Am I doing the right thing ?

[jennypie]

my husband is in hospital he went ‘off his legs’ not sure if a rapid change in Alzheimer’s uti or what, mobility doesn’t seem to be improving, he doesn’t have any conversation apart from the odd words his only pleasure seems to be eating! He seems settled and watches what is going on arround him what goes on in his mind I don’t know. Home would require a package of carers, hoist bed etc I always thought I would look after him at home as long as possible now all I see is him sitting in his room hoisted by people coming into the house and me popping in and out checking he’s ok as he just has 4 walls to look at so I’m thinking why am I doing this? Should he be somewhere with people arround 24/7 and things going on to stimulate him... for I’ve now tasted freedom sorry if hat sounds selfish but I’ve been caring for him solely for 4 / 5 years and the last ten months it’s been very physically demanding had I been more his age - I’m 63 Snd he’s 80 I wouldn’t of done the things I’ve done. Oh the guilt and sadness of feeling like this ... anyone been there?

 

[Bunpoots]

Yes, sort of.

My dad looked after my mum. He tried so hard, too hard in my opinion, to keep mum at home when she could no longer. Even though it was my mum and not my OH it felt terrible to "let her down". I was helping to care for her and working full time. I couldn't afford to give up work - had two kids to think about and their father had just walked out. We just couldn't manage to care for her well enough.

When my aunt went off her legs we had to let her go into a care home. It's just too hard to move an adult who can't bear their own weight.
The home was lovely, always something going on, and a quiet lounge too for those who preferred it.

 

[Grannie G]

. anyone been there?

Many of us @jennypie

All the doubts, feelings of failure, upset, exhaustion, anxiety, disloyalty. You name it , it`s been felt all over TP.

There comes at time when one to one caring just isn't enough. I was worn down and my husband told me he was lonely. It wasn't`t enough for him, just having me around all the time, with the addition of a couple of carers every day and a couple of paramedics almost every night, helping him up off the floor.

Once in his care home there was so much movement. People were coming and going , not putting any pressure on him but giving him almost a personal theatre of activity. Carers were there to help him off the floor, day and night. He gained weight and once the settling in period was over, was more contented than he'd been for years.

I visited every other day and it worked for us. I hope it works for you and the doubts and fears prove groundless.

 

[Amethyst59]

I’m not exactly in the same position...but just about to start a day care...one day a week now, with Cogs already for one day. It is not just respite for me, but stimulation for him. I cannot keep him entertained all day, and he cannot read now, or do puzzles...or anything. I always thought we would keep him home for ever and ever, and that money could buy everything we will need. But it can’t buy a happy home full of people to chat to, or watch, and a whole ever changing team of people to care, and ...all the things that are in a care home, that cannot be replicated at home.
You may have read in my thread that my late husband died in a hospice, rather than at home, where he wanted to be. But I just couldn’t give him...even a small percentage of the care he got there. And I hadn’t failed. I made the best decision for him...the best for both of us. I had three precious weeks of being his wife again.

 

[padmag]

my husband is in hospital he went ‘off his legs’ not sure if a rapid change in Alzheimer’s uti or what, mobility doesn’t seem to be improving, he doesn’t have any conversation apart from the odd words his only pleasure seems to be eating! He seems settled and watches what is going on arround him what goes on in his mind I don’t know. Home would require a package of carers, hoist bed etc I always thought I would look after him at home as long as possible now all I see is him sitting in his room hoisted by people coming into the house and me popping in and out checking he’s ok as he just has 4 walls to look at so I’m thinking why am I doing this? Should he be somewhere with people arround 24/7 and things going on to stimulate him... for I’ve now tasted freedom sorry if hat sounds selfish but I’ve been caring for him solely for 4 / 5 years and the last ten months it’s been very physically demanding had I been more his age - I’m 63 Snd he’s 80 I wouldn’t of done the things I’ve done. Oh the guilt and sadness of feeling like this ... anyone been there?

This resonates with my position - I am 63 years old too, and my partner is 72 with AD. I am trying my best too, I have been caring for 5 years and his decline is very noticeable over the past year. He is wobbly on his legs and shuffles. He is fairly solidly built so I would be in great difficulty if he could no longer walk, I just hope he keeps his mobility as long as possible, so I can keep him at home with me. If your husband is fairly sociable and would enjoy different company during the day it could be the solution for him and you. I notice that my partner is more animated when we have visitors (very seldom these days, usually ss or occupational therapists) so I suspect he is a bit lonely just with me most days, although he does attend a day centre 3 half days per week, and is always happy to go. Easy to say don't feel guilty but if your husband is open to it I would say it could work for both.

 

[Beate]

OH very suddenly lost his mobility twice. The first time he miraculously regained it again after a few days in hospital, we got OT and physio input and he returned home. The second time he didn't. He was medically fit for a discharge after a week and they wanted to send him home with community physios continuing treatment. I put my foot down and said that as long as he can't walk he can't come home. We live on the third floor without a lift so I wouldn't have been able to get him out of the house for anything, effectively making both of us housebound, plus our flat is too small for all the equipment including hoists. He went on to a rehab ward for eight weeks but didn't regain enough mobility so the only option left was a nursing home. The Social Worker didn't put up any resistance, he could see it as clearly as I could. It didn't mean that there wasn't a lot of guilt involved but it was in his best interests, and it wasn't me putting him in a home - dementia did. The thing is that the no longer walking or talking indicate the very last stage of dementia, and with all the will in the world, we carers often cannot cope on our own then anymore, and we shouldn't have to. It doesn't mean we stop caring and visiting and organising things!

So if that's what you want you need to very clearly express this to the doctors and the hospital social worker and anyone else who wants to listen. You have the right to refuse him coming home and they will have to sit down with you and discuss steps.

 

[LadyA]

I always thought I would look after him at home as long as possible

And this is exactly what you have done, Jennypie. You have cared for your husband for as long as was possible, and now, it looks like you are recognising that he needs more care than you can provide. It happens to a lot of us. I too had been determined to keep my husband at home. He had had a lifelong horror of nursing homes (based on distant memories of horrific institutions in poor areas of the US back in the 1930s). However, it got to where I simply couldn't care for him safely. And when he settled in a Nursing Home, he actually loved it! He thrived in there. He loved the company, he loved having uniformed male carers to help him (and never got aggressive or violent with them), he loved all the comings and goings, and the wide, safe, flat corridors where he could walk for hours. It was a heartbreaking decision, but the absolute best decision for both of us.

 

[margherita]

I always thought I would look after him at home as long as possible

The answer is in your own words
"As long as POSSIBLE"

 

[Everton Annie]

@jennypie I am also 63 but my husband is 67. When we were aware of the journey we were on I promised I would care for him as long as I possibly could. Four weeks ago he went into full time care. I am so conflicted about this. I know that he is better stimulated by the activities and the staff and at 3.00 am if he doesn't want to go back to bed the staff will just make him a cup of tea. I now have tasted the freedom you talk about and am finding me. I have a future and it is with my husband but in a different way. I miss him terribly but in truth my husband has been missing for years. It has been the hardest decision I have probably been faced with but I do think it was best for him and for me. The home and staff are good and that makes the difference. Be kind to yourself, you will still care just in a different way and perhaps better quality of caring because you won't be exhausted.