how do you know when it's time to consider residential care?

slowrunner

Registered User
Jun 5, 2009
2
0
Manchester
Hi everyone

I haven't posted here before but I am just looking for some general words of wisdom.

My Dad is 74 and was diagnosed with Alzheimers 6 years ago. He still lives at home with my Mum, also 74 and with a heart condition.

We've been lucky that his deterioration has been quite slow but now it's really starting to affect him and my Mum. She is not the most patient of people (massive understatement!) and seems to spend lots of her time either shouting at him or generally nagging at him - as if she thinks he will start behaving normally if she nags him enough.

Dad still knows who we all are and is very gentle and content most of the time. Conversations are pretty impossible, almost nothing he says makes sense any more. He has help 4 times a week with showering and dressing, and apart from that can manage his toileting fairly well by himself during the day. Nighttimes are different, he can be up 8 or 9 times a night and is very disoriented and regularly has accidents when he doesn't make it to the bathroom in time. Hence Mum isn't getting much sleep. Dad also attends a day centre twice a week, which gives Mum a bit of a break.

Anyway, this weekend Mum has been in a foul mood with everyone, when I spoke to her about it she says she is just fed up and feels it's time to start thinking about a residential home for my Dad.

I can understand how hard it is for her, I just didn't think things were that bad yet. Obviously I will support any decision my Mum makes but I'd love to hear from anyone who has been in this situation and how you knew the time was right.

Much as I would love to have Dad here, I don't think it's really feasible as we live 30 miles away from them so he would be away from everything familiar, I also have a husband and 2 small children (5 and 6) and a small house.

Would be really grateful for any feedback

Many Thanks
 

sallyc

Registered User
Aug 20, 2008
1,674
0
47
suffolk
Hi

Hi slowrunner. I care for my Grandad (88, moderate AD). He still lives alone and we are currently exploring options for full time care for him. He, too, seems SO much better than almost everyone we've seen in the care homes we've looked at. We were just discussing this and saying that, as others have reached that stage before him, we'll have that problem wherever we go. Then... The very next home we went to, we could totally imagine him fitting in there. This home had 20 residential beds, a separate unit (but with full access to all of the home) for 10 people who can still do a lot for themselves but whose confusion was making life tricky for them at home, and a separate secure unit for people with more severe dementia. It was brilliant. I guess you have to listen to your Mum. She's the one living with him full time. If she no longer feels she can cope with him, then maybe the time has come. I would suggest going to look at a few different homes to get an idea of what's available. As I said, we really didn't see how Grandad would fit in, but they are all so different, and there could well be one where he can be really happy. I'd be really interested to hear how you get on. Feel free to pm me if you want to chat. Love Sal xx
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Hi and welcome to Talking Point.

I'll tell you something, sleep deprivation will quickly bring even strong men to their knees - not for nothing is it used as an instrument of torture. Sadly, apart from having someone else available to take care of your father at night, your mother is not going to be able to "make up" this sleep effectively.

However, there are a few of things which might help her. Does she have (has she had) regular respite? That is not a couple of hours a week or even a day, but a week or more so that she can recharge her batteries. Has she had a carers assessment? (Actually, that comes before respite normally). Has she talked to his GP about this nocturnal wandering? If he's getting up to go to the loo, perhaps his prostate isn't what it was and there may be medication to help with that.

Those are just a few ideas. However, it may well be that she has reached the end of her tether. In which case you will have to help her find an appropriate place and reassure her that even if he does move to a care home she will still be able to care for him as much as she wishes, without the broken sleepless nights.
 

sue38

Registered User
Mar 6, 2007
10,849
0
55
Wigan, Lancs
Hi Slowrunner,

Welcome to TP.

We were in a similar situation to your mum and dad 2 years ago. My dad was very demanding, limited speech and my mum too thought that shouting and nagging him would improve his behaviour.

His toileting was generally OK, sometimes forgetting where the toilet was and having to be steered away from the kitchen bin. :eek:

My mum wanted him to go into full time care, but my sisters and I thought she just saw that as the easy solution. That was until my mum became unwell and we had to step into the breach. Until you have done the caring on a daily non-stop basis it's not easy to judge.

My dad did go into full time care, as a result of violence towards my mum and although life became easier I think in retrospect some spells in respite would have benefitted my mum and given her a chance to take stock of the situation.

If however your mum has made the decision that she wants full time care the best you can do is to support her by helping her look for a suitable home.
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
Hello Slowrunner,

I'd agree with sue 38..
If however your mum has made the decision that she wants full time care the best you can do is to support her by helping her look for a suitable home.

Your mum is at the sharp end of the caring...she's not getting any younger and also has a heart condition.

Sleep deprivation is cumulative and induces enormous stress..which is probably why your mum is in a foul mood with everyone.

Mum desperately needs a break from the caring..otherwise her own health is going to be adversely affected..the signs are already there for you to see.

Much as you love your father..he isn't going to get better.The chances are he will need more in the way of caring than your mum can provide.

Don't wait for a crisis...listen to your mum and support her with her decision, please. It's a hard one to make and she will need that support.

Love xx
 

Nebiroth

Registered User
Aug 20, 2006
3,510
0
My thought was, as your mum is the main carer and looking after your dad pretty much 24/7, with a little help and some respite, she is probably best placed to say "the time has come". If she has truly reached the point where she can't cope then she may well be correct. As others have pointed out, what may not look too bad from another point of view can really grind you down if you have to cope with it all the time. The lack of sleep will make everything ten times worse, and could well affect your mother's health. If her health fails for whatever reason, what would happen then?

It might be better to consider residential care before a crisis forces it upon you - there is little time to plan or find a good placement in an emergency, which might also involve an undesirable stay in hospital for your dad as well.

It might be that mum just needs a couple of weeks of respite to recharge her batteries, but then again, it may not.

It seems to me that the big problem is the nights. Short of medication to help dad sleep I'm not sure what elese could be done. It's most unlikely that any sort of overnight help like a sitter will be provided, unless you have th emeans to employ someone privately, which would be phenomenally expensive.
 

susiesue

Registered User
Mar 15, 2007
2,607
0
Herts
Hi Slowrunner

I am afraid I am with your mum here - unless you are living with your father and being deprived of sleep on a regular basis I think it is impossible for you to understand how awful it is.

I was in exactly the same situation with my husband and the sleep deprivation was just dreadful - added to all the other problems. He also knew who we all were and I think still does.

I am fortunate though that my son could see how dire things were becoming and supported me 100% - in fact it was his suggestion that my husband went into full time residential care, where he has been for the last few months.

I agree with Gigi - don't wait for a crisis - support your mum now as it must be a very hard decision for her to make.
 

slowrunner

Registered User
Jun 5, 2009
2
0
Manchester
Thanks so much everyone for your replies. It's really reassuring to hear from people who have been/are in similar situations.

Mum has had a couple of spells of respite last year, Dad went into a lovely respite home for 2 separate week-long spells. The reason she isn't keen for him to go again is that when he came home, she found it twice as difficult because he'd become sort of "institutionalised" if that makes sense.

I must have come across really uncaring in my post but I really do support my Mum, it's just it was a shock to hear her say that we'd really reached that stage. I suppose I just hoped he could stay at home a bit longer.

I take the point about not waiting until things get too desperate, I hadn't thought about the actual process of looking for a home and waiting lists and things like that.

Thanks so much for all your replies, I really appreciate your good advice. I'll keep you informed how we get on.

Cath
xx
 

sallyc

Registered User
Aug 20, 2008
1,674
0
47
suffolk
Cath. You definately do not come across as uncaring, not at all. No-one on this forum will judge you, or anyone else for how you feel about, or deal with your family. That's not what it's about. I do know how that shock hits you. Whilst i might sound quite calm about the whole thing. I'm one of my Grandad's main carers, we'd already looked at some homes and discussed the timescales, it still came as a huge blow, and felt totally unexpected, when Grandad's hospital consultant told us we should start the process of thinking about full time care. That sounds really stupid when i read it back, but that's how this stupid illness affects us. Keep in touch. Love Sal xx
 

NewKid

Registered User
Mar 26, 2009
367
0
Warwickshire
Hello Cath... I also want to echo that you don't sound uncaring -just ground down by it and quite shocked at where you're at. The deterioation in this illness is very very hard to accept and I think gradually - and dipping in and out of TP for support - is a help. In my family, we had a crisis... it threw the world into disarray and decisions on care home became inevitable. I think it would help your Mum if you can work as a team with her on starting to look at options. .. Very best of luck, it is hard. :(
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
I had an older friend who was in a similar position with her husband and started the process of putting him into care only to have opposition from one of her children. So she suggested that that daughter take over her father's care for three nights. She went off to stay with a friend.

By the third night the daughter understood that while the person who has just hopped out of bed for a few minutes drops back to sleep the carer takes more time to go back to sleep and may have just gone back to sleep when the next incident occurs. She then agreed that her father could no longer be adequately cared for at home by her mother.

As a friend of mine says: "If you have an hour's care a day that leaves 23 hours without care."

You have to rely on the carer knowing when the time has come to relinquish their role. And stand by for the consequences of that decision to be worked through as well. As someone who may soon be in that position I hope that my children help me through it all.

Sue.