My husband has had Parkinson’s for 12 years. 4 years ago he developed Lewy Bodies Dementia and in the same year had a stroke which diminished his language a great deal. He is 76 and I am 73.
For 6 months now I have had a live- in carer but I still feel under the most tremendous strain. My husband has deteriorated a lot in the past few weeks and watching him fall apart is almost unbearable. As he becomes less and less able to do things, it seems pointless to try and create a “normal” home life.
There is a beautiful care home very near us and I am starting to wonder if this would be a better environment for my husband. I have always said I would never, under any circumstances, let him go to a home. But things have changed so much I wonder if this is still the right decision.
Has anyone else been through this agonizing choice?
Many carers have gone through this. And whatever they do, they feel guilty. But the question really isn’t about should you or shouldn’t you? It’s about the fact that the situation is unsustainable as it is. Even though you don’t have to do all the caring, you have to do a lot. And the emotional strain is enormous. Watching someone disintegrate that way is awful, and you need a break. Care homes are often seen as horrible places to be, but a well-run home is often the best option when you’re reaching the point you seem to be at now.
You just have to give yourself permission to share the care with a care home. As it’s nearby you’ll be able to visit easily and he’ll have 24 hour support. And you’ll get a chance to recuperate.
My lovely husband was in a nursing home. I didn’t actually have any choice, as his consultant said it wasn’t safe for him or me to be discharged home. I felt guilty, most of us do, but my husband’s welfare etc was paramount. He was visited most days by family. I went every other day, staying as long as I could. Depending on his mood. ( Dementia related) Classes myself as his care manager,making sure his needs were met, then allowed myself to relax at home. Only way I coped. I know I did the very best for him, and was stronger to fight his corner if needed. He had 24/7 care.
As Charles says, guilt kicks in whatever decision is made, however your welfare is very important, to enable you to cope
Welcome to our forum, I am sure lots of other carers who have been in a similar situation will be in touch with you soon. I also wanted to highlight some other ways you can connect with carers. We are running several online meetup groups at the moment, I’ve attached a link to them, we have our weekly care for a cuppa. This group gets together every Monday afternoon, its a great place to meet other carers and share advice and support. Have a look at the link Julia and see if it’s something you would be interested in Online meetups | Carers UK
We are also now running a weekly Share and Learn sessions, where we run a series of fun and relaxed online sessions where visiting speakers who share tips and skills on a range of topics - please have a look at the link and see if one grabs your attention. Share and Learn | Carers UK
There is also Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)
My heart goes out to you and your husband trying to manage with the emotional and physical elements of where you find yourselves. Although I am not in the same situation as you I am going through something similar and thought sharing it may help.
I have been caring for my father who is 76 for nearly a year. He is end of life and the process is very slow and painful to watch. All of his life he has said he wanted to die at home and not go into a care home. I have done all I can to ensure that happened. Recently something has changed and although communication is difficult he has changed his mind and now wants to go in a care home. I believe this is for a few reasons one being he doesnt want his illness to continue to impact my life (I have moved in with Dad to care for him, I normally live in Wales) and because he wants to be around more people, hear more noise (even though he is nearly deaf) and he wants to be around more nursing staff as he is getting anxious about needing that extra support. It has taken me some time to accept his decision to go to a care home as this is not what I ever would have wished, having reflected on it all I can see that is best for both of us. Then I can be his daughter again, be cheerful again, look forward to seeing him and be my best self for him to spend time with.
Peoples thoughts and wishes can change, and it is most certainly much harder for you as your husband cannot communicate that to you. Had dad not been able to communicate that to me, I think I would still be making that decision now for him as I am broken. We do what we can when we can for those we love, but does it benefit them if we are exhausted, if we are in pain seeing them so poorly. I think someone else said there is no right or wrong, there is only what you feel is best for both of you.
My mother has elected for end of life to be in the hospital, she doesn’t want it to be at home because she doesn’t want me to be under such strain, similar to what Dion has said. My mother wants them to do the work so that we can have quality time.
Give a normal life? your situation is not normal and you are only one person albeit with a live in carer and it seems that the time has come that he needs more than you can give alone.
It is local, you can visit and then let him have his rest and sleep until you visit again and you can have true and proper rest and keep strong for him. At the end of my dads life, my mother lived in the chair next to his bed at the hospital and then the hospice.
It’s an impossible situation and as others have said, there will be guilt either way. My dad has Parkinsons (10 years) and was doing really well on his own but suddenly went blind (diabetes) and it changed everything. Having aggressively refused any discussion about moving somewhere more suitable, he suddenly decided it would be better for everyone if he went into residential care. I chose a nursing home so he wouldn’t have to move again if his Parkinsons deteriorated as I know change can make that worse. Within a few short months he has deteriorated significantly and of course I blame myself for that but on my more rational days I know this came about as a result of the blindness and there were signs of the decline since then. Any of the falls he has had could have been at home with me and been far worse. Any of them could have happened when we were not with him. Now, what we think is Lewey Bodies, has rather quickly taken a hold too.
Perhaps one question to ask yourself is how can you give him your best & his best life now? If live in care is still exhausting and not working, would someone taking the reins of his care completely be better? Could you then go back to being his wife and really enjoying the time together rather than being too tired / busy / stressed etc? Could anyone help you to manage with him at home part time (either every day or just on some days) if you found somewhere close?
I hope you can come to a decision that you’re both comfortable with. Wishing you love and strength for this challenging time.
I have a dog who I need to be there for despite my own health issues. So after doing a lot of research and writing so many emails to people working in health and social care I finally chose a recommended mobility aids company plus a care provider. I even had a care needs assessment that was done first of all and we then discussed what would work best etc.