Well done to all wer all running a care home no holidays no set hours no camaraderie. Theres 1 staff member. the resident rarely responds gratefully & that is hard indeed even when its Dementia .I blame governments for little support now to recharge batterys to enable us to carry on .if you are fortunate to own your own home have never claimed housing benefit they then take your home away to pay for a care home where the care depends on staffing/ humanity that day every day they like us are hopefully doing thier best .No thank you isn't an option each one of us out of control of our daily lives when it happens things have to change future generations wont take it on the chin quite rightly a lot has to change
It`s the little things which bug me....
- Thread starter Anthoula
- Start date
My husband can no longer do most things - he can't speak (total aphasia) and is quite rapidly since November 2023 doubly incontinent. He can no longer go up or downstairs so is confined on one level (upstairs.)
By now it's the little things he can do that are important - like sometimes he kisses my hand, touches my face in a gentle way, strokes our dog's head....
I totally agree, I’ve said this week that it’s like living as a single person but with a toddler that is hard work most of the time. We have been together 41 years and now I have to do everything I did and everything he did. They say learning new things is good for you 🤣🤣
Well said. I like your comment about running a care home - that made me smile! Recently was trying to chase up a meeting with 1 social worker, her manager and 1 mental health nurse. They all needed to take part in Zoom. For 3 weeks either one of the other was either on leave, off sick, or on training. Meanwhile I was lucky to find time for a quick shower or out the bins out. Like you say, no control of our daily and nightly lives.
My wife and I have been together for over 60 years and she was a kind and gentle person for all that time always putting her family first and herself last. Nothing was ever too much bother for her. However dementia has changed all that and she does things now without thinking about anyone else - mainly myself.
Some months ago her personality changed to aggressive, abusive, argumentative and impossible to control particularly during sun-downing and I thought it was just another phase of the dementia. However 2 weeks ago she was diagnosed with a fairly heavy UTI which the doctor said was most likely to change her behavior and cause mood swings. She improved slightly when on antibiotics but has gone back to square one over the last weekend. So back to the doctor for more tests. I am hoping it is the UTI which is causing her behavior change. I would hate to suffer her present condition for long periods.
Some months ago her personality changed to aggressive, abusive, argumentative and impossible to control particularly during sun-downing and I thought it was just another phase of the dementia. However 2 weeks ago she was diagnosed with a fairly heavy UTI which the doctor said was most likely to change her behavior and cause mood swings. She improved slightly when on antibiotics but has gone back to square one over the last weekend. So back to the doctor for more tests. I am hoping it is the UTI which is causing her behavior change. I would hate to suffer her present condition for long periods.
Well said and well done Sue08. Sounds !like you're doing great with making the decisions.
I am trying my best to do so. Maybe 10 years ago I got anxious about driving after a scary incident on the North Circu!ar.
fast forward 3 years and I was not only doing all the driving but before that actually hid our car in a nearby street for 2 months because my husband didn't want to stop driving. The car went for an MOT and I said it was still in the garage being fixed. I would use the car for going to my (by then) part time work.
Then he forgot all about driving amongst other things and I brought the car back a d now driving on the scary bit of the North Circular around Walthamstow is the least of my problems!
I think I am still thinking of my husband as the man he was. I sometimes think I have accepted it but then realise I havent. I treat him as if he is an annoying husband. I am assuming it is something that comes with time or as they get worse - I guess I am in denial
I shouted at piglet today, ( very bad ) Last year i bought some shirts from Vinted and they were and are brill. Today she said she liked my shirt and i (like a fool) said that it was one of some I bought last year. ( which she has admired often). Then it started, you didn't tell me you had boght some shirts, you buy things and hide them hoping I won't notice, you always do that . I said, but i told you and showed you when i bought them . No you didn't you never do. Etc etc etc. which finshed up shouting. Then it turned into what is probably her Sundowning because it turned into, how could you show me, you're not here that often ( only 24/7) you go home. I of course said no I don't i'm always here. No you're not i'd notice and anyway the kids always ask where you are and when you're coming back. Which of course is a lie, as when the kids turn up i'm alway here.
Sorry rambling, not a good day, although she seems to have forgotten it now. Wish I could.
Sorry rambling, not a good day, although she seems to have forgotten it now. Wish I could.
Oh @tonebear , you've done what we all have done at some time and know we shouldn't and that's to argue back.
I've finally learnt ,well mostly, to live in his here and now.
If he says he likes my dress. I just say "thankyou." I don't say it's five years old and he says it every time I wear it.
If he asks where we are going for the sixth time in five minutes I say ,"sorry didn't I tell you we are.....
If he doesn't understand it's," sorry I'll explain that better" In fact instructions have become more commands these days . Eg coat off. Arms up. Stand etc. people who hear probably think I'm bossy or abrupt but it's what can get results.
Yes it's taking blame for something that's not my fault but it makes life easier! And does it matter. ?
It's not much conversation either but it's less trying than arguing.
He was always a friendly chatty witty man and I miss those conversations.
Yes, the little things are what can hurt. I haven't felt well the last few days, and could have done with some TLC. My husband has never been big on caring, but would have sympathised and made me a cup of tea or something. Now, he doesn't say anything when I say that I feel unwell, he just ignores it. It's hard when you are doing all the caring and there's no one to care for you, when you need it. I have struggled the last few days, and feel a bit low.
i find if you use one word then it is easier for them rather than big long explainations that they will lose the thread of. someone told me once that a person with dementia only hears the 3rd word so all the rest are wasted and can confusion. i do it so he has only to focus on that word.
@jennifer1967 when you say "they only hear the third word" do you mean that words one and two gets missed or that they only hear the first three words?
Were you told how long it can take for them to process the commands? I sometimes wonder if I don't give long enough before I repeat the command.
I try to give two words commands with hand gesture now. Either a direction point, up / down etc or I touch what I'm trying to get him to do.
It's frustrating for us both .
Were you told how long it can take for them to process the commands? I sometimes wonder if I don't give long enough before I repeat the command.
I try to give two words commands with hand gesture now. Either a direction point, up / down etc or I touch what I'm trying to get him to do.
It's frustrating for us both .
I sympathise with this. I have always suffered from headaches/migraine and usually have to go to bed to sleep them off. I can't do that now as he will come and wake me up - literally - every five minutes to ask how I am and tell me I should get up as I will feel better. He can't make tea any more so even that means I have to do it myself. I dread having to have the COVID booster (if I have to have another one) because it makes me ill for two days. I have no idea what I would do in that situation.
I believe it’s rather that it takes a couple of words before the PWD realises that they’re being spoken to, and that they need to listen to what’s being said. So the first words drift past them without registering.
So if we say “Don’t do that please” without any preamble, we risk it actually registering as “Do that please”.
i think thats what i mean. sorry been a few years but thats the basis in that what we say and what the person hears can be very different so if needing instructions, keep it simple. i always ask him to listen before i speak so he is focussed on what im saying.
at least the first 2 words get missed as they are not focussed on what you say so it takes them them time to realise you are even talking to them. i do one word instructions. i tend to get him to listen or look at me first so he is aware im talking to him.
Desperate Jane, sorry you're feeling a bit down today, It really does get to you, you feel you're not in a partnership anymore, you're the one who keeps on doing and giving, Today I had to remove the screws from our wrought iron garden gate, the top screws holding it onto the bricks had broken off and the gate was hanging by the bottom screws, oh had put a brick against it ,but it could have fallen against someone, it was so old and the screws were hard to get out, but I managed it and the gate is off now, but he never even acknowledged that I had done it ,
