For those who care for someone with Parkinson's disease
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By Ibepar2 On 2014.11.10 01:29
I just want to get in the car and go. I have been the sole caregiver for 12 years. My husband is pretty much in his powerchair. The house looks like destruction derby was held in it. He has almost stopped speaking and we have had to stop going out because he has too much trouble eating. When he finishes he and the floor are covered with food. The. incontinence has taken its toll on the furniture bed and clothes. Daily laundry has become common place. He has wandered off in his chair even though he not suppose to. What other evils is this disease going to do to him? How do we as caregivers get through it? How does my husband survive the indignity this terrible disease is causing?

It is Late Sunday evening and he is in bed and I just needed to rant. Sorry but I am new to this forum. None of this may be permitted. If so I am sorry for being inappropriate. I just don't know what do and have no one to tell.

By JulieB On 2014.11.10 07:43
Ibepar2 -- you are describing what so many caregivers feel when things progress past the point of "manageability" with Parkinson's. Nothing you said was inappropriate at all. You were honest to share what this disease is doing to you too, and we all know that PD profoundly affects caregivers. Your burden is heavy. I hope you are able to find a trusted friend to talk to, maybe even a counselor. And a support group would be good if you are able to leave your PWP with someone once in a while. I did all of those, but I will admit that while they're helpful, it's still a daunting journey even with others' help and encouragement. Because ultimately, no one else is doing what you are doing, day after day, night after night, and it can feel like two people are being swallowed up by PD. If your husband is a veteran, there is some help. If he isn't, others might want to chime in here and tell you where they've gotten some assistance. Keep coming back here -- you can rant all you like -- we've done it too and understand. I offer you my virtual hug today, and my real prayers. Julie xoxo

By Trusting On 2014.11.10 09:42
We understand! Did you read my recent VENT? After writing my feelings I feel so much better. You are not alone.
I am just now learning that I am going to have to ask for help. I can't do it by myself and trust me, I have always been a woman who can do everything and anything. This is new for me too.
I did find something the other day for our bathroom that has helped so much with the odors. No matter how much I cleaned, bleached, etc. there was an odor in our/his bathroom. I picked up a couple of those 'old fashioned' deodorizers that clip over the toilet bowl (67 cents at Wal-Mart). I have been amazed at the nice smell they are giving off. Such a small thing but has made me feel better.
Don't be afraid to come here to Vent. If you read my posts from a few years ago I was pretty cheerful most of the time. I try to remain that way, but it is hard as this disease progresses. We are losing our mates one day at a time. Blessings and hugs to you.

By Marilyn-NJ On 2014.11.11 16:24
Ibepar2..Your posting was a carbon copy of my life, too. By Sunday night, you can just peel me off the floor. I'm tired, overwhelmed by it all and so sad that our lives are so impaired. I am in awe of my peers who just by living and enjoying are so very fortunate. I hope just venting helped to deflate your stress - even just a little.

By Ibepar2 On 2014.11.11 20:03
I am sorry that your life has turned into that state. Thank you for sharing that with me. As you know one of the terrible things about caregivers is our inability to share our feelings with anyone who understands what we are going through and not judge us for our feelings. It really does help to know there are individuals feeling as I do. Now if we could find a solution that would not hurt the one we love.

By umajane On 2014.11.12 00:27
Believe me you are not is difficult but in order to make it we have to take care of ourselves. I truly believe that...small breaks, some help etc etc....
There are times it seems unbearable and then we pick up the pieces and keep going....some good days, many not so good.

By carman96 On 2014.11.12 09:17
Sometimes I want to run away too. All the responsibilities plus watching our loved ones go downhill is sometimes more than we think we can take.
But in the end do the best we can for our PWP and ourselves.
You are not alone.

By Marilyn-NJ On 2014.11.12 11:58
These postings are so very helpful. I work full-time, I have help at home when I'm not there, I try to take care of myself, I have wonderful little grandkids. I have colleagues and friends who listen to me - and yes, I do vent to them - and that's sometimes hard because their lives are so foreign to mine. And through it all - it's such an unbearable life most days. I hate that others have to go through this journey along with me but am so grateful to have this venue for support.

By lilflower On 2014.11.12 18:41
I also used to be cheery. As time goes by and the Pd progresses so does the depression , his and mine. I am alone in my caregiving duties no support physically or emotionally. I'm exhausted but can't sleep, we actually decided to move closer to one of his boys which I hope is the right decision. As it is now I have been trying to down size and get the house ready to put on the market. He attempts to help but is very limited in what he can do. So I try to do as much as I can while he sleeps. It has been 6 months since we decided to move and things are moving very slowly, I had a hip replacement in July which delayed things . He had some melanoma removed. I am just grateful that our Doctors and hospitals are very understanding and allow him to stay with me in the hospital so I can continue his care while the hospital cared for me. Thank goodness it was only 3 days and then home therapy. He is cancer free right now but were told that the Pd drugs are causing the melanoma's and now he has to be checked every three months. Haven't been on in awhile sorry for going on and on, just needed someone to chat with that understands.

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