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Turning me into a nasty person!

Fishgirl

Registered User
Sep 9, 2019
137
0
Hi here comes trouble... Can't wait to order the book... Port in the storm moment... Last night my OH slept from 10 in the evening... "in bed"... til 5 this morning... Hallelujah....!!!!!!
Must have been something in the air last night because my OH went to bed at 8 o’clock and for the first time in months didn’t insist on me going as well, he did shout down a couple of times, I said I’m just letting the dog out, and that was it till 11.30 (bliss) but then I got worried and went upstairs to check he was actually still breathing!:rolleyes: x
 

Linton

Registered User
Jul 27, 2019
159
0
Great Fishgirl.. If only we could bottle it... Don't thi k it will be repeated tonight.. But I live in hope.... :)
 

Fishgirl

Registered User
Sep 9, 2019
137
0
Great Fishgirl.. If only we could bottle it... Don't thi k it will be repeated tonight.. But I live in hope.... :)
Haha, if only we could! We’d be multi millionaires overnight :)
Yeah I’m hoping for a repeat tonight, bought myself a bottle of wine on the strength of it! ;)
 

Herecomestrouble

Registered User
Dec 11, 2018
34
0
It is so hard isn’t it and you describe it so well. I do sometimes gets brief glimpses of the man that my husband used to be, but they are fleeting and actually make me feel worse because it is such a painful reminder of what he was like and what I / we have lost. He is sometimes aware of how things have changed, but more on the physical front. Mentally he doesn’t seem to be aware of what has changed and will do crazy things believing them to be perfectly okay, despite the chaos that gathers around him. I can now see why care homes are such empty looking places , at least those areas that residents can access. I hate the idea that my husband might ever live in one.
Caring for anyone in this situation is hard, but when it is a long term partner, there is a different quality to the loss , and I think that the sense of separation/loss of that close bond is responsible for much of the anger that we ( I!) feel, even if it comes out at more day to day frustrations and irritations .
Warm regards,
 

Herecomestrouble

Registered User
Dec 11, 2018
34
0
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?
 

Herecomestrouble

Registered User
Dec 11, 2018
34
0
It is so hard isn’t it and you describe it so well. I do sometimes gets brief glimpses of the man that my husband used to be, but they are fleeting and actually make me feel worse because it is such a painful reminder of what he was like and what I / we have lost. He is sometimes aware of how things have changed, but more on the physical front. Mentally he doesn’t seem to be aware of what has changed and will do crazy things believing them to be perfectly okay, despite the chaos that gathers around him. I can now see why care homes are such empty looking places , at least those areas that residents can access. I hate the idea that my husband might ever live in one.
Caring for anyone in this situation is hard, but when it is a long term partner, there is a different quality to the loss , and I think that the sense of separation/loss of that close bond is responsible for much of the anger that we ( I!) feel, even if it comes out at more day to day frustrations and irritations .
Warm regards,
 

Herecomestrouble

Registered User
Dec 11, 2018
34
0
On case of any misinderstanding, I would just like to add that care homes can be wonderful places and whether or not that, they are an essential part of care provision and we might all find ourselves in the position some day of having to make that difficult decision to jave our loved one accommodated in one, and there should be no shame or guilt or sense of failure in that. We all know what a difficult decision that would be, but being realistic, it can become impossible and maybe dangerous to keep on trying to cope at home. Sometimes I think my OH could be better off in such an establishment than having to cope with my impatience and frustration and bad temper, but we’ll see
 

Fishgirl

Registered User
Sep 9, 2019
137
0
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?
Hi, ten years ago that would have sounded like the worst holiday in the world, now it sounds like Paradise, but for me it would be impossible because my OH won’t socialise at all now, and doesn’t want me to either, in fact he’d be perfectly happy if neither him nor me never left the house again. He only comes to the supermarket or walks the dog because he’s knows it’s absolutely necessary! But It’s good idea for anyone that could i do it.:) x
 

Fishgirl

Registered User
Sep 9, 2019
137
0
PS sorry feeling tearful, it’s horrible isn’t it, I had a couple of days like that this week, hope it passes soon.xx
 

jenniferjean

Registered User
Apr 2, 2016
830
0
Basingstoke, Hampshire
Must have been something in the air last night because my OH went to bed at 8 o’clock and for the first time in months didn’t insist on me going as well
I think there must be something in the air. As for two nights now my husband has taken himself to bed without waiting for me. Then this morning when I got up at six he has stayed in bed. I wonder how long this will last. I must encourage it.
 

jenniferjean

Registered User
Apr 2, 2016
830
0
Basingstoke, Hampshire
Sometimes I think my OH could be better off in such an establishment than having to cope with my impatience and frustration and bad temper, but we’ll see
I sometimes think that too. He enjoys it when someone calls and loves to chat, even though it's the same thing over and over. They never stay long, I wonder why.
But he often asks "what's happening today, anything?". I'm sure I must bore him.
 

Linton

Registered User
Jul 27, 2019
159
0
Just started reading 'The selfish pigs guide to caring'.. Hope I can find time to get through it... Never know how long I will have to myself in a day... Or even night ;)
 

White Rose

Registered User
Nov 4, 2018
679
0
There is great comfort in knowing that other people know how it is, and share the same kind of feelings, esp when those feelings make us feel so bad about ourselves.
It is SO tough this business.
The only thing I can add to what people have already said is that I have found Hugh Marriott’s book, “ The selfish pig’s guide to caring” ( you have to read it to understand why the title is perfect) to be Incredibly helpful. Partly how he describes what it is ( really ) like to be a carer, but also his gentle nudges in the direction of what to do to cope, whether practical things, or states of mind. Acknowledging how bad it is, or can be,is a first step, but moving on from that and finding ways of coping with a situation that is not going to go away soon, is quite another, and one that I continue to struggle with. Which is why his words help so much because they give me hope that there are some answers, even if not ones I particularly want to hear l It is like having a best friend on your shoulder, thinking the best of you, knowing the worst, and encouraging and supporting you all the same.
I randomly found a copy of it at my local library but have subsequently bought copies for me, friends etc.

in case you wonder how you are expected to find time to read a book, he acknowledges that right from the start ( which made me laugh and realise I was on to a good thing with the book) and suggests leaving it by the loo to dip into as and when you are there .
Warm regards to all
I dip in and out of the forums a bit randomly but glad I did today as the book sounds interesting and I'll definitely be getting hold of a copy, so thank you.
Apart from the nightmare of the whole 'caring for a partner with Alzheimer's business' what I'm having difficulty dealing with is the fact that it's only going to get worse and worse and worse and you've no idea how it's going to end or when. The cruelest of diseases.
 

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