How Bill Cohen became a caregiver
16 years ago, I never could have imagined that I’d be starting a caregiving journey with my late mother, Sheila.
Sheila Cohen Springer was a master printmaker specializing in the intaglio technique, an early Mac adopter and user in her 60s, beloved wife, sister, aunt, and my mother. Sheila was a widely recognized artist and respected teacher, and was the owner and operator of the Imprimery Graphics Workshop, in Biloxi, MS, where she lived almost 30 years.
If you had told me I’d experience this journey, I would have said “no way”:
- My mother, in her early 70s, would show signs of dementia. Something was different and disturbingly “not right” about her.
- She wasn’t taking care of the house, or herself.
- She wasn’t keeping up with the finances and her tax records were sitting in piles…barely touched.
- She seemed confused and paranoid.
- She was stressed trying to care for her second husband, who was on hospice care with EMT’s regularly coming to the house.
- And, she was socially isolated a few miles inland in Biloxi’s Back Bay.
Did we notice something was wrong? Certainly.
Did we think it might be some form of dementia? Probably.
Did we discuss it among ourselves? Absolutely.
Did we all agree on what to do…and did mom go along? Not exactly.
But, did we think it was Alzheimer’s? We didn’t know what was progressing in her brain until Hurricane Katrina’s devastating storm surge destroyed their home on August 29, 2005. The trauma of losing everything she owned and cherished, exacerbated, and accelerated her decline.
So back to my incredible story:
- Mom would have her health and ability to create beautiful art stolen by Alzheimer’s
- She’d be with other East Coast family for about 2 years. I became a long-distance caregiver while I held a full-time government job, making several cross-country trips
- I’d become her caregiver, durable power of attorney, trustee, and health representative, not just her elder son
- I’d start attending a dementia caregivers support group
- I’d start making plans to move her into a Raleigh Hills care community
- I’d move her here to Oregon where she was in assisted living for a year then memory care for 4 years
- She passed away after a 10-year journey at 83 in 2013.
- I became the facilitator of that same support group I started attending and continue to do so today 15 years later.
- I also became a volunteer to raise funds and awareness, and an advocate for research dollars, all in my mother’s honor and memory.
- I started leading another support group.
- After “retiring”, I became a Caregiving Support Consultant, providing advice guidance resources and support to family caregivers.
Unbelievable, right? But that’s what happened.
Bill Cohen took his personal loss and pain and turned into his passion and “encore career”.
So, if she wasn’t that old and no one else in the family has Alzheimer’s, why did she get such a progressive incurable disease? Mom didn’t have any (known) major health problems other than elevated cholesterol and no other family member has the disease. And, as I said, she was in her early 70s. So, why would we jump to that conclusion?
Here’s what my family and I thought since in most cases, primary care physicians have little geriatric training and have limited ability to diagnose let alone treat most forms of dementia:
- She lived in a polluted area full of toxins and chemicals, the Mississippi Gulf Coast.
- She used to smoke.
- She didn’t exercise beyond a short walk with her dog. She wouldn’t even get in a pool because kids used it.
- She was isolated a few miles from town and other people.
- She was my stepfather’s caregiver and getting stressed and worn out herself.
- And as a printmaker for many years she etched into metal plates then soaked them in an acid bath.
No, anyone of these probably wasn’t the reason why she developed her debilitating illness. There is increasing evidence that one’s environment and lifestyle or behavior choices are major factors in raising our risk of developing dementia. In combination, by not getting the benefits of cardiovascular activity, by eating a lot of fried, polluted food, by her prolonged exposure to metals and chemicals, and with her stress from caregiving, they tipped the scales against her. And then seeing her home for almost 30 years swept away by Hurricane Katrina caused so much trauma her disease accelerated after that loss.
As I like to remind people:
Gut ?? Health = Heart ?? Health = Brain ?? Health
By taking better care of our own health as well as our person living with dementia we are able to at least delay the onset or slow the progression.
So that’s my story and why I help family caregivers. Most of you probably feel like I did when the first signs or diagnosis became apparent. I became exhausted and overwhelmed and felt alone. I had no idea what resources were available, who to talk to, or how long the disease would take. I understand how you feel. And remember we are all doing the best we can.
Besides being my late mom’s caregiver for 10 years, I have been a caregiver support group leader for 7 years, a speaker, an Alzheimer’s Association and HOPE Dementia Support Groups volunteer, and a Certified Senior Advisor (CSA)®.
I have completed multiple caregiving and aging courses through the Alzheimer’s Association, Teepa Snow and other training, and the Society for Certified Senior Advisors™? and earned business degrees from Boston and Portland State Universities. I have lived in the Portland, Oregon area for over 35 years, and lives with my wife of 40 years, Lori, in Tualatin.
Thanks for listening. ??
Please Join Bill Cohen’s Facebook Support Group:
For more information or support, for individuals or groups, please see: