What a gorgeous flower arrangement, thanks xHappy 80th @Grahamstown
I`m glad you managed some celebration even if it was bitter sweet. We have to take what we can.
View attachment 61807
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.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.
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.the mental side of the loneliness and stress of looking after someone with Alzheimer's.
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!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.
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.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.
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!)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.
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.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!)
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!)
Thank goodness my partner still sleeps well, most nights if not all, sleep makes such a difference to how well, or not, we cope.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.
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.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.
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.sleep makes such a difference to how well, or not, we cope.