Written by a caregiver who wished to remain anonymous due to the sensitive nature of this piece. We appreciate such an honest portrait of a difficult transition, it is so valuable for others to learn from those who are experiencing this first-hand.
Sobbing noises woke me up in the middle of the warm September night. My drenched pillow told me the tears were mine. My body trembled uncontrollably. Nothing my husband could do consoled me. I even wondered if this was how a breakdown looked. By dawn, I knew that one or both of us needed to go to an institution for help.
Seven years ago, my husband was diagnosed with mild cognitive impairment. His symptoms were similar to moderate Alzheimer’s disease, later confirmed by brain scans. In time, we discovered Memory Center Charlotte, where I learned that my responsibility as a caregiver was to keep him safe, calm, clean, and loved. We sold the home of our dreams where we lived for 28 years and moved to a retirement community with a memory care center that could care for my husband when the time came.
I remember asking other caregivers and professionals when that time would be. Some told me I would just know. Others said it would be when behaviors became dangerous or when wandering was out of hand or when the caregiver simply gave out. That night I realized all of those reasons had converged, crippling my ability to continue to provide the four basics of caregiving.
The next morning, I called Memory Center Charlotte for an appointment. I dumped my fears and failures on the table in front of the physician assistant, Ms. Wolkofsky. I was functioning, but barely. I could not keep tears from flowing day in and out.
The following day, I met with Dr. Edwards. Half a tissue box and half an hour later, he captured my reality with two words: depression and anhedonia. I understood the first diagnosis only too well, but the second was new. Based on root words for “not hedonistic,” anhedonia is the loss of interest in previously enjoyable activities. To live, I would need professional help – a psychiatrist who understands Alzheimer’s as a family disease and who would offer me both talk therapy and medication. Reluctantly, I swallowed my pride, met with the psychiatrist, and swallowed my prescribed pills.
I heeded his counsel to take daily walks outside, talk honestly with family and close friends, and give up my illusion of making a perfect transition to separate living after 50+ years of marriage. Guilt, I learned, was counter-productive. Alzheimer’s was responsible for the move, not me. I prepared for the radical changes by imagining we were already living apart. When lying in our king-size bed together, I would envision how it would be when I was alone. Slowly, my emotions began to adapt to the inevitable future.
“Care manager” became my new identity as I partnered with social workers and other staff at the memory care center. At first, I was nervous about losing control, but soon realized I had never had any control over the impact of this disease. I trusted the professionals to do their job and discovered just how depleted I truly was.
When my husband entered the memory care facility, the head nurse warned my daughter and me to prepare for a couple of months of living on a roller coaster. This was an understatement. His pleas to return home with me shredded my soul for a couple month before he adapted to our new lifestyle.
Following the advice of others, I created a routine that resembled our pre-memory care life as much as possible. I join him on his former exercise routine of swimming laps three times a week and walking outside on alternate days. Never have I been in better shape! We eat suppers in our old dining room each day with friends. On Sundays, we worship at our church and visit family. My husband participates in memory care center’s group activities that interest him and sleeps through those that do not. From time to time, he asks if I am his wife and seems pleased to learn that I am. Then he holds my hand.
We are discovering how to embrace our new reality of living well together while apart with creativity and gratitude. I now sleep well at night and spend time with old and new interests. Guilt is a rare visitor. An extensive network of family, friends, church, and professionals support us so that, at least most of the time, my husband and I both are safe, calm, clean, and loved.