It happens to all of us. We misplace our keys or lose our train of thought or forget the right word for something. What if we lived it every day, every moment? Not just forgetting what we know but the very essence of who we are and what makes us who we are? Or, possibly even worse, what would it be like to see someone we love whose memory and identity slowly but steadily begin to unravel, even as their health and bodily faculties fade and their days are shortened?
November is National Alzheimer’s Disease Awareness month, slated by Ronald Reagan in 1983. So this is the month we remember those who forget ….as well as those who will never forget the one they’re slowly losing.
Currently it is estimated that 5.4 million people in the U.S. suffer from Alzheimer’s. And there are over 15 million Alzheimer’s caregivers. Since this disease affects so many, we spoke to Vicki Kaufman, a former caregiver and current blogger, about the disease. Vicki’s blog offers specialized tips for caregivers and has viewership from 28 different countries including Israel, Russia and Saudi Arabia. She asserts that there are several ways to cope and be effective as a caregiver.
One of the most fundamental points about Alzheimer’s is that the earlier you spot it the better. While it has no cure, early diagnosis is critical in starting treatment that slows down the progression of the disease. Furthermore, Kaufman adds, spotting it early before symptoms worsen gives caregivers more time to plan expenses, as well as discuss their loved one’s wishes regarding final care.
Perhaps somewhat counter intuitively, it is essential to take care of yourself first as a caregiver. Many times, in burning the candle at both ends, there is nothing left to offer someone else in the way of patience, attention and long term care.
Arranging for respite care can be a key component of planning for how to cope with the disease and its ensuing implications. Respite care can give caregivers an opportunity to relax and recharge, to take care of errands and to connect with other people. Several options are available, including in-home care services and adult day centers. Financial aid in the form of scholarships, sliding scale fees and government programs is available.
The most important thing to remember while acting as a caregiver is that it is a marathon, not a sprint. Since it is a progressive disease, this means a long goodbye and many changes. As sufferers lose more of their faculties and abilities, it is easy for them to get frustrated. The best thing to do is to empower them to do as much as possible for themselves, showing them how to accomplish elementary tasks, step by step. Above all, advises Kaufman, even if they say something wrong, do not argue with them.
It can be especially difficult for children and teens to watch their loved one’s health and mental capacities slowly disintegrate. However, they can be resilient, understanding and caring when they have sufficient information. It’s paramount to give them age-appropriate information about the disease and what to expect. Let children ask all the questions they want. It is especially critical to prepare them for what they will encounter in a visit to an assisted-living facility. Encourage them to have a fun but simple activity plan to do with their parent or grandparent.
Having a strong support network as a caregiver can be a lifesaver in coping with the day-to-day challenges the disease brings. Having close friends and family with whom to talk things through is essential. Building a strong network of support also makes it easier to share the burden of care, since periods of rest are critical for the primary caregiver.
It’s also crucial to find ways to stay connected with the loved one suffering with the disease. Vicki advises caregivers and family to treasure every day and enjoy the simple things. One of her most precious memories is of sitting on the porch, drinking cocoa with her ailing mother and enjoying music they both loved.
Above all, take one day at a time, and let the future take care of itself. Find ways to show them you love them. Alzheimer’s takes much, but it does not take the heart or the humanity away from those we love.
For those acting as a caregiver to their loved one, Vicki Kaufman’s blog offers a wealth of information on how to prepare and cope with the implications of the disease. Her memoir about her mother, Elegy for Mom, will be available via her website www.caregiverfamilies.com on November 7. You can also contact her via email at [email protected]. She will give two talks on Alzheimer’s in November. The first will be at the Main Library on Andrews Avenue on November 14 at 11 a.m. The second will be on November 16 at 7:30 p.m. at St. Andrews Catholic Church.
Keisha McDonnough is a research analyst and writer. A Jamaican native and South Florida resident, she is passionate about poetry and vow writing. Check out her website at everaftervows.com.