For those who care for someone with Parkinson's disease
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By Trusting On 2016.04.04 21:33
I remember when several years ago I joined this group. I was cheerful, upbeat and positive that this would be a breeze, this journey with PD.
Now, my husband with PD has progressed and I see myself changing too. I still try to stay upbeat but it is getting harder. I've never been one to sit around much and still have my hobbies, home, etc. but I do feel a little trapped. I'm getting ready to fill out paperwork to get help when I need it. I just dread to fill it out b/c I'm admitting I can't do it all anymore.
Even though I have friends, family, computer and more I sometimes feel alone. My husband can barely hold a conversation now b/c his words just won't come. It is so hard to watch him. I know how lonely he is as we aren't able to go out with friends as much and they don't come around as much. Truthfully if people do come to visit it just wears him out.
His dementia is getting worse, he gets mixed up in the middle of the night, is having more incontinence and more. So many of you are there or have been there. I am thankful I can call on God for strength for each day. Thank you friends for being here for me too.

By lurkingforacure On 2016.04.05 12:32
I know what you mean. When we were first diagnosed, I was reading everything I could get my hands on to learn about PD. One of the PD Centers of Excellence I called actually told me that "it's a great time to have PD" (ha, I couldn't believe she said that)...apparently because it's so well-funded and tons of research is being done. I was told a cure was less than five years away. That was ten years ago.

So many treatments, research projects, and therapies sound so promising, only to peter out and leave us all foundering around, hopes dashed again. Just last week I read an article about neurons grown on a tiny scaffold that were implanted into a mouse brain, with remarkable results. I got so excited, thinking, yes, finally, here is something to help....until I read the lead researcher's comment: "....this will not be available for 10-20 years." Ugh:(

I was particularly saddened to read of Andy Grove's passing from PD a few weeks ago. Here was an amazing man, with amazing resources, focused on a cure or at least better treatment for PD, and even he was not able to make that happen in time to save his own life.

All we can do is take things one day at a time, and make the best we can of each one. I've really stepped up my gardening work so that my husband has a nice patio and backyard full of beautiful flowers and butterflies, bees, birds, and critters to sit out in and just enjoy. He does love sitting out there and I hope the beauty of it all helps him forget his pain and misery, if only for a little while.

By makrivah On 2016.04.05 21:02
Lurking, amen. Well said.

By carman96 On 2016.04.06 00:36
Yes, so difficult as time goes by. We too were told that a cure would be found within 10 years. That was 12 years ago, and now they say it is still 15 -20 years away.
Too late for my husband. Sad.
Lurking, glad your husband can enjoy the outdoors. I too have worked hard to make a pleasant yard, but he seems to get antsy after a few minutes and wants to go back in and watch tv, his main pastime.

By flowers12 On 2016.04.06 22:53
This is my first posting on this site. My hubby was diagnosed in 2008. We are both retired. He has become less and less able to take care of himself. I am so discouraged and depressed. I try so hard to take care of him myself. I've injured my shoulder lifting him in and out of bed, helping him to sit and get up from chairs. I know every caretaker is in the same position. I don't have help except for our one son who try's his best but the real help I need is at night. My hubby wants to get up to pee every couple of hours and then around 1 or 2 am he wants to get up and go to the living room and watch TV. We have a TV in the bedroom but he wants up out of bed and doesn't like the lift chair we have in the bedroom. He also has mild dementia and sometimes is very confused so I have to lay on the couch to make sure he's going to be okay. I wonder if there are people to hire who can come for a night shift a couple of nights a week to allow me to get some sleep. I just wonder how it would work though and where they would be until they are needed. I just don't know what to do anymore.

By LOHENGR1N On 2016.04.06 23:59
If you are in New England there is a site The have a registry of P.C.A.'s looking for work. You can view applications and contact information for home care help. Maybe the consul on aging or even that site can tell you where to go to become enrolled for help. If the primary care doctor states He needs nighttime help then whichever program enrolls him will give the okay for overnight hours. You do the hiring but they will help hire if you ask. Good luck and welcome to the forum.

By VioletV On 2016.04.07 19:58
When I had my cancer surgery last May I could not lift my husband at all for at least a month -- until my stitches healed and i was more or less back on my feet.

We had nightly home health care. It wasn't cheap, I must admit. But having someone who dozed in our living room and could respond to a call from me or my husband (we used a baby monitor) meant that even if I woke when he did I did not have to get up each time.

It's such an impossible situation being a PD caregiver. Just rotten.

Good luck and hope this comment helps.

By umajane On 2016.04.07 23:53
If you have a senior support at your local senior center you may find some caregivers. Also there are many agencies if you look "Visiting Angels". It is so important to get your sleep..

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