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Discussion in 'I have a partner with dementia' started by Grahamstown, Jul 27, 2018.
Often especially the small things.
Oh thank you. I still well up when I think about it but I wrote a stiff letter for myself to get it out of my system but just writing this reminds me. I am sure it was not unkindly meant but these small things do hurt. XX
I have reached that dreadful stage when certain music can make me cry. I am not sure whether this is a good thing or not. I have just heard You are my Hearts Desire by Frank Lehar and I was in buckets.
I think it is a good thing. It happens to me all the time. I think I need that release. It's not easy though. Thinking of you.
Depending on my mood I often play certain pieces of sentimental music just to help release my emotions. I find it therapeutic.
It’s nearly a year since I started posting on TP which has been a lifeline. Before that I had been at my wits end with his behaviour. Diagnosis helped but was like a death knell. I have had to adapt so much over the year and my husband has deteriorated to the point where his life has completely closed down. I live ‘alone’ now and I look after him, warts and all. My family and friends are a great support but after a bit they don’t want to hear you rabbiting on about your difficulties. Although I have had a difficult time recently with sundowning I have got to grips with it and I can just about cope. The lack of sensible conversation, the more or less total memory loss, the alcohol problem and the loss of companionship are now part of my life. I no longer want to do anything meaningful with him, so just do things that make him less solitary. He really doesn’t mind this and says how relaxed and happy he is quietly at home. It’s a hard learning curve but there is nothing one can do but carry on. I belong to the U3A which has also kept me going because there are a lot of people who have been through similar things or suffer themselves from memory loss. I was thinking today that it’s like going through the bereavement process without a death.
I belong to the U3A @Grahamstown I was always on the ramble and hiking groups but not for a while. I hope to get back sometime as I miss the walks and chatting to all of the different people who regularly turned up. It was always a nice morning out whatever the weather.
I was also studying with the open university but that has ended now and I miss it a lot as it was my main escape. At least we have talking point where we can have a moan.
We both belonged to the U3a, I have tried the on line version but have not had the time to take part.
I miss the banter, the stimulation and the groups, all aging now so we have drifted apart.
I can still leave him safely in the mornings but I can’t the rest of the time. I rush back for lunch but I have given up my afternoon U3A activities. I really would be upset if I couldn’t do the once a week morning sessions, and that is when I would try and some help. My son works a mile away and I can ask him to pop down over the lunch hour if I am delayed but I don’t like to ask him regularly just in an emergency. It is getting harder and harder though. You must feel very sad about this.
I miss the groups, we had been together for many and it was good to debate and know that diverse views would not alter the realationship. We would have had a lot to talk about tonight!
Many have issues of their own, transport and health have taken their toll. I have been grateful for the experience of being with a lively open minded group.
Enjoy your time while it is possible.
I have accepted I cannot leave my husband on his own, he is not safe to be so. We have to find ways to manage, Ted Talks etc. help fill a gap.
I had to give up Tao Chi. I should at least do the foundation moves but it is hard to get motivated.
The headline of this advertisement reads ‘Here is how you can help those with dementia lead a normal life’. There is a picture of four people playing what looks like badminton. On clicking the link there is an account of the Alzheimer’s Society Dementia Friends initiative and an optimistic account of an insurance company’s backing of a wonderful sounding dementia centre in Merton. Am I the only one who looks at this and feels cynical and slightly queasy at the sheer misleading nature of this picture of dementia care? It is almost saying that suffering from dementia is fun and easily coped with if... well I am not sure what. The one attempting to lead a normal life is the person caring for the person with dementia, while the sufferer tags along in whatever stage they may be in. Apart from anything else, what constitutes a normal life is a very much a matter of opinion. Yes this made me feel very angry and upset as if all I had to do was be a certain kind of person and then the PWD would be able to lead a normal life. Well I must have done something wrong because by no stretch of the imagination are we leading a normal life. Thank goodness there is TP where we can have a rant!
You are not the only one to feel like that @Grahamstown
It really annoys me that dementia is portrayed like that with the implication that if its not like that for you then you must be doing something wrong. The link to the Alzheimers Society seems like a double blow.
Normal life? Normal? Come with me to my husband's home, talk to the families, talk to me in the depths of my terrible despair at being a prisoner of someone who was mad. Normal life? I don't even know what that is any more. thank you. with love, Geraldine aka kindred.
I do not read any of the bumf and utter rubbish there is out there concerning Dementia anymore it is invarariably written by people who have no caring life experience of this vile disease. But in the end how could they with the best will in the world you have to be a carer or a pwd to fully understand.Whew!!!! I do hope I’m not offending anyone it’s just my personal view.
I’m sure you can tell from my rant I’m not exactly having the best day on the caring front.
Hugs to all my TP compatriots A x
I absolutely agree but this ad was just there and the headline and the jolly photo just touched a nerve. I had to read it to be able to make an informed comment about it. I thought I shall see how he gets on ‘leading a normal life’, and decided to take him into the office which his old work allows him to keep with email and computer support. He wanted to go home as soon as I parked, sighed and fretted as we had a lovely cup of coffee and cake, saw normal people etc. and then had to be cajoled into going to his room to do his computer update. I had to do it all because he has forgotten everything. The computer was SO slow, unresponsive and awful, so off we went to computer support, can you imagine how much effort it took to get him there. Of course once there he did his best to behave normally, while I explained the problem. The really nice man took it and logged on and is keeping it to sort out. On the normal life front I then stopped off to do some food shopping on the way home. Awful experience and unfortunately one I shall have to repeat next week unless I go alone. It brought home to me the agony of watching the decline week by week, because he is much worse than when I last took him weeks ago. That ‘normal life’ the ad is on about is going to a purpose built dementia day centre with games, and other things. It has nothing to do with leading a normal life sort of life at all, it’s a dementia life. Ooff that feels better and at least I got a necessary job done!
Sometimes it just helps to say it out loud here on T P... A x
Do hope your day isn’t TOO awful but it’s only a hope. He has gone to bed now and I must be honest and say all he wants to do is either lie in bed, sit in his chair looking at his iPad, have his teas, coffees and meals, watch TV, walk around the nearby area and that’s it. He doesn’t want to go anywhere or do anything else. He doesn’t seem to want to see his friends and even the family is fading as something to be interested in. The only person he talks about is his daughter and how wonderful she is, and he is right but it’s so sad.
What is normal, I do not think I have ever done normal.
Rather like having 2.8 children per couple, it does not work and never has.
We went to a lunch group today, I sat between two with brain conditions, dementia is a misnomer I feel as it has so many variations.
I repeatedly answered the same questions, fine I am used to that.
The game of Beetle was such a struggle, comprehending the rules was a rule too far. They all enjoyed it after a fashion, I am sleepy but doing this while waiting for a visitor. Walking there and back was exhausting although I did meet someone for a real conversation on the way in.
I did not read about the Merton Centre but if a fraction was put into carer support it would help more I am sure.
I saw on TV an indoor cricket match as helping people with Dementia,
much of it is a sop to give a feeling of really doing something.
So back to the beatle game, it was very original! X
Today I thought I am beginning to be made to feel old because I have to tailor my life to his dementia life. That’s when I know it’s time to have a break on my own if only for a short time. I agree about the meaning of dementia, it is a brain illness which has some common features but is still particular to the individual.
I am the one causing my own misery because I want more from my life than my husband allows. He is happy as long as he is looked after can do as he wants which is virtually nothing, while I am handicapped. I have decided to book tickets to the cinema at a time when he is usually in bed resting because the afternoon is better than the evening. I am trying to live normally, ha!