I’m very pleased to present the following guest post by author and health care consultant, Anne Hays Egan.
by Anne Hays Egan
Caring for a parent or other loved one with Alzheimer’s disease can be one of the most difficult, exhausting, joyful, and rewarding things you do in life. It was for my brothers and me.
Mama had been charming, headstrong, and brilliant. She taught piano for decades, and loved music. When we realized that she was having memory problems, she was still active teaching piano, going out to church and seeing friends. But we realized she was having trouble when she told us about some “nice young men” who put a new roof on the house which was much too expensive. When she told us that “they were so nice they even took me to the bank,” we knew that she was at risk.
Over the years, we helped her to navigate the difficulties of living with Alzheimer’s. It started with updating her will and her financial records. Each of us visited her more often, staying longer. We worked with her to help her manage her living situation, facing many challenges.
It meant taking the keys to the car (in her case, we removed a spark plug). Over time, her world shrank, and with it, her ability to communicate. We increased the number of hours of care, and then we moved her to live with one of us, with caregiving support. We looked for activities that would engage her, and increasingly focused on the little things, like watching the birds.
We developed a checklist that we’ve shared with others, which you might find helpful.
Finances – work to understand their financial situation, and then protect it. Know what benefits may be available to them. www.benefitscheckup.org by the National Council on Aging is a great resource. Ensure that a will, living will, and Health Care Power of Attorney are in place.
Caregiving – find out about your loved one’s preferences, whether for caregiving in the home, nursing home care, or moving in with a member of the family. See what different family members can do to help.
Community Resources – learn about the community resources, such as the local Senior Center, caregiving programs, respite care, meals and transportation, nursing, caregiving, and other medical resources.
Self-Care – develop a plan for caring for yourself early on, and find others who can provide support. Friends who have gone through a similar situation are invaluable. And, there is a very supportive network on Facebook called Memory People, which provides excellent information and support.
Whenever possible, take time to capture some of your special moments, as these will be your memories in future years. One of the most important things we learned from our caregiving is that the person is there, and one can have many meaningful connections, even when the mind dims.
Anne Hays Egan is a health care consultant working with community health planning and evaluation, including helping communities develop plans for older adult services. She is the author of Moving Mama: Taking Care of Mother During her Final Years with Alzheimer’s.