After hospital, live in care or care home?? for parent who wants neither

elderdaughter

Registered User
Dec 9, 2015
20
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Just typed a long story and deleted it!

Shortened question;

Has anybody out there had experience in setting up live-in care for a relative who lives some distance away from you and is very uncooperative with carers? Has it worked??

This is for my father, age 88 and diagnosed with mixed dementia in late 2014, whose condition seems to be bringing out the already existing part of his personality that is unsociable and tremendously strong willed.

The alternative would be a care home but we fear he would absolutely hate that and will be expecting to go home because he does not think he needs any help. He has been having one half hour visit a day, but has fought against it for a year. :(

He is about to be discharged from hospital to an assessment place in a residential home, so we have 28 days to decide what to do.

Already been through emotional exhaustion thinking about it.
 

LadyA

Registered User
Oct 19, 2009
13,730
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Ireland
You might be surprised. After a stay in hospital and an Assessment Unit, your dad's attitude towards care may have changed. My husband was always adamant that he was NEVER to be put in a nursing home, but the time came when I just couldn't give him the care he needed. To my astonishment, he thrived in the nursing home! He felt more secure there, and liked having uniformed male carers to help him, and company when he wanted it. You never know, your dad might turn out the same.
 

Kevinl

Registered User
Aug 24, 2013
6,306
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Salford
Agree with LadyA, give it at least a couple of weeks in the home then decide, I've seen enough people come into care, hate it for the first few days then blend in.
There's only one who has never fitted in but she has so much more capacity than anyone else there that I'm not really sure why she's there at all.
Live in care will be expensive, either you have to hire someone which means PAYE, NI and employers NI, holiday pay, cover for their days off, sick pay, maternity, workplace pension...the list goes on plus you'd need workplace insurance and some cover in case they got hurt by your father.
Go through an agency and it will cost even more as they have their overheads too.
People do do it and make it work but you have to be prepared to throw a lot of money at it and get lucky with the person you hire.
My friend had physical disabilities and issues with a brain tumour which impaired his memory and I think it was the third or fourth carer that he could actually live with.
One slept in until mid morning every day, another spent most of the day either on the phone or outside smoking and it really annoyed her that she wasn't allowed smoke in the house even though she obviously was doing so.
The last one though was fantastic and stayed with him until the end.
K
 

Plisnit

Registered User
Feb 1, 2017
32
0
I tried the live in care option with my mum. I'm glad I tried, because it did keep her in her own home for a bit longer, but given the option again I would have gone straight for the care home as my mum hated both equally.
There wasn't much in it money-wise (by the time you have added in household costs) But whereas the care home do everything day and night with live in care there is still a fair amount you end up doing and they can't cover night and day unless you pay for extra care hours.
I lived about 45 mins away, but found myself still responsible for shopping, sorting out bills etc and collecting for Go and hospital appointments (many of the live in carers don't drive) and my mum lived in a rural area.
Since my mum has been in the care home which is now much closer to me I can spend all the time with my mum, rather than running around doing errands.
To be fair I have to say that my mum has had a rapid decline since being diagnosed in Dec 16, so it would make no difference to her where she was at this point.
Good luck, whatever decision you make it will be for the best reasons.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
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USA
I definitely know what you mean about feeling emotionally exhausted. I imagine most of us have been there! I find that when dealing with dementia, it often feels (no matter how much I know I am doing the right thing) that whatever decision I make is wrong.

I've not been in your exact situation of course, but something similar. My mother lived 100 miles from me and refused all help, except what I could offer by making (increasingly frequent) visits. Even then, I was very limited as to what I could do. I ended up waiting for the crisis, which came in the form of a hospital stay (US version of sectioning) and she was then deemed to need 24 hour supervision and residential care.

The social worker at the hospital and at one of the care homes I looked at, told me very firmly to find a care home close to where I live. While at the time it felt awful to move her away from where she had lived for over 50 years, it was the right thing to do. She has no awareness of where she is, and it's much better for her to be 15 minutes away, rather than 1.5-2 hours. This is especially true when she is in hospital, needs to go to doctor's appointments outside the facility, or even just when I need to go and drop things off for her.

So my first piece of advice is that if and when the time comes for residential care, find a place as close to you as possible.

I will also say that my mother resisted residential care and never wanted it and protested loudly. However, once she settled in the care home, she thrived. At home on her own she wasn't coping, wasn't safe, wasn't washing, wasn't eating, wasn't sleeping, wasn't taking her medications properly which caused no end of trouble, she only went to the same two shops, and was alone and anxious and frightened and unhappy all the time (and I was getting the multiple phone calls every day as she couldn't remember anything). But once in the care home, she was able to eat and sleep on a regular basis, and got her medications on schedule, which made a HUGE difference. She enjoys the outings and activities and has a "best friend" with whom she spends all her time, so she is never alone. Her anxiety has decreased by about 85%, she put on weight, and while she will never be happy, thanks to the dementia, she is as content as it is possible for her to be. Best of all, she is safe and properly looked after, and I can sleep at night.

So, a care home could work out, and it doesn't have to be a negative experience. They are not all the same, and you do have to choose carefully, but I just wanted to share a "success" story, as it were. I wish I'd been able to get my mother into care a lot sooner, in fact.

I have no personal experience of arranging at home carers, but of course it can be done. The trick is to make sure you always have coverage, and a back-up plan in case something happens. You can either use an agency or hire private carers yourself, and of course there will be pros and cons to either approach.

I will say that like your father, my mother has no understanding/awareness/comprehension of her dementia and the fact that she can't look after herself. In her case, it's not denial, it's anosognosia, which is very common in PWDs (persons with dementia). But it did make for some tricky conversations earlier on, as she was "fine" and "didn't need help" and "just wanted to be left alone at home" and all that. This is where some love lies about "just until the doctor says you're stronger" or "the roof needs replacing so we've arranged a stay here" or "the house needs a new boiler" or whatever, might come in handy. And always, always, ALWAYS blame the doctor, the hospital, the National Health, the council, anybody but you.

Very best wishes and hope you can find a way forward.
 

elderdaughter

Registered User
Dec 9, 2015
20
0
Thank you all for your kind and helpful comments.

I tried the live in care option with my mum. I'm glad I tried, because it did keep her in her own home for a bit longer, but given the option again I would have gone straight for the care home as my mum hated both equally.

I suspect this might be the case with my father. There are not many carers he has got on okay with even for half an hour - during which time they are not even in the room with him or interacting very much, they go to the kitchen to do dinner and he sits in another room watching TV and waits for them to bring the food in. One day we got the rota mixed up and a carer came while I was there so I let her do dinner. In order to get rid of her sooner, he wrapped half the dinner up in a paper towel and shoved it on the floor behind the sofa, so he could tell her he had eaten it all and she could go.
New carers are regularly greeted by a sign in the door saying "Cancelled".

I suspect if in care, he might be the one who stays in his room to avoid people.

waiting for the crisis

Absolutely what we feel we have been doing for some time. Recently he was getting hospital appointment letters; as the hospital is less than a mile away, he walked there and presented himself. This was not on the right day, or even the right week. I got a phone call to say he was there. Got the neighbours to pick him up and bring him home; 2 hours later had to do the same as he had gone back again. It happened a 3rd time on another day. When he went out he left the front door wide open.

In his efforts to not need carers he has tried to do the cooking himself; this has led to meals being completely burnt to a crisp - we have found blackened food out in the garden - or the gas oven being left on all night (once lit, once unlit). Recently he told me he has been putting his hot water bottle in the microwave to warm it up - we got him a nice electric blanket but he took it off the bed as he could not work the control.

He burnt his garden shed to the ground while burning rubbish, after many requests to put stuff in the wheely bin instead.

He was been fit and well enough to have a lot of fight, but not cognitively able to realise the risks he faces. Speech is quite bad, he cannot summon up our names any more though he knows who we are. He did manage to tell a nurse to "p*ss off" though!

Assessment place is imminent, I was supposed to go and visit some homes to see if we could set that up in a place we liked rather than the local authority's choice; but on the day before I had to cancel, was just too shattered to handle it.

It's been a rollercoaster of good and bad news - been told he was an EMI/nursing case, then as his delirium cleared he is apparently back to being considered residential - that alone was quite a thing to process.
We are considering an eventual care place near my sister, if he is somewhere residential it may as well be somewhere we both do not have to travel a long way to visit.

Meanwhile his brother has died, but we do not want to tell him unless we have to. Funeral in a week or so.

Any care decisions we make, we will be telling him we had no choice, the doctors have told us this is what we have to do; otherwise he will blame us and argue with us, which is exhausting because he NEVER gives in but cannot respond to reason. we do have both LPOAs thankfully.

None of which stops us feeling upset that we will lose the family home which is very dear to us.