En español | My Dad lived with Alzheimer’s disease for 15 years. He passed on three months ago at the age of 94. As I look back at the choices I made for him over the years as his primary caregiver, there are some things I would do differently now. But there are also many things I’m glad I did because I believe they made a real difference in Dad’s abilities, comfort and quality of life—and also made it easier for us to care for him. These are things I would absolutely do again:
1. Getting early diagnosis and treatment … and sticking with it: Dad’s doctor evaluated his memory concerns and started him on a medication to help with the symptoms very early in the progression of the disease. The generic drug did not work for him, so he always took the brand-name version. Twice, when we stopped the medication, his abilities went downhill fast, so we started it back up. But he never regained all the abilities he had lost. Medication may not be as effective for everyone who suffers from Alzheimer’s or other forms of dementia, but for Dad it was crucial. I advocated strongly with his doctors and hospice to ensure he continued to take it until he died.
2. Gradually increasing support: Throughout the years he lived with Alzheimer’s, I broke down Dad’s daily activities into steps and focused on his strengths rather than deficits. Whether managing finances, organizing and taking medications, cooking, shopping, doing housework and laundry, dressing, bathing, exercising or toileting, we encouraged him to do anything he was able to do, no matter how small or insignificant it might seem. While it sometimes took more effort and time for us, this graduated approach maximized his independence at every stage of the disease, boosting his self-esteem and helping him function at a higher level.
3. Prioritizing physical activity: Research indicates that exercise helps our brains, so I helped Dad stay active. We always noticed an uptick in his verbal skills, cognitive functions and sense of humor when he exercised. He took his beloved service dog, Mr. Jackson, for numerous walks every day (sometimes forgetting he had already done so, but Mr. Jackson didn’t mind). As a music therapist, I knew to pair music, movement and rhythm to stimulate memories and cognition. As we walked we sang, calculated math problems, told stories, shared memories and appreciated sunsets. Dad took arthritis water classes, and later I hired the instructor to come to our pool to work with him. Depending on the weather, he also rode an exercise bike and walked or did exercises in the house with a physical therapist, another caregiver or me.
4. Using complementary treatments and therapies: There is currently no cure for Alzheimer’s, so we were open to trying new treatments. Along with Western medicine, we used many alternative approaches, including:
- Massage and Reiki bodywork—Dad received a weekly massage for more than 20 years and Reiki for the last six years of his life. Bodywork lowered his anxiety, promoted relaxation and better sleep, lowered pain, helped his body move more easily, stimulated his brain and gave him positive, comforting human healing touch.
- Acupuncture and traditional Chinese medicine—Dad received acupuncture twice a month for the last four years of his life. After his sessions, he was sharper cognitively. The acupuncture and Chinese herbs prescribed by the traditional Chinese medicine doctor became our top tools (with no apparent side effects) when his anxiety spiraled out of control.
- Chiropractic—Dad had adjustments from his chiropractor as needed, which alleviated pain and helped him walk more easily. He also often experienced a cognitive boost as he did after acupuncture and exercise. His chiropractor made it easier for him with a special exam table that Dad stepped onto; it then lowered down flat for his adjustments.
- Aromatherapy—We used an ultrasound diffuser with lavender that helped him sleep much more soundly. Citrus oils helped him wake up and during the day stress-relief oil blends helped calm his anxieties (and that also helped us as his caregivers).
- Infrared lights—I read many research articles indicating near-infrared light therapy may be helpful with Alzheimer’s disease. We were able to borrow a light therapy unit from Dad’s doctor, and used it on Dad’s head twice a day. We observed improvement in his abilities and mood so we purchased a unit and used it during the last year of his life.
- Nutrition—Dad loved the fresh organic vegetable/fruit juice we made him every morning for many years; it was hydrating and full of nutrients. We used strong flavors in his food to stimulate his appetite, and I tried to avoid gluten, dairy and high amounts of sugar in his diet as well. At the end of his life we pureed all of his food.
- Music—Dad was a lifelong music lover, so it became our constant companion. When it was time to wake up, we started with calming classical music or hymns, then changed to show tunes and then to Big Band music. We sang throughout every day—as a distraction when Dad was anxious, to encourage an even gait when he walked and simply to have fun. When TV show plots became too difficult for him to follow, he enjoyed watching movie musicals and Lawrence Welk every day.
5. Remaining in a home environment: Mom and Dad wanted to stay in their home as they aged, so that’s what I helped them do. I moved to Arizona from Washington, D.C., to provide support, and when they decided to move to a senior community, we made their apartment “home” with their furniture, artwork, family heirlooms, flowers and seasonal decorations. When they both needed 24-hour care, they moved back into their house with me. When Mom died, Dad lost his North Star, so it helped him to be in his home with familiar people, animals and belongings. At home, my sister (who moved from Ohio to Arizona to help) and I could provide most of his care, adjusting his care plan as we saw fit and closely monitoring other caregivers.
Most importantly, while Alzheimer’s made Dad feel scared and confused at times, we were always there to provide comfort and meet his ever-changing needs. We were his constants, and he almost always “knew” us on some level, calling me his daughter and my sister, Linda, by her name just weeks before he died. He trusted us and he always knew he was loved; it was our greatest gift to him. And in turn we received the gift of peace of mind.