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Topic Newbie/Bedtime Difficulties Go to previous topic Go to next topic Go to higher level

By Cordelia1 On 2018.09.13 23:18
Hi. I care for my 81 year old dad who has PD. He was diagnosed 10 years ago but the disease has progressed since being hospitalized 2 years ago for pneumonia, bowel obstruction, and renal failure. Like many of your loved ones, he is now taking Sinemet 7x a day and is taking citalopram, quetiapine, and klonopin for REM sleep disorder. He has been having terrible wear-off and bedtime is hard. His anxiety, paranoia, and freezing are difficult to deal with and he yells at me if I leave the room for 5 minutes. We will see his neuro soon, but this is driving me nuts. Has anyone else dealt with this problem? Did you find anything that helped? We do a routine and I reassure him/coach him constantly. He picks stressful days or times when I work a 13 hour day to have major meltdowns.

Thanks for this forum. You are all amazing caregivers.

By lurkingforacure On 2018.09.14 11:33
Welcome to our refuge, and how lucky your dad is to have you taking care of him. It seems like our loved one always has issues when it is the busiest, most stressful time for us. Maybe they pick up on our stress and are subconsciously reacting to it, maybe they are jealous of the time demands of our work, kids (non-PD responsibilities), or maybe they are unaware of anything except that they need X RIGHT NOW and you are the only one around so it falls on you. It sounds like you could really use a break and some help, and I would suggest you look into getting someone to come in to help you out one or two days a week and/or finding a facility that has a day program you can take your father to.

In the meantime, perhaps try letting your dad know that you can't help him right this minute (make sure it isn't an emergency of course) but that you will get to him as soon as you can. Like many here, I have found that my husband is able to do much more than I thought he could when he realizes I can't help him immediately. Things like getting out of his lift chair (do I burn the dinner or run go help him, when all he has to do is push the button to get lifted and reach his walker and often does not even use the lift feature to get up!) I leave late to take kids to school when he announces, just as we are walking out the door, that he has an "important announcement we need to discuss right away"....I have learned to tell him that I have to leave now but can sit down with him to discuss that when I return.

There are some posts here about helping too much, because when we do that, we aren't doing much except making our PWP more dependent. It's a fine line, and fluctuates day to day and even hour to hour, depending on how meds are working. It is so very hard to watch your loved one struggle to do something that you could do for him in less than a minute, but I have had so many therapists tell me it is better for them. You might want to ask your dad's neuro about this, to get an idea of what he can safely do, even if it takes him awhile. And then back off and let him do it.

I hope this is helpful, and am sure others will chime in with more tips.

By jcoff012 On 2018.09.14 18:47
My PWP is my husband. He is very high functioning compared to many here, so I cannot offer you much help. However, we, too, have PD issues that are similar.

I think that all PWP have anger issues that ebb and flow, mostly as you said, when least expected. My husband goes "off" at odd times about the dumbest, most insignificant things. It is the one thing I am having difficulty handling. I usually retreat to another room, because so many times the uproar is over and he is back to normal quickly, and acts as if the hurtful or odd thing he has said was something *I* misunderstood and *he* didn't say. (Right....)....

Like Lurking said, maybe our PWP senses that we are stressed and feeds off it, and not even realizes it is happening. The urgency passes and is forgotten for him/her long before it is for us.

I agree that it sounds as if you need a break from caregiving. Do you have anyone who can help out? Is there a senior center nearby?

I also agree that helping too much too quickly has made caregiving difficult for many here. Sad, but true. When I first arrived here, I was given that very advice, and it has kept me sane many times! There are times when I want to do something to speed things up, but I don't. There are also times when walking away to stay sane has been a godsend...

I wish you the best and remember to keep time for yourself, too. You need "me" time, as well as constantly being a caregiver.

By Cordelia1 On 2018.09.14 22:45
Thank you both so much! I do have home aides for when I am at work and they give me 4 hours a week to run errands, very occasionally meet a friend, etc. The adult day service near us closed. I think you are right in that my PWP knows when I am under pressure and it feeds his anxiety. When he is in the off time, everything is urgent and important to him. When I tell him I need to use the bathroom and I'll be right back, he sometimes forgets and yells for me anyway. Maybe I should get another baby monitor so he can hear me upstairs? I also retreat to the porch or another room just to escape briefly. He can do a lot on his own with his walker, lift chair and (tmi) bidet toilet seat. He feels better when he moves and does more for himself. He does the dinner dishes most nights, (but I still need to rinse them later). I am finding it hard to be as kind as I would like to be these days. I miss him, although there are times when he is himself. We got out today and made up after having an argument this morning, so today was a better day. I also tried having him eat less protein and that seemed to help. Thanks for the suggestions and support!

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