Dad not happy with lack of freedom & conversation.

[SMBeach]

Hi. I called dad tonight at his care home. He didn’t answer his iPhone so I ended up calling the home direct & they took the phone to him. He was paranoid about the noise he’d heard in his room until I recognised it was the iPhone he was talking about and I was able to put his mind at rest.
Dad was rather miserable. He moaned (as he did at home). Mostly just saying he didn’t feel himself anymore & if this is all he has to look forward to then he may as well die.
He said he has one small bedroom to use & that’s it. When I mentioned the lounge and dining room he agreed he used them but they didn’t serve much purpose for him.
There was no one to have conversation with as many are not able to have conversations due to their illnesses. He commented on how some people had difficulty walking/shuffling around and he really felt he had no freedom.
I spent 3 days & nights with dad in the home. I ate with him. I joined in activities with him. I saw him being given medication. I’ve seen photos on Facebook of him having a good time and witnessed dad really enjoying the exercise class etc. So I know he’s had good times. Much more than in his own home.
I do however understand his feelings. He can’t just take himself downstairs to have a coffee or go for a walk into town (which is walkable). The main doors between floors and exits etc are all key coded so he can only go downstairs with staff. He does get downstairs a lot though through the activities he does. He forgot a lot of the activities he’d done there. When I explained he did more there than he did at home he said he was happier at home though. He kept himself busy. And that is true. He did. Busy cutting up furniture and re inventing it and all the tools and outdoor stuff ending up inside the home. But it kept him occupied. When I asked him what it was he wanted he’d say his life back. Or to be himself again. Or freedom to come and go. Now when dad was at home with 4 care visits a day, he was free to leave the house but never did. He’d felt restricted by the 4 visits per day, saying he couldn’t go out as he’d need to be back home. Then he gif to a stage where he didn’t want to go away from the house and I’d worry he might. He had his big garden but usually locked himself inside the house and lost his keys. He had no memory of having had carers at his home even though they were there every day. And he moaned about them and his situation then as well.
Now I have to say, I think dad would be happier on the residential floor which is more like assisted living. Dads on the dementia/nursing floor. He doesn’t really have immediate or obvious nursing needs. He does have Alzheimer’s and I would worry he’d get lost or hit by a car if given the freedom to come and go.
But I’m thinking of asking the home if he should be moved to residential instead. I think he’d feel happier with that but obviously I need to know just how much freedom that gives him. I know he was very happy when the activities lady took him to the pub with 3 gents from the residential suites so they have mixed dad that way. He also mentioned that there were hardly any men and of course that is the case in most care homes.
Although dads memory was really bad and although dad moaning about everything isn’t any different from when he was at home, I’d like to try him in the residential setting and see if that’s better for him. It’s in the same home but might give dad more conversation.
Has anyone had their parent with dementia move to assisted living/residential care successfully? I just don’t want dad to feel miserable or state he wants to return home. There’s been no mental incapacity assessment done despite social services asking mental health and a previous hospital to do this. His gp has stated he doesn’t believe dad to have capacity to make his own decisions on his care but I’m not sure that would stand and of course I want dad to be as happy as he can be.

 

[try again]

Has a dols been applied for? He is obviously not telling the truth. People in a secure dementia home can still be taken out with a carer or relative.
It's likely he won't be happy wherever he is. You say you have seen him taking part in activities that he forgets about.
The best thing to do is to speak to the home.

 

[Sarasa]

@SMBeach , I think your dad won’t be happy wherever he is, it’s part of the illness. He’s obviously becoming more forgetful if he didn’t recognise the phone ringing for instance. I think he’s just using talking to you to offload, but I I understand how tricky it is to be sure of things if your not there to check. Does he have any friends that could visit and maybe take him out for a coffee and let you know how he’s doing? You could pay for a companion to do that, but of course that’s more expense. Also phone the manager and chat to them about how things are. Hopefully that will put your mind at rest.

 

[canary]

I agree that he wouldnt be happy wherever he is. If he is moved down to the residential floor he will still have restrictions eg it wont be safe for him to go out and walk into town by himself, and its the restrictions that irk him. He is forgetting the things that he has done and enjoyed - as soon as he is in his room the rest of the home is forgotten and, in his mind, ceases to exist. What he is remembering is what life used to be like before dementia. Of course he wants that back (we would all like it), but it cant ever happen and he probably doesnt realise that.

 

[Angel55]

Hi. I called dad tonight at his care home. He didn’t answer his iPhone so I ended up calling the home direct & they took the phone to him. He was paranoid about the noise he’d heard in his room until I recognised it was the iPhone he was talking about and I was able to put his mind at rest.
Dad was rather miserable. He moaned (as he did at home). Mostly just saying he didn’t feel himself anymore & if this is all he has to look forward to then he may as well die.
He said he has one small bedroom to use & that’s it. When I mentioned the lounge and dining room he agreed he used them but they didn’t serve much purpose for him.
There was no one to have conversation with as many are not able to have conversations due to their illnesses. He commented on how some people had difficulty walking/shuffling around and he really felt he had no freedom.
I spent 3 days & nights with dad in the home. I ate with him. I joined in activities with him. I saw him being given medication. I’ve seen photos on Facebook of him having a good time and witnessed dad really enjoying the exercise class etc. So I know he’s had good times. Much more than in his own home.
I do however understand his feelings. He can’t just take himself downstairs to have a coffee or go for a walk into town (which is walkable). The main doors between floors and exits etc are all key coded so he can only go downstairs with staff. He does get downstairs a lot though through the activities he does. He forgot a lot of the activities he’d done there. When I explained he did more there than he did at home he said he was happier at home though. He kept himself busy. And that is true. He did. Busy cutting up furniture and re inventing it and all the tools and outdoor stuff ending up inside the home. But it kept him occupied. When I asked him what it was he wanted he’d say his life back. Or to be himself again. Or freedom to come and go. Now when dad was at home with 4 care visits a day, he was free to leave the house but never did. He’d felt restricted by the 4 visits per day, saying he couldn’t go out as he’d need to be back home. Then he gif to a stage where he didn’t want to go away from the house and I’d worry he might. He had his big garden but usually locked himself inside the house and lost his keys. He had no memory of having had carers at his home even though they were there every day. And he moaned about them and his situation then as well.
Now I have to say, I think dad would be happier on the residential floor which is more like assisted living. Dads on the dementia/nursing floor. He doesn’t really have immediate or obvious nursing needs. He does have Alzheimer’s and I would worry he’d get lost or hit by a car if given the freedom to come and go.
But I’m thinking of asking the home if he should be moved to residential instead. I think he’d feel happier with that but obviously I need to know just how much freedom that gives him. I know he was very happy when the activities lady took him to the pub with 3 gents from the residential suites so they have mixed dad that way. He also mentioned that there were hardly any men and of course that is the case in most care homes.
Although dads memory was really bad and although dad moaning about everything isn’t any different from when he was at home, I’d like to try him in the residential setting and see if that’s better for him. It’s in the same home but might give dad more conversation.
Has anyone had their parent with dementia move to assisted living/residential care successfully? I just don’t want dad to feel miserable or state he wants to return home. There’s been no mental incapacity assessment done despite social services asking mental health and a previous hospital to do this. His gp has stated he doesn’t believe dad to have capacity to make his own decisions on his care but I’m not sure that would stand and of course I want dad to be as happy as he can be.

Hi

If it is any consolation this is my Dad. He was lonely, unhappy, and self neglecting in his own house, not able to drive really or go out due to poor mobility and he looks better than he ever did at home now he has been in residential care for nearly a year.

He is never happy but then he wasn't at home either so its a no win situation. I take it as it's the condition more than anything else and there is not a lot we can do about that part.

If he was able to be in his own home of which I am still an advocate for that if it is at all possible then he would be but he really was not safe, he has little to no awareness of his own care needs. He still says he isn't having any care 🫤 I am anticipating a dols at some point but we will see.

I do think your Dad will still feel the same way if he did move.

 

[SMBeach]

Thank you all. I sense he won’t be happy anywhere unless if involves being around people who are caring for him and others together 24/7. With carers and nurses who every day are explaining the disease and how to live with it and why they are having the difficulties they are having. Care simply isn’t what my dad imagined care to be. To him it’s just people doing practical stuff like getting him up, washed and dressed in the morning. Telling him when he should have his meals and having to eat then within a timescale. I know there was no rush to eat his meals when I was there but I think he just means it has to be all eaten at meal times.
Of Dols is an incapacity test then yes it’s been asked for twice over the space of a year but never been done. Mental Health said it wasn’t for them to do but a Lawyer. Social services don’t seem to know why mental health are saying that.
I was thinking if dad could be moved into the residential area rather than nursing (he’s only in a nursing home incase he needs nursing care in the future, he doesn’t need to be in the nursing area), then ‘maybe’ dad will be happier and might be worth a try.
I know I wouldn’t be happy if many if the people around me couldn’t hold a normal conversation. Once his house is sold though there’s no going back so I dint know what happens if he doesn’t have a ‘Dols’ and doesn’t have a home to return to.

 

[maisiecat]

I think if you instinctively feel he would be happier on the other floor then it is worth talking to the manager about it. In my husband's nursing home one of the ladies very successfully made the transition and is much happier.
Its my husband's home who are applying for a DOLS I don't even know if he has a Social worker now.
It's very hard because you want them to be happy but I think the level of confusion can make that difficult. Keeping them safe becomes the most important issue.
Good luck

 

[SMBeach]

Yes. I think what’s difficult is some of what he says is valid and he makes sense. I’ve emailed the head nurse and manager of the home to see their views

 

[canary]

I know I wouldn’t be happy if many if the people around me couldn’t hold a normal conversation.

The thing is, though, that your dad is not in your situation, so its no use thinking about what you would want if you were there. Dementia changes things.

Is your dad able to hold a normal conversation (and I dont just mean sometimes)?
I dont know how advanced your dads dementia is, but if he isnt able to hold a normal conversation for most of the time and his behaviour makes him "different", then unfortunately he is unlikely to fit in. People who are elderly, frail and with needs of their own are unlikely to be able to accommodate someone with much higher needs. If his needs are too high for the other residents to accommodate you may find that he is simply avoided. I thought the floor he was on wasnt just a nursing floor, but a dementia floor that also happens to be nursing, which, if his dementia is quite advanced, would be more appropriate.

See what the manager thinks
xx

 

[Sarasa]

Does the care home have an activities co-coordinator? Maybe contact them to see what they could organise that your dad would enjoy. My mum’s first care home used to take the men out to the pub sometimes and also organised visits to clubs and theatres. However your dad might not remember that he’s done that and still think nothing is happening.

 

[SMBeach]

The thing is, though, that your dad is not in your situation, so its no use thinking about what you would want if you were there. Dementia changes things.

Is your dad able to hold a normal conversation (and I dont just mean sometimes)?
I dont know how advanced your dads dementia is, but if he isnt able to hold a normal conversation for most of the time and his behaviour makes him "different", then unfortunately he is unlikely to fit in. People who are elderly, frail and with needs of their own are unlikely to be able to accommodate someone with much higher needs. If his needs are too high for the other residents to accommodate you may find that he is simply avoided. I thought the floor he was on wasnt just a nursing floor, but a dementia floor that also happens to be nursing, which, if his dementia is quite advanced, would be more appropriate.

See what the manager thinks
xx

Thank you. Yes it is dementia as well as Nursing. Dad can have conversations that make sense although he can struggle to remember the words to use. He can also not make any sense and I totally understand you saying he may end up being avoided. If the care home don’t feel it’s the correct move for him I’ll totally accept that. He does apologise gif laying all this on me. He says he’s very conscious of that - but he still does it. He’s also said he doesn’t want me to get to the stage that I just wish it was all over. So he is aware at times of the effects he may be having on me. And I have already reached that point of wishing it was all over. Not that I’d say that to dad of course. He asked me if I was at the point of feeling over when Ed and I do. But again, I said no tk dad. When he has conversations like this I feel he could live with people who don’t have dementia. To be honest I’m not totally sure if those in residential have dementia too. I’ll see what the manager and nurse say.

 

[SMBeach]

Does the care home have an activities co-coordinator? Maybe contact them to see what they could organise that your dad would enjoy. My mum’s first care home used to take the men out to the pub sometimes and also organised visits to clubs and theatres. However your dad might not remember that he’s done that and still think nothing is happening.

His activities team are truly amazing. I joined in the actuvities with dad whilst staying at the home gif 3 days and nights with him. They have asked me for all that info and they are very pro active. They send me photos. He’s walked to the pub and had lunch and a Guinness. That was with the : gents from residential floor which he really enjoyed. I see him on their Facebook page laughing and enjoying himself. I’m hoping dad isn’t doing that just for the cameras but he enjoyed the excercise class we did together with music. I can’t fault the activities team. They have lots of entertainers. Choirs. Activities. Trips out. Also go the bar downstairs and walks to the harbour (just across the road although he’s not fine tgst yet due to weather in Scotland). You are correct. He’s already forgotten some of the stuff he’s done that I know gif sure he enjoyed.

 

[Alberta23]

It sounds as if it could be worth a try moving him to the residential floor. Even if he is forgetting more. If hes enjoying going out and about, and is forming relationships with people on that floor, surely its worth a try. My mum was on a floor with people who couldnt talk and she couldnt cope. She started getting very depressed. There were lots of problems, but i felt not having people to talk to, and just existing was too negative for her. She lacked social interaction.
Your dad sounds like my mum. They need to chat, communicate, all day long, not just during a one hour activity.

See if you could do a test run with him. I spoke to a care agency about my mum. They said often people deteriorated quickly due to lack of communication in care homes, yet as soon as they went back home their condition improved.
You are not losing anything by giving it a try. I hated seeing mum sat in amongst people, and not chatting. Even when we visited she said it was a teaspoon in time. meaning....a one hour visit was nothing out of 24 hour days. So even activities, can be short lived and forgotten. Some people need more than an hour.

I can understand how he feels.

 

[SMBeach]

Thank you. Yes I totally understand it too. Although dad lived alone and never left the house in the last year, he did have carers visit 4 times a day who were there just for him and would chat if nothing needed doing. He also went gif a full day to a day centre where I know he thrived. The majority of the time he was alone though. Dad’s always been happy in his own company though but when in his own home he was more relaxed. Not being called on to sit in a lounge for no purpose. The care home have said there’s no room available on top floor but willing to try it if one becomes available. However they did say he does mix with those residents during activities but as you say, that’s not much in a day.

 

[Jessbow]

If i remember rightly, hes not been there long- hasnt really had time to settle yet

 

[SMBeach]

That’s correct. He’s been there 5 weeks.

 

[Alberta23]

Yes, even on their own at home, they can potter about, watch the world go by, watch their own TV programmes, listen to their own radio programmes. They have their home, memories, familiar surroundings, routines. Everything is theirs.
When they go into a home everything can be turned upside down. Some people thrive. Love being around anyone. Love having regular meals.
But for some elderly people its a different world and they struggle to adapt.
My mum struggled the first day she went in. She never coped. Never liked it there. Some things were seriously bad for her.
My mum needed a more chatty environment. She needed communication. She wanted to remain independent. She very quickly deteriorated within weeks and gave up living. People told me she needed time to settle. Sadly we ran out of time.
So check what is right for your dad. Ask him what makes him happy.
And as soon as room is available take it.
But they could let him go down every day, for the daytime. Then go to bed on the other level until a room is available.
That would give him 10am till 6pm if he had his lunch and tea on the other floor. Better than nothing. Better than an hour a day.
Keep up the good work.

 

[SMBeach]

Thank you. I’m visiting on the next few weeks. During our recent calls he’s not made a lot clear. But the jist of what he’s saying is that he’s not sure how well it’s going to work out there due to staff having too many people to look after and some being better and nicer than others. That’s what I took from him. But sadly, I think that is the same in most care homes and the only way to find out is to try them. That’s not practical and time consuming. In an ideal world, I’d have dad in his own home with a live in carer/s. Sadly, without selling the house there wouldn’t be the funds for that. I sense dad thinks this is a trial and/or that we can just try another home and so on until he finds the right one.

 

[Alberta23]

Hoping life is being kind to you both. Yes, there is rarely an ideal situation. But I do hope your dads care home finds a way that helps him more.
When a persons needs are met, they are usually more settled and take up less time. So its in their interest to help him. Losing social contact is huge for us all. I do feel care homes can do more. They do seem to have staff running ragged. I can understand what your dad is saying. Its very true.
But care homes state that the home is a persons 'home' so other systems need employing. Sometimes they get wrapped up in basic care too much and forget emotional care. Which in truth is far more important.
Thinking of you. X

 

[SMBeach]

Hoping life is being kind to you both. Yes, there is rarely an ideal situation. But I do hope your dads care home finds a way that helps him more.
When a persons needs are met, they are usually more settled and take up less time. So its in their interest to help him. Losing social contact is huge for us all. I do feel care homes can do more. They do seem to have staff running ragged. I can understand what your dad is saying. Its very true.
But care homes state that the home is a persons 'home' so other systems need employing. Sometimes they get wrapped up in basic care too much and forget emotional care. Which in truth is far more important.
Thinking of you. X

Thank you. Just 3 days til I’m with him. I managed to sell dad’s house within 2 days on the market. I’ve decided not to mention his home if he doesn’t. I’m kind off hoping he’ll forget about it. My younger brother who is working in the U.K. now is visiting at the same time so that will be good. Sadly my older brother hasn’t changed his mind about visiting dad so I’m now also hoping dad doesn’t question where he is or why he’s not visited in the last 3 years. I know conversations will be difficult and strained. Still, I thought we might take dad out a walk so he gets a feel for exactly where he is. I’ll show him the dentists he’ll be going to next month and let him see the care home from the outside as I know he seemed to think he wasn’t in the place that the care home manager said he’d be going to. Such a horrid situation but I’m hoping with spring on its way he’ll get to go walks more. I haven’t seen dad in the photos of those out on walks and I’ve messaged the activity team to ask if he’s shown interest as I wrote down all dads interests and told them he’s keen on any excercise and I know he’d love that. Got his review while I’m visiting so I’ll get all that out too. Thanks for reading and replying. 🙂