Nursing home or excessive in home care?

[MyPoorDaddy]

hey all, I’m new to the forum, but have been using all of your wonderful advice for a while. My Dad (69) has early late stage Alzheimer’s (although I’ve always thought Lewy Bodies), cared at home by my Mum (my and my sister live 6 hours away with young families but try to help as much as possible with planning, paperwork, speaking to all professionals). She’s always resisted help, but realises now that it’s reaching crisis point.

Dad can’t help/is resistant (and violent- slapping, holding wrists, swearing), with all of his care routine (scared we think, as huge problems with sequencing, perception, communication). Can take 45 mins to get him on the toilet then he doesn’t go, then has an accident. Collapses with low blood pressure every day. In a delusional state most of the time (day and night) about his “work” and communication is now jibberish.
If they go out my mam has to rely constantly on the help of strangers, it’s crazy.

My mum is just exhausted and can’t cope as he can’t go out of the house, but can’t be left alone (turns hobs on, opens sockets, toilets on the floor etc).

Is it time to consider nursing homes? Or is excessive in house care better. Are we being weak? SW thinks he should be in a home I think and thinks mum is in denial. I wish I had done answers. My poor Daddy, it’s all so undignifying; and my poor Mum is in a living hell.

Thanks all xx

 

[Slugsta]

Hi and welcome to the site - although I am sorry that you have the need for us!

It does sound as if your poor mum has done a wonderful job in keeping your dad at home until now, but maybe the time has come for him to go into residential care, for both of their sakes.

Some people do manage with home carers but it would mean that the onus would still be on your mum to oversee things, step in if a carer does not turn up etc.

Is your dad self funding? If so, suggest that your mum gets on with looking at likely places. If he is funded by the LA things will be more difficult - but they are unlikely to fund more than 4 visits a day.

I am sure other people will step in with helpful information and advice soon.

 

[nellbelles]

Hello and welcome to TP @MyPoorDaddy
If you think the time has come for more care, especially in a CH maybe the time is right to find a home that you think is suitable and maybe get you Dad some respite care, it would give your Mum and the rest of your family time to think about the best way forward.

 

[MyPoorDaddy]

Hi @Slugsta they would be self funded (but started the CHC process suggested by the SW due to the complexity of his problems, falls risk/behaviour etc but that’s another story!) and we are putting Dad’s name down on waiting lists because we are worried a crisis will occur before a place comes up and he will end up in another county. Mam would hate to have people in the house all of the time and I this the chaos would be almost worse with the nights still a nightmare!
@nellbelles thank you, yes we are sorting a week of respite for within the next month to see how dad will respond and to give Mam a break. Our worry (or could that be hope?!) is that he won’t come out. Such a sad state of affairs. I think we know the answer but worry we are throwing in the towel without thinking about other options to keep him at home

 

[karaokePete]

Hello @MyPoorDaddy, welcome to TP from me too.

Your Dad may be seeking both control and privacy in his increasingly confusing and fear filled world. Talking about 'work' can be recalling a time when he felt more in control and toileting issues can be a cry for privacy.

Toilet training belongs to a time that is called 'pre memorial' experience, that is a time before our ability to remember kicks in and we are toilet trained to 'go' privately. This behaviour becomes instinct and if someone is being assisted and maybe supervised they can't go so hold on then have an accident later. Could your Dad be helped to the loo and then left in private to get on with things so that he retains control and privacy?

Aggression can be a defence mechanism driven by fear or even be a reaction to things like pain. I know it sounds silly, however, it may help to introduce oneself and say what help will be given. It's also important not to approach out of the persons sight line in case they fear attack and lash out to defend themselves. I myself had to introduce myself to my wife recently when she asked me who I was.

There is an AS Factsheet about toileting issues and you can find it by following this link https://www.alzheimers.org.uk/sites...factsheet_continence_and_using_the_toilet.pdf
There is also a Factsheet about aggressive behaviour and it can be found here https://www.alzheimers.org.uk/sites...ctsheet_dementia_and_aggressive_behaviour.pdf

I hope some of that can help you, your Mum and your Dad while you await developments in respect of respite etc.

 

[MyPoorDaddy]

@karaokePete thank you so much for your helpful and insightful advice. This all rings very true, and could really help my mam manage the stressful care routine. We know the lashing out is through frustration/fear/confusion/lack of control. He’s the gentlest of me (I wrote was than had to edit, how terrible is that). I know my gentle daddy is in there somewhere- I gave him a big bear hug last week and he wouldn’t let go. He’s still bloody strong, but I was happy to be held there.

 

[kindred]

Hi @Slugsta they would be self funded (but started the CHC process suggested by the SW due to the complexity of his problems, falls risk/behaviour etc but that’s another story!) and we are putting Dad’s name down on waiting lists because we are worried a crisis will occur before a place comes up and he will end up in another county. Mam would hate to have people in the house all of the time and I this the chaos would be almost worse with the nights still a nightmare!
@nellbelles thank you, yes we are sorting a week of respite for within the next month to see how dad will respond and to give Mam a break. Our worry (or could that be hope?!) is that he won’t come out. Such a sad state of affairs. I think we know the answer but worry we are throwing in the towel without thinking about other options to keep him at home

Oh no, not throwing in the towel. You have done so well to get this far, I promise you. It comes to a point when caring at home is a living hell and too much of a strain on the main carer. I cared for my OH at home on my own for four years and ended up broken physically and mentally. Don't get to that stage. OH now in good nursing home, loved and cared for and no longer lonely. You have done so well and so caringly.

 

[Witzend]

To me it definitely sounds like time for a care home. Is your mum resistant to the idea? Sometimes, however exhausted and at the end of their tether people are, they feel it's wrong or somehow selfish of them to 'give in'.

I have known two carers of spouses with dementia, who, although utterly exhausted, stubbornly resisted the idea of a care home, until some health crisis happened (in both cases to the utterly exhausted carer) - the decision was then taken out of their hands and they admitted afterwards that it was a great relief - but they simply hadn't felt able - because of feelings of loyalty/guilt - to make that decision themselves.

If you feel that this is how your mother's mind is working, it may be good to impress on her that with the best will in the world, there may come a time when 24/7 care in a home is best - care by people who can go home at the end of their shifts, who can be sure of a proper night's sleep, who are not permanently physically and emotionally exhausted, and are not going to suffer complete carer breakdown because of the stress and exhaustion.

All the best at what must be such a very difficult time.

 

[MyPoorDaddy]

Thanks @Witzend and @kindred for you kind and supportive words. We’ve found a lovely place for some respite at the start of July. It will give Mam a break but also help us see how dad is in a nursing home, and how the carers see his needs.
Yesterday Mam, feeling trapped, attempted to take dad out to the local supermarket, to get some essential shopping and take him for a coffee = disaster. They found the disable toilet but he must have had an accident. She had to try and wash clothes in the tiny sink, etc etc sounded like a nightmare. I really don’t know how she managed. But @karaokePete she used the advice she’d read and made as little fuss as possible, reassured and gave dad a hug. Clean trousers and wet wipes will always be in her bag from now on!
Dads getting an emergency mental health assessment today.

 

[karaokePete]

Hello again @MyPoorDaddy, as this was a little accident in a shop I wonder if protective underwear may help. There are men's products available. Maybe your Dad's GP Surgery has a continence nurse/facility that could help.

 

[Daffy123]

It sounds way too much for your Mum. I totally understand trying to avoid care homes but there is a point where one must also think of ones own health.

 

[MyPoorDaddy]

Thanks @karaokePete yes they are getting an OT, dressing and continence assessment next week, and we are trying out some different products to help.
@Daffy123 i think she’s started to accept that it will have to happen in the near future. But I can also understand that she loves him dearly and wants to be the one to care for him. The respite will help us review things and the CPNs today really couldn’t believe that they’ve got to this point without any help. So we are trying to persuade Mam to try having some help first things with the washing/dressing etc (the company too might be nice) and maybe again at the end of the day. It would be odd to go from nothing to Care home without trying anything in between right?

 

[Witzend]

Thanks @karaokePete yes they are getting an OT, dressing and continence assessment next week, and we are trying out some different products to help.
@Daffy123 i think she’s started to accept that it will have to happen in the near future. But I can also understand that she loves him dearly and wants to be the one to care for him. The respite will help us review things and the CPNs today really couldn’t believe that they’ve got to this point without any help. So we are trying to persuade Mam to try having some help first things with the washing/dressing etc (the company too might be nice) and maybe again at the end of the day. It would be odd to go from nothing to Care home without trying anything in between right?

Yes, in theory, if your mother is willing to have that help. But I'm not sure it's going to help that much unless she can get a complete rest every day at some point. What about night times? Help in the day is very nice but if there are endlessly disturbed nights, so that she never gets a really good sleep....

If it would help at all, please tell her about the two cases I know of. Both were men looking after their wives with quite advanced dementia.
One of them finally fell and broke a hip, so that's when the decision was taken out of his hands. Before this he wouldn't even have carers coming in, and I think one reason was that he was so fiercely loyal to his wife that although she herself was past caring about such things, he thought that having strangers witness or cope with her incontinence would be an affront to her dignity.

The other - a really lovely man whose wife was in my mother's care home - was so exhausted (endlessly disturbed nights apart from anything else) that he simply collapsed completely one day. He had great difficulty even getting his wife to bring him the phone so he could call 999 - her comprehension and memory were so bad by then. And when the emergency services arrived, he could not get to the door to unlock it - his wife was beyond being able to do such a thing - so they had to break in.

It's worth adding that when such a crisis happens and a care home place has to be found in a hurry, your choice is bound to be much more limited than when you can take more time to choose the right place.
Again, all best wishes at such a difficult time.

 

[MyPoorDaddy]

Thank you @Witzend this is what I’m afraid of, especially because me and my sister are so far away.
My dad, mum and sister visited a lovely caring care Home yesterday with a specialist dementia unit. Dad settled right in. He’ll be going for a week of respite in a couple of weeks. The manager was surprised my mum has been able to cope with such a rapid decline. He warned that we should be prepared that a week might turn into longer... this made is very sad, but relieved that the place seemed so right for him. I’m not sure how my mum is coping with this information...