For those who care for someone with Parkinson's disease
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Topic Spousal caretaking Go to previous topic Go to next topic Go to higher level

By hubb On 2010.01.02 22:38
After a hordenous week where nothing has gone right, and caretaking has really been a 24/7 proposition, we had a glimmer today of the old spouse - for the past several days, everything has been wrong, he has been so cantankerous and grouchy and self absorbed, it's been almost impossible to live with and absolutely impossible to get even the smallest household chores caught up. I finally had time to read the forum and can recognize our situation in so many of the postings. I just wonder if caretaking a spouse isn't more difficult than a parent maybe because of the life you have had together - and now you can't even be close at night or put your arms around each other due to tremors, dyskensias/dystonia in the legs (no 2 drs. agree what it is or if its RLS) or vivid dreams where arms flail and you're liable to get hit if you're close enough. And if you move to another bedroom, then you're on edge, listening to see if everything is okay. Things like that really get to you because there's no one to turn to like your own spouse and you know each other better than anyone else in the world. It's so hard to take sometimes, but then today (after his sleeping about 14 hours last night) he was not quite as rigid, no big tremors and synamet took care of small ones, and no complaining, and he actually asked how I was doing , but then as evening approached, sundowner syndrome hit and all he wanted to do was nap and sleep and required help getting out of chairs and into bed, so back into that world that only PD patients occupy. I'm so thankful for the wisdom of the writers who have gone thru or are going thru this with their are of such solace in times of need, and to Al and his wisdom and good humor and to remind us of what our PD spouses are going thru too - I learn so much more from the forum than from any of the drs. I get more help from all of you than anything the drs. can tell us - because, you really do understand and have so many good tips to pass on. So thanks to all of you for helping me climb out of this abyss - something that only another caretaker, whether it's for parents or spouse, understand.

By karolinakitty On 2010.01.03 06:16
I agree with you hubb ..... I've learned so much here from these great folks....
Being a caregiver is not new to me but a spousal caregiver does have that different air to it.

With the RLS .... i know i have read in countless places that PD patients don't have tremors at night when sleeping .... BUT I have seen your post and several others about the night flailing of arms, mine too has this, doc said restless limb, maybe there are tremors in sleep and they just don't classify them as "tremors".

By arlenecram On 2010.01.03 15:14
I agree--thank God for this forum!

By Mary On 2010.01.04 10:03
Caregiving is so exhausting but I do not think we fully understand what our loved ones with Parkinson's Disease must also be feeling. Dad needed help with absolutely everything in the end stages. Can you imagine how frustrated, sad, etc., that must feel. He couldn't wipe his own butt! I know how I felt as a caregiver but can't imagine how Dad must have felt having the disease and knowing he'd never get better, only worse. Hugs and blessings, Mary

By shirley On 2010.01.04 19:12
I agree with you hubb that the caregiving for a spouse is totally different than any other. In reference to the leg movements, etc., especially at night, my husband has the very same thing. During his drs. visit today we addressed this issue. He thinks that it is an acting out of dreams because the parkinson's allows the patient to move during REM sleep. Normally the body is not able to act out during dreams. He was taking clonazepam at night but after a hip/pelvis fracture and ensuing hospital stay he was taken off that. We are now restarting that med to see if that will help at night. Also he will be taking an additional 150mg stalevo at 10pm to see if that will help. And one more thing, he was taking seroquel to help w/delirium and we are cutting back from 100mg seroquel to 50mg to eventually 12.5mg seroquel. The seroquel is a dopamine blocker so while it helps w/paranoia, it prevents the stalevo from being absorbed.

Hope this helps, although your husband may be on different meds. This is a dreadful disease and I agree with Mary. No matter how horrible it gets for me (and it has been pretty horrible during Nov. and Dec.) it has to be even worse for my husband.

May God grant you grace to deal with everything on your plate.

By hubb On 2010.01.04 23:27
Shirley - don't you agree that sometimes if you present the dr. with a new problem, their solution is to give you another chemical, and then another chemical to take care of the side effects of the first chemical, and round and round you go. We are fortunate in that our dr. at least gives us the option - he tells us what he has used and has seen that it worked in some people - always being careful to say that it doesn't always work on everyone, so most of the time we turn down the additional meds. My husband is almost 80 years old, so sometimes you don't know if the symptoms are due to PD or to age or to both, so we decided that we'd try to keep his medical routine as simple as possible and keep him as comfortable as possible (which is impossible part of the time) for as long as we can. We worry about when synamet won't be effective, but just push that thought to be the back of our minds. We tried activan, exelon, comtan, parlodel all at one time or another and none of them was effective, so with dr's permission discontinued them & saw no evidence of his being any better or worse. It just breaks your heart to see them decline - sometimes more rapidly than other - and to know what he has been in the past. He was a Navy carrier pilot, flying many missions over Viet Nam among other places, has been a fisherman in Alaska, a logger and driving heavy equipment when he could no longer fly, so he's cheated death a few times and I've always thought he was so strong and brave and then to see this darned old PD practically wipe him out just tears me up.He's still fighting a good fight, but I can see some of the self resolve disappearing especially now that he's beginning to take tumbles every now & then - no serious falls, but have to be watchful all the time. I think he feels his body is betraying him. Don't know why, but reading other peoples' problems and solutions makes you feel like you're not alone in this battle . And there are some very wise caretakers out there who are willing to share their experiences with us.

By LOHENGR1N On 2010.01.05 00:02
hubb, I'll leave the advice about the caregiving to those more qualified. Unfortunately the main arsenal of treatment for this disease is chemical other than the brain surgery. That's all they've got to address the symptoms and deal with side effects, so yes it seems and is what they offer. Writing about your husband your love is in your every word. He sounds like a great Man. As you say He's seen and done a lot. His bravery and strength is still shining through in this fight hubb. If you can please try to view this as your husband the battle worn and tested veteran that he is, using the life lessons learned to pick and choose the fights he can still fight. Not losing his resolve, but using his wisdom and strength where and when he can. hubb when you tear up, try to remember and do so with pride that the man you married is still brave enough to face this terrible disease with all the strength and resolve he has. Also hubb, you match his bravery, strength and resolve in your caregiving. Your posts show you are caring, courageous Person wanting, no demanding the best for your husband. He is one lucky man to have you. This disease will knock you down and kick you whenever it can. Stay strong. Take care, best of luck and hang in there. Sincerely Al.

By dkleinert On 2010.01.05 01:08
Thanks for all of this info. My husband flails during sleep, too. Didn't know he was able to move better when he was in REM sleep. That is good and bad. We can't sleep together anymore because of it. I sleep in another room with the door open to listen. Am alert to any sound, but at least he does not worry he will hurt me in his sleep. Yes - I am always hesitant to bring up any new issue with the dr because it is usually met with another many already. Hubb thanks for sound like such a dear. Stay with us, keep writing whatever is on your heart. We care and want to hear from you.

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