Being a caregiver is always a challenge, but there are several additional stresses involved when the loved one has Alzheimer’s Disease. Whether taking care of the person at home or providing support and advocacy at a residential facility, understanding the person’s emotional, cognitive and sensory needs can help both the caregiver and victim to enjoy their time together.
I was very lucky that as an occupational therapist I recognized the early symptoms of the disease, hired a home health aide and quickly found a safe and loving assisted living residence with a memory impairment unit. I learned early on that there was no point in ever arguing with my mother since she couldn’t reason about issues such as giving up her car keys after her license was revoked. As her confusion grew, she became easier to redirect so that I was able to remove matches, candles and trash, fill her refrigerator with prepared foods and do her laundry- despite her protestations.
It was very stressful to move my mother since she fought us every step of the way. But once she settled in, mom grew to be happier than I ever recalled. Even though the burden of day to day care was removed from my shoulders, I still considered myself a caregiver since I visited 2-3 times a week and advocated as needed, especially when she moved into a nursing home.
It is shocking to find that you can no longer have a conversation with someone who perhaps has even forgotten who you are. Caregivers may find being with their loved one easier if they have activities that they can both enjoy together such as walks, movies and luncheons. As my mom lost her communication skills we spent more and more time singing, looking at pictures and playing simple word games. I made a binder with large print song lyrics, pictures and personal stories that she could enjoy while alone. I also found that making friends in the nursing home and singing with other residents made my visits more stimulating for all involved and gave me emotional support.
I recognize that the caregivers of loved ones who are living in their homes face additional stresses including lack of sleep, free time and often loss of a spouse’s friendship. Family and/or professional support, adult day care and respite play a critical role in such a caregivers life. Lela Knox Shanks shares this experience very beautifully in her book : Your Name is Hughes Hannibal Shanks.
During the last stages of the disease caregivers may enjoy singing to or reading to the loved one. The loved one will always appreciate hugs and your voice. In this way caregivers can remain actively involved even if the victim has limited abilities to respond. I found that understanding the loved one’s needs at any stage of the disease, finding support from others in the same situation, advocating as needed and knowing that I did all I was able to help my mother not only made the care giving journey successful but provided many happy memories.
Barbara A. Smith M.S., OTR/L, author of Still Giving Kisses: A Guide to Helping and Enjoying the Alzheimers Victim You Love.