My Dad want to come home

[MereDintofPandiculation]

After a sudden mental and physical decline, my father finally accepted care and meals on wheels to help him live at home, but even with 2-3 carer visits daily, district nurses and meals on wheels, he had pressure sores which wouldn't clear, messed up his meds and got oedema and ulcerated legs, was having frequent falls, and lost 2 stone in weight, culminating in nursing home entry in March.

He is now eating properly, has no oedema, no pressure sores, and hasn't fallen over. He said to me yesterday "I need to get out of this place and get back home".

I don't think he can be safely at his home without a burden on me that I'm not prepared to accept.

What I'm planning to do is to work out all the things that need to be in place for him to come home. Carer to get him up, carer to put him to bed (will have to be private as LA carers don't work after 10pm, and Dad is a night owl). Buy lots of clothes so I don't have to call round daily to collect washing. Meals on wheels. Someone to oversee medicines - not just the taking them, but to follow his routine of putting them out in a certain order and noting down each as he takes them. And so on.

Also things he himself needs to do - like walking around a lot more, actually taking himself to the toilet rather than peeing in a bottle in his room (because he can't safely carry full pee bottles to be emptied), generally up his mobility. Actually come out for a walk with me when I suggest it.

I don't think he'll make it. But it may be kinder to him to give him things to work towards than to say flatly "no, we can't keep you safe at home".

Any thoughts on this plan?

I sympathise as we had exactly this with mil . It doesn't really sound attainable at all to get him home to be honest. Its likley.his health will keep on deteriorating and rapidly whatever is a suitable plan now will and up not being enough. In the end we kept telling mil that she WOULD go home, the doctor just needed to get her well enough again and kept that up until sadly, she died peacefully at the home. I wonder if mils dementia was slightly more advanced tho as she was in no way able for us yo even contemplate any alternatives to the home.

Another vote for agreeing that "you will go home" here we are working on your mobility ... I'm very sorry but I do not think you really need to put too much effort into working out what would be required. Just don't try and tell him he can't or won't , keep with the line not just yet or as soon as

It's heartbreaking but true , that is how it is.

dint it is so good to hear your df is improving.... but the support needed for him to be at home is overwhelming. Not sure any carers work later than 10. And live in care- still needs loads to be done.
As others have said, focus him on “ when you are better...”
it is still early days for him there... the place sounds good, by the way.
Really tough but the chance of his quality of life being better where he is for longer is in the home.

We couldn't get carers later than seven pm ( turned out to be 5:30pm) or earlier than 10am (which in practice was after 11am) unless the person was a diabetic and that was private - the local authority used the same agency. The needs assessment will often say you need a double team even if you tell them you have been coping on your own before (and will have to do for emergencies and getting up and putting to bed).
Once in the home we did the " you can come home when your leg/arm/ears/eyes are better" which was so much better for her and us (rest of siblings object but if they want to take her to live with them it is fine by me)

He's feeling better because he has 24hr care which he wont get at home. You can come up with a detailed plan but carers might not be able to stick to it on 30min visits. Who will be with him when the carers are not there. I would ask for a care needs assessment first and see if he would be eligible for enablement. Do you have power of attorney and does he have the mental capacity to make decisions. If he is adamant he wants to go home all you can do is respect his wishes but would he be able to manage in supported housing instead.

Absolutely play along with the going home fantasy - because that’s exactly what it is - and give him goals to work towards. Going home is untenable because of the amount of support needed and you can’t possibly respect his wishes when fulfilling them would make him unsafe. I feel for you. 💐

If he has mental capacity then he can't be forced to stay in a care home. Maybe the staff can talk to him about how realistic it would be to go home.

It can be made impossible for him to return home. It already is in actuality.

You can get retirement /care home villages. Might be an idea to explore local ones.

What happens if you become ill yourself or cannot keep up your involvement for some reason?

This doesn’t sound viable. Your df is doing better because he has a lot more care. I think in your situation I would be looking towards a nursing home - we had to do this with my mum in the end. She had carers in 4 times a day at one point (through the local council, in our area the last call was 10pm) but it just wasn’t enough. They don’t spend long enough with them to get everything done properly.

He's feeling better because he has 24hr care which he wont get at home.

This ^
You need to say "now you are being properly looked after, you are feeling better, you can... X, Y, Z" and point out how much better it is to be cared for.

Dint. Was this the first time he’s asked or has it been building up?
Could he pay for additional carers to give him away days from the home so he has a change of circumstance and people but still return to carehome. Forgive me, I can’t remember if he is partially sighted or not.

Mere obviously I’m not an expert

But I would tell him he’s only better because he’s in the home

I can’t recall the situation with him re capacity?

If he goes home, he needs live in care. But, this may sound harsh, if you are worried about upsetting him by saying that it helps you for him to stay in the home, I’m afraid I’d say it anyway. It isn’t just about him. He should be thinking about the effect on your wellbeing too.

To answer some of the questions - live in care not possible, house too small. But he does have enough funds to pay for care privately. Physically he uses a zimmer frame but is hardly mobilising at all, eyesight is deteriorating in an odd way - he needs his eyes testing but doesn't have faith in any of the local opticians so I haven't managed to get this done, his hearing is going. Mentally he has "cognitive impairment" but is talking increased amounts of balderdash, so I don't think he has capacity to make this decision, but he doesn't accept that.

I'm certain in my own mind he can't go home, but I know he is finding it difficult to be in the home (who wouldn't?). It's just how to manage it. You seem to generally agree that "planning to go home but never doing it" is the best option.

It's awful to find myself hoping that he goes downhill so that either he doesn't realise where he is or becomes reconciled to it. Although maybe going downhill would mean he became even more deluded about his capabilities, and would just make things even more difficult.

Paying for someone to come in and take him out is a possibility I'd forgotten about. Thanks 46

"It's awful to find myself hoping that he goes downhill so that either he doesn't realise where he is or becomes reconciled to it. "

no, I completely understand that.

when I asked about capacity, I was wondering if he's allowed to discharge himself and go home?

I get it too. I was so lucky because my dad, after fighting tooth and nail to keep him and my mum at home (fully supported by me until it was completely impossible), came to terms with the care home quite quickly once he realised how much more comfortable life was for them there.

Maybe he would benefit from a capacity assessment. If you have power of attorney you can make decisions for him..

Dint At my DM's first care home- the one that got shut down- three or four of the male residents used to be taken once a fortnight to the local Beefeater style restaurant for their meal and then they moved through to the pub area for a beer afterward. They loved it. Just boys together which I thought was a great activity for those with capacity.

The other thing that your post made me think about was the dementia optician My mum has had her eyes tested by the same chap who used to test her eyes at home and now has been to two different care homes with her. He seems to be able to get the prescription and we choose her the same frame in triplicate and put labels on them. Mum is forever losing glasses (other swipe them and put them in pockets and hand bags). Being able to see better makes her less antsy... I know your dad has more capacity so more chance of getting things correct.
Finally, my DM gets postcards occasionally via mail. Maybe you could task the wider family to send him a postcard once a fortnight. I think deliberately breaking his routine might be the way to go

How about another approach.

DMs enjoyment of her very sheltered housing perked up a lot when I paid for someone (the one carer she really got on with) to take her out twice a week as if she was a friend. The would go to the beach or the garden centre cafes, or during school holidays, to the park with the carers grandchildren. Someone else took her to church.

A couple of times a week of 'normal life' cheered her up a lot. Is there anything your dad enjoys: pub, fishing, shopping, football?

On opticians: google domicillary opticians. They come to you and are very used to elderly people.

Is there anything your dad enjoys: pub, fishing, shopping, football? He's TT, having lived through the depression and WWII he doesn't spend money if he can help it, and he's completely non-sporty. He enjoys having expert knowledge in is field and using it to help others. And solving his own problems. Not the mindset that's going to be comfortable in a nursing home!

I think you said it yourself about the burden on you being more than you were willing to accept. Quite right. I felt the same.

Do you have PoA for care? Although it doesn't sound like he's losing capacity at the moment.

Does he have a social worker? They can organise things like occupational therapy, mobility aids and physio. ( forgive me if you know this already!)

I kept aged mother at home latterly with 4x care visits a day to get up, help with dressing, meds, meals and bed. Plus an extra personal assistant who did her cleaning shopping washing and weekly bath (ex nurse). She also had a fall alarm and a gardener.

It worked for a while but the wheels were always coming off one way or another, and despite visits she was on her own for long periods, during which she started calling the neighbour to help with real or imaginary problems.

She was hospitalised in May with shortness of breath and gross oedema of the lower legs, weeping fluid ( now diagnosed as heart failure symptom)

In the end we both knew it was time, and she asked me to find her a place, so am now in process of moving her to a permanent care home, and wading through all the practical and financial implications of that ( only child, see my other thread)

It surprised me to an extent as she is a hugely introverted and not one to readily take to communal living - Although she has always enjoyed being in control and waited on. ( short digression - I was intrigued to hear from a visitor recently that she had put her own slippers on. When I am there she will point wordlessly at the footwear, then stick her feet in the air, lest I miss the point.)

I do think the burden on me will lessen once the major decisions have been made, and others have the day to day responsibilities.

I'm focused on that, as I have a busy job and have my own wellbeing to consider as am struggling with meno on top.

Have you looked at U3A (university of the third age) provision in your area.

I recognising the not wanting to spend money. However small things that improve the quality of life are perfect for using Attendance Allowance on. (Older people often see this as "free money" so money that can be frittered on non-essentials.)

I am lucky though that I have POA so my mother does not know how I spend her money. She would be appalled if she knew she sponsored the sing-a-long sessions at her sheltered housing. She really enjoys them, but hates parting with money.

Yes, I have PoA (both of them) but he's hovering in that limbo where he believes he can make his own decisions and is annoyed at any suggestion that he can't. I'm trying to work out some way to sneak in some paid person to take him on outing, or to Chapel - he is insulted at the concept that he needs a carer.

But his desires at the moment are to go home; to visit a particular technical installation 300 miles away; another particular museum in an equally difficult place logistically. A nice afternoon tea in a cafe or a visit to a garden aren't on his list at all. I'll sort something - I'm just having a whinge.

Finance PoA is a boon - I can pay care home fees without a murmur from him, and I bought him a "dementia clock" which he's very pleased with - he wouldn't be if he knew how much it cost him!

How is his sense of time? If you said in the autumn would he remember and hold you to it? Could you plan the journeys with him? Get info on these places?
Getting a befriender type person in would be good- could age uk help?
Fil disabled by a severe stroke wanted an attotment.. and a dog..
It must be really hard for you.