For those who care for someone with Parkinson's disease
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By flowers12 On 2016.08.09 23:51
I don't know what to do anymore. My hubby depends on me for everything. I'm in constant pain from getting him in and out of bed and helping him in and out of chairs. It seems like everything I buy to help him and me, is a big waste of money. He won't use the lift chair, he won't use the transport chair or the power seat lift. I tell him I'm hurting myself and am in constant pain but he doesn't seem to understand it. He tells me I only think about myself when I tell him I can't keep this lifting up. We've tried the leg lifters and the rope with handles tied to the end of the bed but he can't pull himself up. I've been looking at a bed that works like a lift chair but at $4800 I'm afraid that too will be unused. I'm at the end of my rope and just don't know what I'm going to do.
Another thing that's driving me crazy is the darn television. He always wants to change the channel but doesn't know what he wants to watch. He expects me to stand there forever asking him if he wants to watch this or that. He says he can't work the remote himself. I would like to throw the television out the door because it causes so much frustration.
He can't seem to do everything he needs to do when he gets up at night. He wants to pee so I get him up and ask if he needs to brush his teeth or anything else and he says no so I put him back in bed and then 5 minutes later he says the slime in his mouth is bad and wants to get up again. Then 5 minutes after getting back in bed he says he wants to get up and watch TV in the living room. If I try to keep him in bed and watch TV he gets all upset and angry.
I know there is no solution to my frustrations. I just needed to get it out.

By ljharper62 On 2016.08.10 14:33
Hello Marilyn,
First let me give you a virtual hug. This is the hardest thing, isn't it?

Is your husband a vet by any chance? If he is then the VA might pay towards having someone come in to help you. I explained to my husband that I can't do everything by myself and the best way I can help him is to make sure that he gets the best of care, whether it is from me or if I bring someone in to help. Maybe even getting help for a couple of hours to get him up and groomed and giving you a couple of hours to care for yourself will help.

By lurkingforacure On 2016.08.10 21:14
I am so sorry you are having such a hard time. I don't know your situation, but it sounds like you have to get some help. I have hurt my hand already trying to help my husband and can see how the more you help, the more you get hurt. At some point, you just cannot keep injuring yourself. There was someone on here years ago who I think had to have back surgery from all the lifting and moving she was doing.

I hope you can get some help soon. Please keep us posted.

By flowers12 On 2016.08.11 13:34
ljharper62 and lurkingforacure thank you for your response. Yes, my husband is a Vet. I'm going to call today about any services we may be eligible for. I've been putting off getting help because...... I'm not comfortable with a stranger coming in, I'm worried about the cost long term. I still don't know how having someone for a few hours can solve my nighttime struggle with getting him in and out of bed several times a night. It seems hopeless.

By VioletV On 2016.08.11 17:18
One thing I've learned is that getting my husband used to accepting help from others was a crucial step. It was very difficult to expose his weakness to outsiders. But consider this: if you choose a helper caregiver now, then you have a choice about the kind of help you get. If you wait until you are injured then you will have to take whatever you get.

He has to find out that you can say no to him when you risk your own health and safety. Not easy, but in my experience crucial. I don't believe that we owe it our beloved husbands to destroy ourselves in their service.


By bksquared On 2016.08.11 18:00
I understand the frustration of providing resources to your husband and he fails to use them or tells you they don't work. We moved the bed closer to the wall and placed a grab bar there and in the corner. He pulls on the bar to stand and if needed I can push. Works right now so husband can get up on his own. Might not please an interior decorator, but it was necessary. I also created a "pee station" right next to the grab bars. The pee station is a walker with a tray top. On it are two paint trim cups. Once he is standing he can use these items as urinals during the night. No walking to a bathroom. There is also a larger drink container for his first of the morning pee kept near by the tray. Since he is extremely unstable, stiff, and uncoordinated in the morning this eliminates walking to the bathroom as well. Each morning, the cups and container need to be emptied and washed. The floor is damp-mopped for drips. At first he refused to use it, but a bit of tough love, leaving him in wet Depends made him wiser. Now he wouldn't do it any other way. To get him to accept many changes, I must repeatedly ask him - if I am not here to help you what would you do. SO - he knows he must keep me well and healthy. PD might rob him of dignity and make him vulnerable (feel he is weak) but if he won't let us be a team against PD he will be helpless; that is not what he wants to be.

By Maddie52 On 2016.08.11 20:13
I know exactly what you are going through. My husband has had parkinson's for 22 yrs and is 68 years old. He is virtually immobile and has significant dementia. I am 63. We are now on hospice but he could be on hospice for a very long time. The thought of have strangers in your home is unsettling at best. I had some help prior to his hip fracture in December but when he came home I realized that I had to have much more help. I have 2 caregivers now and even though it isn't perfect I don't know how I did it before I had them. One lives with us and part of his salary is free rent. I am fortunate to have a finished basement with bedroom, living and bathroom. I too am depleting my savings paying for 2 caregivers however I could not survive without them. I truly know how difficult this is for you and I hated the thought of a stranger living in my house with me. Just be careful and do your research on the person. Things are still very difficult but I wouldn't be able to survive without help.

By VioletV On 2016.08.11 20:20
Thanks for your comment. This thing about having a caregiver in the house is difficult. We are just now looking at changing our rotating group of agency-based caregivers for a (nearly) full time, or a live-in companion. (My husband hates the word caregiver, and I don't care what the person is called).

Do you have wisdom to share about having a live-in person? How did you find him? What cautions do you suggest?


By Maddie52 On 2016.08.12 16:43
Hi Violet,
One caregiver who is female has been with us for approx. 2 1/2 years. She comes in on Monday and Thursday from 10AM to 5PM She also comes for 4 hours on Wednesday. I met her through some mutual friends when she was helping with one of the friends' father. She is paid in cash and I don't 1099 her or anything. She is not a CNA but she is great taking care of my husband. The other person is male and I found him through He is a CNA and is my age. He is a little odd but he is taking good care of my husband. I checked his references and took a leap of faith. He is honest and since April there have been no real problems with him. He works Friday, Saturday, Sunday and Tuesday and lives in our basement. At this point I am paying him as a 1099 contractor but if he is still here next year I will pay him as an employee. My accountant said that I should pay him as an employee, get workers comp etc. even has a service that you can use to pay the person as an employee. Its very affordable and they do all the payroll work.
I know I am stating the obvious here but it is hard to NEVER be alone in your own home. There is always someone here. I could never afford to have this much help if I went through and agency so I understand I am fortunate right now.
I hope that everyone here can find good reliable and affordable help.
Take Care and Hugs,

By flowers12 On 2016.08.15 11:34
Thank you all for your comments. Today I have a list of people to call regarding finding someone to help me. My hubby does not use the bathroom unassisted and I'm wondering if your helpers are also doing that part. Sometimes he needs help eating.

I'm trying to think about how much time I want to start out with. If I use an agency then I guess they have minimum times. Well, I'll find out about all this in the next few days. This still won't eliminate my problem at night getting him out and back in the bed every few hours.

By Trusting On 2016.08.27 17:55
I just saw this post and I'm so sorry you are having to go through this. I began the process of looking for help through the VA around the first of June. They say they can send me some part time help but I don't know if communication got crossed or not but they decided to send me a volunteer that will sit with my husband while I run errands or just take some time away. I told them my husband doesn't need help with bathing or toileting yet so maybe they misunderstood my request. Be sure you talk to the VA Social Worker b/c that is who is sending the help. I'm still struggling with a stranger taking care of my husband while I'm gone. However, my nerves were so bad a few weeks ago I had to reach out for help. My own physician prescribed something to help settle me and told me he understood the pressure we are under as caregivers. Don't be afraid to talk you your own physician so he/she can make sure you are being cared for. Blessings to you.

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