Husband (mid-dementia, parkinsonism,, diabetes 2 and other things) sleep reads 12-15 hours a day. He's always been a passive introvert with poor social skills. Had him evaluated for depression, drugs and drug interaction. He's always been a passive solitary introvert. Tried classes, events, friends. Evaluated for depression, drug side effects and drug interaction. Won't exercise. Says he is happy here sleeping, reading and watching the same shows over and over on tv. My therapist suggests I leave him alone and let him live/die the way he wants to. It's hard to watch. Says he's happy here. Assisted living? He says he'd do it. He would never participate socially anyway. I've built my own fulfilled life. Thoughts?
As to Parkinson's and dementia, the norm is to want more sleep. As an RN I can assure you that even in the absence of any disease or disorder process, the elderly sleep more and more and love it more and more. My own father said he longed to do nothing other than stay in bed late, then have breakfast, and take a nap. He was so honest in his 90s to tell me he longed for the final "nap" as he called it. That despite having a lot of love and a very good life.
I know you are well meaning, but you are negating your husband's very life when you choose not to listen to him when he says he is happy. Must happiness be your own version of it? For someone social and outgoing such as you must be this has to be hard to fathom. But please listen, please give him peace, and please allow him his own choices when his choices are rapidly disappearing from him. Allow him the power and control of his life he can still manage.
Make no mistake. I know your HEART is in the right place, and I recognize your love. But please do some research into things, consider his wishes. Then listen to your own therapist's guidance, and let your husband be who he is. I wish you the very best.
Is there any part of the day when you and he are able to enjoy each OTHER’S company by spending a short period of time doing what he LIKES to do (talking about what he’s reading, the show he’s watching on TV……..), or briefly helping you fold towels, put silver ware in a tray…..?
Parkinsonism CAN impose significant fatigue on patients. Has his doctor sad anything about how much sleep/rest he NEEDS, or how much is good for him?
If you are taking good care of him, and have your own hobbies and social contacts and interests, is there any other reason for you to be concerned about his welfare on the schedule he’s chosen?
Sleeping a lot, reading and watching TV, although he watches lots of educational shows and is involved in everything from finance, politics etc.
I do not suggest anything. He had physio for almost 2 years,
3 different therapists, each promising improvements,
if anything it is worse, so this man who exercised two hours a day a little over 2 years ago does nothing.
I accept how horrible Parkinson’s is. It is cruel disease, slowly leading to total destruction of motor skills.
I can only imagine what it feels like knowing what is happening and there is no cure, no hope for it, or any alternatives.
We saw every specialist, none offered anything anybody with little knowledge of general health wouldn’t already know.
Your husband is NOT the man that he was before he had Parkinson’s disease. So what if he is an introvert. There is room for everyone on this planet.
Trust me, people who are suffering with Parkinson’s disease aren’t peppy!
Listen to your therapist. She sounds like a very wise woman.
Best wishes to you and your husband.
Your therapist has given you good advice. I'm sorry it is hard for you to watch. Do you think you are ready to move into assisted living?
It sounds like you're perhaps in a bit of denial about his condition, which of course makes it more difficult for you to accept things as they actually are instead of how you'd like them to be.
It also sounds like perhaps he's now become an inconvenience for you and your supposed "fulfilled life." What a shame. Your husband can't help the way he is anymore as his brain is now broken.
What if the tables were reversed and it was you who had the issues he has? How would you want him to treat you and care for you?
That's the way I had to look at things while I cared for my husband for 24 1/2 years. I believed that he would care for me just as good as I was caring for him.
Now I'm not saying that at times it's not hard, because God knows it is, but as a spouse most of us vowed to take care of each other "in sickness and health, till death do us part", and while it's not always easy, it can be done to the best of our ability.
So let the poor man sleep all he wants(my husband slept 14-20 hours a day for the last several years of his life)and just let him know that you're there for him and that you love him regardless of what's going on with him. And if he's sleeping more it also allows you to get more things done and more time for yourself right? So perhaps it's a win win for you both.
I will also suggest finding a local caregiver support group that you can attend. I know that my support group saved my life while I was caring for my husband, because who better to be able to share with than other folks who know EXACTLY what you're going through.
Best wishes in doing what is best for your dear husband and yourself.