Yes GrannieG I have 3 hours a week from Crossroads. I am hoping to get a couple more hours as well on another day. But that will have to be with another provider I think. Thankyou.x
Casbow's Diary.
- Thread starter Casbow
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Yes GrannieG I have 3 hours a week from Crossroads. I am hoping to get a couple more hours as well on another day. But that will have to be with another provider I think. Thankyou.x
Crossroads do cover the odd night too casbow. Might make you feel less exhausted and tired having a good nights sleep. X
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Chick1962. Thankyou chick. The one thing I have been very lucky about is that he always sleeps really well. I feel very thankful for that. I just find it very difficult to go out with him and he really doesn't want to go out. And I would worry if I left him. I think it would be risky. Especially if someone knocked on the door. And there is the risk of another seizure. It is very isolating not getting out. Thankyou for your idea though.x
Well we got through another day. Each day now he seems worse than the day before. I am just about coping with the fact that most days he refuses to get out of bed and my biggest worry about that is the fact that he has been without a drink since about 6.00pm the night before. I do give him a drink after dinner but he won't drink it, no matter how often a remind him. Most evenings I manage to get him to sit with me and yet he still manages to soil himself at some point when I can't know. He no longer knows when he is going. In the morning after I do get him out of bed he becomes very childlike and daft as well. Not eating quite as well as he used to and makes a lot of mess. When he had breakfast at 1.30 p.m. I found cereal put into his glass of orange squash
What a carry-on. When I say anything he just hums or sings . Not bothered at all. Doesn.t understand. My poor man.xx
Sorry you are having such an awful time Casbow. An old school friend of mine said that Marie Curie nurses will also help with dementia patients. Might be worth seeing if there is anyone in your area.
Good luck
Good luck
Oh casbow such sad and difficult times . Follow LadyA and send hugs too xxxxx
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I`m in despair for you Casbow. There must be some help available for you.
Whether it`s residential care or help in the home I doubt you have the strength to organise it. Could you get a period of respite care to give you time to recoup some strength and collect your thoughts.
Whether it`s residential care or help in the home I doubt you have the strength to organise it. Could you get a period of respite care to give you time to recoup some strength and collect your thoughts.
Our social worker came back from holiday on Tuesday and phoned me by 10 in the morning. She is going to enquire about a particular nursing home i like. Initially to see if i can have some respite. I have spoken to the dementia unit helpline again. Also had a visit from a lady from Alzheimers society who sat and talked to me for hour and a half and left saying she would phone social worker to try to get respite and also another day with a sitter coming in for a couple hours. I think people are doing their best but the services are at full stretch and I am not very pushy because I feel so bad about it all. When he is more like a mixed up small child I think it is ok. And before you all tell me off I know what I have to do, just don't want to.xxx
I know you don`t want to Casbow and many others here will recognise it too.
I was advises to push for respite to give my husband experience of residential care of my choice, rather than a placement by Social Services in a crisis situation.
I remember not feeling able to be pushy, or press for support because I was so worn down by caring. Deep down I didn`t want my husband in residential care but the thought of him being placed anywhere made me take action.
No one will `tell you off` It`s not for anyone to tell you what to do. Those of us who are responding to you just fear for your own health as well as your husbands.
I was advises to push for respite to give my husband experience of residential care of my choice, rather than a placement by Social Services in a crisis situation.
I remember not feeling able to be pushy, or press for support because I was so worn down by caring. Deep down I didn`t want my husband in residential care but the thought of him being placed anywhere made me take action.
No one will `tell you off` It`s not for anyone to tell you what to do. Those of us who are responding to you just fear for your own health as well as your husbands.
I know GrannieG. I feel that I will get respite in a nursing home or Home with full time nurse 24 hours. Just that nothing happens very quickly. I will give it till next Monday and then jog them. xx
I well remember the feeling, Casbow, at those (increasingly rare) times when William was peaceful, smiling at me, content, when I'd think "Oh, surely, things aren't so bad. You can go on managing." Unfortunately, these times, at that stage, usually only lasted a short while. When it would come time to need to change his ads or clean him up again and there was only me, there would be the aggression, back in full force. And of course, there was the ongoing problem that he simply was deteriorating in front of my eyes because he would not drink nearly enough nor was he eating enough. Very intelligent man, William. By this point, he'd been in for respite three or four times in the space of a few months. I've wondered since if he was keen to get back to full time care himself, because he always ate and drank well there.
Many similarities with my husband Casbow, except that his mobility has always been much worse, which in some ways made it easier. I have finally got Carers coming in just in the mornings. I have resisted it for so long but he has got used to it now. I do feel I am using up resources which other people may need more as I can cope physically, but I accept that it is the best thing. The Carers are lovely and now encourage him to have a drink before they go. He has a catheter so needs to drink but will just sit and sit with it in his hand until it slips over and soaks him. Will not use a 'beaker' or straw, and also spoons his food into his drink. He is much more compliant with Carers in accepting showers, drinks etc. I accept that it is better for his welfare to have others involved, not just me as they may notice things that I don't. I know your husband is not as compliant as mine so it is very much harder for you. You are travelling towards some sort of solution and will get there, but it is terribly difficult.
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I am so fed up. David just will not get out of bed. It happens every day and some days much worse than others. I am up at 6.30, so by the time I go to get him up at 9.00, I have done most things that need doing, and I want to walk the dog, or do something outside but worry about leaving him. Even the dog walk is down to 10 minutes and I worry something might happen to David like a fall or seizure and I'm not there. Also there is the washing of his pyjamas and bed linen depending on how wet he is. My tumble dryer is not working so I need to get the washing on the line.Not that I would use the dryer if I don't have to. Does anyone else have this trouble. Most of the time he won't even open his eyes. I take the duvet away at about 10.00 to hope that will move him but it doesn't. So very fed up.xx
Just after I finished moaning I went back to try again to get him out of bed and he got up. Once he was washed and dressed etc he ate his breakfast at about 12.15. And has since been playing with cards and leaflets and talking constantly about ????? So I've just had my lunch and will try to do some gardening. Hope you are all having a reasonable day.xx
I am sorry to keep on, but I can't do this much longer. What can I do with him. 12.45 and he still won't get out of bed. I cannot do anything. Done the housework. But weather not good to do gardening. Can't meet someone for lunch, or go shopping. Can't visit anyone. Even if he is up I can't do much but whenever I go in there he is so nasty. He hasn't had a drink since about 7.00 last night. Nothing to eat. How can he still lay there. Does anyone have advice. Should I just leave him to get sick. The room smells badly and he is in danger of getting sores if this goes on. This post is almost the same as I wrote before and this has being going on for at least 4 weeks. Sorry. I think I will e mail our social worker.xx
You've answerd your own question advice from another direction is needed.He can't be left and you can't physically move him there isn't another good alternative. It's so hard when emotions are involved.
Hope you get a positive response .I'm not quite in that position yet but on a few days he doesn't or can't get up eventually he comes round but that's about 10 0 clock.Dam disease. xx
Hope you get a positive response .I'm not quite in that position yet but on a few days he doesn't or can't get up eventually he comes round but that's about 10 0 clock.Dam disease. xx
Hello Casbow
You know what you must do even though you don't seem ready to face up to it. You are no longer able to meet your husbands needs and now is the time for residential care.
This is no reflection on you. It is mot your fault, it is the fact that the illness has become unmanageable for one person to cope with single handedly.
Your husband needs a team to work with him, a team of people experienced in managing a person with the challenges caused by dementia. Many of us have had to make this really painful decision and I think I can safely say few of us have had cause to regret it.
You are the only one who can decided this and all I can hope for you is once a decision has been made you will feel like a great big weight has been lifted from your shoulders.
You know what you must do even though you don't seem ready to face up to it. You are no longer able to meet your husbands needs and now is the time for residential care.
This is no reflection on you. It is mot your fault, it is the fact that the illness has become unmanageable for one person to cope with single handedly.
Your husband needs a team to work with him, a team of people experienced in managing a person with the challenges caused by dementia. Many of us have had to make this really painful decision and I think I can safely say few of us have had cause to regret it.
You are the only one who can decided this and all I can hope for you is once a decision has been made you will feel like a great big weight has been lifted from your shoulders.
I have made the decision for him to go into a nursing home or a care home with 24 hour nursing cover. The trouble is it all takes such a long time. I got very down when I made the decision but can't act on it. Then i think its no so bad. Then I think i can't do this anymore. What am I supposed to do. At the moment the social worker is waiting for the assessment papers before she can proceed. I find it such a roller coaster journey. I make up my mind what is best and then nothing happens and I think Oh I can manage. To be honest I can manage quite well but I am desperate for a break to get out of these four walls. Today I have arranged for 2 more hours sitting service which I will pay for without help and am happy to do so. So that is an improvement. To be honest with all the adverts on TV and on the internet, I think the whole care system is overwhelmed. There is not enough help out there. Lets all hope there will be some improvement soon.xxx
