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Discussion in 'I have a partner with dementia' started by Grahamstown, Jul 27, 2018.
Waving at you from not so sunny Devon!
I am cautiously optimistic that his appetite has improved a bit, yesterday and today. He has been on the supplements for a week now and I am wondering if they have given him some desperately needed essential elements in his diet. He is still very sleepy, head on chest when up but mostly lying down. We shall see!
My visit to Dad in CH was mainly me sitting next to him while he slept head on chest. He is still losing weight but when he did wake up he showed a glimmer of his sense of humour.
It’s a slow fade.
Bought Dad two new pairs of trousers off the site recommended on the forum, very good quality & smart like chinos but drawstring.
Bless the ladies in the sitting room we’re more interested than Dad!!!
Wonder of wonders, the carer I have been negotiating for arrived today a week ahead of the expected start. She is lovely, a mature competent professional caring person and got into the job very quickly as I talked her along the way and showed her the ropes. My husband reacted to her positively and I feel a weight off my shoulders. She showered him and gave him his lunch and got him back to bed for his rest.
Time to celebrate me thinks
That’s good @Grahamstown
Yesterday there was a garden party for the development where we live. He ‘knows’ many of the people and a young woman who is fond of him came to our door with her mother whom he also knows and said are you coming for some food. I signalled to take him and they shepherded him a few yards and sat him between them with some sandwiches and a glass of something. People came up and spoke to him and he seemed to enjoy it. When he was sitting having his lunch today he actually said that there had been a lovely party yesterday so that memory was still there, which I found astonishing. If you are honest with people and allow them to help then some will step forward to help I have found. I was able to move about talking to people as he was taken care of.
Today for the first time I prepared his lunch and whizzed it up with some milk and took it to him in his bedroom where he sat on his small balcony and enjoyed it with no difficulty swallowing. Banana, a supplement milkshake and a smoothie to follow and that was all much easier. I felt quite gutted when he said that he would really like to take me out for lunch or dinner, as we sat there no longer able to enjoy a meal together because he is unable to eat properly and so weak. I am constantly being caught this way because watching him shuffle off between the two women yesterday, a shadow of the strong vigorous engaging man he was, though still able to charm people, really choked me up. I think that’s the hardest part of caring for him, the mismatch between his illusions and my reality. I live alone in the house with him but I am not lonely because people are kind, but it’s not HIM, and I feel that loss acutely.
I am thinking of you @Sarahdun and how you are coping without your partner in the same house as you. To be quite honest, I don’t think that matters, what matters is what is best for his well-being and yours. I think @kindred led the way recently in finding a way to do this without feeling ‘guilty’, having not wanted to do it at all because it’s not an easy thing to do. I understand perfectly about the cost, and I am very aware of how much it will be when I can no longer cope. The home care that has just started will keep us going for a bit longer, but when he is too weak to get out of bed and walk, I don’t think I can.
We really have married twins! Mine has charm that counters the other issues. Carers twice a day is not working for us, he is past that. I have asked for an emergency urgent assessment, Take care of yourself xxx
Where does it come from? A touch of normality which is precious but heartbreaking at the same time.
Oh dear! I hope you will be listened to Alice.
Dad is sleeping more and more this past couple of weeks, probably most of the day. He is ok in the evening when we watch some quiz shows but other than that he will be asleep. He is eating less too. It's going down ok but only half the amount. There has been a significant decline as far as I can see.
Out of the blue yesterday dad recieved an appointment by text on my phone for an appointment at the cardiac dept of our local hospital tomorrow. I will phone them in the morning to see if it is necessary because it is a lot of effort getting him ready. He had a heart attack while in hospital in February so I can only think it is to do with that. Took them long enough and I don't really see the point in going but we will see.
Thank you for the kind words - they mean a lot!
I had discussed visiting our son and his family and today was the day. He was not communicating well and eventually it was okay to visit and it did coincide with my husband’s evening wakefulness. The grandchildren were very welcoming, our son a bit subdued and our daughter in law was totally lacking in any interest. Perhaps they had had a row, who knows but for someone who professes to be a practising Christian she has absolutely zero sympathy or compassion for my stricken husband. It took me a great deal of effort to get him ready to go and drive him there, I haven’t managed it for a while but now wonder if it’s worth it. So so upsetting but I know from TP that this is not unusual so this is my chance to get it off my chest because what purpose would it serve to say anything.
Oh! Grahamstown it hurts when family let you down by not being empathetic. It is such an effort to keep family occasions and visits going. This week I was expecting my stepdaughter to come and stay with my OH while I visited my daughter who has just completed five weeks of cancer treatment. Three weeks ago she agreed to stay for three nights, today she can no longer come,reason, train strike. This is a person who travels abroad regularly, has a brother who drives; she drives only locally, friends take her to airports, and night clubs in London at weekend. A forty five year old single with no ties whose job allows her to take time off whenever. My first time of asking for support from anyone,so will I say something, no, because if she can't help me on this desperate occasion, she can't have any empathy for anyone. Sorry that turned into a rant. I will be visiting my daughter for a day and taking my reluctant anxious husband with me. We will carry on regardless. Take care.X
Part of the problem is that people are so clueless about dementia and its complexity. Many think its only 'forgetting things'. They have even less understanding of the toll it takes on the carer. Your DIL probably thinks why dont you just leave him at home and get care assistants to come in without understanding thats probably not possible. I find my mother even totally dopey about the state OH is in and its impact
(she is very elderly and slower thinking than she was admitedly).
Thank you @Pipeth and @Roseleigh your words restored me to some sanity and I feel better today after a morning out while my cleaner was at home. I was very upset all evening and had to watch rubbish tv to distract me. Just a three hour break works wonders having a chat to friends and listening to an excellent talk on Buckingham Palace, so interesting about its evolution and decoration. It’s strange how neighbours who we don’t know very well are more compassionate than our own family sometimes. There must be many reasons for this and some family members are wonderful. Perhaps it’s just too painful close to home for others. Another crazy day today, with the heat I think.
Hello all - just catching up with posts again. I am hibernating a bit.
I notice how much more alert my husband is when he manages to eat enough. It makes a huge difference- but sometimes he can’t manage the food.
Tonight we went to the pub for dinner with friends - I try to keep up a semblance of our past social life. I ordered mash potato and one rissole for my husband - but he couldn’t manage it and threw up on his plate- the friends kindly turned away and we all pretended it was just time to say goodnight.
This slow journey towards death is something you all understand - I feel both sadness and great love and protectiveness when these events happen.
I must just keep going because i know what a great loss I will suffer when he is not here.
He started the supplements about ten days ago and for the past couple of days I think he has been a bit more alert and eaten more, so I am thinking that the extra vitamins and minerals are doing their job. Otherwise going out is no longer an option because getting there and back is a trial to him and he certainly couldn’t stay for ordering food and drink and chatting. I have invited people to start coming when I know he will be up and more awake and that seems to work at the moment. Things change all the time though and we have to be flexible. I am living a single life otherwise, necessity not choice and I miss my lifetime companion so much. He started reminiscing about his childhood home today and said he would like to go there, cut me up did that.
Oh dear - @Grahamstown - don’t let his talk of going home get to you.
I’ve had 2 years of it and now when he says “can we go home” - or “I want to pack up and go”
I try to hear “can I go to bed “ -
or another tactic is - “we just moved here and it’s so nice !! See that picture of.... “
But yes vitamins are clearly an important ingredient in brain function.
He was clearly starving himself involuntarily but every intervention is like another step downhill. He is starting to get very odd, difficult to describe it but it’s as if the extra nutrition is having a bizarre effect on his behaviour, especially sundowning which has been particularly bad the past couple of days. He went out for a short walk by himself yesterday the first time for weeks but I followed at a distance and did manage to stop him from trying to go the wrong way by saying that I thought I would come and meet him. On the up side he has accepted the carers very well and they are quite motherly so perhaps that’s why. I always seem to have to be one step ahead. I am going on a respite break in three weeks time and he is booked into the same ‘hotel’ he went to in May. I am in need of a period of normal life but I have mixed feelings.
His idea of day and night has gone awry because at 1.30pm he thought it was the middle of the night and said how odd it was that it was so bright. Even at 4pm he still thinks it’s the night and wanted to know how I knew it was the afternoon. I mended a chair and we commented on how comfortable it is, and he said not half as comfortable as a cuddle with you. Much as I have loved him I shrink at the thought because he is a different person now and the thought of physical intimacy horrifies me. I say nothing because he will forget until the next time because that is entering his mind more and more often now. I know this is a frequent issue for people on the forums and not easy to deal with. After two not so bad days, except for the sundowning, today is turning into one.