• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Turning me into a nasty person!

Roseleigh

Registered User
Dec 26, 2016
297
Well I've had a weeks 'respite' :)first time ever, picking him up tomorrow. Son told me I should have opted for two weeks, but although I do feel its gone too quickly, I'd rather do one week again in the not too distant future.
 

Linton

Registered User
Jul 27, 2019
142
Just reading 'the selfish pigs guide to caring' it's a must for all carers.. So much confermation of everything we go through.. and ways to cope without beeting ourselves up... (wish my OH could read and understand it) it sure has made me feel more positive about the situation I'm in.. even on bad days without the guilt.. :):)
 

007 I wish

New member
Aug 4, 2019
2
Hello to everyone.
I care for my wife who was 57 when we were told she had alzheimers, that was five years ago now.
I would like to here from any one young like her, I wish I could meet other couples to share what we are going through, it drive me round the bend and her going to these dementia cafes where most people are a lot older, I must say that as a full time carer for her I don't get much time to sit in front on my laptop.
That's all for now.
007 I wish
 

Roseleigh

Registered User
Dec 26, 2016
297
There are quite a few of us in our 60s with husbands who are older. I feel robbed rather of what should be the good years of retirement, but hey at least we're not dead!;)

I too don't fancy dementia cafes - one person with dementia is enough! LOL
 

canary

Registered User
Feb 25, 2014
11,375
South coast
Hello @007 I wish and welcome to DTP
I am 62 and care for my OH who is 63. We should both be working, enjoying the grandkids and planning our retirement, but instead OH does nothing and Im stuck indoors with him.
 

lovey11

Registered User
Apr 30, 2017
13
OMG how can a new pair of pyjamas be so stressful!! Put new pj's on the OH tonight and he's taken them off 3 times now. Came downstairs in total confusion because there is a 'pee hole' with a button on the fly. His other pj's don't have fly and he can't understand he can just pull them up and down like his old pj's!! He's back again with pair of underpants on top now!!
 

lovey11

Registered User
Apr 30, 2017
13
It's reassuring to read all these posts and see that we're all in similar situations - the really sad thing is that our beautiful relationships with our loved ones have to have this horrible end where we are bad tempered, frustrated, resentful, etc. And the personality of our loved one changes to that of a person we barely recognise. As someone said in one of the posts you could never have imagined that this was how your life was going to be. I try to remember the person he was, it gets more hazy, I would give anything just to have a couple of hours with the man that he used to be, to have the conversations that we used to have with the intelligent, caring person that he was. Now it's like looking after a self centred child who can't do anything for themselves and who thinks the world resolves around them and their needs!! When he's in chatty mood I have to listen to all the rambling nonsense, I simply can't understand what he's trying to say. He doesn't understand anything I'm trying to tell him - so I've stop telling him things because what's the point.
Can you sew the fly up - obviously not whilst he is wearing them.
Finally gave in and put him back in old pair. He has dementia but it's me that's being driven mad!!! Good idea will sew them up as bought 2 pair.
 

Latitude

Registered User
Jul 12, 2019
36
I've just bought some new PJs for my Dad and gone for shorts and Tshirts which he really likes. No more buttons or struggling to get his leg in without ripping the hem.
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
OMG how can a new pair of pyjamas be so stressful!! Put new pj's on the OH tonight and he's taken them off 3 times now.
I try to find clothes that are more in keeping with my husband's condition but he also goes back to wearing what he's used to. It's hard work and you're only trying to do what is best for them. At the moment I'm taking a break from trying to find his electric razor which has suddenly disappeared.
 

big l

Registered User
Aug 15, 2015
34
Feeling tearful ...you all know the score so I won’t bore you with details, and will get straight to a different point...
Have been wondering re the feasibility of renting a whole youth hostel, or some such, for a group of us people living with and caring for someone with dementia., together with our loved ones. The idea being
We would get to stay in a nice place
We wouldn’t have to worry re what other guests might think ( there wouldn’t be any)
We could cook according to any and every need
We would have each other’s company and support
Some of the carers could go out for a walk or whatever whilst the rest stayed with the PWD, doing whatever is possible at base, then swop over another day
Etc
A kind of very short term community living scheme,

Am aware that some PWD might find the whole thing too disorientating and confusing, esp if their carer was not immediately available...

What does anyone think?
I'm there!!! bottle washing and general duties? BRING IT ON!!!
 

Linton

Registered User
Jul 27, 2019
142
:(It takes me nearly an hour to get my OH dressed in a morning.. (4.am)..including all his incontinence stuff.. by then I usually grab anything for me to wear... as he's wandering off and ready for a cup of tea... Only later in the day when someone calls with shopping or something do I notice what I look like... Someone who has been rough sleeping.. Including hair which I ptobably haven't brushed.. Make up a thing of the past...:(
 

Fishgirl

Registered User
Sep 9, 2019
134
:(It takes me nearly an hour to get my OH dressed in a morning.. (4.am)..including all his incontinence stuff.. by then I usually grab anything for me to wear... as he's wandering off and ready for a cup of tea... Only later in the day when someone calls with shopping or something do I notice what I look like... Someone who has been rough sleeping.. Including hair which I ptobably haven't brushed.. Make up a thing of the past...:(
I know what you mean Linton, I used to love buying new makeup & clothes, I’ve just lost the inclination nowadays and it’s a case of doing the bare minimum so as not to frighten children if we have to go out! :eek: and your hubby is further down the line than mine, so god knows what I’ll look like by then.xx
 

Linton

Registered User
Jul 27, 2019
142
Think I frightened myself getting a glimpse of an unfamiliar woman In the mirror.. Years older than me.. Good job going out is a fare treat.. My OH though always looks neat and tidy....!!!!! :cool:
 

Fishgirl

Registered User
Sep 9, 2019
134
Think I frightened myself getting a glimpse of an unfamiliar woman In the mirror.. Years older than me.. Good job going out is a fare treat.. My OH though always looks neat and tidy....!!!!! :cool:
Hmmm strange isn’t it how they look so much better than we do o_O
My OH still manages a shave (no wash though) trouble is he keeps leaving the bathroom mirror on the magnifying side, frighten myself to death, until I realise!:eek: xx
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
My OH still manages a shave (no wash though) trouble is he keeps leaving the bathroom mirror on the magnifying side, frighten myself to death, until I realise!:eek: xx
My husband can still use his electric razor but I wouldn't go so far as to call it having a shave, just shows the razor to his face. That's when we can find his razor. It took me half an hour this morning to find where he'd left it.
 

Roseleigh

Registered User
Dec 26, 2016
297
:(It takes me nearly an hour to get my OH dressed in a morning.. (4.am)..including all his incontinence stuff.. by then I usually grab anything for me to wear... as he's wandering off and ready for a cup of tea... Only later in the day when someone calls with shopping or something do I notice what I look like... Someone who has been rough sleeping.. Including hair which I ptobably haven't brushed.. Make up a thing of the past...:(
Oh Linton, dont you think maybe time for a care home? I am seriously thinking its not far off for my OH. I also get terrible broken nights, but I can at least leave him to go out for a few hours, and he isn't incontinent yet. I know it costs a small fortune but this needs weighing against the toll on our health of sleep deprivation and stress.
 

Linton

Registered User
Jul 27, 2019
142
Hi Roseleigh.. Thanks for the reply.. I know I have to think about it in the future.. Can't bear it though... Last nigh every hour my OH asked me the time... Then at four wants to get up.. I gently explained how tired I was and that my days were full of 'heavy' work with all the help he needs... He was so sweet.. Saying tonight would be different now he knows.. I had put the guilt on him... So now I feel dreadful... Really nasty person cause I know he can't help it...!!!!!