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Discussion in 'I have a partner with dementia' started by maryjoan, Nov 21, 2018.
Card Reader? Flaming nightmare - I have one for NatWest and what a pain!
Does anyone know about the "Shared Lives" scheme - it has been suggested to me by the Dr but I do not know anything about it....?
Oh, I love a rant. I’m sitting on the sofa with my wife gently sleeping. We’ve been out to our usual M and S cafe for breakfast but indecision spoils everything and I get very irritated with this state of mind. No, I don’t want this or that she says, we drive there and back wasting fuel so she can just sit in front of the tv, what do I do now? I suppose my biggest emotion at the moment is one of regret and disappointment that my life is not my own anymore. We sign up for in sickness and in health but not anticipating the one disease that will drive you up the wall. I wonder if we knew at the time whether anyone would form a partnership because dementia just kills every nice feeling I have towards my wife. Perhaps I’m just selfish and self-centred and others are more naturally patient and loving, able to live more at ease with this day to day torment. Others without any association with dementia can never know what it does to partners and family. It’s probably easier to appreciate living with any other illness, but dementia, oh no! Rant over.
I had to comment on your post @Dutchman because I am in the middle of the same situation. Up late, collapsing into chair, served with tea and toast, spent an hour over this huffing and puffing, told daughter when she rang that he is feeling fine and now I have to get him moving to go and have a haircut. And he wanted to know if we were going to have lunch! Aargh...
@Dutchman ... you mentioned something that has been on my mind. Mum - who I am not close to - has been in a CH for 2 years now. Meanwhile, I have an ongoing long distance relationship of 12 years standing. He lives at the other end of the country. For years I have had some misgivings about the controlling nature of his personality, which is probably why I have resisted moving in, but more recently I realise I have decided that I never will. (Even though the relationship is otherwise good and I want it to continue!)
Unfortunately, the reason I now won't commit is dementia. Having seen what my mother is like and knowing some aspects of my long distance BF's personality.... no. Definitely no. I will not be spending my old age looking after someone with dementia. Makes me very sad to say it but I'd rather be alone.
It’s interesting what you say as when (or if ) I’m on my own I wouldn’t take on another relationship, not with the possibility of caring in a dementia situation. I could do as much as I could for a friend but it’s the ability to be able to walk away and have some respite at the end of the day. The sad tragedy of dementia is that you’re never sure if it’s down the road. I know you could probably say the same with any illness but dementia sort of trumps the lot. I know many would say that the threat of any serious illness could stop you from committing to another person. All I can say is that any illness that allows the normal function of the brain has got to be better than the vacancy of dementia.
When you go out @Dutchman buy whatever you want and give her a choice of two at most ie tea or coffee/scone or bun etc. Too much of anything throws them. Mostly I just buy what I think he would like. If you get it wrong just smile and say next time you'll choose something different.
I am struggling with myself these mornings as I am a lark and up dressed and ready for the day and then find my husband uncooperative. This usually consists of him sitting or standing on the spot and refusing to move. Leaving him there until he is ready to move doesn't work.. He would stand there until he fell down. So if anyone has tips for dealing with that scenario then I would love to hear them. I have to resist a strong urge to run about screaming and pulling my hair out in lumps!
Hi @Dutchman Dad has both advanced alzhiemers and advanced oesophageal cancer. His cancer has paled into insignificance compared to the dementia.
I can cope with the cancer because it is what it is but the dementia is another thing altogether and there is no fighting it. It rules my life at the moment throwing spanners into the works at every opportunity. I feel it has been designed to thwart every effort I make to help dad and yes it trumps the lot.
Does he have Parkinsons or Parkinsonism? The rigidity/freezing can be the problem
Theres a couple of Teepa Snow videos that look helpful. They are about Parkinsons and Lewy Bodys, but the principle is the same.
@canary I did talk to his psychiatrist a while ago about that. My
Mother had Parkinson’s and he’s not quite the same. No tremors. This gripping or standing on the spot is unnerving though. My wrists and arms are often aching because of it but he is not trying to be aggressive just gets into this mode and can’t get out of it.
Having looked at the Teepa Snow method of getting him to sit down I will try that as I am more the demonstration of how not to do it at present.
These clips are are great, whether they apply or not to the person we care about the skills seep in.
Thanks for posting.
Today is my tipping point. I was to take OH to an event, for a dementia charity event, for which we had tickets this morning but he refused to go. After a bit of a tantrum I said I'd go without him and left him in bed. Thought why do I bother to try and do these things for him. Feeling a bit guilty now because I didn't go either, went and had coffee with a friend and am now sitting in car on country lane listening to the birds with a lovely sandwich and coffee trying to steel myself to go back. I have left him with the dog and know he has walked him and is now back at home because of tracker. I miss him so much it hurts, but what can one do. Sorry for waffling on, but you're the only people who will undestand x
And how I understand @lovey11 - the patience needed is sometimes beyond us and we need a breathing space. He has only been up since 11.30, woken by a telephone call from our daughter but already he wants to go back to bed and then I can recover from a mindless morning. I shall go and pick up some dry cleaning which will be very exciting because I can talk to someone sensible even though it’s about my order!
We do understand. We all suffer in different ways because of the dementia that has taken our loved ones, and left a shadow of them behind.
Daily, I try to tell myself to be stronger and more accepting, but after 2 years it still is not working. The man I live with is so unlike the man I fell in love with.
We all feel this, we all long to escape, we all want our loved ones back as they were - oh, it is all so very, very painful because we cannot have what we want.
...and I wait for the Tesco delivery once a week, so I can talk to someone else.........
Since OH went into the care home, I spend most of my time talking to the dog!!!!
My wife can’t put together a sentence now or find the right words to try to explain what she wants. She does understand what I’m trying to explain, sometimes, but I have to repeat myself which is annoying. What I feel is extremely sad is that I can’t remember what it was like anymore to talk to her normally, to chat about stuff, to ask for her opinion, to have a conversation. I wish I could have recorded her voice, oh, I want her back with all her annoying chatter, me trying to get a word in edgewise. I use to tell her off for hogging the conversation with people. If only I’d known but we don’t, do we. What’s it going to be like in 12 months. Treasure now I suppose, with all its current faults and limitations because it’s going to get even more limited later. Memories are good but are cruel when it was better before.
I need to try and remember this when I feel myself getting annoyed at his constant questioning.
I’m talking to my cat all the time.