I’ve not found that enforced. If mum is up and about I will perhaps leave for a bit but as you’ve travelled I would ask you be included in the meal time. When she is in her room I help out by collecting and delivering her meal…..the staff are always thankful so it keeps them on side.

Go visit some, ask your questions and you may find somewhere you feel positive about!

 

[Sarasa]

Welcome to Dementia Support Forum @suzy95. I agree with your partner's son that a care home is probably now for the best. Social services won't usually pay for night care, although if your partner is self-funding (having assets of over £23,00) you could organise it yourselves.
As for privacy etc. Some care homes have guest rooms for people to stay, and most would allow you some privacy in his own room. It was my mother, rather than a partner who went into care, so I have no direct experience of this. I also lived near mum's care home, so didn't have problems with having to stay over.
I’d go and look at a few with your partner’s son and see which one feels right.

 

[Addiscombegirl]

I have looked at care homes for my Mum.

The private care homes that are part of chain have a guest room. Some these are more like hotels and wouldn't suite your partner.

 

[Rosettastone57]

I agree with your partner's son as well. If your partner is self-funding, then you could get night carers, but when I was looking for ad hoc carers overnight for my mother in law, the cost was extortionate and her local authority wouldn't fund it. When my mother in law was in a care home, there were guest suites available. You need to visit homes and see what facilities are available.

 

[Addiscombegirl]

It costs on average £4k to £6k a month in a care home re. Alzheimer's. That includes all means nursing etc.

I have found one for my Mum when it is time.

 

[Jessbow]

If the son & Dau in law ar doing the daily 'doing' if they re making that call, i think its probably the right one.

if he could afford night care at home, then go for it. If he cant, it isnt an option that SS will pay for.

Once he is in a home, if his house is his, it would be sold to pay for his care, which may well make him self funding for a bit.
You might need to stay yourself in something like premier inn overnight, visiting is rarely restricted during the day, overnight possibly so.

 

[Addiscombegirl]

Sorry, one more thing.

The private home that are chains have restaurants and you can book a spare in the restaurant and pay as a visitor. They also have a number of family rooms you can book. The rooms are very private with ensuites.

You normally have to pay a contribution for the stay.

 

[canary]

Hi @suzy95

The trigger for moving someone into a care home is not usually because they no longer recognise you (my mum recognised me right up to the end, even though she lived in a care home for3 years),but because of behaviours that either the carer cannot manage, or that put them into danger. Being up during the night so that the carer cannot sleep is a very common reason.

Unfortunately, it would require an awake carer at nights and this is eye-wateringly expensive and SS will not fund it. Care homes are not bad places. Mum was happy in hers once she settled. She responded to the simple routine and having people around at all times night and day reassured her. She made friends and joined in activities. I have good memories of visiting her. The general perception of care homes is one of failure, of families abandoning them and "dumping" them there, but it is not true. Mums life was enhanced there and she thrived - it was very positive.

I think a care home would actually be the best solution for your partner.

 

[maisiecat]

Hi,
Awake carers are not only extremely expensive but won't deal with any aggression etc. Also if a lot of physical assistance is needed most carers will only work with another person and that is not a family member because of the company's insurance.
Care homes are cheaper and less complicated for Social services

 

[suzy95]

I am very grateful for everybody's advice and comments and for taking the time to do this. it's been a very difficult time and I appreciate the information that I've been given which I didn't know about. Thanks again.