For those who care for someone with Parkinson's disease
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By plcpainter On 2012.01.28 21:07
My hubby with PD is nearly 80 and in stage 4. I just turned 60...that was a tough birthday but it made me really assess where my life is right now. Essentially, my life is being a caregiver to my beloved husband. That's it. Some days he knows me and sometimes he doesn't. We have been hiring additional caregivers for the past 4 months. They take 3 nights a week plus one 4 hours shift on Tuesday mornings. A couple of days ago my husband and I had a good, coherent conversation about his future. It was a real blessing to have his bright mind "there". It took a while for him to get his thoughts out and articulated but the more I waited the more he had to say.
We agreed that this disease wasn't going away. We agreed that it was wearing me down. I've been getting snippy and withdrawn. We agreed that we wanted to relate to each other as lovers and friends NOT as caregiver and patient. We agreed that grabbing one's destiny and making decisions rather than waiting for decisions to be foisted upon one's self was the preferable way to go.
So we've gone and looked at a several assisted living facilities near our home. We are trying to see this as having 2 households that we will flex back and forth between. That is the positive spin we are putting on this. Mostly is feels really sad and scary.
I feel so guilty and depressed that I've failed to keep him in our home. But I'm tired and I don't like the person I've become around him. I want to be his wife. I know I will still be his primary advocate (ALWAYS!!) but am anticipating a team of caregivers doing the nuts & bolts chores that he needs.
I've never lived alone and that is a daunting prospect. I'm frightened for him and I'm scared for me. Sure wish I knew if this is the right decision to be making or if we should just try to keep going like we've been doing. Thanks for letting me write this down.

By lurkingforacure On 2012.01.29 05:03
Thank you for sharing that. It makes me realize that we all should be thinking about decisions that loom ahead and being proactive about what is best before things are forced upon us. While we still can, too.

You have not failed your husband in any way. You are a wonderful wife to stay by his side. There is no "good" solution in any of this: it boils down to trying to determine the best option out of a bunch of crappy options.

By Michele On 2012.01.30 08:38
You are making a courageous decision - both of you. Quality of life is the most important thing. If you can become friends and lovers once more, that is the prize. As you said, you will have a team of caregivers to take care of the nuts and bolts and you can be the loving support for your sweetheart. When the fear creeps in, remember that . You will have the best of each other. You have my heart with you in this big step.

By parkinit On 2012.02.07 23:10
plc - How beautiful for you that your husband was thinking of you and how this affects you. It sounds as though you both have come up with a workable solution.

I, too, feel that I become quite agitated and snippy and don't like the person I become, however, it took some talking to convince my spouse that we needed help at night and a few times during the month during the day. I continue to feel that my spouse may resent that we have others in our home and from time to time mentions how he needs to "get me back downstairs" when we have a caregiver overnight so I can get some much needed rest. He doesn't seem to get it that I would still wake up every time he called for the caregiver and having someone else help him get up and down and night would still cause me to have great unrest if I slept by his side.

Again, how beautiful that your spouse understands.

By housemouse On 2012.02.19 17:14
I am in a similar situation, in that my beloved is now really needing the help that assisted living can give him. I am not strong enough to help him, and have arthritis in my hands, hips, and back.

But, we can't afford it, and it is stretching our budget to have a caregiver come in daily. Sometimes I am so tired, discouraged, and depressed.

He has autonomic nervous system problems which are just terrible to endure. I need some encouragement, friends, to maintain my resolve.

He isn't eating and drinking enough, and constipation is a constant problem.

This awful disease!

By moonswife On 2012.02.20 21:03
a couple of suggestions. Do you have a nursing program in a school or community college nearby? Sometimes you can get these students for minimum wage and they can get credit for some practical training too as long as it is all guided or directed duties.
Also, "power pudding" works awfully well for constipation. If he is unintested in the offerings, and you make something like banana pudding with high protein drinks (that come canned) they are appealing. We have pureed fruit and made our own popsicles.

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