To care at home or care at a home, that is the question

[Bristle Babber]

Whether tis nobler to suffer the slings and arrows of dementia or guilt.
Apologies to Shakespeare but sums it up I think!

Been caring for Mum & Dad 9 ish years both with dementia. Just Dad (92) for the last few years slowly declining good days & bad. Wants to stay at home and want to honour that but sometime in the future that won't be best for him. Best for me needs to fit in there somewhere too. He has daily carer visits and trips out. Has started wandering off so now has a gps tracker.

My first post! What I'd love to tap into is experiences of when and what I need to be thinking about or planning.

Social services closed the file and the gp doesn't offer much. I've no LPA and no idea where or how long it'd take to select a care home as leaving it till it's needed is probably a bad plan. But denial can be a nice place to be!

I know there's no right or wrong, just got to do the best you can.

Thanks in advance, BB

 

[stanleypj]

Hello Bristle Babber and welcome to TP.

I can't help you much on this from my own experience but I'm sure people who can will be along soon.

Just wanted you to have a welcome.

 

[Annebags]

Hi Bristol Babbler,

I am a relative newbie to the Forum and certainly no expert. My mum has just moved to a nursing home direct from hospital after a crisis. What helped me was that I had already viewed around 10 homes so I had some idea of what was out there.

There is never a right time to make the move and I too was in denial (probably still am). I would suggest visiting a few just so you have an idea of what would or wouldn't be possible in the future.

By the way, hats off to you. It is bad enough with one parent with dementia. I can't even imagine coping with two!

 

[Annebags]

And sorry I spelled your name wrong!

 

[nae sporran]

Whether tis nobler to suffer the slings and arrows of dementia or guilt.
Apologies to Shakespeare but sums it up I think!

Been caring for Mum & Dad 9 ish years both with dementia. Just Dad (92) for the last few years slowly declining good days & bad. Wants to stay at home and want to honour that but sometime in the future that won't be best for him. Best for me needs to fit in there somewhere too. He has daily carer visits and trips out. Has started wandering off so now has a gps tracker.

My first post! What I'd love to tap into is experiences of when and what I need to be thinking about or planning.

Social services closed the file and the gp doesn't offer much. I've no LPA and no idea where or how long it'd take to select a care home as leaving it till it's needed is probably a bad plan. But denial can be a nice place to be!

I know there's no right or wrong, just got to do the best you can.

Thanks in advance, BB

I do not know if I can advise you too well Bristle Babber, but I do find the home carer services in Bristol to be pretty poor, although I note your father has a GPS and our social worker did give us a little box to place by the front door, on which you can record a message to remind him he is going out the door. It was to stop my OH from going upstairs when I was not around, so it may be useful.
On the subject of care at home versus care at a home, I would personally prefer to carry on at home as long as possible, but with both parents to look after I suppose it may be for the best. After all, you cannot help them if you are too tired and stressed yourself. My previous experience of care homes with my granny back in central Scotland was not reassuring, though.
Sorry, I am as unsure as you are about the best plan and I only have my partner who is still early stages of Vascular Dementia.

 

[Gigglemore]

I would start looking around as there may be somewhere nice that could take your parents as a couple, when the time comes. One of the ladies in my Mum's care home has a lovely big room which she shared with her late husband. They both needed nursing care so had all the benefits of the care home yet still had some privacy and freedom to spend time together.

Remember, nice places have waiting lists - and being on a waiting list commits you to nothing.

Good luck.

 

[jaymor]

Hi Bristle Babber and welcome from me too.

It would be wise to take a look around at what homes there are in your area and what care they can provide. You won't know what level of care you will need until the time comes but some knowledge of what is available will save a lot work later on.

You are right there is no right and wrong way, it's what suits you and your dad's needs.

Jay

 

[CJW]

Unless your dad agrees to it you will have no say in when or if he goes into a care home. Without a health and welfare PA it will be social services who decide. from my experience this only happens when there is a crisis and solid proof that the person is a danger to themselves or others. Perhaps you could visit local CHs with a view to respite care so your dad and you can see if he would be happier in that sort of environment. My Mum always refused to consider a CH but when the crisis happened and she was obliged to go she loved it.
I am presuming your father no longer has the capacity to agree to PA? if you can still do it make sure you get both sorts: financisl and health and welfare. this will make life much easier for you and him.
Good luck with the slings, arrows and guilt.....

 

[longshanks]

longshanks

This dilemma is something that my hubby and I may have to consider in the future,.but I have been told by people in the know that should Social Services or Hospital Social Workers get involved, (after a Hospital admission), family does not seem to have a say in whether a relative goes into a Care Home.

Frankly, my Dad (83), who is sole Carer for my Mum (82) with worsening dementia, is my problem! Mum had her diagnosis roughly 4 years ago and I did not think that I would be fighting him at every turn regarding Mum's care.

I am an only child (58) and I naturally (maybe naively?) thought that as a family, we would make any decisions together, regarding my Mum's care - but he says that he is still able to cope.

He does a magnificent job, especially for a man who was not at the head of the queue when patience was handed out, but I feel that there are certain things that men do not grasp in the same way us girls do and it took hubby and I two years to persuade him to employ a cleaner, 2 hrs per week, as the house was looking in need of TLC as, by then, Mum had given up any cleaning and Dad had enough on his plate keeping up with daily tasks and shopping.

Time and time again, I have urged him to get Personal Care in for Mum, but he always resists me, saying that Carers coming in regularly would disrupt his routine!

This is something I can understand from his point of view, but I find it very hard to accept when Mum's situation is worsening, and she has forgotten how to do any Personal Care for herself and sometimes she's just sitting on the sofa, with a blanket over her, often until late into the day, while Dad gets on with the household chores.

My Dad and I fell out big time last Christmas over the cost of Personal Care for Mum and yet here we are, nearly a year on, with no progress made.

Dad has just had a walk-in shower installed, with a seat for Mum, but I have not got much
confidence in Mum getting a regular shower, unless she is supervised by Dad - if Mum cannot remember how to have a wash, how will she cope with a shower?.

Incidentally, when I looked at the factsheets for Washing & Bathing, prepared by the
Alzheimer's Society, i noticed that their guidelines were no different to anyone who is able-bodied.

We have been in contact with Mum and Dad's GP and she says that as long as Dad says he can cope, they cannot intervene - this would only happen should it become a health issue - even an LPA does not alter things and in any case, how could I overrule my Dad?

This situation has caused me many sleepless nights I can tell you all .... is there anyone out there who can advise me.. most friends who know the situation say that I've to wait until Dad asks for help, but I know that the staff at their local Alzheimer's Society say that this has to escalate into a crisis before anything can be done.

 

[Witzend]

Unless your dad agrees to it you will have no say in when or if he goes into a care home. Without a health and welfare PA it will be social services who decide. from my experience this only happens when there is a crisis and solid proof that the person is a danger to themselves or others. .

That is not necessarily true, though if someone is not self funding a social worker will have to agree. Not everybody wants or needs to involve social services and care home placements are not infrequently made without any SS involvement, and without necessarily having the person's agreement. This is where 'love lies' come in, when the person now needs 24/7 care but is quite unable to comprehend that this is the case.