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Staying home

Izzy

Volunteer Moderator
Aug 31, 2003
63,042
69
Dundee
Welcome from me too @RQuino.

I'm very glad you have found the forum. I know you will get lots of help and support here. There's always someone around to listen.
 

Tezza1

New member
Feb 5, 2020
7
Well I love all those inspirational messages about what to do when you're stuck at home - how I would love to be able to sort the garage, sort the cupboards and drawers. Unfortunately I have another person at home with me who demands attention all the time and will not allow any kind of sorting as what I take out would be put back in and he'll get bored and be off getting into mischief or muttering, complaining and swearing because I'm not giving him attention. Have to go now because he hates it when I'm on the laptop and is wandering around muttering and swearing, better get him a coffee, that will keep him quiet for 5 mins!!
Well I love all those inspirational messages about what to do when you're stuck at home - how I would love to be able to sort the garage, sort the cupboards and drawers. Unfortunately I have another person at home with me who demands attention all the time and will not allow any kind of sorting as what I take out would be put back in and he'll get bored and be off getting into mischief or muttering, complaining and swearing because I'm not giving him attention. Have to go now because he hates it when I'm on the laptop and is wandering around muttering and swearing, better get him a coffee, that will keep him quiet for 5 mins!!
Mischief is an under statement I have nicknamed my wife houdini as she can make things vanish at the drop of a hat,
Today our king size box of corn flakes, the plug from the bathroom sink and one of our telephones have gone somewhere. In recent weeks she has managed to remove a king size duvet cover and after I sweated cobblers replacing it did it again. I have had cans of coke in the oven, ready made meals removed fom the freezer, and there is never a towel or toilet roll in the bathroom. Months ago I started moving anything of importance to high levels, on top of wardrobes, fridge freezer, cupboards, I live in a minimalist evvironment because ornaments are magnets for her.
I am a sole carer of five years trying to remain sane and retain a sense of humour and not let it get me down but there are days!!!. As for self isolation, it's nothing new to me I've been isolated for years, keep your chin up and all the best
Tezza xxx
 

Twopoodles

Registered User
Dec 23, 2019
35
Mischief is an under statement I have nicknamed my wife houdini as she can make things vanish at the drop of a hat,
Today our king size box of corn flakes, the plug from the bathroom sink and one of our telephones have gone somewhere. In recent weeks she has managed to remove a king size duvet cover and after I sweated cobblers replacing it did it again. I have had cans of coke in the oven, ready made meals removed fom the freezer, and there is never a towel or toilet roll in the bathroom. Months ago I started moving anything of importance to high levels, on top of wardrobes, fridge freezer, cupboards, I live in a minimalist evvironment because ornaments are magnets for her.
I am a sole carer of five years trying to remain sane and retain a sense of humour and not let it get me down but there are days!!!. As for self isolation, it's nothing new to me I've been isolated for years, keep your chin up and all the best
Tezza xxx
I have just spent 10 minutes ransacking the drawers looking for mums pink pyjama top. Couldn’t find it so gave her different one and went off to the bathroom. On coming back to check she had her pjs on she had the pink pyjama top on. Obviously she doesn’t know where it was and then proceeds to put the blue one on over the top! And as I write this I realise she must have had the pink one on all day. Damn it caught out again 🤷‍♀️
 

Twopoodles

Registered User
Dec 23, 2019
35
Well I love all those inspirational messages about what to do when you're stuck at home - how I would love to be able to sort the garage, sort the cupboards and drawers. Unfortunately I have another person at home with me who demands attention all the time and will not allow any kind of sorting as what I take out would be put back in and he'll get bored and be off getting into mischief or muttering, complaining and swearing because I'm not giving him attention. Have to go now because he hates it when I'm on the laptop and is wandering around muttering and swearing, better get him a coffee, that will keep him quiet for 5 mins!!
How I loved reading your post because that is my life. I long to just read a book never mind cleaning out cupboards. So many questions I can’t even go to the loo in peace, luckily there’s a lock no such luck in the bedroom. It’s incessant and no sneaking off for an hour anymore to a cafe just for some peace in my head. i get to pick up my iPad when I see her nodding off on the sofa and then she’s awake again. I dream of self isolation even if just for a day
 

Herecomestrouble

Registered User
Dec 11, 2018
31
It is hugely reassuring to know that other people share the same challenges and know what it is like living and caring full time for someone with dementia. Right now I am finding it very tough, which has little to do with the virus because as so many people point out, self isolation is hardly a new thing, but I feel increasingly worn down by the situation, increasingly frustrated with what my OH does, ( and insists on doing, regardless of the outcome) . He has moments of relative clarity, but increasingly uses those to have a go at me for interfering and trying to control him . We both end up angry which is no good for either of us and I know he has a point....I should be more patient and kind. The times when he seems most himself are at the end of the evening, when he is in bed and I am knackered and just want to get to bed myself, not have a conversation ( though sometimes I try even though it feels like being a contortionist, wrenching my mind and heart away from all the frustration and upset I feel and into a place where I can be available and responsive)
The injustice of it is hard to take when I wait on him hand and foot and he expects that and very rarely seems to appreciate what I do and all that I have given up to look after him .Perhaps the thing that I find hardest to take is the change in him...if he had always been a selfish sort of character I would only have myself to blame for putting up with that for so long, but of course he wasn’t...he was a very thoughtful, kind and caring man, my best friend and true soul mate. I know it is the disease that is the culprit, but it is wreaking havoc on us both and I would really appreciate some advice as to how I could better manage how I feel and how this is affecting me, ( and so us) esp now when outside help, in the form of friends or some kind of respite is not available .
 

jenniferjean

Registered User
Apr 2, 2016
767
Basingstoke, Hampshire
Oh how these shares lift me .. So comforting to hear that others feel exhausted too. Its the first time I have been on here and you have all made me smile. :D

After being very seriously ill 8 weeks ago with pneumonia in intensive care, I find myself looking after my hubby who has quite severe dementia with increasing mobilty issues alone ... now all help and support has stopped, It feels truly awful. I have tried to engage him in doing things but he always drifts back to sitting in front of the TV watching the CV stream.

I myself have been on strict isolation now for three weeks which means he is too. I cannot get shopping easily and he eats so much as he has no natural appetite suppressant. When he falls asleep I feel I should pounce on the ironing or 1001 other jobs ... but I too fall asleep from exhaustion ..... and oh he won't wash his hands ....

And we have another 12 weeks .. possibly longer of this ... ??
I do feel for you. Obviously with your health you do need to be on strict isolation. Apart from being diabetic I don't have any health problems but I can't leave my husband alone and his walking is really bad. So isolation it is and I am missing my 3 hours a week I had when a carer used to sit with my husband. Don't worry about the 1001 jobs you need to 'pounce on'. Just do a bit here and there when you feel like doing it. That's what I'm doing, and then give myself a pat on the back when I've done it.......and my husband won't wash his hands either. He touches the tap without actually turning it on and then spends a good five minutes drying them on a towel.
Keep your chin up!
 

bahnjoe

New member
Aug 28, 2019
4
Oh how these shares lift me .. So comforting to hear that others feel exhausted too. Its the first time I have been on here and you have all made me smile. :D

After being very seriously ill 8 weeks ago with pneumonia in intensive care, I find myself looking after my hubby who has quite severe dementia with increasing mobilty issues alone ... now all help and support has stopped, It feels truly awful. I have tried to engage him in doing things but he always drifts back to sitting in front of the TV watching the CV stream.

I myself have been on strict isolation now for three weeks which means he is too. I cannot get shopping easily and he eats so much as he has no natural appetite suppressant. When he falls asleep I feel I should pounce on the ironing or 1001 other jobs ... but I too fall asleep from exhaustion ..... and oh he won't wash his hands ....

And we have another 12 weeks .. possibly longer of this ... ??
I've already had 6 weeks through illness and now have another 13 weeks.i agree re housework etc,it's got to the stage I've given up.my wife uses floor as a bucket etc.the more I pick up the more she drops.im so tired I'm sleeping by 8pm and just don't seem to be able to pick myself up.i was just getting to be considered for respite after 15 years when covid struck,now 13 weeks seems like a life sentence.anyway keep safe all.
 

Niggy

New member
Oct 17, 2017
6
What a relief to know that there are so many others who are going through the same days that I am having. It is soooo lonely which sounds ridiculous when you live with others.
My mum’s dementia has become so full on over the last year I feel so lost most days. So many requests to ‘help’ and a constant need to be near me is...
I’m a teacher - part time now- so now being home all the time is even more confusing for mum. She’s convinced I’m packing up and leaving her...It’s so exhausting
Not much sleep either that’s the latest, up at 2.3,4 and then finally at 5......I give up
Everyday is so unpredictable and no one seems to get it
Thank goodness for you guys and the comfort of your words
Don't give up... we shall win in the end. My husband used to be up several times in the night last winter, and I was turning into a bad-tempered zombie. My Doctor prescribed Melatonin, which is safe and non-addictive. It apparently replaces the effect of sunlight. It worked well to get him back into a normal sleeping pattern, and now he usually sleeps through the night without any tablets. I also used a lumi-light during the dark days of winter, which helped a bit
 

White Rose

Registered User
Nov 4, 2018
679
We had my daughter staying with us for a week which has been really lovely but my partner has been so horrible to her, swearing at her, telling her to get out, etc. When she left to go back to London (which of course is a big worry to me) his last words to her were 'xxxx off'. She's always been really nice to him, she has even saved his life on a couple of occasions by calling the ambulance when he had a stroke and seizure. He of course has no idea that he even does it, he's forgotten she was even here and thankfully she understands. He's the same now with the carers, so incredibly rude, but sometimes he can switch and be really nice and sweet and say he's sorry! He was never like this pre-dementia, I never even heard him swear, he never had mood swings, was never argumentative. In fact it's probably only in the last few months that he's become really bad tempered and angry and seems to be getting worse. Life is all about him, now he's standing around muttering 'I'll die' because I'm not paying him any attention!!
 

White Rose

Registered User
Nov 4, 2018
679
Perhaps the thing that I find hardest to take is the change in him...if he had always been a selfish sort of character I would only have myself to blame for putting up with that for so long, but of course he wasn’t...he was a very thoughtful, kind and caring man, my best friend and true soul mate. I know it is the disease that is the culprit, but it is wreaking havoc on us both and I would really appreciate some advice as to how I could better manage how I feel and how this is affecting me, ( and so us) esp now when outside help, in the form of friends or some kind of respite is not available .
I've just posted more or less the same as you. The change in their character is very hard to bear, after just over 4 years I can barely remember the person my OH was. Only thing I've learnt is that it's pointless getting angry, it achieves nothing except winding them up, you just have to remain calm through all the ranting. Wish we knew if it was just a phase of dementia and will pass or if it will keep getting worse. You might find that the paid professional care workers are still working. I still have a couple of mornings and an afternoon off with care from a private care company and a self employed carer, they are incredibly careful with hygiene.
 

White Rose

Registered User
Nov 4, 2018
679
I've already had 6 weeks through illness and now have another 13 weeks.i agree re housework etc,it's got to the stage I've given up.my wife uses floor as a bucket etc.the more I pick up the more she drops.im so tired I'm sleeping by 8pm and just don't seem to be able to pick myself up.i was just getting to be considered for respite after 15 years when covid struck,now 13 weeks seems like a life sentence.anyway keep safe all.
Oh @bahnjoe I do feel for you. I know that so many people are in a much worse situation than myself, I am still relatively young and healthy so can deal with the physical demands of this job of carer. How did you manage 15 years of this, you deserve a gold medal. Wish I could offer some advice, I can see why 13 weeks would seem like a life sentence (sometimes I think we'd be better off in prison!) but just hope you can get fresh air, out in the sunshine for a while and a good nights sleep.
 

Nurse Snafu

New member
Dec 27, 2017
3
South East
Have to say am inspired by the courage and determination of all of you caring for a PWD. My Mum is looking after Dad and when I last saw them on 14th March she looked totally lost at the thought of self-isolation/lockdown. We have made the decision to keep the (very sensible) "cleaner/carer" coming in each week as a sanity saver for both of them. Dad of course doesn't understand why they are under "house arrest". Think sometimes it is about balancing the quality of life against the quantity, and this will of course be different for each individual. Mum has really stepped up to the mark and is back to being the strong lady I remember growing up. She is getting amazing support from friends and neighbours for which I am eternally grateful. I am 2+ hours away and unable to visit as working on the frontline (vaccine development). Gets pretty lonely but know that, as with all things, this will pass. Best wishes to all.
 

Jennybelly

New member
Aug 15, 2019
4
57
Stockton on Tees
Well I love all those inspirational messages about what to do when you're stuck at home - how I would love to be able to sort the garage, sort the cupboards and drawers. Unfortunately I have another person at home with me who demands attention all the time and will not allow any kind of sorting as what I take out would be put back in and he'll get bored and be off getting into mischief or muttering, complaining and swearing because I'm not giving him attention. Have to go now because he hates it when I'm on the laptop and is wandering around muttering and swearing, better get him a coffee, that will keep him quiet for 5 mins!!
Hi.
I understand fully. My mum was diagnosed with mixed Dementia in January.
I've hardly got my head around it yet and this happens. These last 3 months have felt torturous. I love my mum to pieces. She is my life. My father died in an accident when I was one year old. Mum never remarried. I've lived with mum for most of my life. They started her on Aricept but she became extremely confused with it and very angry. She's on patches now and touch wood they seem to have helped her mood and she is tolerating them. My mum lives for her days out. We usually get the bus all over the place. It's taken all this time to make her understand what's going on a bit. Stopping in for just these last 2 weeks is having a detrimental affect on us both. I'm trying to keep her busy but she is falling asleep in her chair which she has never done. I took her for a walk and she was exhausted after 5 minutes. I'm so scared that this is going to speed up her deterioration. I don't have any other family for support. Friends are very kind but in the end you are on your own. I'm feeling that even more now. I get so lonely because my mam isn't the person she was. I feel like Ive already lost her. She is also demanding. If I go in my bedroom for 10 minutes she's calling me and asking if Im alright constantly. We are into our 5th jigsaw. I got her in the garden last week planting bulbs but now the weather has changed. I know we have to do this and their safety is the main priority but its very very hsrd. My heart goes out to all carers at the minute. God bless.
 

White Rose

Registered User
Nov 4, 2018
679
Hi.
I understand fully. My mum was diagnosed with mixed Dementia in January.
I've hardly got my head around it yet and this happens. These last 3 months have felt torturous. I love my mum to pieces. She is my life. My father died in an accident when I was one year old. Mum never remarried. I've lived with mum for most of my life. They started her on Aricept but she became extremely confused with it and very angry. She's on patches now and touch wood they seem to have helped her mood and she is tolerating them. My mum lives for her days out. We usually get the bus all over the place. It's taken all this time to make her understand what's going on a bit. Stopping in for just these last 2 weeks is having a detrimental affect on us both. I'm trying to keep her busy but she is falling asleep in her chair which she has never done. I took her for a walk and she was exhausted after 5 minutes. I'm so scared that this is going to speed up her deterioration. I don't have any other family for support. Friends are very kind but in the end you are on your own. I'm feeling that even more now. I get so lonely because my mam isn't the person she was. I feel like Ive already lost her. She is also demanding. If I go in my bedroom for 10 minutes she's calling me and asking if Im alright constantly. We are into our 5th jigsaw. I got her in the garden last week planting bulbs but now the weather has changed. I know we have to do this and their safety is the main priority but its very very hsrd. My heart goes out to all carers at the minute. God bless.
This is really tough for you when you have no other family to turn to, it's mentally, physically and emotionally exhausting. Try to keep in touch with your friends as you'll really need them, even just to talk about something else! My partner doesn't understand about the Virus at all. Try some exercises at home as well as going out for walks every day - I'm like you, worry about my partner deteriorating if I can't get him out walking - we can go for walks, just need to keep our PWDs away from other people. The decline is inevitable of course so you'll need to prepare yourself, it can only get worse. Once the Virus is over try to get a regular carer in to give yourself a break. Make sure you get a power of attorney sorted and see if you can get attendance allowance. Take care.
 

CatAM

New member
Oct 2, 2018
6
Fife
You don't realise how often programmes are repeated till you find husband watching same episode of Father Brown for the third time in a week .... and of course he's never seen it. Can so identify with eveything that's being said. So out of routine is the big problem!
 

Thethirdmrsc

Registered User
Apr 4, 2018
221
My daily life has not really changed at all. We get out for a walk, which would take me half an hour, but takes us over an hour, then we sit at home. I occasionally give him jobs to do. I don’t know why cause it frustrates the both of us! Can’t let him walk to the local shop on his own as he wouldn’t know to clean his hands and keep his distance, so for an hour or so I have to “clean upstairs” to get away.