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Marin Voice: Activism and community help to cope with Alzheimer’s

Marin Voice: Activism and community help to cope with Alzheimer’sI hope I’m better at parenting the baby growing in my womb than I have been at parenting my parents.

Last October my husband and I moved back to my childhood home to care for both of my parents living with Alzheimer’s disease. My sweet mother has been on home hospice for all of that time — her journey began noticeably in 2012 — while my dad is still high-functioning through his decline that was only formally diagnosed slightly over a year ago.

This is an unimaginably challenging journey, and though I’ve made my share of rookie mistakes, I seem to have learned a bit along the way.

I’ve learned that even though social stigma still keeps Alzheimer’s and related dementias in the shadows, every time I bring it up, someone has a story. Of their parent or grandparent or auntie or neighbor. But in spite of how ubiquitous this disease is, most people understand little about the importance of early detection, what dementia is — and is not — or what their options are. Some of this ignorance comes from a breakdown in communication with medical professionals, but a lot of it is willful ignorance. We are culturally so terrified of this slow disease, many choose not to know.

And so I’ve learned to share my story with willing and unsuspecting audiences alike. For many years, I could not talk about this without crying, and now you can’t keep me quiet once I know someone has a connection to Alzheimer’s. I talk about it with my neighbor when I see her walking her dog. I gave my card to the sales rep at REI who was helping me find a simple water bottle for my dad. I post so much about it on social media that distant connections frequently send me private messages that they too are caring for someone — often early in the diagnostic process — and are overwhelmed and scared and paralyzed with anxiety of what’s in store.

I’ve learned to ask for help because no one is coming to my family’s rescue. I depend so heavily on an ecosystem of support, I cannot imagine the care partners who are trying to do this alone. I depend on incredibly compassionate paid caregivers while I’m at work. I depend on Whistlestop to take my dad to his day program. I depend on Senior Access to engage my dad socially four days a week by taking him to museums, performances and dignified lunches. I depend on Hospice by the Bay to send nurses, home health aides, social workers and volunteers to the house to tend to my mother’s various needs. I depend on my neighbors and siblings to fill in those hours when I need more help.

I’ve learned that even though social stigma still keeps Alzheimer’s and related dementias in the shadows, every time I bring it up, someone has a story. Of their parent or grandparent or auntie or neighbor. But in spite of how ubiquitous this disease is, most people understand little about the importance of early detection, what dementia is — and is not — or what their options are. Some of this ignorance comes from a breakdown in communication with medical professionals, but a lot of it is willful ignorance. We are culturally so terrified of this slow disease, many choose not to know.

And so I’ve learned to share my story with willing and unsuspecting audiences alike. For many years, I could not talk about this without crying, and now you can’t keep me quiet once I know someone has a connection to Alzheimer’s. I talk about it with my neighbor when I see her walking her dog. I gave my card to the sales rep at REI who was helping me find a simple water bottle for my dad. I post so much about it on social media that distant connections frequently send me private messages that they too are caring for someone — often early in the diagnostic process — and are overwhelmed and scared and paralyzed with anxiety of what’s in store.

I’ve learned to ask for help because no one is coming to my family’s rescue. I depend so heavily on an ecosystem of support, I cannot imagine the care partners who are trying to do this alone. I depend on incredibly compassionate paid caregivers while I’m at work. I depend on Whistlestop to take my dad to his day program. I depend on Senior Access to engage my dad socially four days a week by taking him to museums, performances and dignified lunches. I depend on Hospice by the Bay to send nurses, home health aides, social workers and volunteers to the house to tend to my mother’s various needs. I depend on my neighbors and siblings to fill in those hours when I need more help.

 

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