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My husband has Parkinson’s and I am finding life really difficulty. He has changed a great deal and obviously is less capable in doing things. What I find exasperating is his slowness and attitude. He doesn’t sleep well and my sleep has and is interrupted every night to the point where I am so brain and body tired that I cannot think straight. I am so exhausted. They sleep is so important for one’s health but I am not getting enough and feel as though I am on the brink of ?????. There is a… read more

December 24, 2023
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A MyParkinsonsTeam Member

Separate rooms helped a lot because between the two of us getting up at different times, no one got any sleep! Also, I am the one who snores really badly. We have had separate rooms for over 5 years, it's not that big a deal. I am pretty hard of hearing, so when my husband did shout out for help for the first time a few days ago (he was diagnosed 10 years ago), I did not hear him at first. I was horrified that I did not ever anticipate this. I went onto Amazon and bought an intercom system that has a pleasant door bell sound and receiver that plugs into my wall and is LOUD with flashing lights when activated. It also has 3 call buttons you can put anywhere for the PD person and luckily my husband can still press the button. I don't know what we will do when he can't press the button. The kit also has a rechargeable receiver the caregiver can take a short distance, so that will be helpful in the future for laundry room or short walk.
That was a specific answer. Generally, I just accepted it all and try to work around it at every turn. It is hard and getting harder. I don't know what we will do when he can't get himself out of bed. Caregivers for hire are getting to be more and more in short supply. This sounds crazy, but I know in Japan they are creating health care robots to lift people in nursing homes. I am seriously going to look into it, and maybe I can start a co-op in my county and we can share a robot who will lift the PD person. Anyway, I just try my best to get a minute, an hour, or on rare occasions an entire day to myself. I get frustrated when the requests are endless, and when that happens I just whisper to myself: "Parkinsons" so I don't take out my frustrations on him. He can't help it. I am thankful we have made it this far and to be honest, in our case, having to be in such intimate terms with bodily functioning has actually strengthened our relationship. But we've been together for 42 years, so I don't know what else to say. I also had a handicapped sister, and I worked with struggling students for many years, so I have skills that others may not have. Getting sleep is essential as noted above and do whatever you can to make that happen. Close second for caregivers is time to yourself and if your loved one is not too far gone, express this need and take concrete steps together to make sure that the caregiver gets this time. I am also part of several support groups online for caregivers which are a big help and last but not least my PD husband and I both go to music therapy which fun, social and helpful for PD and me too. Music therapy is absolutely amazing. Best wishes everyone!

December 25, 2023
A MyParkinsonsTeam Member

I’m in the same boat. Truly exhausting especially without sleep. I’m now sleeping in a separate room and put a phone next to his bed for help but normally he just yells and I can hear him. Sometimes I hear him yell go check on him and he’s sound asleep snoring. What’s up with that? Need more sleep

December 24, 2023
A MyParkinsonsTeam Member

A support group is very helpful if you have one in your area. As for sleeping, YOU have got to get your rest. I asked doc to give my husband something to help him sleep so I could sleep. Bring it up to your husband's doctor.
Take care of yourself. Get a sitter if you must so you can leave and enjoy your self. Go exercise, or walk, or go to Bible study.or nap! Caregiver is draining and you need something that will fill your "tank" back up.

December 24, 2023
A MyParkinsonsTeam Member

Save yourself. It does not get better. We’ve been married 45 yrs and the last 3-4 have been the worst as Parkinson’s has progressed with hubby. I’ve prioritized myself more. I ended up in the hospital twice, insomniac, obese, and almost on anti depressants. I had to dig myself out of the hole. But it’s not easy as he tries to drag me down. So now I’m doing rock steady boxing with him, chair yoga, tai chi and Quijong. All on Zoom because he’s housebound. These activities have helped and kept me in touch with the world. Plus I lean on a sister and we have a tremendous support group.

December 24, 2023
A MyParkinsonsTeam Member

try sleeping in different rooms. Keep a baby monitor camera and screen as well as a bed alarm for him so if he gets up or needs something, you can be aware.

December 24, 2023

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Gloucester Point, VA