Hi, I am new here

[HelenMG]

I joined TP today. My dad is 91 and has Vascular dementia. Over the past 18 months he has deteriorated a lot. He used to be able to look after himself, cook or reheat a dinner, shower, go to the local shops or into town but he cant do any of that now. My sister and I look after him with the help of two carers who come to his home 5 days a week. He goes walking every day, several times a day, but is not a "wanderer". He has got lost only a few times but now he seems to realise his limitations and doesn't go as far any more, but turns around and might walk the same stretch a few times before coming home. If he takes longer than we think he should, we look for him but he is never far away. Walking and praying is all he does now and they give him a focus for his day.
My sister and I are spending more and more time with him as he is less and less able to handle being left alone. We are now contemplating some respite care with a view to more full time care in due course.
But there is still so much of "himself" there. He doesn't want to go into a home, he doesn't think he needs it!, and he just wants my sister and I to look after him. We do our best but it is getting harder and harder and our own lives are very much on hold now. We both fear that he will be so upset at being "put in a home". If he can't go walking it would be very distressing to him. And if the familiar things in his home that ground him are suddenly gone we fear that he will deteriorate rapidly and feel very betrayed.
It is the hardest thing to do. We keep putting it off but he slips a little further each month, yet he can have days where he is chatty and communicative and in great form rather than confused and insecure.
Does anyone have experience where respite and care homes don't work out? We will still be nearby and calling in everyday once he is settled but will that be too upsetting for him when we leave him?
I have found the other postings helpful and its good to get these thoughts down.

 

[AJay]

Hi HelenMG, welcome to TP.

I've not posted for a while, I lost my Dad recently and am still trying to come to terms with it.

In the 6 or 7 weeks before Dad passed away I had to take the awful decision to place him in a care home. Up until then he was absolutely adamant that he could cope and didn't need any help other than me and my partner going in and doing most things for him. We were totally drained having to do this, work and try to have some sort of life for ourselves. After he had a few spells in hospital we realised that we couldn't cope and after SS getting very concerned about his capability in looking after himself and recommending full time care we admitted defeat and agreed, expecting total ructions from him.

After much deception about 'convalescing', we got him into full time care and he settled down pretty much straight away. He was similar to your Dad in that he was on the ball much of the time but then would slip into his own little world.

When he went into care I found that I suddenly had time to be able to do things with him like taking him out for drives and outings whenever he wanted. This is what the full time care did for both of us - relieved the stress from me looking after him and from him having to cope with me. Even though he had AD he seemed to realise that it was a good thing and settled really well. Sadly heart failure took him and we never really got the time to enjoy each other.

Yes he was upset for a few days when we visited and left him there on his own because he couldn't understand why he was there, but he soon accepted that it was his home, particularly after we'd moved a lot of his things there and couldn't wait to get rid of us so he could socialise with his new friends and charm the carers.

Please consider full time care, it could be the hardest decision you ever have to take and will involve much soul searching but it was worth it in the end in my case. I'm just very sad I didn't do it sooner.

Many hugs at such a hard time for you,

AJay xxx

 

[citybythesea]

Ajay has a very valid point. Now I'll give you the side of the home care giver .

You say your life is already on hold..(Look at my post ...reason..) as your dad goes further into his dementia it will only get harder. You do not say how old you and your sister are so I assume that you are at least in you 50's. I am in my early 40's and it can get really tuff....emotionally and physically. It's not a job 1 person can do and it's not easily handled by families. I have a sitter (who comes in at my discretion and literally sits with mom 8 hours...yes she feeds her, gives her drinks and changes her clothing) I pay for her out of pocket. I then have an RN who comes in 2 times a week to help me make sure she is healthy and not going down in a miserable way (I found it easier to get a dr's attention if they had "eyes" in the house. ) I also have a woman come in twice a week to help me bath her. (The rest rest of the week we have mini baths) Then there is the physical therapist who comes in twice a week to keep her limber (this is so moms joints will not become so stiff..after awhile some AD patients become immobile and there bodies have to be exercised for them just so we can take care of them without "breaking" them.

Also take into account that right now your grandfather knows you and your sister...over time this will diminish, but if you choose to keep him at home or if you choose to put him in a home...by all means start getting him used to other caretakers so that he is not easily upset.

We moved last year and I was able to move mom quite easily because she no longer recognized home...course as soon as we got settled she would ask about going home and I would just say we are home...in the end she accepted it, course she is happily demented and I can only wish that anyone who has AD can be that way instead of angry. I hope we have helped you some.....HUGS

NAncy

 

[citybythesea]

sorry, forgot to say that mom has lived with me for several years and to take care of an AD patient who lives elsewhere would be to nerve wracking if they were not in a "home".

 

[HelenMG]

Thanks AJay,
I am sorry to hear your Dad passed away so soon after going into care but I am heartened to know he settled in soon after and you were able to enjoy him without being so frazzled. If my Dad does settle into respite, then full time care, I know we would be less frazzled. The home we are thinking about is very near where we all live so I will still be able to see him every day. My sister and I both think it would be much easier to convince him to go into a home if he was convalescing but he is in such good physical shape for 91! he doesn't readily agree that he needs supervision/ companionship full time although sometimes he does know that it is important that the two carers come every day. We also tried him at an Alzheimers day care centre once a week for a few weeks but he started to refuse to go unless he went to MAss first (a major part of his daily routine is going to mass every morning). He also firmly believed the people at the centre were my friends, and he was just coming along with me, but he didn't like being left with the "dancing women" (they used to play music and have a little dance on the day he was there). He was also paranoid that some lady might want him as a boyfriend. This is a constant fear of his that any woman who speaks to him wants to be his girlfriend and he doesn't want that ! Taking him to the day care centre became too stressful and time consuming for me (I didn't get to work till after 12) so we then organised full time day care at home. I am going away for two weeks soon and my sister is planning to try him out in the nearby home on a respite basis. we will see how he settles or whether he ever speaks to us again !
Thanks again for your kind words.
Helen

 

[HelenMG]

Thanks Nancy,
I really appreciate your help and guidnce here. My Dad effectively lives next door to my sister as they built a small appartment about 15 years ago. Mum died about six years ago so Dad is on his own there now though we are in to him daily. His dementia must have started after a stroke about 10 years ago but we didn't really appreciate that it was in fact dementia until he started to get much worse. we kept making excuses that his forgetfulness and paranoid behaviour were just old age. Once we accepted about 18 months ago that it was indeed dementia, and progressive, we have been more mindful of him. He does indeed still recognise his family, most of us, much of the time, which is great but he does mix us up sometimes with his own brothers and sisters who have now all passed away. My sister and I (both in our 50's) have wanted to keep him at home for as long as possible as he is still reasonably alert and physically able although is increasingly more confused, "lost in himself" and paranoid. It is taking its toll on my sister (or rather her partner) now . She and her partner run a busy business and they don't get much quiet time together any more. I live nearby and have tried a few times now to take him up to my home but he doesn't settle and gets quite agitated thinking its "wrong" to sleep in my house and wanting to go home. It would be great if I could take him up to my house (as much for me to get time in my own house as for my sister) but we think that he is not able to cope with such changes now. I manage to bring him to my home for a few hours at weekends but he invariably wants to go "home" then. "Home" is a major area of confusion for him now as sometimes he wants to go home to where he was born and see mother and father. Consequently I spend a lot of time in his home, in the early mornings, evenings and at weekends. I have grown so much closer to him due to the time I now spend caring for him and, knowing how agitated he becomes when he is out of his surroundings makes it hard to put him into a home.

Both my sister and I work full time so now someone looks after him all day. Dads pension pays for our main carer who is an older women who has been coming to the house for a long time, (initially for a few hours cleaning)and he gets on well with her. we recently were given some free care-time by the health authority, a lovely young girl, but Dad is not so keen on her though he appreciates that she has to be there because we cannot. We don't want to request to change her yet as she is a lovely caring person and he gets on well with her most of the time. All this makes it hard to contemplate putting him into a home, even for respite, but I am going away for 2 weeks soon(work and holiday) and my sister thinks she won't cope with taking over my share of the caring due to her own family needs and business needs. I feel however, we have to try it out anyway and see how it goes. If Dad surprises us and settles, it will be good to know we have a place nearby where we can get respite when needed. If he doesn't, I may reduce my work hours a bit.

Thanks for sharing your life with your Mum with me, I know it is not easy caring for loved one at home but it is good to know that it can work out well with the right support in place.
Helen x

 

[citybythesea]

sorry for not posting back sooner....why not see if he can go into a home for the 2 week respite in a home that might be able to take him on full time. @ weeks might be enough time to get him used to that setting, if your sister only visited him on the days she cares for him then that might set in motion him going towards others and help relieve both your sister and you duties...do you understand what I mean?

 

[HelenMG]

respite

Thanks Nancy,
We are going to do that. We will try him a day a week to start with in the home near us where he might go eventually. We can get him used to the people there and the new surroundings. It would be great if he can become familier with it first, get to know some of the people and the place so it won't be so new and alienating for him if he has to go there for respite or longer.

My sister has decided that she will look after him while I am away but will try him a day a week in the nearby home also.
Thanks again for your help.

I read your other threads about your Mum being in the final stages of AD and saw your photos of her. Good to see you enjoying life and having good times despite the difficulties. Compared to you we have it easy with Dad as he still dresses himself mostly; he ccasionally has two shirts or three vests on, sometimes two ties and once had two hats ! but better to let him dress himself to maintain some independence. He can feed himself and can go walking. He is great for 91 and I don't want to see him in a home. but my sister's husband and her relationship is under more stress from him than I am and my sister is very much torn between the two.

I had him up with me again this weekend but he couldn't settle and I had to bring him home. Last night he was pretty with-it for a change and was talking about how much he liked where he was living, the rooms, the furniture he bought with mum, etc. Makes it all the harder to take him away from there. We will keep working to find a solution that keeps him with a good quality of life.
big hug