Live-in care or care home?

[Dovewood]

My mum is nearly 86 and has Vascular Dementia and AD and is totally incontinent. She has no family living in the UK. My sister lives in Spain, takes no part in her care, and hasn't even been to England for 4 years. I live in France, from where I have been managing all her affairs for several years. My husband and I stay with her for about a week every 3 months.

After struggling for some time to persuade her to accept even a minimum amount of care, things came to a head in Spring 2012, when she fell at home and broke her arm, and when we left after staying with her for a month, she had no choice but to accept at last carers' visits 3 times a day. I had already written to her GP to alert him to her memory problems, and he at last referred her and we received the official diagnosis in August 2012. She has continued to deteriorate since then, and throughout 2013 I regularly had to increase the number and duration of the carers' visits. By November we had reached 5 visits a day, plus a day centre twice a week, which she doesn't like very much because of "all the poor old souls they keep in there". I have to say that many of them are in much better shape than she is. Sometimes she would complain to me that nobody had been in that day ("too busy going to parties") and that she was so lonely. Sometimes she would tear me off a strip over the phone, because she didn't want "these people" in her home, didn't like my interfering in her life and didn't trust me. I overheard her on the phone telling one of carers that her daughter was trying to send her crazy. She is incapable of remembering the term "carers" and regularly refers to them as her "keepers". She had long since got to the stage where even making a cup of tea was beyond her, and relied on the light to judge whether it was day or night, so last summer I received phone calls at 5 am to have a chat, and when winter came she was ready to go to bed at 4pm.

Just after the New Year I had 2 phone calls from her neighbour in the middle of the night over 1 weekend to say they had been woken by her calls for help in the street, and gone out to see what was wrong. She couldn't understand why nobody was about, and thought the silence was weird. She wondered if the other neighbours were playing a joke on her, but allowed the neighbours to take her back to bed. The care agency and I agreed that she could no longer be left alone, and we accelerated the plans we had already made to set up a live-in arrangement, which has now been in place for 10 days. I have nothing but praise for the marvellous care agency, who have been very "caring" and professional right from the start, and are doing their utmost to get my very independent and stubborn mother used to having someone around all the time.

The problem now is what to do in the future? The live-in arrangement is tailor-made to her requirements, but is obviously pretty onerous. She only has the state pension and AA as regular income, and we had already started drawing on her savings last year. Now we have joined another league in terms of care expenses, and still have to cover the cost of running the house. We have calculated that within about 4 years, perhaps sooner, all her savings will have been spent, and we shall be obliged to sell the house, uproot her and move her to a care home. Or would it be better to move her to a good, small care home sooner rather than later, before she gets too used to this new way of life in her own home, which might make it even harder for her to adapt in the future? Or will it make no difference anyway by then?

The present carers are getting her out and about, but apart from us she virtually never receives visits, and I like to think she might make friends in a care home, but judging by experience with the day centre, where to my great embarrassment I have been told she is only interested in pursuing men, one of whom she takes for her husband, I'm not even sure this would be the case.

Probably not very clear - there are so many issues that I don't really know where to begin, and have probably omitted other important elements. I'm not reallly sure what I am hoping for (other than to wake up one morning to find our life over the past year or so was only a nightmare), but I would appreciate having some feedback from others who know what we are going through, as none of our friends do, however well-meaning they may be in trying to support us.

Thank you anyway for taking the time to read this message in a bottle.

 

[Delphie]

Hi Dovewood

I don't think there are rights and wrongs here so the following is very much just one opinion.

I, personally, preferred the care home option for my mum (not that I ended up having masses of choice as she rejected carers). One on one care at home can be very good but I quite like the idea of many hands and, importantly, many eyes. My mum was also lonely and the care home environment has allowed her to choose the people she wants to hang out with, she also prefers some carers to others and all this put together gives her the company of her choice, rather than having a carer in her home simply because it's their turn to do a shift with her.

The care home I chose also has very good facilities and activities. She doesn't love them all but, again, she has options, and has become quite pally with the physio who is a great chap and keeps her on her toes. She also loves singing. If I'd tried to sort out exercise or a singing group for her while she was still living at home she would've, I'm almost positive, refused (and seen it as interference on my part). The care home staff have their own way of coaxing people to join in and it might be easier to simply do so when others are participating. And she benefits greatly, now that she's had a go and loves it.

Finding the right home is vital as I did see several that I doubt my mum would've been happy in, and it's not the right answer for everyone anyway, but it's worked very well for us.

 

[betsie]

I would say a care home.

Your mum will be safe and cared for 24 hours a day. You will have no worries or stress once you find a nice home and she is settled. This means you can also get all her affairs and home sorted out.

You will not have the worry of carers not turning up, being off sick, being late etc (if you did 24 hr care at home you may have to go down CH route later anyway if she worsens).

In the home she will have company and they have lots of activities and things going on. You will be able to phone and speak to her or staff members whenever you wish and after the initial stress of sorting out a CH and ypur mums affairs, when you come and visit her it will hopefully be a happy experience when you can share some quality time together.

The right decision is often the hardest to make.

 

[Aquamanda]

I also would say a CH would be best. It sounds as if your mother is not really safe in her own home and is also lonely. If she is incontinent, a CH would also have good facilities in terms of walk in showers and larger bathrooms etc. I agree that the activities are also enjoyable for lots of residents - and she may become interested in something that she never would have considered before. For example, my mother now loves music and singing in the CH; something she never would have done at home.
Your mother is also deteriorating rapidly, from what you have said, so on a practical level, it would be better if she went into a home, where you could fund her from her savings, while getting the house sold etc. Then at least once that is sold, it will release money for her future care and also you will not have the worry of maintaining the house and so on.

 

[Dovewood]

Thank you for your replies, unanimous so far. I do realize that sooner or later a care home will be inevitable anyway. I can still hear my mum asking me about 10 years ago to promise faithfully that never oh never would I put her into a home. Thankfully I said I couldn't make any such promise, but I still feel so guilty about making a decision which she would never have wanted, as for her care homes are places where old people are sent to die. Even when her own mother asked her to find a home for her at the age of 85, my mum refused on the grounds that "she wasn't that bad yet", so my grandmother sorted things out herself with the Social Services, and lived on in a good home for another 8 years.

Anyway, all this is digression, as I am certain it never occurred to my mum she would one day have dementia, and that I would be in the position I am today.

As she is now well looked after at home, at least there is no urgency. We shall take our time to find a CH where she will feel at home. As the live-in carer is now sleeping in the only spare bedroom, we will have to go to a B&B of course, but our visits should be less stressful from now on, so hopefully we will be able to share some better times with my mum. On past visits, we struggled to cope with a situation which was always worse than on the previous visit, and came home exhausted and even more stressed than usual, not to mention guilty because we felt we were not managing to look after her as well as the carers.

I am sorry to go on so much about a situation which I realize is terribly common and destroys so many lives. Thank you again for sharing your thoughts on the subject.

 

[Starshinegirl1]

Hi

I recognise much of myself in you... only I live 5 minutes down the road and that is a blessing and a curse - it means that I can be at Mum's in a flash, but of course that level of input is going to kill me, my marriage, my relationship wiht my sister who has a toddler and works longer hours so feels guilty, and my sons, who i have to poke with a stick to go and see their Gma.
How are your mother's nights? we have had some waking nights (which her regular agency did do - but they seemed to think that a waking night meant thier staff would get some sleep) Mum is up and about very regularly and does call out - even when there isnt anything wrong. This for us would mean that one or two people couldnt handle it as they will not get much if any sleep. How are the agency working it for you?