Heart breaking decision

[ladyboxer]

Last Friday my husband had to go into care because he has vascular dementia. I always knew it would be hard but never imagined it could be this difficult, it didn’t help when my daughter and I went into his room, it smelled of urine, the bed and bedding wasn’t very clean, and there was someone’s dirty smelly clothes in the drawers, I desperately wanted to turn round and take him home, but I was advised that I could make him worse.
We rang the social worker and demanded that he find somewhere better, to cut a long story short, on Tuesday my husband was able to go to a lovely home, which is much better, I took him there on Tuesday and saw him get settled, I have also went to see him in the afternoon with our new rescue dog which he hadn’t seen and he was so calm with her, yesterday when I took the dog again he was more unsettled and the dog sensed this and couldn’t rest, I only stopped for an hour, which upset me him and me. Last night he was very restless, this morning he just wants to fight anyone who goes near him, staff think it could be an infection, or the moves that have upset him, so I was advised not to visit today. To say that I have cried a lot is an understatement, I am an emotional wreck, my daughter had to go back to Scotland as she is due to start treatment after having breast cancer, sorry for the long story but it’s the hardest decision I have ever made. I miss him so much and I feel guilty, could I have done more , should I have tried harder to deal with his illness and keep him home longer.

 

[SAP]

Hello @ladyboxer , you certainly have been through the mill. Lots of stressful situations do you go through right now.
I’m glad you were able to get your OH into a better home , it sounds like the right call. He will need time to settle and giving him and the home time to deal with that may be a good idea.
You are not on your own here, everyone is supported willing to listen. The guilt we all feel is awful but really you don’t need to feel guilty, you have done so much. It gets to a point where there is no more a carer can do and the 24/7 care in a safe space is necessary. Don’t forget to take care of yourself .

 

[Gosling]

Hello @ladyboxer and welcome to this friendly and supportive forum. There is a wealth of shared experience of dementia to be found here from members that really do understand.
I am sorry to read about your husband's dementia diagnosis and the fact that he is now in a care home setting. It's tough, very tough indeed. I do feel for you. The decision to place a loved one in a care home is just one of the worst one has to make, yet make it we do, because we know that it is what they now 'need' to keep them safe, rather than what they 'want'. It is heartbreaking for sure.
I'm glad you've now got him in a better home and that hopefully now, he will settle. It may take a little while so try not to be too alarmed by that.
This is certainly a good place for support, sound advice and helpful suggestions... and use it too even if you need to let off a bit of steam.

 

[ladyboxer]

Thank you for your replies, unfortunately the care home is not as good as I thought it would be, there have been some safeguarding issues that concern me, my husband has lost a lot of weight due to the fact that he is not eating well, staff are supposed to be monitoring his input and output, but quite often he has his food alone in his room. Christmas has been very difficult for both of us, each time I visit he asks why I keep leaving, he now thinks I have someone else, and I can’t convince him otherwise . The last few days have been really long and lonely, I thought I was a strong person but I have never cried so much, if it wasn’t for my daughter ( who lives too far away to visit) and my little dog, I think I would have struggled not to end it all , because the pain and sense of loss is unbearable.

 

[try again]

If he has lost a lot of weight speak to the manager or his key carer.
They should be weighing him monthly or weekly.
Ask why he is eating in his room and not with the others.
Ask to see his care notes.
When you leave don't say goodbye. Leave your coat somewhere. Just pop out to take the dog for a pee or something.

 

[ladyboxer]

If he has lost a lot of weight speak to the manager or his key carer.
They should be weighing him monthly or weekly.
Ask why he is eating in his room and not with the others.
Ask to see his care notes.
When you leave don't say goodbye. Leave your coat somewhere. Just pop out to take the dog for a pee or something.

Thank you for your reply and support. Both my daughter and I have asked for my husband to be weighed weekly which staff say they are doing, he doesn’t always like eating with others because he has a mild tremor in one hand and is conscious of it. Staff say he eats a full cooked breakfast, but I have found half eaten bacon sandwich in his room. He has been assessed by another provider with a view to them accepting him into one of their homes, hopefully they will get in touch with me this week. I am still waiting for a financial assessment for myself as up to now I will only have my state pension and a very very small occupational pension to live on, this is also adding to my stress, has anyone else had this problem.

 

[brightsideoflife]

I really , really do feel for you. We accepted last March that between us - my dad, me and my sister, we could not give my beautiful mum the 24hour care she truly needs to be safe. It was , as many have already said, the very worst thing we have had to do as a family and the guilt and sense of failure and loss cannot be put into words.
I wanted to offer some encouragement to you : although initially it was very hard for everyone, my mum is now settled and she looks so well. She is happy in her little world. At the beginning it is difficult- we have learned much along the way . I do hope that you find a place which you feel offers all that your husband needs- we have found that the staff in my mum's home feel like our extended family now. We are always welcomed and can go any time and a strong bond of trust is there which I feel is important.
I never say goodbye to my mum - we say we are just popping down to the shop and will see her later. In the early days my mum used to fret a lot about going"home" and seem very agitated, however as time has gone on , she no longer asks these things - I am no expert but I think the settling in period can be a a while - it was certainly longer than I anticipated. For us , too, the change took a while. I hope you have a good network of friends around you who can support you during this time. Take care

 

[try again]

I am still waiting for a financial assessment for myself as up to now I will only have my state pension and a very very small occupational pension to live on, this is also adding to my stress, has anyone else had this problem.

Do your husband have a pension? I believe you are entitled to half of it.

 

[ladyboxer]

Do your husband have a pension? I believe you are entitled to half of it.

Hi, yes he has a small work pension which would give me £ 90 a month, I am still waiting to find out if I can move him to a better care home and how much I will have to pay towards the fees.

 

[ladyboxer]

I really , really do feel for you. We accepted last March that between us - my dad, me and my sister, we could not give my beautiful mum the 24hour care she truly needs to be safe. It was , as many have already said, the very worst thing we have had to do as a family and the guilt and sense of failure and loss cannot be put into words.
I wanted to offer some encouragement to you : although initially it was very hard for everyone, my mum is now settled and she looks so well. She is happy in her little world. At the beginning it is difficult- we have learned much along the way . I do hope that you find a place which you feel offers all that your husband needs- we have found that the staff in my mum's home feel like our extended family now. We are always welcomed and can go any time and a strong bond of trust is there which I feel is important.
I never say goodbye to my mum - we say we are just popping down to the shop and will see her later. In the early days my mum used to fret a lot about going"home" and seem very agitated, however as time has gone on , she no longer asks these things - I am no expert but I think the settling in period can be a a while - it was certainly longer than I anticipated. For us , too, the change took a while. I hope you have a good network of friends around you who can support you during this time. Take care

Thank you so much for your reply, I am still waiting for the social worker to carry out a another assessment on my husband, she has told me in no uncertain terms she doesn’t believe it is in my husband’s best interests to move him, a decision she made after meeting him for 20 minutes. My daughter and I have so many concerns about my husband’s care , we have arranged a meeting with the care provider, but no matter what the outcome of this is, we are sure my husband will be better cared for in another care home., it all depends on what the social worker puts in her report to the funding officer.