For those who care for someone with Parkinson's disease
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By justsad On 2013.05.19 07:28
I am having a hard time coping with what I feel is noncooperation on my PWP's part. I am tired of watching him eating almost an entire loaf of bread, then complaining about stomach ache. We have a fridge full of healthy food but that's what he eats.

I am tired of being woken up at 4:30 in the morning by lights turned on everywhere, cabinets being opened and closed, doors slammed, even though I, like many others, sleep in another room. Then he will go back to sleep, while I have been woken up and cannot go back to sleep, and it's almost time to get up anyway, so why bother trying to get any more sleep. Can he not at least try to be quiet so one of us can keep things together?

Why is it so hard to pick your dirty clothes off the floor? I picked up a week's worth of clothes off the floor over a two day period, I cannot keep up. I have no idea why more than one pair of socks is used each day, and I am weary of doing so much laundry because he won't put shoes on over his socks to go outside and then I have to wash another pair of socks when he gets those dirty and takes them off at 9am and gets new ones....and again at noon, and in the afternoon, ugh.

I am tired of every dish being used in one day, even my monogrammed cup that is MINE, and finding them all over the house.

Weary, also, of things being misplaced, so every chore becomes a hide-and-seek before I can even begin the job. If I had all day, every day, and nothing else to do, that would be one thing, but I don't.

I am going to implode if my PWP tells me one more thing that he "thought I ought to know", which requires that I do something (thought you ought to know that tree branch is hitting the roof....thought you ought to know there's a spill by the fridge (I guess whoever made it can't clean it up)...thought you ought to know there's rain water collected by the side of the house and mosquitoes are breeding there...I guess I have to go dump it and clean it out....and on and on and on.

My brain just cannot process any more! Does anyone else ever feel like this?

Oh, and he wants me to go all of his appointments with him, doctor, therapy, everything. He can drive himself there, but "likes my input". I'm OK going to the doctor with him, but therapy is several times a week and he could go by himself, but wants me there too. In fact, I doubt he would go if I didn't go with him. I don't do anything, I probably annoy the therapist by being there, so why do I have to go? I could SO use that time to myself.

I don't want to be around my family much these days, everyone needs so much from me. I try to go sit outside by myself for just a few minutes of peace, and they follow me. When I am working on the computer, my PWP will come sit next to me and noisily eat chips or an apple or some such thing, just sit there, when I am clearly working. Even the dog slopping water out of her bowl and the cat licking her fur pisses me off these days. I am grouchy and snappy and have no patience. How do you reset?

Please dont' tell me to go on a vacation, we can't afford it and it would not help because I know nothing would have changed while I was would all still be waiting for me when I got back, but probably worse!

By Mel On 2013.05.19 10:58 [Edit]
I could comment dido to everything you wrote especially the one where everyone tells you to make time for yourself. I know how you feel I cant afford to do anything plus my pwp cant be left alone and I have no support. His care is taking all our money. There is nothing left.

I still work and he goes to Day Care during my working hours but my job is stressful too so that isnt even a break.

My husband (pwp) only thinks of himself. It isnt the parkinson's that frustrates me it is the congnitive issues. He accuses me of taking his things and stealing his money and that I am mean.

I have had a horrible weekend and knowing I am not the only one having to go through this is my only respit.

Please take comfort in that hearing your frustration helped me. I hope knowing
others feel the same way helps you. It sounds crazy but thanks for pouring your heart out.

By jcoff012 On 2013.05.19 11:49
And, both of you know that there are others here who feel your pain and the sorrow of your losing your freedom and patience at the same time. I wish I had a perfect answer for you. You both sound worn out...

This may sound like a dumb idea, but it worked for me when I spent hours worrying over our son...I went out and bought headphones and listened to quiet music while sitting in the hospital...they blocked out most noise, but I could still see if he needed anything...the quiet music really helped calm me down...I even went to sleep several times...Not sure it works for everyone, but it is an inexpensive way to relax a bit...and you get to pick the music you like...or, I guess, you could get a book on tape and do the in the room, but in your own "world."

I know you don't want to hear this, but you DO need to carve "me" time into your days...just shut him out...seriously...Do what it takes for selfish...but, you know, it ISN'T are a special person in your own right, and you need to nurture YOU...

I hope you both get some much needed respite...but, please make it a habit...take care of YOU...the laundry can wait...YOUR health cannot. Jane

By Mel On 2013.05.19 15:17 [Edit]
Thanks Jane, It just helps to have someone one to vent to who understands.
I have lost alot of friends because of this disease. And the couple I have left have their own health issues and I dont want to burden them. My good friend and neighbor told me a few years back how her friends slowly didn't call anymore
because her health got in the way. I now understand how she felt.

By phoenix On 2013.05.19 22:54
I so understand. Today after supper the dog jumped on my hubby. She has no idea why he won't play with her or pat her any more. Anyway, he yelled at me to get her off. I was washing dishes and went to help as soon as I put the dish down. He said that I could have shown up a little sooner. I (sorry, sarcastic) asked if he'd like me to just stand beside him 24/7. He said that would be good. I had to let go a tirade about how doing all the cooking, cleaning, yard work, finances, groceries, etc. kind of got in the way of that. I feel bad, because I know he just doesn't get it or understand what I do for him.
So, yes, you are not alone.
We have lost friends also. One couple we were friends with came over the other day. She told me they don't visit much anymore because she feels like crying every time she sees my hubby. So do I but I don't.
And if my hubby has 7 pairs of shorts and he peed in 6 of them today, then, sorry Jane but the laundry can't wait. I really hate this disease.

By carman96 On 2013.05.20 07:19
Yes unfortunately it sounds all too familiar. We had a yard sale this weekend. Luckily we have someone helping us. But he pooped in his pants three times and once on the bed! This is very unusual but he just couldn't get to the bathroom in time. Talk about dirty laundry!!!
I have told my hubby several times this week that he has to listen to me and cooperate or I just can't do it anymore. I even threatened divorce once to try to get him to listen to me!
I know he can't help having this disease but that doesn't make it any easier does it??
Here's hoping that today is a better day for all of us! Hang in there everyone!

By jcoff012 On 2013.05.20 10:51
Phoenix, I am sorry...I think my response about the laundry was not entirely acceptable...I fully understand that the laundry is a huge problem. We do what we have to do...

I just meant that taking a break from it seems to be more important for YOUR mental health, but, then again, so is living well and in a healthy environment. You are right, when it becomes that bad, who am I to say let it sit? I apologize. I wish you rest, though, and hope you are able to find it daily in some simple way. Much love to you and to all who are faced with the day to day problems that never seem to end. Jane

By phoenix On 2013.05.21 21:33
Sorry, Jane I was just venting after a bad day. Didn't mean to jump on you, and I know you're not here yet and hopefully wont be for a long time:)

By Betsey Clarke On 2013.05.22 21:58
I understand how difficult it is to deal with everything, it is true that you will have to do everything, after awhile. My PWP had the misfortune of falling due to his Parkinsons twice in eight months, and broke a hip (upper leg) on each side. That pretty much made it impossible to leave his wheelchair, altho he still tries. In a way, it is easier when he can't try to walk, or do things, I found myself not worrying as much. Although I have to do everything now, I have learned to live with things not being done correctly, or on time... one example, is that when he came home from being in a skilled nursing facility for six months, I decided not to cook.. at all. I just bought things from the deli, or precooked meals. That helped, as it was overwhelming having him home at first, especially after the home health nurses left. I have pretty much learned caregiving skills from others, now am comfortable with almost everything I have to do. Referring to laundry and peeing and pooping in pants, it is almost easier to have them in diapers! My husband also has a supra pubic catheter, now, and that is easier yet.

By parkinit On 2013.05.23 00:12
Dang, I see my spouse in so many of these comments, but then, why wouldn't I? The socks . . yes. The clothes everywhere . . . yes. The comments of "If you're looking for something to do . . . " The ideas of how to fill my time since I may not appear busy 24/7!! Yes!

I keep telling myself God will not give me more than I can handle.

I think my spouse is having to come to terms with there being nothing left to try. No more meds will work. The doctor even said, "Exercise at this point will do you just as much good as any of your pills." So, we all cope the best we can and deal with this ugliness of it all as best we can. And we keep on keeping on day in and day out. We breathe and we pray and we hope it will ease, but it doesn't.

By mydear On 2013.05.23 00:29 [Edit]
These comments are ones I can relate to so well. My work is a saving grace as I love what I do. At home it seems the problems and challenges require careful analysis to get to the bottom of 'why' in order to figure out how to adjust to the circumstances with fewer consequences. My husband comes across as a know-it-all and is very convincing until he begins problem-solving and then cognitive deficits become apparent. So getting told what to do and how how to do things puts me over the top after a while. What would really help is grateful expression of appreciation and cooperation.

By Betsey Clarke On 2013.05.23 22:22
Yes, I agree mydear ! I think that interaction between husband and wife, when one has changed so much, cognitively and emotionally.. it seems like that was the biggest challenge for me. We were remodeling our store/home before my husband was diagnosed (we were retired and looking forward to doing this, and rv camping and flyfishing), and gradually nothing he suggested, or implemented made any sense. Talk about trying to being patient and tactful! That was difficult. Sometimes it helps to have a doctor, therapist or other third party come in and communicate with the PWP about these difficulties. I have learned to talk differently to him, really clearly about my problems and needs. Fortunately he still tells me how much he appreciates me and loves me, and that makes up for ALOT ! Good luck with your husband, you have a sympathetic ear here.

By phoenix On 2013.05.23 23:03
Mydear, I hear you. It would be so much easier if hubby appreciated what I do for him, but I know that with the cognitive decline he just can't understand that looking after him is my life right now. So hard to deal with. hang in there!

By tinag0131 On 2013.06.30 11:49
I so needed to hear all the post..I needed someone to talk too..My husband is exactly as you all described....from when we get up ..all day he works on papers which are not important..he constantly blames me for lost or misplaced items....I am usually pretty easygoing..but I am about to loose it...he won't take help to make things's driving me crazy....I am a nurse so am used to dealing with diffficult patients ..but not 24 hrs. A day...

By parkinit On 2013.07.02 00:39
tinag -

Yes, my spouse used to always blame me for losing things: "Someone has been messing with papers on my desk!"

He doesn't do this so much anymore. This is part of the memory loss, though. So remember, he really thinks someone is messing with his stuff because he doesn't remember doing it. I finally understood this with my guy. He wouldn't believe me even when I told him it was him! There is no easy solution for this one because you can't take the blame all the time to appease them, however, they are still suspicious of you even though you know it was probably them.

It's a tough one when they are messing with their own minds and don't even know it.

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