My mother, at ninety-eight, has improved since her Alzheimer’s diagnosis more than ten years ago. This will surprise many people, who see Alzheimer’s only in tv and movie portrayals. She has stopped talking to herself, doesn’t repeatedly ask the same questions, and doesn’t cast furtive glances into the corners of every room. After years of Mama’s living in our family home, these behaviors have subsided, and she has recovered a surprising level of physical health and genuine happiness. My unscientific conclusion is that the care and company of those who know and love her have made the difference.
Behaviors that I first thought were Alzheimer’s symptoms now look like something else. I believe that they were generated more by anxiety and confusion than by the disease. She was alone too long. My brother and I respected her choice to remain in her home after our father died, and, somewhere in her seventies or eighties, she lost her grasp on managing and making sense of life. We called and visited regularly from long distances, acting as we believed good children should act. Only now, do we realize how she rose to the occasion on those phone calls and weekend visits to convince us that things were going “well enough” for her. Our efforts were no substitute for a caring person immediately available to offer regular emotional support, observation, and sociability.
I write this to encourage loving families to take another look at their options when there is an Alzheimer’s diagnosis. It is not a “given” that your loved one must go to a nursing home. Not every person with this condition spends their remaining years in a specialized care facility or takes anti-anxiety and anti-depression medications. Home care that restores stability, familiarity, and loving human contact may be the key to reducing some of the most disturbing behaviors associated with the disease.
There is no sugar-coating the fact that Alzheimer’s is a form of dementia that robs its victim of good judgment and short term memory. While still driving, my mother asked me several times why the red lights on the cars in front of her sometimes blinked off and on. It was only by divine grace that the burners left on in the kitchen never caught the house on fire. She regularly lost track of whether she had had breakfast, taken her medication, or been told about a recently-scheduled doctor’s appointment. Her inability to negotiate the everyday world independently has not changed. My mother needs twenty-four oversight and encouragement to dress, bathe, walk safely down stairs, dine and sleep at regular hours.
One of my family members recently burst forth with the complaint, “You’re treating her like she was a normal person - and she’s not! She’s ill!” His observation was correct. She is ill, and the best care we can give is to maintain her sense of calm and dignity. Mama stays in the bright, cheerful room where she often was a visiting grandmother. She takes walks around the neighborhood, greets the neighbors, has meals with the family, goes on errands to the grocery store, plays simple card games, and watches tv shows that make her laugh or transport her to Broadway, the opera, and symphony (on our cable channel it’s the 24 hour Classic Arts Showcase). She has retained her basic social graces and comments easily on the weather, the food being served, and the attractiveness of decor and dress. Snatches of her wry sense of humor re-surface from time to time, to the delight of all. The shade of anxiety that masked her beautiful face has lifted. The fabulous jewels in her conversation are recollections from the 1920s. She describes walks with her mother during a rare eastern North Carolina snowstorm, doing homework in her father’s law office, driving with him to check on the crops, and enjoying raw peanuts picked in the field. She re-lives spring dances at the Community House, horseback rides with her fiance, and her joyful childhood with two younger sisters. These vignettes are beyond value to her children and confirm just how much of her essence remains.
In my opinion, families of recently-diagnosed Alzheimer’s patients reach too quickly for institutional care, without exploring other possibilities. My experience as a caregiver suggests that loving care in a familiar home environment may actually extend and enhance an Alzheimer’s patient’s life. The following considerations may help families make an honest appraisal of the home care option:
- Don’t jump to conclusions about the path that Alzheimer’s will take. It can be different for every person. Get to know your individual relative’s experience. The disease ends some lives in a few years; other patients are going strong after a decade or more. Respond to immediate, actual needs, and try to avoid dramatic change. Take reasonable, small steps to put in place an initial plan for health and safety. Monitor it carefully, learn from it, and adjust as circumstances require.
- Consider the realistic costs and benefits of home care. Understand that it may be more expensive than some institutional care and that it depends on finding caregivers with the right personalities and skill set match for your older relative. It requires unusual patience and endurance from family members who must manage medical care, supplies, activities, and a team of caregivers. It will challenge your own family’s commitment to each other and to responsibility in general. On the plus side, it offers the satisfaction of completing a full cycle of life and helping someone have a soft landing at the end. It also means increased influence over the older person’s immediate environment - diet, safety, sanitation, exposure to illness, social interaction, etc. This, alone, reduces everyone’s stress by collecting worrisome variables in one place.
- Think through the realities of institutional care. Operate in the realm of facts, not impressions. No institution can completely replace your oversight and concern. How often will you feel the need to visit, attend doctor appointments, and care planning meetings? How pro-active will the staff be? Will they try to prevent falls and counter poor eating habits, bladder infections, and dehydration? Or, will their emphasis be more reactive - reporting to you when something goes wrong? Staff time and attention are not unlimited. Come to grips with your own care standards and how much you are willing to compromise them. For example, your personal instincts for safety may call for an “extra” caregiver to stay with your Mom or Dad during the day. The cost, in addition to the residential care, is likely to be prohibitive. Will you be able to accept the added risk?
Alzheimer’s visited our family without warning. There were no forerunners. I knew nothing, in advance, about caring for an adult who needed so much help. My husband and I had no expectation of any of our parents ever living in our home. We had raised our children and had thought our major care giving days were over. This experience has truly been an example of “You don’t know what you’ll do until you face the situation.” In its midst, we have been strongly drawn to home care, so long as we can maintain healthy lives of our own. We revisit our decision regularly and keep coming to the same conclusion: “It just feels right.”
