Bill’s mom was a master intaglio printmaker, an early Mac adopter in her 60s, a savvy investor, a wonderful cook, a beloved wife and sister, mentor to many young women and a feminist (or at least a sympathizer). She was a widely-recognized artist, respected teacher and the owner of the Intaglio Graphics Workshop in Biloxi, MS.
However, in the early 2000s, Sheila began showing disturbing symptoms while caring for her husband. Although only in her early 70s, her various talents and skills eroded and her actions and expressions became disturbing and concerning. Then in 2005 Katrina, hit and she lost her home. “The trauma of seeing her home of almost 30 years gone exacerbated and accelerated her onset of dementia.”
“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 what to do…and did mom go along? Not exactly.”
“Did we think it was Alzheimer’s? Why would we? This was my first period of denial because Mom was ‘too young’, didn’t have any major health problems other than cholesterol and no other family member had the disease. However, she lived in a polluted area, used to smoke, barely exercised and was socially isolated in Biloxi’s Back Bay. With her work, she etched into metal plates and put them in an acid bath for over 30 years in her printmaking.”
At the time, Bill and his wife were living in Oregon while his mom was on the East Coast living with family. “As for me, while she lived on the East Coast, I was working full time and had to make several cross-country trips. I was her long-distance caregiver, power of attorney and health representative, not just her elder son. For my own sake, I started attending a dementia caregivers support group.”
“Your support may come from many places, so don’t be afraid to ask! Have a list of possible ways they can help, such as picking up dry cleaning, spending a little time with your person living with dementia so you can have respite time or have someone mow the lawn.”
“When I was caring for my mother with Alzheimer’s in the mid-2000s, 1 in 5 caregivers were men. Now, it’s closer to 1 in 3, and more and more men are stepping into that role. Men tend to see caregiving more like a job, a project, a series of tasks. And they seldom seek out help or attend support groups. However, I am seeing this change in recent years.”
“Drawing from my experience, I see common pitfalls, particularly with men. Thanks to my mother, I have a strong nurturing side and it was never a question that I would step into the role of caring for her as she did for me as a child. While caring for her, I learned the importance of self-care, seeking a supportive ear and being unafraid to ask for help. In my work, I encourage men to do the same and be unafraid to show vulnerability.”
“As a full-time employee, husband, friend and son, those 10 years were very challenging. I had to balance my time and energy and most aspects of my life suffered. Taking the time for yourself, including your own healthcare, sleep, nutrition and stress reduction are critical. Most of us have heard the term ‘self-care isn’t selfish.’ I add: it is vital!”
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
Deb is available as a caregiver consultant. She will answer the question: “Where do I start?” and find the resources to alleviate your stress. If you would like to invest a half hour to learn how she can help you, please contact her at: Free 30 minute consulting call
Deb is the author of “A Relationship Contract for Dementia Caregivers.” Available in print and ebook, it explains how important it is to learn how your person wants to live their live out and how you, the caregiver is the most important person in this relationship, giving you tips and tricks for this journey. Click here to learn more about A Relationship Contract for Dementia Caregivers