Once again thank you for your replies. LadyA I am hoping it was just yesterday and that he will improve with the drinking. Trouble is because i can't get him out of bed sometimes til midday, There is not an normal amount of hours to push the drinks. Yes he does like ice cream. Never thought of that. Agzy I hope if and when the time comes for your wife to need that kind of help either a nurse could come in to do it, or there is another catheter called a super pubic which my friends husband had. I know it had to be kept clean round the wound where it is inserted (somewhere in the tummy area) and then it drains into a bag. Every so often the tube has to be changed by someone in the medical profession. It may not be suitable for ladies but then again it might. Anyway just a thought. x
Casbow's Diary.
- Thread starter Casbow
- Start date
Re the catheter- my husband has a super-pubic catheter and it has been trouble free. He kept pulling the normal one out when he was very unwell. It is changed every couple of months by district nurses who attend every week and check the site.
Today has been difficult to say the least. The morning was awful as he would not get out of bed. At about 12.00 he finally got up from a soaking wet bed. I did my best in the bathroom but he was so angry and difficult. So not a proper job done. then his breakfast just sat there and he just went back now and then to have a spoonful of what was by now a very soggy cereal breakfast. I had made him tea and a glass of orange squash but he wouldn't touch any of it. So by 1.15 I wanted lunch so I made him a beef and pickle half baguette and he ate that and drank some squash. By now he was much calmer and we had an hour or so before we had to get ready to go to his hospital appointment. Getting him ready took ages so good job I aimed for very early rather than a bit early. Long story short we arrived early for his appointment with a doctor about the seizures. Not to sure of the point of this appointment. but in the end his tablets for the seizure were changed. I think the doctor thought she must do something.!! When we got home all was well until dinner which he did eat mostly, but I have noticed that he doesn't eat all his food anymore. In the middle of all this I had to take his prescription to the surgery ready for when he goes to respite on Monday. by the time we left the hospital I had to go back to the surgery to give them the change of epilepsy tablets. Oh and lastly! The care home wanted his medication in liquid form. so I had to sort all that out. All in one day. no wonder i can't sleep at night.xx
Well he likes most things. But he sometimes doesn't seem to want anything. I leave a glass of squash where he spends most of his time. and keep reminding him to drink. But I swear the more I say something the more he ignores me, and or course if he doesn't drink when i say something ,he has immediately forgotten. x
William wouldn't drink either while he was at home. He would always take one or two sips from a glass when I'd give it to him first, then leave it. I took to giving him a fresh glass every half hour or so - apple juice, then blackcurrant squash, then apple juice again. Was a terrible waste, as most of it went down the kitchen sink drain, and he still became dehydrated. But sometimes it worked. And he loved icecream, and never refused that - so at one stage, he was eating three Magnum bars and a bowl of ice cream in the evenings. And still losing weight, because he wouldn't eat much else! 
It really is impossible, sometimes, and you can only do what you can do.
It really is impossible, sometimes, and you can only do what you can do.Yesterday was very boring. I managed to get him out of bed by about 10.30. But he was in a very bad mood and that carried on til about 2.00 p.m. Than he changed and became like a little boy. He sat until dinner time playing with cards and children's toys, talking all the time to his imaginary friend. After dinner he paced and shouted at the TV. I usually put the subtitles on and turn the volume off when he gets agitated with the noise. Then he finally sat down with me until 10.00 when he went happily to bed. The downside of yesterday was that he, for the third day running was incontinent from his bowels. There has been bowel problems on and off before but not like this. So now we go to Friday. He got out of bed for me the first time I asked. So we had breakfast together. His pad was a bit soiled again when i got him up but I tried not to worry. Carer came at 11.00 and I went off for my once in a week free time. When I got back I immediately knew that he had soiled himself. I was very upset as this was setting a new challenge for me and he was obviously distressed. Once that was sorted the afternoon was ok. Then again at bedtime when i changed him he had soiled. I feel this is another huge step down. What will i do now. My poor love is leaving me so quickly. Respite on Monday. I am so worried about it. Part of me wishes I had never arranged it. But I need the break. What if I loose the rest of him in the next two weeks. He has changed so much , so quickly. xx
I am so sorry , things have changed so quickly for you casbow. I can feel your sadness . You do need that break though and respite is the right thing to do . Big hugs xxx
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Hello Casbow , have been reading your diary , and just wanted to say I do very much hope your respite break goes well , for both of you , my situation is not yet anything like as bad as yours but heading that way I guess , sending you hugs and admiration for your courage xxx
JaquelineM. Thankyou. I feel pretty bad at the moment Need the break but will worry about him. Mind you at the moment he is being so horrible that I will just remember when he's like this.!!!! x
Respite care
Dear Casbow
Do please go ahead with your respite care. I was like you a month ago. My OH's behaviour was getting me down and he managed to get out of the house one rainy evening in his slippers and without a coat on. A neighbour and I searched for him but evenutally had to call the police. He was soon found but I was at breaking point then and called the social worker the next morning. It was arranged that he would go in for emergency care for two weeks.
I took him in and was told not to visit for the first few days to let them get him settled as it was his first time in care. I think to put it mildly, he was quite challenging.
For the first four days I just shut myself away not wanting to see anyone and only spoke to my sons and a couple of friends. On the third day I couldn't stop crying thinking what a horrible wife I had become and how could I put him in care even though I knew I was near to cracking. In the second week I felt so relaxed and enjoyed meeting girl friends and going to the cinema without having to book a sitter 8 days in advance. When I visited he was pleased to see me some days and on others didn't recognise me to start with. Once back home he is back to the way he was before i.e. challenging every evening. But my mainpoint is that he has no recollection of having been in a care home so I am now going to arrange for a regular weeks break every 5-6 weeks to retain my sanity. Like you we came away with various items of clothes missing although I hadn't had time to label any. Don't think that makes a difference as the shirt David had on had someone elses name in it.
We all know that all Alzheimers sufferers are different but do please take your weeks break and make the most of it by meeting up with old friends whom you have't been able to have a chat with of late. It does lift the spirits even though it is very quickly forgotten once they are home again. Will be thinking about you.xx
Dear Casbow
Do please go ahead with your respite care. I was like you a month ago. My OH's behaviour was getting me down and he managed to get out of the house one rainy evening in his slippers and without a coat on. A neighbour and I searched for him but evenutally had to call the police. He was soon found but I was at breaking point then and called the social worker the next morning. It was arranged that he would go in for emergency care for two weeks.
I took him in and was told not to visit for the first few days to let them get him settled as it was his first time in care. I think to put it mildly, he was quite challenging.
For the first four days I just shut myself away not wanting to see anyone and only spoke to my sons and a couple of friends. On the third day I couldn't stop crying thinking what a horrible wife I had become and how could I put him in care even though I knew I was near to cracking. In the second week I felt so relaxed and enjoyed meeting girl friends and going to the cinema without having to book a sitter 8 days in advance. When I visited he was pleased to see me some days and on others didn't recognise me to start with. Once back home he is back to the way he was before i.e. challenging every evening. But my mainpoint is that he has no recollection of having been in a care home so I am now going to arrange for a regular weeks break every 5-6 weeks to retain my sanity. Like you we came away with various items of clothes missing although I hadn't had time to label any. Don't think that makes a difference as the shirt David had on had someone elses name in it.
We all know that all Alzheimers sufferers are different but do please take your weeks break and make the most of it by meeting up with old friends whom you have't been able to have a chat with of late. It does lift the spirits even though it is very quickly forgotten once they are home again. Will be thinking about you.xx
Paddiwack. Thank you for writing. I know I have to do this. He went for i week last September but I didn't enjoy it. This time it is two weeks so I hope to enjoy some of it. The middle weekend is my nieces funeral which will be heartbreaking. She was only 40 with a lovely husband and two little girls aged nearly 6 and nearly 3. So I know it will be difficult that 2 days. I am trying to stop worrying about him. It is a different home this time. I felt that last time the home didn,t do anything except feed and water him. No one even said goodbye using his name when we left. He didn't have his glasses on and I couldn't find them. When I asked the nurse she said she didn't know he had glasses. So I don't know how long in that week he had been without. My poor love. He is a lost soul now. So sorry for all of us in this situation. It is so awful.xx
David is still in his dressing gown. Washed a little bit down below before i put clean pullups on. But he wouldn't let me do anything else. So 3.30 on a Sunday afternoon thats is as far as we got. He wouldn't get out of bed till 12.00 so had his lunch instead of breakfast. Tomorrow he goes to respite for 2 weeks. I will probably lose a few hours trying to get him dressed and ready to go. Just getting coat and shoes on can take a while or not at all.Which is why I hardly ever go out. What I am asking today is, if he goes into permanent care how do they work out what we pay. I think they will take all of his state pension but what about his BT pension. If that is taken as well I won't be able to live here.If I sell the house to downsize how would that work. Really worried about the money side of it. I don't think I could manage the running costs on my small pension. Anyone advise me please.xxx
Hi Casbow,
I'm afraid I do not know the answers to your financial questions - I am sure someone who can help will be along soon.
I do hope that everything goes smoothly for you tomorrow. Do you have a sharp stick handy so that you can give the Guilt Monster a good poke?! I'm afraid it might put in an appearance, even though you have no cause to listen to it.
I'm afraid I do not know the answers to your financial questions - I am sure someone who can help will be along soon.
I do hope that everything goes smoothly for you tomorrow. Do you have a sharp stick handy so that you can give the Guilt Monster a good poke?! I'm afraid it might put in an appearance, even though you have no cause to listen to it.
I'm not in the UK Casbow, so pretty vague on how it's worked out. I do remember that the home is disregarded as you are living there (it isn't over here, a percentage of the value of the home is taken into account), and if I remember right is it savings in your husband's name only are counted, (also different from here) and if it's below a certain amount that's disregarded. His state pension and half his work or private pension is taken, I think- but I could be wrong on that!
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Assuming house is disregarded (as you are still living there), LA will not contribute to costs if OH's other assets (in his own name + half of any savings in joint names) add up to more than approx £24,000. If less than that but more than approx £14,000 LA will contribute in part. Below £14,000 LA will fund all fees and have to offer at least one place which will meet his assessed needs without any top-up fee.
If OH is self-funding he keeps all pensions, Attendance Allowance etc. If LA are paying part or all of fees, OH will contribute AA, state pension (except approx £23 per week) and half of BT pension or any other private pension. You may need advice as it depends on the value of pension and your other income if you would be better off to give up the BT pension n and claim pension credit instead.
Can't advise on downsizing house but someone else will be able to.
That's a very bare bones summary and probably doesn't cover all your questions, so keep asking!
Hope that the respite period will give you a little calm to help you think through what's best for the future.
Well David is now in respite. I don't know how I feel now. This morning I felt sick. Couldn't eat ,wanted to just cancel it and somehow get on with it. But then he wouldn't get out of bed. Finally at 11.15 I managed to get him out and then it was trying to get the wet things off and cleaning him. Then get him dressed.
The whole thing is so difficult and stressful. Then he doesn't want breakfast, then he does. Then he wants the loo. Nothing happens. So he has gone to respite and i know for sure that he will have an accident, so it will be a bad start as he probably won't let anyone help him with that. He gets very upset when he has poo accident and pushes me away. It is a terrible battle, trying to 'talk him down'. While I was there the senior that was looking after us went through loads of questions and details about him. While this was happening he had disappeared and I didn't see him for an hour. He was wandering about looking at everything. When I had to leave I gave him a kiss and said ' I just need to go to the car to get something I forgot. this was not a lie, but I then left and went to get the tablets I had forgotten to give to the Senior I had been talking to. So here i am feeling dreadful but hoping the staff that do the evening and/or night shift will be kind and understanding of my dear lost soul of a husband. Why did this happen. Bloody dementia. Sorry. xxx
The whole thing is so difficult and stressful. Then he doesn't want breakfast, then he does. Then he wants the loo. Nothing happens. So he has gone to respite and i know for sure that he will have an accident, so it will be a bad start as he probably won't let anyone help him with that. He gets very upset when he has poo accident and pushes me away. It is a terrible battle, trying to 'talk him down'. While I was there the senior that was looking after us went through loads of questions and details about him. While this was happening he had disappeared and I didn't see him for an hour. He was wandering about looking at everything. When I had to leave I gave him a kiss and said ' I just need to go to the car to get something I forgot. this was not a lie, but I then left and went to get the tablets I had forgotten to give to the Senior I had been talking to. So here i am feeling dreadful but hoping the staff that do the evening and/or night shift will be kind and understanding of my dear lost soul of a husband. Why did this happen. Bloody dementia. Sorry. xxx
Casbow, what finally made full time care essential for William was his aggressive refusal to allow me to clean him or do any personal care. The stress and anxiety of trying to get wet or dirty pads changed, trying to keep him somewhat clean, trying to get him dressed/undressed without him physically attacking me just became too much. In the nursing home, they had uninformed male carers, and it made all the difference! They never had a problem with him- he would even go to one of the staff if he needed help. I hope it turns out like that for your husband, that he gets on well. Try and get some rest. xx
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