Husband in care home, I’m lost

Baggybreeks

Registered User
Mar 22, 2017
80
0
Scotland
My husband was sectioned 1 and a half years ago, and has been in a care home for a year. He has mixed dementia, started 5 years ago, now severe.
I’m still trying to adjust to being alone, after 50 years together, working together in our own business too. I feel as if I have had my right arm chopped off. I’m trying to distract myself , but I know that there is no hope for him, and he has deteriorated so quickly .
I normally go to be with him for 2-4 hours every afternoon although he cannot speak and needs everything done for him, unable to stand or feed himself.
He’s had a couple of infections requiring antibiotics and a recent visit to hospital for a day. We have a DNR in place so it’s all pretty depressing, watching him disappear. I get overwhelmed at times and can’t sleep,worrying about him.
I’ve tried group meetings dealing with grief, coping and loss but it doesn’t help as he has the most severe condition. I’m exhausted .
 

Kevinl

Registered User
Aug 24, 2013
6,059
0
Salford
It's an awful situation to be in, my wife was sectioned in January 2016, six moths in an assessment unit and moved to a nursing home 2 years ago next month so nearly 2.5 years in total. Other than visiting her everyday and drinking too much I can't really tell you too much that happened in that time other than keeping a 3 bed semi that I rattle around in clean and maintained, cutting the grass, cleaning the windows and all the rest I've really done very little.
I still work part time from home but even that's started to dry up these days.
People will tell you to join a club, volunteer in a charity shop or find a hobby but that's a bit like telling someone with depression to pull themselves together or a drug addict to just stop taking drugs, alcoholic, stop drinking, simples!
The advice may be well meaning but it doesn't really work that way, my wife was my world we did everything together. If she'd died then maybe by now I might go on Plenty More Fish or something because at 62 I hope I've still got some life left in me, but everyday as I see her get a little worst some part of me is slowly dying too, AZ is slowly but surely killing us both.
K
 

Baggybreeks

Registered User
Mar 22, 2017
80
0
Scotland
It's an awful situation to be in, my wife was sectioned in January 2016, six moths in an assessment unit and moved to a nursing home 2 years ago next month so nearly 2.5 years in total. Other than visiting her everyday and drinking too much I can't really tell you too much that happened in that time other than keeping a 3 bed semi that I rattle around in clean and maintained, cutting the grass, cleaning the windows and all the rest I've really done very little.
I still work part time from home but even that's started to dry up these days.
People will tell you to join a club, volunteer in a charity shop or find a hobby but that's a bit like telling someone with depression to pull themselves together or a drug addict to just stop taking drugs, alcoholic, stop drinking, simples!
The advice may be well meaning but it doesn't really work that way, my wife was my world we did everything together. If she'd died then maybe by now I might go on Plenty More Fish or something because at 62 I hope I've still got some life left in me, but everyday as I see her get a little worst some part of me is slowly dying too, AZ is slowly but surely killing us both.
K
It's an awful situation to be in, my wife was sectioned in January 2016, six moths in an assessment unit and moved to a nursing home 2 years ago next month so nearly 2.5 years in total. Other than visiting her everyday and drinking too much I can't really tell you too much that happened in that time other than keeping a 3 bed semi that I rattle around in clean and maintained, cutting the grass, cleaning the windows and all the rest I've really done very little.
I still work part time from home but even that's started to dry up these days.
People will tell you to join a club, volunteer in a charity shop or find a hobby but that's a bit like telling someone with depression to pull themselves together or a drug addict to just stop taking drugs, alcoholic, stop drinking, simples!
The advice may be well meaning but it doesn't really work that way, my wife was my world we did everything together. If she'd died then maybe by now I might go on Plenty More Fish or something because at 62 I hope I've still got some life left in me, but everyday as I see her get a little worst some part of me is slowly dying too, AZ is slowly but surely killing us both.
K
 

Baggybreeks

Registered User
Mar 22, 2017
80
0
Scotland
Thanks K. It feels like limbo. And yet we are still having to do the usual stuff and unless you have been through this, Friends are well meaning, but don’t really know the hurting we are experiencing. Hope that there will still be another life afterwards. It’s such a sad process watching the one you love disappear. I hope you can sleep alright. Being alone in the night is so hard.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
@Baggybreeks ...have you considered counselling? I’m only suggesting it as I have found it so helpful. My husband moved into a care home in February. Ours is not a first marriage, we were both widowed in 2008 and I have found dementia harder to cope with, than I did cancer ...and this is like being widowed again...but it is lasting longer. At least with cancer, the person is still there, you can still communicate.
I didn’t think counselling would make a difference...but I guess I have been lucky with my counsellor. I really respect her and she has given me practical tasks to complete that are starting to make a difference in my life.
 

Baggybreeks

Registered User
Mar 22, 2017
80
0
Scotland
@Baggybreeks ...have you considered counselling? I’m only suggesting it as I have found it so helpful. My husband moved into a care home in February. Ours is not a first marriage, we were both widowed in 2008 and I have found dementia harder to cope with, than I did cancer ...and this is like being widowed again...but it is lasting longer. At least with cancer, the person is still there, you can still communicate.
I didn’t think counselling would make a difference...but I guess I have been lucky with my counsellor. I really respect her and she has given me practical tasks to complete that are starting to make a difference in my life.
 

Baggybreeks

Registered User
Mar 22, 2017
80
0
Scotland
Thanks Amethyst. Yes I had a counsellor before my husband went into care. She was a good listener and I could open up to her with my problems. Which helped at that point.
As circumstances as changed in the last year and a half, loneliness being a major factor now, I have asked the voluntary organisation for further counselling, which I am now waiting for.
Hopefully I’ll get a good counsellor who can give me something to aim for. I just feel so empty, dealing with OH dementia at home took over.
It’s worse as you say than cancer, no cure and no hope.
Thank you for your reply . In the middle of a night..
I
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
Hello @Baggybreeks

The only suggestion I can make is to try to accept your feelings are natural and go with them.

There is no time scale for having to get used to a situation which is out of our control and the last thing we want. The grief and loneliness cannot be `magicked` away. I found they can be lived with and endured. It`s not pleasant but who could expect it to be.

I don`t think anyone can appreciate this state unless they have lived with it . Our other half is no longer there in the way they have been for a lifetime. It takes a lot of getting used to.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Ooh, I like that philosophy, @Grannie G ...the feelings can be lived with. I have often thought that about physical pain. It is, literally, in the mind. I have found (ok, sounds silly) that I can say to myself...ok. Good brain, you gave me the message. Now I will deal with it.
It has let me down once or twice...I discovered the hard way you cannot think yourself out of severe allergic reaction!! But acceptance...that’s a good one to learn. We waste a lot of emotional energy fighting against what cannot be changed.
 

Rosie4u

Registered User
Jun 22, 2017
219
0
South Manchester
Yes I agree - and a few days ago I when being woken up at 5.15 as its now light !!! I had to work SO hard to put my Happy Head on. It works better for both of us if I have a Happy Head.
:D:D:D:eek:
 

Hazara8

Registered User
Apr 6, 2015
697
0
There is a great truth in respect of 'expectation ' and the manner in which it presupposes a situation, i.e. you are going once again to the Home or hospital, knowing that your loved one is unwell, or will be worse or will be in pain or ... whatever? You DO know that things will not improve, let us say in respect of Alzheimer's (my own direct experience) and so, if you can, you go once again to the Home, WITHOUT expectation, either positive or negative. Therefore, you go there without that mental precondition, that 'image' taken from the last time you made the visit. You go there afresh. Then, once there, meet it as it is, in the moment (a rather abused phrase I am afraid to say). Simply owing to the fact that you cannot change a thing, you neither accept nor deny it - both are mistakes. This does not imply that there is a sudden release of all the emotional angst and pain - as stated by others, you can only understand any of this if you have lived it out and felt the complete onslaught of despair which ca be thrown at you - but perhaps you can then address the 'here and now' in a different light. People mean very well when they speak of counselling or 'taking a break' and so on. The problem remains, however, when what is taking place inside YOU, belongs to you and you alone. Communicate with the real YOU and something extraordinary takes place. A choiceless awareness of the situation negates a tremendous burden. Thank you.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Ooh, I’m not quite there with you @Hazara8 ...counselling can help one to find strategies to recognise and deal with what is ‘taking place inside YOU’...
 

kindred

Registered User
Apr 8, 2018
2,937
0
My husband was sectioned 1 and a half years ago, and has been in a care home for a year. He has mixed dementia, started 5 years ago, now severe.
I’m still trying to adjust to being alone, after 50 years together, working together in our own business too. I feel as if I have had my right arm chopped off. I’m trying to distract myself , but I know that there is no hope for him, and he has deteriorated so quickly .
I normally go to be with him for 2-4 hours every afternoon although he cannot speak and needs everything done for him, unable to stand or feed himself.
He’s had a couple of infections requiring antibiotics and a recent visit to hospital for a day. We have a DNR in place so it’s all pretty depressing, watching him disappear. I get overwhelmed at times and can’t sleep,worrying about him.
I’ve tried group meetings dealing with grief, coping and loss but it doesn’t help as he has the most severe condition. I’m exhausted .
Mydear, thank you for posting. I am in a very similar situation with my OH. I tell myself grief is normal, intense sadness and loneliness is normal. It is so good to hear from you. I go to be with OH for several hours each day, too. Dementia will take us over, and take our minds over. Just little things apart from dementia to aim at help me, coffee with friends, ten minutes weeding tiny garden, anything really to keep our minds away from dementia. I know it all feels pointless, feel that when I tend my garden as Oh will never see it again, but birds see it, butterflies see it ... well you know what I mean. Thank you so much for posting.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Mydear, thank you for posting. I am in a very similar situation with my OH. I tell myself grief is normal, intense sadness and loneliness is normal. It is so good to hear from you. I go to be with OH for several hours each day, too. Dementia will take us over, and take our minds over. Just little things apart from dementia to aim at help me, coffee with friends, ten minutes weeding tiny garden, anything really to keep our minds away from dementia. I know it all feels pointless, feel that when I tend my garden as Oh will never see it again, but birds see it, butterflies see it ... well you know what I mean. Thank you so much for posting.
Oh, I experienced the same thing. My azalea is flowering, and I thought, what is the point if he isn’t here to see it? It’s so hard to take pleasure in things alone.
 

Hazara8

Registered User
Apr 6, 2015
697
0
Ooh, I’m not quite there with you @Hazara8 ...counselling can help one to find strategies to recognise and deal with what is ‘taking place inside YOU’...
Yes. It really is up to the individual and certainly not me! When someone seeks such help they usually are meeting that need halfway, which helps, as you say. I suppose I was focussing on the ultimate predicament. You are alone, say on a mountain top and with no other body to turn to - other than yourself, which is then a reality, a fact. That then presents a major challenge. When people speak of their dementia journey (caring for a loved one) that same 'challenge', I believe, is very often confronted for the very first time. But, yes. I have known more than one colleague who has found solace in counselling.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Oh, I experienced the same thing. My azalea is flowering, and I thought, what is the point if he isn’t here to see it? It’s so hard to take pleasure in things alone.
Thank you, and yes, it is. Also as human beings, and loving partners, we are so used to doing things FOR someone, to give someone else pleasure, to help someone else. Thank you so much for posting. What colour is your azalea?
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Thank you, and yes, it is. Also as human beings, and loving partners, we are so used to doing things FOR someone, to give someone else pleasure, to help someone else. Thank you so much for posting. What colour is your azalea?
You sweetie...it is a beautiful coral colour. If I were at home I would take a photo and show you, but I am with Martin and we are looking at this....

FCE7EFD5-C9D2-4DC1-899C-FD2C0D5A8003.jpeg
 

kindred

Registered User
Apr 8, 2018
2,937
0
You sweetie...it is a beautiful coral colour. If I were at home I would take a photo and show you, but I am with Martin and we are looking at this....

View attachment 58972
Oh my dear what a fantastic scene, glorious. Thank YOU. And I love the thought of a coral azalea. My garden is very tiny but is full of self-sown cowslips and primroses, plus the violas I plant because Oh loved them. I think the colours in the garden can lift our spirits as well as keeping the insects happy. Thank you so very much.
 

70smand

Registered User
Dec 4, 2011
269
0
Essex
My husband was sectioned 1 and a half years ago, and has been in a care home for a year. He has mixed dementia, started 5 years ago, now severe.
I’m still trying to adjust to being alone, after 50 years together, working together in our own business too. I feel as if I have had my right arm chopped off. I’m trying to distract myself , but I know that there is no hope for him, and he has deteriorated so quickly .
I normally go to be with him for 2-4 hours every afternoon although he cannot speak and needs everything done for him, unable to stand or feed himself.
He’s had a couple of infections requiring antibiotics and a recent visit to hospital for a day. We have a DNR in place so it’s all pretty depressing, watching him disappear. I get overwhelmed at times and can’t sleep,worrying about him.
I’ve tried group meetings dealing with grief, coping and loss but it doesn’t help as he has the most severe condition. I’m exhausted .
My dad has had Alzheimer’s for about 14 years, otherwise everything you say could have been written by my mum, in fact I had to double check it wasn’t my mum. She visits dad every afternoon until he’s tucked up in bed and I wouldn’t even try to stop her- I just go along and support her, especially as she doesnt get much conversation from dad or anyone else up there. It’s even harder since he can no longer walk so she can’t walk round the garden with him or bring him home. It’s been a long slow and painful road but dad has deteriorated so rapidly in the last year. We do get sparks of ‘dad’ though and he will often say ‘love you darling’ when she kisses him, although he does sometimes say that to the carers after they’ve hoisted him!
My heart goes out to my mum and seeing how she is I can only imagine how you must be feeling. I feel it’s so all consuming and just hate everything about this wretched illness. I hate the thought of my mum going home alone to their lovey house so I just hug her a lot and give her lots of support - it’s about all I can do. I hope you have close family or friends you can share some hugs with.
My thoughts are with you xx