Reading Between the Lines

My 88-year-old mother lives alone. Her family caregivers – my brother, her granddaughter and me – live hours away. During one period of a few days, she told all of us she wasn’t feeling well. She downplayed it, so we didn’t worry too much in the beginning. She finally told my brother that she had fallen and sprained her wrist. Uh-oh! Mother almost never complains, so any complaint means something fairly big must be going on.

I called a certified nurse practitioner who did various things for Mother such as administering her monthly vitamin B-12 shot. Frances drove over to Mother’s and called me immediately: “Is it OK if I take her to the emergency room?” Frances asked.

She had found Mother in bed with a seriously swollen hand. At the emergency room, it was determined that Mother had broken her wrist, meaning that she had been living with a broken bone for about three days.

The rest of the story is that my brother, who lives closest, had to get her into surgery within a few days. With the help of physical therapy, the wrist healed up just fine.

All of us call to check on her daily. We listen for signs that something might be wrong, but since Mother has an extraordinarily high tolerance for pain and hates to complain, sometimes we miss the signs.

The three of us – along with Peggy, a caregiver who lives near Mother – compare notes regularly to make sure we’re getting the whole story or to combine bits and pieces of the stories we all get from her. We read between the lines, and somehow we manage pretty well. Meanwhile, Mother is happy living in the home she shared with my dad until he died.

Signs of Alzheimer’s Disease

My father started showing signs of Alzheimer’s disease about 25 years ago. At that time my parents lived in Florida, over a thousand miles away. I got married 23 years ago and moved into a home that my wife and I owned. My wife suggested that my parents move closer to us. My mother always liked my bachelor home and she and my father agreed to relocate and move into that home in 1990. The relocation went smoothly. There were many couples in their 60s and 70s in the new neighborhood, so they were both socially active and had many hobbies. At that time both my parents drove and were very independent. My father died in 1993. At the time my mom was 78. Looking back on this situation it was good that my parents moved when they did as my mom knew the city and was comfortable driving. She was able to maintain her social life and do anything she wanted. From 1993 to 2003 I only needed to assist my mother with yard and major household tasks.

In 2003 she became ill with a virus and needed to give up driving. My mother is now 96 and needs more and more assistance with household, gardening, and shopping activities. To date mother refuses to look at an assistive living facility. My wife jokes that my mother is indeed in an assistive living facility as I’m her assistant! That is not far from the truth. To keep mother in her home and safe requires more and more and it demands more of my time, which causes me to neglect activities and priorities in my own home and relationships. Even though I’m retired, there does not seem to be enough time. Don’t get me wrong, we are happy my mother is enjoying relatively good health. However, she does have problems with balance and won’t accept guidance regarding her safety, such as avoiding going into the basement or standing on a chair. My fear is that she will fall and break a hip and that will be it. My mother is convinced that she will never fall.

Caregiving Experience

My story is from the perspective of being a wife, daughter-in-law and nurse. Almost from the time we married, my husband and I began discussing the possibility of his mother coming to live with us. She was 77 and her husband had died a couple years earlier before we ever met. Since then, she quit going out with her friends and even seemed frail though she was relatively healthy except for high blood pressure, degenerative arthritis, and osteoporosis. We found ourselves spending more time with her just to provide her with some company and stimulation and to share some meals, hoping she would eat better. Eventually, we did offer her a place at our home which she declined, not wanting to impose. She was losing weight , her mood had not lifted, and she had begun to fall. We weren’t sure her physician was thorough during her visits or that she was honest with him so we accompanied her to some appointments and arranged for a consult with a geriatrician that she reluctantly attended. She agreed to some of his recommendations but not others (eg. “yes’ to physical therapy, “no” to some medication changes); any change was upsetting and she was afraid her primary care doctor would be angry with her. I was suspicious that she was developing dementia that was aggravated by depression. Her only other son and daughter-in-law did not seem to agree or see the need for increased involvement.

All in all, it was a gradual decline over a seven year period. Despite our encouragement, she would never move from her home or even accept a personal safety alarm system. Essentially, we maintained two households, phoned her multiple times during the day, visited in the evening and weekends, set up her medications, took her to appointments, provided food and supplements when the home-delivered meals went untouched, managed her finances, etc. It was time intensive but not really labor-intensive. We struggled to find time for each other and it was a strain as we started having children. I realize, though, that in comparison with other family caregivers, our experience was really pretty simple. We were spared the need to perform complicated medical care that some individuals undertake in their homes. And fortunately, Mom’s dementia never progressed beyond forgetfulness. She had elected to quit driving and had long quit cooking so we didn’t need to worry about a burner left on.

Our biggest fear was that she would fall and lay for hours. One evening she phoned us, having drug herself across the floor after falling and breaking her hip. The next couple of months were spent much the same way as before the hip fracture—not in providing medical care but in managing her affairs and constantly visiting, even staying overnight in the hospital, to serve as her advocates and source of comfort as she went from hospital to nursing home for rehabilitation and back again until her doctor diagnosed pneumonia and recommended hospice in her last five days.