Local support group member June is a practicing nurse. And she’s been a hospice volunteer for many years. Her father recently passed away; his clinical diagnosis was Lewy body dementia. His main symptoms were parkinsonism. Her mother was the primary caregiver. The mother was able to keep the father at home. Daughter June provided care and some oversight. Her father died in February 2023. He was on hospice since early January 2023. June recently shared some “considerations in caregiving” which apply to caregivers of those with Parkinson’s and all the atypical parkinsonism disorders.
Category Archives: Caregiving – General
2023 Brain Support Network MSA Support Group Meeting Dates
Since 2019, we have convened occasional support group meetings for those with multiple system atrophy (MSA). Pre-pandemic, these were held at a restaurant in San Mateo. Since the covid-19 pandemic, these meetings are virtual only.2023 Brain Support Network PSP/CBD Support Group Meeting Dates
Since 2019, we have convened occasional support group meetings for those with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). Pre-pandemic, these were held at a restaurant in San Mateo. Since the covid-19 pandemic, these meetings are virtual only.2023 Brain Support Network Caregiver-only Support Group Meeting Dates
Since 2004 (19 years!), we have convened support group meetings for caregivers of those with Lewy body dementia (LBD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and atypical parkinsonism. Here’s information about our 2023 caregiver-only support group meetings.Local support group member Lyn’s thoughts on what he did well as a caregiver
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