Hi, is any one facing the difficult decision of transferring a partner with severe Ms and after 24 years of caring. Really hard to take the step that I should probably have taken years ago . Would love to hear your thoughts. K
Hi k - sorry no experience of this. However I do have experience of care homes. Some make my blood boil. Do your research. They are all inspected by chq - maybe care home q??? . Some are announced inspections so they can be prepared . Others unannounced so much more realistic. Look on chq website for reports. Visit yourself if it were me I would just turn up. If they are a good care home they shouldn’t mind I.e nothing to hide. A care home that is a nursing home will have qualified nurses and carers. Cares are often underpaid with not very good … Can’t think of the word. Ask about staff turnover. How long has the manager been in post. If big turn over perhaps not very good conditions. Ask to see their menu after all food is so important. If something is not liked on the menu is there an alternative. Ask about any outings they do and any entertainment laid on. Having said some carers in care homes are absolutely fantastic- tend to have been there for years. Tend to be older. Some carers may be foreign . Not that this is a problem except when their grasp of English is poor making it difficult to understand what they are saying. There are some really good care homes problem is finding them. Recommendations are always good. I really had to think about whether I should post this reply I hope I have not upset you I am sorry if this post is not what you wanted to hear but in my experience it is reality. Again some care homes are really good and really look after their residents well. So I really really hope you find one if that’s what’s needed. Have you got a good care package which perhaps just needs increasing Good luck and please free to pm me or ask any more questions Min xx
Hi - I’m just bumping you up in the hope you might get more replies not just mine. Also could you let me know you’re ok with my first reply Thanks Min xx
HI Min. Let me assure you that i am not upset by your reply. This is not an easy subject and i am not looking though rose tinted glasses. My husband is severely disabled, he is non weight bearing and can only move his arms by millimetres and both of those are fixed at chest level. His sight is very poor, speech likewise. Is fed by PEG and has been nil by mouth for 10yrs. Colostomy, supra pubic and intrathecal pump also.He has some dementia and often does not even know that he is at home. Asks constantly to get up or go to bed often when he is already ‘up or in bed’.
He goes into regular respite so i have no illusions on problems that can arise in nursing homes. There are 2 such homes near us and i would like to choose one of those as then i could get to him easily to take him out for ‘walks’ and also plan to take him to his appointments. This is a subject that i have been contemplating for years, not weeks or months. I have the backing of the children but it is myself that stops me taking this huge step. If or when i make the final decision then i have to live with myself. I have ‘lasting power of attorney’ with my eldest son so we have legal authority to fight my husbands corner.
There must be someone who has made this leap. I know that only i can decide but it is the hardest decision of my life.
We do have a good care package and wonderful backup from the district nurse team but no one is there in the middle of the night to give a helping hand. Lack of sleep is a killer for everyone but after 24 years it has taken its toll.
OMG thank you for replying and putting my worried mind to rest. I keep putting myself in your husbands situation. If it were me I think I would want you to have a more fulfilling life than caring for me. If I were you I would just feel so guilty for putting husband in a home… But would realise that this is what my husband would probably want so you could have a better life. and you would be involved as much as possible with social things and appointments. This is such a difficult decision for you. You say he has some dementia does he have any lucid times when he can express his wishes? THIS IS A SITUATION WHEN LIVING WILLS ARE SO IMPORTANT. I AM NO EXPERT BUT I THINK I WILL WRITE MY WISHES SHOULD I EVER DETERIORATE SO MUCH AS YOUR HUSBAND I.e put me in a good home and let my husband enjoy his life Massive hugs Minxx
I have had my living will in place for years. All of my family are aware of my wishes. It does take away the pain of wondering if they are doing the right thing when you have already told them how to proceed.
hello love, oh I do feel for you! having to make a decision like this must be heart wrenching.
You have done your best to keep your hubby at home, but as it has taken so much doing, that you have to have a rest from his caring.
Just one thing if I may pick up on it…you say you have marveous day help but the nights are doing you in.
What about night sitters? I have 1 sleepover carer a week, to give my hubby a good night`s sleep. But I do know waking night sitters are available to those who need them.
Whatever happens, you do not need to feel guilty about doing it. I wish you and your hubby well.
HiPoll Thanks for your reply. I can have night sits but although I know this sounds negative, the fact is that the small bungalow we live in is a 70’s build and therefore plaster board walls so that every sound carries! I can even hear in the kitchen which is furthest away, the garage or garden shed are the only places where his calls cannot be heard. There we have it. I always get up at least the once just to check that all is well but he just wants to get up, no matter the hour, he even wants to ‘get up’ even when he is up, not his fault because he just does not know, this is the MS dementia. K
My dad sadly passed away two days before my diagnosis. However he suffered from Parkinson’s and had been in a nursing home for five years. It was a huge decision for my stepmum, especially as my dad did not find it easy thinking about how his condition effected others and did want to go. She herself just could not cope physically anymore, having been weakened herself from cancer, although now in remission. We all supported her decision though. She found the nights the hardest as dad just didn’t sleep at night and was very demanding. His time clock was effected and he would sleep all day. It was the best decision to make in a difficult situation and one we would have hoped never to have had to make. It is really important to look for homes close to you, as being a bit older herself my stepmom found visiting several times a week tiring in itself. I think just popping in to check it out is a good idea. Definitely try and find recommendations. Maybe pop in on a Sunday afternoon and speak to other relatives to ask there opinions if you can’t find anyone else you can ask. You obviously care for your husband so very much but if it ends up making you poorly, which my stepmom found, then you can’t be there to give the support you so dearly want to give. It is never an easy decision and must be one you feel that is best for both of you. I hope this helps a little. Thinking of you. X