Newbie here. I just need to know I'm not alone and that there's some kind of hope going forward.
Joining this hoping to find some relief to not feeling so alone navigating thru my husband Parkinson's.He was diagnosed in 2004, he's 60 now. I'm 59, will be 60 in October. We've been together since 2007 and married for 3 years. I knew he had Parkinson's and made myself and him a promise that I would be there. I'm still here nearly 20 yrs later and I'm just now realizing how tired I am.In the beginning, he was positive, an inspiration even! But this last year or so it's become horrible. It's stealing our lives. I don't want to burden him with my own thoughts and fears so I really hope I can use this as an outlet. Covid did a real number on him as far as being isolated. He was so active prior to that. Now we spend most of our days at home. I work from home 12hrs a day. It's a desk job but still can be stressful. He's been soooo moody lately and very angry outbursts. I know he's frustrated as this advances and I feel so helpless at times. Then other times I feel like no matter what I say or do he gets an attitude...which is not like him AT ALL. Our 'big outing' each week is going to the grocery store or meat market. Which usually ticks him off because people are so unaware of his condition. He doesn't use a walker or cane (although he should) so when people brush by him, it messes with his balance. They get impatient because he moves slower. I feel like I should put a sign over his head sometimes "Stay back 10 feet, slow moving and unsteady" lol. I know this post is so random and kinda all over the place but I have so much to get off my chest just to start off! I have no family that lives even close to me. He has a son that lives about 30 min away but he's limited on helping due to his job. I don't even know what I need at this point. I just know I'm tired. Working, cleaning, taking care of the finances, doing all the driving (he hasn't been able to drive for about 7 years), taking care of 2 dogs, cooking, etc. I love him, but sometimes I just need a break from him. I don't mean that to sound cold, I just need a reset sometimes and I don't have time in the day to get that. Between us, sometimes I hang out in the bathroom playing games on my phone just to get 5 min. That's my 'me time'...that sounds so pathetic as I type it. There are no support groups in my area and he wouldn't go to any either. He doesn't believe in antidepressants or any type of drugs/medication except for what he takes for the Parkinson's. He's very hard headed. I guess I just need to know I'm not alone and that there's some kind of hope going forward.
Thanks for listening(reading? lol)Hope everyone has a good evening!
5 Answers
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He/she could be a big help in accessing resources that would make dealing with things easier.
Your life and health (both physical and mental) are just as important as his. Working a 12-hour day every day, caregiving, and being one-hundred percent responsible for not only yourself but your husband and the home is not a situation that is sustainable for long. You will pay the price with your own health. Caregiver burnout is real and it sounds like you have it. Please take a minute and think about what your husband's life would be if you were taken out of the picture. There would have to be hired help coming into the house. Or he'd have to move to an assisted living community. Maybe family would take him in for a while, but there would still need to be outside hired homecare and he'd have to get used to it.
I was a homecare worker for 25 years before going into the business of it. So I'm going to tell you what I've told countless family caregivers in situations like yours.
~Caregiving only works when it's done on the caregiver's terms. Not the care recipient's.
This is truth right here ^^^^. You have to decide what your life together is going to look like and what your home is going to be like. If your husband is getting so difficult and ornery that medication is the only way living with him can be manageable, he goes on medication or the two of you cannot live together anymore. This is how it has to be.
You need a life outside of your home and it sounds like you don't have one not even at work because you work from home. 59 years old is way too young to be living like an elderly person. You need time and recreation away from your husband. Every married couple even when no one is sick, needs a social life separate from their spouse. You do too. Good luck.
I think refusing meds for mood would be a deal breaker for me. Caregiving happens on the caregiver's terms or burnout is imminent... as you are on your way to finding out. Are you on the "look out" for signs of Lewy Body dementia? This commonly accompanies Parkinsons, but not always. So can hallucinations. I think you can script out what he needs to know about *your* condition (exhaustion, loneliness, burnout) and then tell him that unless he agrees to meds you can't go on... and let him fill in what that may mean. But, never make a threat you aren't willing and able to carry out. Keep in mind things will just get worse and that if you are concerned about his reaction to being told to take meds, think into the future of living with him in a worse daily mental and physical condition. You are the priority! For your own sake, and his. If his caregiving makes you ill, what happens to him? Also, what is your plan for someone to take care of *you* in the future?
His son gets to decide if he wants to participate in his Dad's care. I would not rely on it being there, so now you must plan accordingly.
If you have the financial means, consider hiring a companion aid for him to entertain him, run errands, help with his needs like hygiene, etc. He won't like it at first but when he sees it's just how things are going to be, he will relent. And if he doesn't well there should be consequences for that choice or pathway so that you can preserve yourself.
Put on your own oxygen mask first. Decide what kind of help *you* need and then implement it regardless of whether he's onboard or likes it. The rest of your life depends upon you being resolute in saving yourself going forward.
Blessings to you for hanging in there with him. May you receive great wisdom and peace in your heart as you choose sustainable solutions.
One of our "regular" members just lost her husband recently from Parkinson's and she's not been back here since. Some return here (like myself) after their loved one dies to help others and some do not, but we are all here to help in whatever ways we can.
Even if it's just to listen while you complain and moan as we all have to get things off our chest one way or another.
And I wouldn't worry about a support group for your husband but would definitely look into one for yourself, one for caregivers as there is something very powerful meeting in person with other men and women going through similar things as you.
This forum is great, but I'm telling you from personal experience that nothing can top an in person support group.
Your husband is very fortunate to have you by his side walking this very difficult road with him, but PLEASE don't forget that you matter too in this equation and that you MUST take care of yourself along the way, or you'll be absolutely no good to him down the road.
We look forward to hearing more from you. God bless you.