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Discussion in 'I have a partner with dementia' started by maryjoan, Nov 21, 2018.
I have signed up for this starting February, glad I saw your post.
I found the course informative, and useful because it helped me to understand what is happening in a person with dementia and then I was able to decide to alter my reaction to things. We can't really control the dementia but we can control our reactions.
Tipping point, well I think I have just reached mine, after a terrible distressing day the worse night ever!
I am sitting here wondering is it me!! I know I should be able to cope but just feel k can’t do this nighttime any more, !!!
See what the daylight brings, like is said maybe see things in a ‘ different light’ !
It`s always worse at night @Lady M . After a full day caring you need some restful sleep more than most.
I`ve no idea what to advise other than try not to wear yourself down to carer breakdown by seeing if you can get some help, at least during the day.
It took me a long time to realise help was available if I asked for it. I`m not sure what is available now but you have nothing to lose by asking.
Hi granny g!
I know that I am better off t(an some cos OH has carers etc!
But he has been steadily losing mobilty and now really needs so much more!!!
Care plan will have to be reviewed!
Has can nearly stand( dangerous for him and others) talk of having to hoist him!!,
But night times!!! Recent falls from side of be when getting up for bathroom, promises he won’t try but still does, tonight has been the worst!
He tries so hard, but does realise he is at risk!
I am disabled so limited in what I can do to help.
Will speak to family later today’s!
Thanks for your concerns like I say perhaps will look different in the daylight and hopefully fierce some sleep!!!
Best regards x
It was the falling out of bed every night which forced me to decide on residential care @Lady M
During the day my husband was wobbly but held on to grab rails, the furniture and me and was more alert so had some idea he might fall.
During the night, half asleep, he forgot he needed help so never woke me. I was calling the paramedics out every night to help lift him back into bed because I was unable to help him. He was a dead weight and I have back problems so couldn`t risk taking his weight.
After a while, following mobility difficulties which our son witnessed, we both came to the same decision, that residential care was the only option, no matter how hard I`d tried to keep my husband at home. At the same time, our CPN decided we were both at risk and support to keep my husband at home with me would be withdrawn.
It was a bad time but turned out to be the best decision. My husband accepted residential care, the home was super and we had the best four years since Alzheimer`s was diagnosed.
There is another way of looking at this.
If things seem really bad in the night and no longer possible for you to manage - they probably are.
In the light of day, I find I can convince myself of anything, even though I really know I am only kidding myself.
If how you see things in the night, happens time and time again, it is reality setting in, and you need to try and do something to help your situation - for your own sake as well as that of your OH.
Hi. Got on the course. Hope it enlightens me more. Thanks everyone.
It doesn't teach how to be a carer. However, it explains in good detail what is happening within the person with dementia. This enables you to adjust your reactions - the only thing that is entirely within your control.
9.35 am and I have reached my tipping point already.
Carers come to change the stoma bag as my OH is unable to do himself. Lady who came yesterday did not seem to know what she was doing, kept asking questions - never met her before - usual carer off ill.
During the night OH's bag came off, with the resulting mess soaking sheets, mattress protector, mattress.
He tried to deal with it himself - difficult with dementia.
The airing cupboard is in the hallway off the lounge. This morning there was duvets covers in the sitting room, everything in the airing cupboard was all over the place. He is exhausted, I have taken him his breakfast in bed, and am now going to make a start on the laundry - sadly, we do not have a tumble drier!!
If the same lady rocks up today, I will politely ask her to leave - not her fault if she is not properly trained - but no use to us...........
Oh @maryjoan - what a start to the day. I hope you get a trained person tonight.
If they are not trained I will politely turn them away...
So, the day has gone by. I stupidly told off the carer that came today, thinking she was the one that let us down yesterday - same sort of look, long greying hair, glasses, similar sort of age - how embarrassing to tell off the wrong person - just shows how tired I am......
and that has been the only person I have spoken to all day. No buses on a Sunday, so cannot go anywhere.
OH dozing and not speaking much - sort of watching same TV he has already watched at least once.
BUT Sunday is always the worse day - tomorrow I will catch the bus and meet my daughter and we will have a mooch around and some lunch with little Jack, before coming home. Only leaving himself for a couple of hours so should be OK. I asked little Jack how old he was going to be, last time I saw him - he has a birthday in a couple of weeks - he made me laugh when he said "3 O'Clock" - of course, he means 3.
Believe me, we're none of us patient and understanding all the time. My patience wears very thin, very quickly and I'm often ashamed of the things I say in the heat of the moment. The only good thing is that hubby doesn't remember what's been said and I can make up for it
When you mention abuse, I hope you don't mean physical abuse because really, that is a step too far and you need to remove yourself from any sort of dangerous situation (the police are very good at times like this).
Keep posting on TP and you will find lots of support for the journey you and your PWD are on.
Our 'pantomime' as you call it, is in the afternoon when my husband gets bored. He cannot concentrate on TV or a book/paper/magazine and when he's bored he gets bad tempered. It's often a nightmare but I tell myself "this too shall pass"......it helps me move on.
I say hurtful things a lot and I believe I’m getting a bit of a bully. Then I feel wretched and then I’m nice to OH. She’s getting very fussy over her food, pokes it around and leaves it and I get irritated and chuck it in the bin. What a waste ! The good news on the horizon is that she’s agreed to the dentist at the end of the month. She’s neglected her teeth so heaven knows what he’ll find . I said to the receptionist that she’s kind to find a early appointment and she said that’s what we’re here for. My heart softened. The dark nights create anxiety and OH goes to bed about 18.00. I think you all out there are brilliant but like me we don’t have a choice and get on with it. I used to get shouted at, hit a couple of times, but now nothing so I hope it doesn’t come back.
I am with you on this because I am the one who gets angry with the stupidity of it all, feel remorse and then repeat. My daughter came over today and what a relief to have someone else to interact with him. Just listening to the news and a bit depressed because in the piece on NHS funding, no mention of the rise of the incidence of dementia, and social care policy is in shreds. In the meantime we all suffer and battle on. Ditto going to bed early and in my case up and down about 5 times saying goodnight.
Hello @Dutchman, the food thing could be a loss of the sense of taste, which is common as dementia progresses. The last tastes to go are sweet and sour which is why people with dementia are famous for having a sweet tooth. This will even apply to what were favourite foods in the past. It may be worth experimenting and not expecting the person to eat the same thing as you.
The other possibility might be a difficulty with swallowing developing so it’s worth keeping an eye on that.
I hope you find a solution as that will help both of you.
That could be anxiety. My wife is like that and it can take repeated reassurance before she will leave me alone.
I do wish sometimes that my husband would go to bed a bit earlier. He insists on waiting until I go. And when I can't sleep, which is often, I'd love to get up and just make myself a cup of tea. But he is a very light sleeper and if I got up during the night, he'd wake and insist on coming down with me.
I really feel for you over this and I don’t know how you cope with the poor sleep situation and that must make life even more difficult. My husband goes to bed about five times over the course of the evening, eventually going up when I am ready but we do sleep separately. @karaokePete is right about this being something to reassure him about rather than trying to stop it. So tonight I have tried to be a bit less stressed about this up and down disturbance and I largely ignore him as he witters away about this and that while I am watching a programme. The other trick I have tried is to get him to check the door once and then put a chair in front of it which means he can’t get to it and reminds him that he has already checked it.