Mental capacity, wanting to go home and guilt!

VickiW

Registered User
Dec 29, 2016
38
0
Hello, I am new to the forum and having read some of the posts, am hoping that you lovely people may be able to offer some advice.

My Dad has Alzheimer's and dementia (recently diagnosed but we know he has had it for years). My sisters and I were caring for him but a long battle to be heard and him going into hospital got a knee replacement finally meant we were listened to and he was placed in a temporary care home placement just before Christmas. Hospital staff said he was not safe to go home (he lives alone) and at the time social services agreed.

In hospital, he kept trying to leave to go home and the physch doctor said he did not have capacity.

Social services visited him in the care home last week and think he does have capacity (they've met him three times and are basing their conclusion on that but we have asked for them to speak to the mental health team and take our copious notes into account so we'll see what the formal conclusion is).

Meanwhile, novelty of being somewhere new has worn off and Dad is trying to get home, very agitated, irate and asking for police to be called as he is being held against his will.

He does "present well" (SS quote) and is an intelligent chap, very lucid and says the right things. So SS have starts to say we as a family need to let him make his own bad decisions. That old chestnut - even if these include hitchhiking in the early hours, accepting lifts from strangers, letting strangers stay in his house, not eating or taking medication, etc etc!

Care home manager does not think he should go home, neither does his mental health consultant.

I would love nothing more than for him to retain his independence but in my heart I know he is not safe.

No one has told him this. He thinks he is there to convalesce after his knee op.

Anyone any experience of mental health capacity tests and also any tips on what we do/say when he says he wants to how home and becomes agitated? Care home are great but called us yesterday asking us to come in but unfortunately family presence can make the situation worse so we tactically delayed until he calmed down and even then he was verbally abusive to my sister.

We see him every day, he is our world and so dear to us. We haven't had time to grieve for this as we are so caught up in the practical but want to stop feeling like we are letting him down.

Part of me wants nothing more than to kid myself he can go home but he wasn't happy there either. And I'll admit that life has been easier since he's been at the care home, I know he is safe so the frantic calls do not lead to my sisters or I dropping everything to rush to his house to reassure him or go looking for him when he goes missing.

But he is depressed, bored and wants his home.

Apologies for long post but hoping someone may have experienced similar! Thank you.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello VickiW
a warm welcome to TP
I'm sorry that your poor dad has been having such a time recently - though it sounds as though you've found the silver lining of finally being properly listened to about his situation
sadly yours isn't an unfamiliar situation - Social Services seem to be under a lot of pressure to take into account the apparent wishes of the person with dementia - understandable in some ways, but too often they seem to take this '"I want to go home" as the driving issue, when the family know all too well that the PWD is no longer safe at home
personally, I would not tell your dad anything else but that he needs to be cared for while he convalesces and recuperates and the DOCTORS won't even consider letting him live elsewhere until they are sure he's fully fit - in many ways it's not a lie; wouldn't we all be so happy for our dads to be well enough to go home and live there independently - it also puts the 'blame' on the medics not you, so you can seem to be on your dad's side
mention 'home' as little as possible - if your dad mentions it, tell him you're looking after it and all is well, then change the subject, so he's not constantly having conversations about it - when dad moved into his care home, I spent a lot of time praising everything, the food, the view, the ensuite, the lovely staff who already know his name and have a laugh with him ... mostly it went over his head, but it did tell him that I was happy with where he is
as to the SS - you have everyone else on side, make sure SS know this - and hand them a sheet listing out all the reasons your dad is no longer safe on his own in his own house - if they say 'he wants to go home' tell them to ask him (or yourself ask him in front of them) where home is, what he does there for himself, how he looks after himself, what a typical day at home is like ... the answers often speak fro themselves, and will show the lack of understanding your dad really has about his situation - on TP we often say that a person's wants are now superseded by their needs, and family and SS have a duty of care to act in the person's best interests to meet their care NEEDS
if you feel the care home aren't able to meet his needs, do look around to see where else is available - I appreciate what you mean about family presence not necessarily helping to calm your dad down - I had this a fair bit in the early days; mostly I am a good presence for dad, but if he wanted to go home and I wouldn't take him, I was just someone else against him, so I kept out of the way - the staff gradually learnt how to help him, and a tweak of his meds helped too
it may be that not visiting on some days may help your dad accept where he is, though I appreciate it's difficult to make yourself stay away, and you must do what you need to, to keep as settled a mind as you can

I hope things work out for the best for all of you
do keep posting to let us know how you are

best wishes
 

carpe diem

Registered User
Nov 16, 2011
433
0
Bristol
Hi, welcome to TP.
It's a very difficult situation and in my experience many of the professionals will advise what's in their own best interest. The home wants to be paid but SS don't want to foot the bill.
It's my own opinion that people should stay in their own home as long as possible even with some element of risk. A life is not worth living if you don't take some risks.
If you can get good home care and fit lots of aids, monitors, cameras aand GPS many people can stay at home and will benefit greatly.
Some people do have to go onto homes and take many months to settle.
Only you can make this decision if you're sure all other avenues have been explored.
I personally am very lucky my mum doesn't wander, I've managed to put a great care plan in place where she goes out with someone almost every day. The house is also full of safety devices and monitors and I still feel guilty.
My only advice can be to be sure you have tried everything you can before a care home and be sure you have done this is the best interest of your dad and not because its the easiest option.
This is only my opinion, only you can make the decision. If SS are paying they probably can make the decision whatever you think.
Best wishes
 

Bod

Registered User
Aug 30, 2013
1,975
0
Point out to Social services, that highly qualified medical professionals consider he does not have the mental capacity to make reasoned decisions regarding his care needs.

Should Social services wish to go against this advice, they not you, will be totally responsible for his care and well-being.

Not settling, and wanting/demanding to go home, are at this stage normal. He will settle, it might take weeks, be guided by staff, as to how often to visit.
Good luck, stay firm.

Bod
 

VickiW

Registered User
Dec 29, 2016
38
0
Thank you all, just hearing this has made me calm and assured that we are doing the right thing. We have tried everything in his home, care packages and tracking devices and all sorts but he destroys them as fast as we get them. And selfish as it is, we cannot be there for him all the time. We created a dependency that meant he expected my sisters and I to be there at any time, day or night, and we all work full time (with very long hours), my sister has just finished radiotherapy and I broke my ankle at the end of November so it's been a challenge. I am very lucky as my family are so supportive and work has been amazing but the stress has got to us all.

I totally agree with the sentiment to keep him at home as long as possible but equally when he is crossing A roads in the early hours (his logic is it's safer than go under the subway in case he is mugged) then we have to think of his needs. I've thought long and hard about whether I could live with myself if something happened to him in that situation and kind of came to the conclusion that I probably could (I'm not a heartless person - just honest (honestly!) but then worry he may also harm someone else in the process, which I could not live with.

Also, if he was happy at home I would feel differently. But he was so miserable and depressed and shouted at us most days that he wanted to die. Of course he has forgotten all of that now he isn't there!

I'll keep persevering, going to pop his Christmas presents in today as he didn't want to know on Christmas Day. I tried to get him to come to dinner a couple of times but he didn't want to.

Sometimes I feel like I'm trying too hard to make him happy and I probably can't. Interesting point about staying away for a couple of days , might try to find the courage to do that!

We'll renew our battle with social services. We've over 200 pages of notes and examples so I'll take the time to put them in order.

Thank you all and I'm glad I have found you. We can all go through out journeys together. I find the odd G & T also helps me tremendously!! Am determined 2017 is the year I make a difference to how authorities etc deal with dementia and start to make a positive difference. So tired of going round in circles and banging my head against a brick wall of bureaucracy!
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
I am also glad that you found us! This is the one place where people understand the realities of the situation.

It is not selfish to be unable to spend 24/7 with someone. It is not selfish to have health needs of your own. In other words - it is not selfish to be human! You are important in your own right, not just as your father's carer.

I'm afraid I have heard of your situation too often since I found TP. SS seem determined that the PWD should make their own decisions, even when those decisions clearly have no basis in reality :mad:
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi VickiW
I was struck by this
Sometimes I feel like I'm trying too hard to make him happy and I probably can't.
sad to say, I agree - I felt this way too and now remind myself that dad has moments of pleasure and I can bring a smile to his lips, even make him chuckle at times, which makes us both 'happy' - happiness as such sadly seems too much to ask for - so now I settle for quiet and calm and if he is comfortable, I am happy - this way I am so glad when we have good days, and not too disappointed when we hit the bad ones - it's far less wearing on my emotions, and dad always wanted me to look after myself as well as care about him
best wishes