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Discussion in 'I have a partner with dementia' started by Grahamstown, Jul 27, 2018.
Happy 80th. I'm pleased you had a chance for a celebration.
Ooh how lovely to get your messages. Thank you all! I am having several small celebrations, next one an Open House here for a drop in for a drink and a snack for the WhatsApp group where we live who all know him. And the family are coming on THE day for pizzas, got to keep going in spite of the idiosyncrasies of this Through the Looking Glass world.
A really lovely thing happened yesterday. Our Chinese neighbour knocked on the door bearing Lotus root jelly, never had it, so I looked it up and it is chock full of good nutrition and you have it with honey, and he liked it. I take his parcels in because I am always here and this was a thank you. So that’s an unexpected addition to his diet. He refused to eat much for the care lady today, the story of my life, but he did eat the jelly. It has a lot more nutrients than jelly we buy here.
What a gorgeous flower arrangement, thanks x
Today I am having a ‘me’ day as I realise that I have everything against me. I have a borderline blood sugar level for the first time in my life revealed by my annual healthy heart check up with the doctor. He didn’t seem to know why I was there and concentrated on the blood sugar result. He told me to lose weight and exercise more and then when he realised I had a husband with dementia he talked more about him and he didn’t even take my blood pressure; I am the age you all know; I have all the most putting on weight foods out there in the house for him which is a peculiar form of torture; and I feel stressed to death by dealing with dementia even though I have things vaguely under control. So I have signed up to the new attempt to help people lose weight and it has an interactive chat with other people who are signed up I thought it might be helpful after experience on TP. He is bad these days, so tired that I have him lying down on the couch in the sitting room for the first time rather than going to bed, so that I can keep an eye on him; coughing with food even when blended, having to be instructed to drink every sip and take every bite, surviving on the supplements. However the sun is out today which is very cheering and my daughter is coming for lunch. Here is the early morning sun which I couldn’t resist taking
My open house for my neighbours went so well last night, everyone rallied round and it was a very happy atmosphere. My husband was very well entertained by the guests who all know him and chatted to him, encouraged him to have snacks so he did, and he told them about his youth as he dozed in his chair on and off. Today is different, it might as well be any old day, he is in bed after the mental exertions of last night but as usual anyway, so I went out to the local coffee shop for croissant and coffee and feel lucky to be so near and able to go. A lovely man visiting his brother where I live from Birmingham got chatting while his daughter and her husband got coffee, and he said he was nearly 83, had done his knee in and practically told me his life story. When I told him that it was my birthday and that I was alone because my husband had dementia he was so kind and they all were very celebratory. It was as if they were happy to make a connection, because they were very harassed when they joined me at a communal table. The kindness of strangers is incalculable. Special days are a special kind of torture and only a bit of Bach can keep me robust. My children and grandchildren are coming over and I shall need all my strength not to break down.
I dip in and out of your messages @Grahamstown - Happy Birthday. I just don't know how you do it, I'm more than 20 years younger than you and it's absolutely killing me, not so much the physical side (which must be so difficult for anyone the same age as their PWD) but the mental side of the loneliness and stress of looking after someone with Alzheimer's. Very pleased to see that you've been having some birthday celebrations, my goodness how you deserve that.
This is the hardest part of all for me at the moment because he is still on his feet, just, and continent. Today he would not get dressed and spent most of the day in bed. The family arrived and after a bit he came down, still in his dressing gown and watched TV with two of his grandchildren while the rest of us, nine, went to get pizzas and have a drink. He stayed up, ate a piece of pizza and we all watched Strictly which he will stick with, before he started his going to bed routine. He was very confused and kept saying irrelevant things but he lasted longer than I expected two nights running. So I have negotiated a difficult time with help from family and friends and I am ready for the usual routine, probably mostly asleep, which is hard but emotionally less exhausting.
My partner might be at a similar stage to your husband. But he doesn't sleep so much during the day, he goes to bed when I do and gets up when I do. I help him shower and dress and he's still continent (although we've had a few issues!) and can still go for walks of 1/2 mile max. The problem is the lack of verbal understanding, negativity and the inability to find things to do - I have to be his entertainment organiser as well as everything else, taking him out all the time. He doesn't have family or friends except for 4 children who never visit or phone. So it's my friends and family he sees but obviously that's not all the time so he'll sit around a lot saying who can he talk to, what can he do, can he get a job, etc etc. We've just moved to be nearer my family and I'm starting to get care in place for him to give me a bit of a life! Must get on, boxes to unpack!
Just wanted to say happy birthday @Grahamstown. It sounds like you managed to have a celebration that kept everybody happy or at least happyish, and that is no mean feat.
It worked out perfectly for me because I wanted to include him rather than going out somewhere without him and the rest of the family were content with that. It was a bit of a squash but that was more cozy. He is so exhausted by it all even though I don’t think he remembers anything about it.
@White Rose I am sorry to say that my husband never hardly goes out now, spends most of the time in bed, doesn’t ask what he can do and has difficulty initiating any conversation now, although if asked he can reply with what information he can dredge up from the past. Meals are an ordeal for both of us and I have an absolute minimum that I can tolerate so end up feeding him because he is refusing food. I do hope you get unpacked and settled so that you can have a bit more time to yourself. That in itself is not a complete answer for me because I miss him and do a lot alone.
They must be at different stages, my partner still eats, all the time if he had chance! So hard to get him to understand anything though, repeat, repeat, repeat. Yes they are lost to us aren't they, it's almost difficult to remember the good times with them, essentially we are alone (except without the option to go and do anything about it!)
I feel exactly the same as you do. It’s emotionally exhausting, more than physically for me. I do sleep pretty well thank goodness, with the occasional bad night so I hope you do too.
Meals are a difficult issue, I put small amounts of food on the plate
I don’t ask anymore & make sure everything is sweet to taste
Calories not quantity
Meanwhile I am munching salad & vegetables like there is no tomorrow & making lots of lazy soups & one pot meals
whatever I put infront of Mum it’s never right! Hey ho !
try not to let it get to you
toddler tantrums about food - I treat Mum the same as I did my kids!
Easy for me to say as I don’t deal with it every day.
I too feel like you. My husband is so confused, even more so since he's started on Respiridone for his aggression. Almost nothing he says makes any sense and his following directions when dressing or showering is getting much worse. We are grass widows.
Thank goodness my partner still sleeps well, most nights if not all, sleep makes such a difference to how well, or not, we cope.
Well @Grahamstown we had our last day trip to see the oncologist today. She said that it is not fair to dad to keep dragging him to the hospital every 3 months and we agreed. If we need them we can phone them. Dad has no idea where he has been or why. She also said that radiotherapy would be an ordeal for dad if it comes to that because of the travelling. Again I agreed.
Dad sleeps like a log for at least 20 hours a day.
Still eats quite well though.
On it goes.
It’s such an ordeal and I am with you all the way with your decision. It’s just grim but we have to be there for our dear men. I am not doing too well with him at the moment, making the right decisions about dressing and eating. I let him not get dressed when he won’t and the same with eating although I have my limits and I do actually feed him at times when he won’t feed himself but it’s horrible because he doesn’t want to eat. In bed most of the time and even when he is up he is dozing. I did have a lovely birthday celebration and he was able to participate even though he didn’t know what was going on. I watched ‘Elizabeth is Missing’ and though he is far worse than she was at the beginning, the frustration of the daughter was so familiar. Marvellous piece of drama and very poignant.
He has just seen a birthday card and asked me if I am really 80, so sad.
I have yet to see Elizabeth is missing yet @Grahamstown but I shall catch up with it soon. I am glad that you had a lovely birthday. Dad will be 90 in April but he does not believe it.
I am not sure that I could cope with feeding dad but there are many things that I did not think I would be able to cope with before this.
At least dad still has his wit. He told me the other day when I insisted that he got up at 4 in the afternoon that 'I will probably make him get up and get dressed to walk to his own funeral' that made me laugh but he added that he will make sure that he is late for it. I just don't know what to make of it. How can he be so ill and still be so funny.
It beats me.
That's very true. Because my husband had a fall during the night a few weeks ago, I'm currently accompanying him to the toilet when he needs to go. Unfortunately that can be as many as four times a night. I'm so tired.
Thinking of you, Sue, xxxx