Difficult decision or do we have no choice

[lori107]

My fil has been in a care home since the beginning of October after falling in his flat and breaking his hip. He has dementia and is registered blind due to having no central vision and very little peripheral either due AMD. We had been trying to persuade him to go into a home due to the progression of his dementia. He could sort of have a conversation but loses the thread very quickly and then you have no idea what he is talking about. The day he broke his hip he had carers going in for an hour in the morning and an hour later in the afternoon (we tried to make it an evening one but he told them he didn't want anyone then and so they changed it , but didn't tell us). He fell and did not have his care alarm round his neck so he had to crawl on his tummy to his bedroom to get help. He also had put the oven on but there was nothing in it as he had then put his sandwich in the microwave. We arranged for him to move to a really nice CH and he has the best room there. After his operation he had delirium for a week and since the surgery his dementia has worsened. He has no idea how to turn his tv on/off or change the channel, he can't work his mobile phone even though he only has one button with a raised bump on it to press. He doesn't think or know how to phone us. He has food treats we bring him piling up on his table as he can't see them and forgers they are there. He was ok in the home to begin and we thought he was settling. However he now is adamant he is going back to the flat. Every conversation with him is about how we are not going to stop him going back. He can't walk unaided and has two sticks and is very unsteady on his feet. A Dementia nurse went to see him yesterday as we have asked Ss to assess him and see if he is deemed to have capacity to understand his safety regarding going back home. We don't think he is capable of making decisions regarding his safety and he told the nurse yesterday that in the flat he cooks his own food (which is completely untrue) . She has said she thinks he has capacity but he needs to be assessed by ss to determine whether he can go home. We are totally against this as he not only has dementia and can't make decisions on looking after himself safely but he can't see either. Hubby has poa and the home have said that although he can make decisions on day to day activities he is unable to make complex decisions. She also said that although he keeps talking about going home he is quite settled there although he seems to hate the food and has lost weight. We found recently though that he had become very faddy about food and when the carers came to his flat and left him sandwiches they had made he loved them to begin with and then hated them so we bought shop made ones which again he liked to begin with but then he hated those as well. So really we don't think he likes any food much now. He his encouraged in the CH to join in the gardening activities and they have an entertainer weekly which he enjoys. If he was in the flat he would have none of this and he spent every day in the flat just sitting in his chair. We so want him to stay in the home for his own safety and to give him motivation to get involved in activities but if ss say he he can cope in the flat with carers going in, do we have no choice but to let him go back and wait for the next emergency call, which we know will happen. If ss say he has some capacity surely they have to take his blindness into consideration as well. He wouldn't be able to get up in the night to go to the loo as he's so unsteady we think he will fall over and we don't see how he would be able to get up from his chair to answer the door. We knew the only way we would get him into a CH was if he had an accident and were so relieved when we had moved him in but seems we may have go back to square one and wait for the next disaster. I am not in good health myself and all the family are at work during the day so it just me available week days. I find the stress of all this just makes my chronic illness worse. Do we have any say over where he lives? I have made a list off all the things he will say he can do but we know full well that he can't. Any advice please

 

[Shedrech]

Hi lori107
personally I think there is no choice - he has to stay in the home
The staff at the home are backing you in agreeing that your fil does not have the capacity to make this decision. If you hold POA for Health and Welfare as well as for financial, it seems you have a strong hand to insist that he is not moved - and to him use any excuse you can which may help him accept that (though there may be nothing that will truly settle his mind).
May I suggest you copy out your post here, which is calm and thorough, and send it NOW, with the list you have put together, to the Dementia Nurse, SS, the care home manager, his GP, his consultant - anyone involved - so that they are immediately aware of how you see the situation.
It may well be that the nurse is following protocol and actually the outcome will be that all agree anyway that it is his best interests to stay in the care home - seems this happens, and puts the family through the mill in the process.
I'm sorry your own health is suffering - which is partly why I suggest you don't wait for others, be proactive and maybe by forcing the issue a little, it may be settled sooner - to the benefit of all your family.
best wishes

 

[susy]

I think now is the time for little white (love) lies. How about saying that he can go home but he has to wait until he is better. And keep saying that. If he appears "better" then he can go home after some work is finished in his flat. This is much less harsh and much less antagonistic so although it is untrue, it is something HE can deal with and cope with rather than being told that this is it. It is a care home for the rest of his life. It may well bring comfort to him that he is lacking right now.

If it does turn round and the ss say he is fine to go home then make sure they are aware that it is their responsibility to care for and ensure the safety of this vulnerable and unsteady person.

Take care x

 

[lori107]

Hi lori107
personally I think there is no choice - he has to stay in the home
The staff at the home are backing you in agreeing that your fil does not have the capacity to make this decision. If you hold POA for Health and Welfare as well as for financial, it seems you have a strong hand to insist that he is not moved - and to him use any excuse you can which may help him accept that (though there may be nothing that will truly settle his mind).
May I suggest you copy out your post here, which is calm and thorough, and send it NOW, with the list you have put together, to the Dementia Nurse, SS, the care home manager, his GP, his consultant - anyone involved - so that they are immediately aware of how you see the situation.
It may well be that the nurse is following protocol and actually the outcome will be that all agree anyway that it is his best interests to stay in the care home - seems this happens, and puts the family through the mill in the process.
I'm sorry your own health is suffering - which is partly why I suggest you don't wait for others, be proactive and maybe by forcing the issue a little, it may be settled sooner - to the benefit of all your family.
best wishes

Thank you for your comments Shedrech and Susy

I think I will do what you have suggested regarding sending it to relevant services as we really feel that he has no idea of the reality of actually living in his flat especially regarding his own safety.
I'm also going to continue along the path of 'you need to get better first' but think saying about having work done in his flat will probably cause ructions as he hates the idea of us even going into his beloved home when he's not there let alone us having the thought that we are having anything done to it.
I also think that the fact that he was visited by someone from the AS three weeks before he fell over because we were worried for his safety and they found mouldy sandwiches in the bread bin and milk going off on the window sill but said they were perfectly happy that he was managing fine at that moment makes us really angry and surely someone will listen to us this time.
I will keep you updated.

Best wishes to you all

 

[looviloo]

I really feel for you, and was in a similar position with my dad earlier this year. I wrote down all of my concerns (about the safety of dad living alone), as bullet points, and kept it as factual as I could. I gave evidence of my concerns e.g. falls, losing weight, confusion, wandering etc etc. And I printed off several copies and gave a copy to anyone involved in my dad's 'care' - social workers, doctors, mental health nurses, and so on. I found it helped a lot, not just for me but for them to understand the bigger picture. And it showed them I was determined to get the best possible outcome for my dad that I could, and that I had a lot of insight into his problems that they just didn't have.

This kind of situation really makes me angry! I'm afraid that you ned to be strong and resolute and keep fighting your FIL's corner. Even when my dad was in the midst of delerium, the hospital / social worker wanted to send him home to live alone with a care package! I stamped my feet many times, eventually got intermediate care and then a permanent care home place (self-funded). Just a short while later he was seen by department of work and pensions, and they agreed that he needed 24-hour supervision! And he was on the mend by then!

As for dealing with your FIL's wishes to go home, use any (kind) excuse that you can. Sympathise. Say you're trying to sort things out, maybe tomorrow, when the doctor has seen him etc etc. Blame the situation on factors that are out of your control...such as the GP saying he needs rest & time to heal. lt's hard, but I used every excuse in the book with my dad and he did eventually become less distressed, and it's been 8 months since his fall now and he is pretty much settled in the CH.

Stay strong and let us know how you get on xxx

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Another thought: in your list of concerns, make sure to include any issues that you may have with regards to providing support to FIL yourself. In my case, I have had major health problems that mean I cannot provide as much support for dad as he'd need if he were home with a care package. So I made sure I let people know this. I felt as though I would have been expected to pick up any 'slack' in the care package... but I couldn't do more than I was already doing. It's important to consider all angles .