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I need to know, please. Some days I am so completely overwhelmed by sadness that I just go into another room and cry. I hate this disease for what it is doing to him, to us, to our family.|
I went back to read past posts, but I really don't see the answer to my question. What keeps YOU going? How do you maintain YOUR health?
Thanks in advance.
Jane, you will read lots of us talk about having to "be selfish" in order to keep going. I think of it more in terms of being practical, what is needed in order to function. We have a new reality with PD in the house and things are not ever going to be what we thought they might be. We have to accept that and deal with it as best as we can. Realize your limits, we all have them, and try to make peace with them. I've had to let a lot of things go that I never thought I could and it hasn't killed me. Dealing with PD is awful, but we're alive.|
Aside from trying to make time for yourself, which anyone needs whether they are a caregiver or not (but I would argue caregivers need much more), I would add this:
I have to keep going for our kids. I also cry every day, and often. But my husband and I agreed long ago to give them as good a childhood as possible under our circumstances, and that's what I'm doing. Little things sadden me the most, like finding nail clippings left on the dresser because he was too tired to gather them and throw them away. He was fastidiously clean and tidy before PD. Or finding a used enema in the bathroom trash can which he never told me he needed, because he is too embarrassed and I have to face the cold hard truth that he is now having constipation to that magnitude. Trust me, it would have to be really bad for my husband to resort to using an enema, which makes it even harder to visualize him admitting to himself that things are that bad. I hurt so much for him it's almost unbearable and I can do nothing to help alleviate his disease.
As for health, we try to eat as well as we can. Simple, and mostly organic when possible. I also exercise with my husband almost every day. Most days we walk early in the morning, on the weekends we may bike instead. It keeps him moving but is getting harder, for both of us, really. I'm so busy wearing all the hats that most days I would rather just sit in a stupor than exercise, but I go. I think he feels supported when I go and that helps with his mood as well, which helps me with mine.
The hardest thing for me so far has been the sleeping arrangements, made necessary by lack of sleep which will wreck anyone. I have not slept in our bedroom in over a year, he is up five, six, seven times a night, snores which he never used to do, etc., etc., etc., it's terrible for both of us because I can't sleep and he's trying to be quiet for me which is impossible with PD. We dont' have a spare bedroom so I sleep on one of our kid's bottom bunk beds. I'm a real cuddler and this has been very hard. But like I said, I'm alive and still have much to be thankful for.
I wanted to take yoga starting in January but there has never been time for that. I can't seem to make time, either, despite how hard I try, but I have heard that it can really help. Maybe this summer.
Also, this forum is wonderful. Come here to share, vent, draw strength, just be with those who are with you and understand. We know what you are going through and send thoughts and prayers your way.
Jane... I think it really depends on you....|
How do I cope?????
Yes I have cried...yes I have been frustrated..but in my eyes...and again this is me....I am a caregiver.....
I am not a professional...I live with it 24/7 not like a hired caregiver.....
We deal with so much with this disease....all the little things creep up on you...all the big things stress you out...all the upheaval in your house is enough to make you crazy...so I handle it by laughing at it....I pick my battles....I don't let little things get in my way....in my eyes when you let the little things...the cleanliness of the house, the keeping things where they are easier for the parkie, the everyday..no... make that every time you turn around the changes in your parkie...if you let it all get under your skin...you lost the battle.....
I laugh...he laughs....
Just last week..I decided since he was better I would try and go back to work part-time...not much just a few hours a day 4 days a week...I have a friend with a small lake side restaurant and we made and agreement if they didn't like my work ..cool...if i couldn't handle working and caregiving..cool...we would still remain friends after the 5 day holiday weekend here....well... i gave up trying to work again....after his withdrawl from requip he is still having a few issues with involuntary movement and incontinence....soooooo
besides washing my own work clothes everynight..I had extra towels, the bathroom floor, soda on the kitchen floor and bed sheets every night....the funniest I guess was the "ice cream" incident....
because i started at 6am I was up early and I slept the last 2 nights in the spare room... he suggested it knowing I was worn out....well
I always fix him a sundae and stick it in the freezer for his nightime snack...a couple scoops, ganache, strawberries maybe some cocoa crispies on top....so he took it in the bedroom as always..put it on the nightstand and went in to clean up for the night....went to get in bed..settled in to eat his ice cream... picked up the dish...and WHOOOOSSHHH...there it went...all over the bed..and I mean all over.....he didn't want to wake me sooooooo...I keep cheap rags beside the bed for drooling he grabbed a couple of those wiped up what he could, got out some floor towels threw them on the bed and went to sleep....
I got up the next morn at 5... he was up....he said.."Please, don't go in the bedroom"... I said why and he told me the story....so I didn't...and when I came home from work...I looked and well he did a good job....I couldn't help but laugh.....It was such a mess...the towels, the sheets (thank God for mattress covers)...the cover and the quilt.....so I stripped it all off separated everything and laughed....how could I get mad....it wasn't his fault....with these involuntary movements especially lately... it is nothing but comical..the fork tosses, the plates getting flung and the drinks being spilled.....
Because we have had so much over the last few years..because three times the docs said that's it....because HE has this disease, not me....I laugh....
I only have cried when I thought I was losing him...when he got so bad ...when the pain was so severe...when he couldn't sleep.....when his almost closed completely and he could hardly see....that's when I cried....
The other stuff ....I laugh...that's what I do...
You never know when a bad day will come in..You never know when a good day is gonna happen....
We have a hand signal ~~~~~~~~~~
go with the flow.....take it in stride and ride the ride....because you just never know if tomorrow will come!!!!!
Jane, isn't this the hardest and saddest situation?? Your post hit me squarely between the eyes.....If you read my post from a few days ago re: urinary incontinence, you'll see that I don't handle things very well sometimes either..|
Here are a few things I've noticed that have been helping me stay sane...and positive...and happy.
I keep in touch with friends and family..........even sometimes when I don't feel like it....I try not to discuss my husband's PD.........unless he's having a great day..then I'll share good things.
I drink a lot of water......but, not from a bottle or a regular kitchen glass. I've been using one of our pretty crystal glasses - wedding gifts from long ago....for some reason, this soothes me..
I also eat my lunch on a pretty plate........again, one of our wedding gifts.
When I take our little fluffy dog for her walks, I put on "cute" clothes....I feel better if I dress like I might be going to the gym....but, I just walk in our neighborhood. I greet any joggers, dog walkers, neighbors as we pass......I feel connected that way.
I also take those times to breathe the air, literally smell the flowers, watch and listen to the birds.....I do NOT talk on my cell phone......but, sometimes, I cry while I'm walking.
During the morning walks, I probably have a load of laundry -sheets - from the night before - in the washing machine....but I try very hard to just consider that another, normal household chore......I guess I'm getting used to it.
During very stressful days, I've been playing the radio - mainly classical music - but, anything that's soothing. It seems to help both of us.
I make myself a good breakfast....usually eating after my husband has his breakfast...he may be resting, so I'll eat my breakfast outside on the deck....again, to be able to breathe all the fresh air that I can....
If I need a good cry, I'll go upstairs to the guest room and close the door....I seem to need quite a bit of "private" space lately...
This whole situation can make me feel a bit lonely and isolated sometimes...so I try my best to plan dinners or lunches out with friends for my husband and myself.....even going to a movie helps. Or, invite people here for a meal - or just to watch a movie on tv
Good Luck.....and I sincerely hope that some of my "tricks" help you feel better.
Jane - |
This disease sucks! Yes, it does affect everyone who chooses to be involved and others will avoid you (including family members) so they don't have to personally deal with this disease and be affected by it. Sometimes I wish I could be one of those people, but I can't help but think they may regret their avoidance. Conversely, I think how lucky they are that they can just turn their back on their family members and live their happy-go-lucky lives.
However, I'm in this to the bitter end. I haven't been able to leave the house unless I have a substitute caregiver for my spouse for the past month or so. He keeps falling and I'm afraid to leave. Even when I go take a shower or try to exercise, it seems he "sneaks outside" and then falls.
I do exercise. Daily. It is my link to health and sanity. I tell my spouse to "be safe," tell him to press his medical alert button if he needs ANYTHING (and he does because it calls me first), and then I turn the music up, get lost in the rhythm, and exercise for the next 30-60 minutes. Honestly, this keeps me sane. This and family visits (my family supports me in this journey, his family is absent most of the time).