In the United States, there are more than 16 million people caring for someone with dementia, and estimates place millions more volunteering around the world. Giving care for a loved one can make an incredible difference for the patient’s quality of life. It is a remarkable gift to give, but a gift that can be wrapped with ribbons of stress, emotion, anxiety and isolation. The burden of caring for someone else can put you at increased risk for significant physical and emotional health problems.
I cannot write with personal credibility on the issue of caregiving for an aging loved one because I have never felt the pressure of having someone depend on me day in and day out. According to the Centers for Disease Control and Prevention, at least a third of caregivers for dementia patients provide the care for five or more years. I have danced close to caregiving, but I have never tangoed alone.
Instead, I talked to an expert. My sister, Janice Halfaker, was the primary caregiver first for our grandmother and then during the latter years of our mother’s life. I asked Janice several questions about her experience as the primary caregiver.
1) To you, what were the biggest challenges for "being on call" for caregiving? Did those change when Mom went into the more restricted assisted-living home?
This type of challenge grew over the length of Mom’s illness. At first, when Mom was more able and aware, she would call me MANY times a day and night. This was one of her strongest repetitive actions in the first few years. It became like the “Boy who Cried Wolf.” I was tempted not to answer, but was afraid not to, in case this was the one time she really needed me.
This did change with time, especially as she moved into memory care. She soon forgot how to use the phone. So the urge and pressure to go see her daily became my greatest challenge. Also at that point, a phone call from the facility became a moment of panic because it usually meant there was a problem.
From beginning to end, the challenge of being on call meant trying to meet her needs and keep her calm and satisfied. This was a huge stressor for me because I never wanted her to feel forgotten or needy.
2) The research talks about depression and anxiety as a common reaction for the caregiver? Did you experience this? How did you overcome these?
Depression and anxiety were a huge issue for me. I’m not sure I overcame it. I just dealt with it better as I got medical help. Not only am I a “worrier,” but I have dealt with depression throughout my adulthood. As the dementia progressed, my stress level did as well. I worried that she would fall or wasn’t eating enough or would lose something else and on and on. My doctor increased my antidepressant dosage, which helped, but the worrying continued. It just wasn’t causing the depression symptoms to worsen (the insomnia, mood swings, crying A LOT).
3) Another common experience is a change in your personal sleep patterns or quality of sleep. Did you notice this?
I absolutely dealt with sleep deprivation. It was kind of like those first months and years you have a baby. I didn’t sleep soundly because I was afraid I wouldn’t hear the phone if Mom or someone from the facility called in the night. This probably wasn’t as much of an issue until it happened a couple of times. Then I was waiting for it. I also sometimes was so exhausted but had so much on my mind, I couldn’t shut down. So it started taking forever to fall asleep. Once you fall into the pattern of waking up in the night or not being able to fall asleep, it’s so difficult to change your sleep pattern. It’s only been in the past year, with medication to help, that I sleep soundly.
4) Were there positives for you that made you glad you had the experience?
There certainly are positives to take from the experience. Mom and I became so much closer. We went from mom and daughter (her to me), to best friends, to mom and child (me to her). In the last year with her, I retired from teaching, which allowed me to spend more time with her, which I’m grateful for.
I also learned to be an advocate for her well-being. I started out nodding and smiling when conversing with the nurses and administrators — the “professional is always right” syndrome. As I gained confidence in myself as an advocate, I was comfortable questioning their decisions for Mom’s care and speaking up when I felt she needed something more.
Finally, as others are now dealing with these same issues with their parents, I feel I can contribute from experience to the conversations about moving them to assisted living and possibly long-term care in the near future.
I appreciated my sister’s candor and vulnerability as she looked into a critical time in her life and the life of our mother. Caring for a person with Alzheimer’s or dementia can often seem to be a constant battle with grief as you watch your loved one’s personality change and disappear almost with the breaths they take. For the caretaker, the changes can pack an emotional wallop akin to 15 rounds with an over-matched boxer. The result may be bruises and brokenness from confusion, anger and sadness.
While the challenges are many, the rewards of a deepening bond, a newly formed relationship, and the development of the skills of compassion and acceptance are unsurpassed.
From the Catbird Seat, there may not be a more visible display of unselfish love than that of a caregiver. Our eternal gratitude to Janice and the millions like her who model what being a blessing is all about. The thanks are long overdue.
— Tom May is a freelance writer and educator, and a columnist for the News and Tribune. Reach him at firstname.lastname@example.org.