• 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.

Feeling devastated

gwincy

Registered User
May 18, 2014
17
Cheshire
After a difficult time last week when my husband refused point blank to get in the car to go to daycare I have had to put him into respite initially for three weeks with a view to permanency. He was also becoming incontinent and would not let me change him until he was ready, sometimes for hours. But I miss him so much and cannot stop crying, I know he is well cared for in the care home and when I phoned today to check on him they said he was quite cheerful, but I cannot stop thinking that I would rather have him home with me and put up with everything this dreadful disease throws at me. I know its stupid and I know I cannot cope at the moment but the thought of life on my own is unbearable.

The thought that he might never come back to the home we have shared for over 40 years is so painful. It is like a bereavement but knowing that he is just 10 miles away.

I will just have to wait and see how he is in three weeks, although in my heart of hearts I dont think I can give him the care and attention he needs.
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello gwincy, 4months ago l was where you are, we have been married 52yrs, l could not look after my husband, as my health was suffering, he went into a care home, to start with he got into the garden and jumped a 6ft fence, after new meds he settled down, since xmas he has been very agitated, yesterday he jumped the same 6ft fence, as he thinks he is in a prison, my heart goes out to you, it is so upsetting for us. I am at my wits end as to know what to do. All we can do is to stay strong for our own health.
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
After a difficult time last week when my husband refused point blank to get in the car to go to daycare I have had to put him into respite initially for three weeks with a view to permanency. He was also becoming incontinent and would not let me change him until he was ready, sometimes for hours. But I miss him so much and cannot stop crying, I know he is well cared for in the care home and when I phoned today to check on him they said he was quite cheerful, but I cannot stop thinking that I would rather have him home with me and put up with everything this dreadful disease throws at me. I know its stupid and I know I cannot cope at the moment but the thought of life on my own is unbearable.

The thought that he might never come back to the home we have shared for over 40 years is so painful. It is like a bereavement but knowing that he is just 10 miles away.

I will just have to wait and see how he is in three weeks, although in my heart of hearts I dont think I can give him the care and attention he needs.
Sweetie, my heart goes out to you. So many of us on here have been in this dreadful position, having been with our loved ones for decades, trying to cope when we're exhausted, tackling incontinence, sometimes violence, and desperate.

I used to get really angry when someone would say "Oh I know all about Alzheimer's. My Uncle's got it". It then transpired they saw him about twice yearly, for a few hours. We're living this 24/7, and it's a damned hard road to travel. It broke my heart when my late husband went into care, but I'd coped for 12 years, and I was shattered.

We can all only do our best, and a shattered carer can't keep going indefinitely.
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
Hello gwincy, 4months ago l was where you are, we have been married 52yrs, l could not look after my husband, as my health was suffering, he went into a care home, to start with he got into the garden and jumped a 6ft fence, after new meds he settled down, since xmas he has been very agitated, yesterday he jumped the same 6ft fence, as he thinks he is in a prison, my heart goes out to you, it is so upsetting for us. I am at my wits end as to know what to do. All we can do is to stay strong for our own health.
Pam, you are going through such an awful roller coaster of a life, aren't you. I'm so sorry that things aren't going smoothly at the moment, and hope hubby improves soon. No wonder you're at your wits end. Sending love and hugs. xxx
 

esmeralda

Registered User
Nov 27, 2014
3,072
Devon
So sorry you are going through such a sad and difficult time gwincy, it must be such a hard place to be. I know a lot of people have said that difficult as it is, they have found that they are eventually able to spend more quality time with their loved one without the stresses of trying to manage an impossible situation at home. Times of transition are always hard to cope with but I do hope things get a little easier for you soon
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 

esmeralda

Registered User
Nov 27, 2014
3,072
Devon
Hello gwincy, 4months ago l was where you are, we have been married 52yrs, l could not look after my husband, as my health was suffering, he went into a care home, to start with he got into the garden and jumped a 6ft fence, after new meds he settled down, since xmas he has been very agitated, yesterday he jumped the same 6ft fence, as he thinks he is in a prison, my heart goes out to you, it is so upsetting for us. I am at my wits end as to know what to do. All we can do is to stay strong for our own health.
Oh Pam, you must be so distressed about this. We all hoped things would settle down for your husband. Nothing I can say to help, just sending you a huge hug and lots of love.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 

Jinx

Registered User
Mar 13, 2014
2,333
Pontypool
Gwincy, it is a hard decision. My husband went into care 3 months ago and I do miss him but he is far more settled than than he was at home, so I have to be grateful.

Pam, how awful for you, I'm so sorry you're having more problems with your husband.


Sent from my iPad using Talking Point
 

gwincy

Registered User
May 18, 2014
17
Cheshire
Hello gwincy, 4months ago l was where you are, we have been married 52yrs, l could not look after my husband, as my health was suffering, he went into a care home, to start with he got into the garden and jumped a 6ft fence, after new meds he settled down, since xmas he has been very agitated, yesterday he jumped the same 6ft fence, as he thinks he is in a prison, my heart goes out to you, it is so upsetting for us. I am at my wits end as to know what to do. All we can do is to stay strong for our own health.
Thanks everyone for your kind and understanding replies. Pamann it must be awful if you do not feel your husband is settled at least so far my husband seems quite settled but am not going to see him until he has been in at least a week as I do not want to upset him. The house is so empty though without him I never thought I would miss the muttering and pacing.
 

gwincy

Registered User
May 18, 2014
17
Cheshire
Sweetie, my heart goes out to you. So many of us on here have been in this dreadful position, having been with our loved ones for decades, trying to cope when we're exhausted, tackling incontinence, sometimes violence, and desperate.

I used to get really angry when someone would say "Oh I know all about Alzheimer's. My Uncle's got it". It then transpired they saw him about twice yearly, for a few hours. We're living this 24/7, and it's a damned hard road to travel. It broke my heart when my late husband went into care, but I'd coped for 12 years, and I was shattered.

We can all only do our best, and a shattered carer can't keep going indefinitely.
Golly I can't imagine how hard it must have been for your coping for 12 years. I feel as if I have been running on empty for years.
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello qwincy, my hubby settled very well, in the begining, thought he was on holiday in a five star hotel, since Christmas he has been very unsettled, today has been a better day l left him without tears. Thinking of you,
 

gwincy

Registered User
May 18, 2014
17
Cheshire
Hello qwincy, my hubby settled very well, in the begining, thought he was on holiday in a five star hotel, since Christmas he has been very unsettled, today has been a better day l left him without tears. Thinking of you,
Pamann, It must be so difficult leaving your husband if he is upset. I am going to phone and see if it would be a good idea to visit my husband on Sunday. He has been in respite for three separate weeks but I have never visited, just used the time to recharge my batteries. He cried when I went to collect him the first time but was okay the other times. Will have to wait and see.