My 70 year old husband was diagnosed with Parkinson’s 6 years ago. He didn’t have tremors but had very noticeable changes in his gait, stiffness, and moved very slowly. It took several falls, two broken arms and two car accidents before we finally got the diagnosis. He has always been a kind of low energy guy but now he sleeps or just lays in bed almost all day. He will often go for days without showering and does little to fight the progression of this disease. I feel like I’ve lost my partner and have a dependent now which makes me so sad, frustrated and lonely. I try to find ways to motivate him to engage in the world, as he is still able to walk mostly unassisted and perform all ADLs independently. I’ve begged him to try therapy but he lacks the follow through to even contact the therapists I’ve found for him to check out.
I am 10 years younger than he is and this is a second marriage for both of us (wed in 2015). This is not how either of us envisioned our journey together and certainly not how I thought I’d be living at this point in my life. I try to be supportive and empathetic because I know he’s struggling but I want him to fight harder to make the most of the life he has rather than just spending it in bed sleeping or staring into space.
I would start with some information by firstly attending with your hubby to his doctor to discuss what a "day-in-the-life" is now.
Ask the doctor if there are any medications causing this sleepiness and disinterest or if any medication might help in motivation at all.
Ask if you can have a physical therapy consult.
Ask about a try at some mild anti-depressants for motivation and etc.
And most of all ask for education materials and guidance for yourself, because the sad truth is that the trajectory is now well and certainly downward, with more losses coming. Adjustment will be key to survival.
I would join any support groups you can find, and suspect, unless you are in a quite large community that this will be online. I recommend Facebook Groups for spouses dealing with this condition.
The truth is that you will now be dealing with loss and no, no one hoped that this would be their "Golden Years".
We have several members here with spouses with Parkinson's and one who certainly comes to mind is EvaMar. I hope she is around to answer you, as she could give some guidance as to what helped her get through.
I am so very sorry. This is so painful for the spouse who is well. It may come down to socialization being something that is now mostly yours alone, and to give YOU respite, and that does hurt.
I wish you the best.
Try for some good books online at Amazon. There is much written about Parkinson's. While it may not necessarily help change anything it will make you feel less alone and help you grasp what is happening.
Get DH to his doctor to see if he needs an anti depressant to help him, if Parkinson's dementia is setting in, or what may be going on.
Get out of the house yourself if DH is going to lie in bed all day and do nothing. Have lunch with your friends and go shopping, join a book club, a support group, etc.
I wish you the best of luck with a difficult situation.
I’m in my 50s with heart failure so I can assure you life is not fun for me right now nor is this how I foresaw my life going.
But you know what happened when I was 28? My husband got cancer. Life was not fun nor did I expect to have a dependent 28 year old sick husband plus a 6 month old baby plus working full time. No, I absolutely didn’t forsee any of that. You know what isn’t fun at 28? Cancer
My point is, this is your life that you are living. Yes, I know you are sad lonely and depressed because I went through that too when I was 28.
yes, your husband likely has depression and anxiety because that is part of his progressive and fatal disease process. It sounds like he is pretty far into ir also with his broken arms etc.
Staring off into space and sleeping are part of his disease also and might not be fixable with meds.
I think you need to go to therapy to come to acceptance with your life and the fact that your husband is going to die from some related issue to his disease. Whether he goes or not is his choice.
You know what else meds will introduce to his life? Side effects so I can’t honestly blame him if he is trying to hang on to what he has and not make anything worse.
I can tell you that it is crazy bad to become a professional patient. I hate this part of my life the most. I am so sick of Dr appointments. I don’t blame him for not wanting to add more meds and more appointments.
I wonder if you know much about parkinson’s because it does come across a bit that you might be in a fair amount of denial (which is normal so don’t beat yourself up about that).
I wish you the best, good luck
It could be a combination of both, including medication.
I understand you are sad, frustrated and lonely. This is overwhelming for you.
Depression is hard enough.
"Begging" nor 'I want him to fight harder..." won't help with a person depressed or worse. It will 'just' continually drain you in all ways and you'll feel worse.
While I understand your desire and intention, find professionals in the field (Parkinson) to support / guide you in how to manage.
You NEED to keep yourself together. Often being present and listening is not only all you can do, it is doing a lot. Understand where he is in himself and 'be' with him there, not where you want / wish him to be.
Gena / Touch Matters
"...I want him to fight harder..."
You must resist projecting your expectations of how he is dealing with his disease upon him. I'd be depressed, too, so I agree to get him in for an assessment and maybe meds. Yes, he's had 6 years to come to grips with it but there is no real hope for his condition. Plus it sometimes comes with its own type of dementia so this may also be in play.
I wish you success in helping him and also to make self-care a priority. May you gain peace in your heart on this journey.
My brother has Parkinson's and bipolar disease, so depression gets complicated.
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