Local support group member Lyn Preuit’s dear wife Wendy died about two years ago, after coping with Parkinson’s Disease (PD) for twenty years. We’ve stayed in touch. Recently, he attended a local PD caregiver-only support group meeting to share his thoughts about what he did well and what he could have done better. As you can imagine, his remarks were well-received. Though his wife had Parkinson’s disease dementia (aka, Lewy body dementia), his advice applies to caregivers of all diseases. (By the way, Wendy’s diagnosis was confirmed through brain donation, which Brain Support Network helped arrange.)
Robin
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Keep coming to the group. You pick up more information than you realize listening to another caregiver’s problems and solutions. Even more important, you realize that you are not alone in your caregiving situation. The emotional benefit is incredible when you share your outrageous problems with others who are fighting similar battles.
Find something to do that is just for you. You need it to sustain yourself over the long haul. Give it priority for a meaningful part of each day. Make it mandatory. You need to have something you can feel good about for yourself when the disease mercilessly grinds away the things you enjoy with your Parkinson’s person. Sacrificing yourself is not a long-term solution.
Live in denial. The emphasis is on live. Do things together. Obviously, some things are no longer feasible. We gave up skiing. But we camped, kayaked, and walked long trails. We traveled to Europe, Mexico, Canada, and the western states. We lived winters on a beach in Baja. We lived.
Exercise together with your Parkinson’s person. I helped my wife as we took long walks together. It gave her a sense of accomplishment, gave her invaluable exercise, and it made both of us feel better to do something active together. Nearly always, I was amazed how far she could walk with just a little help balancing. Even near the end, a walk around the block provided hard to find satisfaction.
Get help from a caregiver as soon as you can and before you think you can accept it. You need, and you deserve, some respite. There are some wonderful people out there to help you. We had a hard time accepting the idea of a stranger coming into our home and it took several tries before we found the right person. But looking back, I couldn’t have done it without our help. Certainly, any particular day I could have managed. But over the long haul, the very, very long haul, having help made a huge difference.
Accept that you will make mistakes. Accept that you will do things that you will regret. Understand that doing your best is more than can be expected of anyone in this situation.
At the end, Mission Hospice was wonderful.
Grief. Despite knowing her death was coming, my grief was more severe and lasting than I could have imagined. Withdrawal from caregiving has been disconcerting. I think it is reasonable to say that I have PTSD from caregiving. I am glad that I survived the battle and I am comfortable that I did the best I could.
Which begs the question: What could I have done better?
I wish I had been better able to ask her friends to visit, to have organized that effort, and to have explained that her dementia was really just very slow thinking and that her memory was largely intact. Dementia scares people away and people see it as an excuse for not visiting.
I wish I had better understood how frequently doctors over-prescribe medicine and that I had always been more vigilant for side effects. Mirapex was a popular drug early in our journey, but its unexpected side effects were horrific and withdrawal was brutal, made possible, strangely, by cannabis cookies. Even near the end, I was ambushed by a sedative that had the contrary effect of making her so agitated that one day I came to the support group meeting with a bleeding scratch on my forehead.
Sadly, over the many years of struggle against Parkinson’s Disease, there were some times that I wish I hadn’t yelled at her. But I still don’t know what else I could have done.
Lyn Preuit 08/25/22
The most recent issue of “Expert Review of Neurotherapeutics” includes a review article on the treatment of hallucinations in Parkinson’s disease. Of course this applies to Lewy body dementia as well. 
