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Discussion in 'I have a partner with dementia' started by Grahamstown, Jul 27, 2018.
I am the same. I feel guilty but I can't help it, it's arms length only for me now.
I am relieved that I am not alone feeling like this.
No, definitely not alone
Thank you Canary, I couldn’t have imagined this ever but it is so.
No you're not alone. I think our relationship changes with the onset of the disease. It's more like an adult/child relationship rather than wife/husband. I love him just as I love my children but not in the way I loved him before.
Back to ‘normal’ today, up at midday and another tortuous attempt to get him to eat. He will drink his supplement and then ‘has had enough’. I happened to go into a local artisanal bakery and café yesterday (wonderful homemade style goodies) and chatted to the lady who recommended a chocolate and berry roulade, so I gave it a go and he loved it and even then he refused to eat more than a half. She said she would reserve another one today because they go so fast. So I went to pick it up and freshly baked proper sausage with chutney rolls came out of the oven and she recommended one. So for lunch he had a third of a sausage roll, the rest of the roulade with constant prompting to eat another mouthful, even feeding him to get going, aargh. I get desperate when he won’t eat and at times I just want to let him be. That would be tantamount to letting him starve and I can’t do it. Nothing works and it’s worse when I have spent time trying to prepare delicious food so I will try anything to get something into him regardless of the balance. I now know that my optimism earlier this week was a false dawn as we all know so well, and he was seeing imaginary people in his bedroom the night before last which which had stopped him going to bed so he was very tired yesterday! Uh uh...
I can also relate to the sex thing.I feel bad, awful, but he won't wash and well, that's not the only thing. I just don't want to because he just isn't him anymore and he wants sex - not me.
You should feel no guilt. Nobody should even in a marriage if you dont feel desire.
Dear @big l and @Roseleigh Yes it’s a very delicate thing is sexual attraction and so easily damaged even in healthy people. I could never have imagined it but the disease has wreaked havoc with me too. I love him so much, like a child which is how he now is, but this changed personality is no longer physically attractive to me and it makes me cry to even say this. Writing it down does help relieve the awfulness of it all. He is trying to get into my room nowadays when I have gone to bed, the portable lock didn’t fit but I am managing to deter him most of the time saying goodnight over and over again.
I really need the consolation of coming on here to enable me to deal with my weakening, and difficult to feed man. He is very poorly today, but won’t get dressed, will eat only small amounts. It does help but it’s an ongoing struggle.
The carer came today and he was like putty in her hands, showered, shaved, clean clothes and ate all his lunch, she proudly told me. I didn’t mind because I had two hours of not having to do it all for him myself. He has the habit of wiping his hands down his trousers, so after having a chocolate biscuit, his lovely clean trousers have chocolate marks down the front, even with a napkin on his lap. I really dislike the new person that is my husband, I really do not like this different man. But when I left him with her while I went to the shop, I felt a great wave of anguish at the thought of his sweet helpless face as I said I was going out as they started with his shower, his skeletal body trembling with effort.
Sweetheart, I am with you all the way. I know, I really do. Keith seemed to become a boy again with a sweet face and a Mick Jagger thin body that was so poignant. The emotions the business puts us through, all my love, Geraldine.
@kindred..Hi .that description fits my husband to a tea ((wry smile ))...and yes emotions are all over the place.
@Grahamstown ...I'm glad you managed to have some time to yourself.
(((((((hugs both ))))) A x
and to you, sweetheart. GXxxx
Thank you ...I’ve missed your posts and kindness itself A x
It’s terrible isn’t it @kindred such anguish is so hard to bear, all these proud men and women reduced to what? Perhaps looking after them is a privilege, reminding us of our humanity and dependence on each other. There are worse fates although this is pretty close to the it. It doesn’t end when they are gone either, always that memory and when I say that I think at least they are spared that knowledge when memory is gone.
I hold in mind that how we end up is not how we lived. It helps me to separate the two. Our later years are a difficult life stage to get through as best we can. Different rules seem to apply. But most of us get our time in the sun in our youth orbmid
Sorry, that sent itself before.i was finished.
I was saying that most of us have our time in the sun before the end stage. Keith knew how to live and got the best from life. That was who he was. THe dementia time was the difficult final part of life. Even my mum, paralysed with MS for forty years had a time in the sun, she was a cycling champion. REmember the time in the sun, that's the essence of who we are. I know it's so hard. All love and strenght to you. GEraldine xxx
Hi.. Caring for my OH with Lewy body dementia and seeing the decline of so much of him is soul destroying.. Yesterday sundowning everything got overwhelming. Locking and unlocking doors to let 'people' out for an hour I could just cope with.. Then I sat next to him taking his hand and he asked where his wife was...who I was and where were we now.. I Said I was his wife and talked about all the houses we had lived in hoping to stir memories.. He looked completely confused.. Then I did the dreaded thing.. I remembered what he used to be like..not so long ago.. tears running down my cheeks, thankfully unnoticed by him, I went through all the home's we had shared.. To watch him slowly loose all the memories we've shared for the last 59 years is unbearable......
That is something to hold on to thank you G. Both our husbands have gone from the heights of their powers to the lows of the end of life and you are right, that’s waiting for all of us, and theirs just happened to be loss of brain power.
I too have had big fat tears rolling down my cheeks today @Linton it overwhelms you at times, alternating with exasperation, it’s an emotional roller coaster. He is going to the care home where he went in May next week and the assessment was this morning carried out by one of the ladies who knew him from then and he did seem to recognise her, or at least said that he did but he does love to please. The four month gap shows up his deterioration starkly but I think it will be beneficial for both of us. I do worry about his lack of stimulation at home especially when I see him brightening up with the care lady interacting with him. She seems well trained for dementia care. I am feeling mentally and emotionally exhausted, not so much physically. I am fortunate that I can arrange it for when I had planned a holiday for us both, so it’s painful and not entirely welcome, because I shall miss the old him so much, as I have been doing just lately, futile I know. Take care and keep hold of good memories for both of you x