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What have been your biggest challenges as a caregiver?
• Taking charge of everything – cooking, cleaning, organizing, making all decisions, big and small, and learning not to expect her input on any of it. Worrying about our future, making financial decisions, and trying to figure out where we should live, etc., took up a lot of my energy. I have a lot of sympathy for single moms of two-year-olds now. Caring for Rhonda with Alzheimer’s is like being a 70-year-old who adopts a child. It’s a staggeringly bleak contrast to the retirement life we had pictured together.
• Getting and keeping good home caregivers. Although I admit to being a bit of a perfectionist, I really don’t think I expected too much from them. But it was hard to find people who were well-trained and reliable. I am lucky, I had long-term care insurance as well as other resources to be able to afford one-on-one care for Rhonda.
• Living with relentless grief and melancholy. There is no attenuation of the grief over time; it comes in waves as I witness the continuing loss of a previously vibrant spirit. I am losing my soulmate to this disease.
• Dealing with Rhonda’s behavioral changes. Although she never got mean, her naturally sweet disposition became unfiltered and annoyingly super-sweet. She would go up to anyone, whether she knew them or not, and gush to the point that it made people uncomfortable. Although I knew that she was just being herself - spreading her own brand of sunshine - it was inappropriate and often embarrassing.
• The constant effort required to surf over the top of each of these waves, trying to take the advice of others to stay active, nurture old friendships, ask for help when you need it, develop new relationships, participate in support groups, and/or seek professional counseling.
• Grieving the absence of her presence every day. I really miss her. She kept me grounded and I miss that. Neither of us could cook very well. We ruined a lot of meals together as we stood cooking in the kitchen with a beer or glass of wine and just chatted endlessly about our day, our kids, our past, our hopes and dreams. Then we would just pour ketchup on the dinner and eat with another glass of wine.
What resources did you find particularly helpful?
• MemoryCare. There was very little support in the rural county where we lived prior to moving to Asheville. When searching for additional support and treatment options, I luckily stumbled onto MemoryCare. Our neurologist approved the move from his practice to MemoryCare; he seemed to prefer concentrating his time on more treatable and rewarding neurological disorders as opposed to Alzheimer’s, which had few if any optimistic treatment options. Lucky for me, MemoryCare’s caregiver support programs were an added bonus.
• MountainCare’s adult day program. I was lucky, Rhonda went willingly most of the time. She was always very social and enjoyed being the “greeter” as others were dropped off.
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