Don Mesibov, author of “Appreciating Mom through the Lens of Alzheimer’s,” shares the experience he and his family had with Alzheimer’s disease, and discusses how he turned the time into an opportunity to celebrate, grow and learn from life.
Learn more about how to make the most of your time with a loved one with Alzheimer’s, in honor of this upcoming Mother’s Day.
While Mom had always been a caring, doting, loving mother and grandmother, it was the last nine months of her life that had the greatest impact on our family and on the memories I continue to cherish each day. As her caregivers, my wife, three children, brother and I got much more than we gave. But, we were fortunate.
I had heard that some people with Alzheimer’s experience a dramatic change in personality, but not Mom. Even though Alzheimer’s had steadily eroded her recognition of us, her warm personality and ever-present smile were with her to the last.
Mom was 83 and living in Florida when her husband, Ed, fell in the shower and passed away, at the age of 95, after a month in the hospital. Along with my brother, Gary, who was living and working in Chapel Hill, North Carolina, we made the decision to bring Mom back home with us to Potsdam, New York.
Two of our three children were still in school at the time. My wife, Susan, was a teacher and I worked out of a home office so there would be at least one of us with Mom at almost all times. We immediately hired Ginny, a professional caregiver, to be with Mom from 8 a.m.-5 p.m., every week day. Ginny was wonderful. She challenged Mom with mind games, exercised her and exuded love and confidence.
But, by the time Mom passed away from cancer in June, 2001, her physical and mental condition had deteriorated to the point where we gradually increased the use of outside caregivers to 24-hour coverage. She had gone from being physically okay in October, 2000, when she first came to us, to falling several times and eventually requiring a wheelchair and then a hospital bed on the main floor when she could no longer make it up the stairs to her bedroom.
We had suspected Mom had Alzheimer’s from the repetitious telephone conversations for the past year or longer, but we hadn’t realized how far advanced it was because her husband Ed covered for her. She was still driving, but only because Ed would guide her from the passenger’s seat: “Move to the left, Rhoda; turn now.” In restaurants he would order for both of them, but this wasn’t unusual so we didn’t realize she was no longer able to order for herself.
Ed was a retired doctor, a general practitioner, but he didn’t admit to us (and perhaps to himself) that she had Alzheimer’s until his last few weeks in the hospital when he confided “If I recover I can no longer care for her. It is too much.” He then informed us that Mom hadn’t cooked a meal for over a year because she couldn’t be trusted around the stove and that they ate alone in the dining facility at their retirement home because even close friends had tired of Mom’s circular conversations.
Back at home in Potsdam, it was an adjustment for us all. At night, after we had gone to bed, Mom would make one of her frequent trips to the bathroom, often rummaging through our two daughters’ jewelry and toiletries, brushing her teeth with their brushes and, sometimes, heading back into their rooms instead of her own and turning on their lights at 2 or 3 a.m.
After an initial few weeks of frustration, the girls went from anguish to understanding. Raina, 10, would come home from school and lead Grandma in an exercise routine: “Come on Grandma, lift those feet; you can move faster,” as they moved from living room, through dining room, into kitchen and around again.
Marli, 15, often sang to her grandmother, played games with her and, along with Raina, found ways to coax Mom into eating better than some of the professional caregivers were able to accomplish. When her grandmother kept moving food around her plate without eating any of it, Marli was the one who figured out that “Grandma knows from your tone of voice that she is supposed to be doing something, Dad, but her brain isn’t signaling her exactly what it is you want her to do.” Marli also came to the rescue at dinner time, one night, when Susan asked Mom, “Would you like the other half of the turkey sub you had at the mall for lunch?” and Mom said emphatically, “No.”
“Grandma,” said Marli, “How about I fix you a turkey sandwich that I’ll make especially for you?” “I’d like that,” said her grandmother, breaking into her familiar ear-to-ear grin.
Darren, 25 at the time, often flew in from Arizona to help out. I recall one time when Mom was pretty far along and a snow storm deprived us of our overnight caregiver. Darren, seeing the exhaustion on the faces of Susan and me, put a mattress on the floor next to his grandmother’s room and slept there so he could guide her to the bathroom and back during the many times a night she would make that trip. But this was an example of turn-around being fair play. I recall a car trip from my brother’s in Chapel Hill to Potsdam when Mom sat in the back seat with three year-old Darren singing the same song, upon his repeated requests, almost the entire 18 hour journey.
My brother, Gary, handled the many required and complicated banking, brokerage, accounting and medical record transfers from his home in Chapel Hill, as well as flying in for visits as often as possible to be with Mom and assist in her care.
We all had different motivations for the loving care we provided Mom. For Gary and me, she was our mother and she had created a culture of caring in our family. For the children, it was helping a loving Grandmother reap what she had sown. But it was Susan, who was responsible for the decision to bring Mom to Potsdam when Ed had passed away and who assumed an even larger share of the workload during the nine months of Mom’s visit. Since it was my mother, the decision to bring Mom to live with us had to be made by Susan and she insisted upon it even before I could ask her how she would feel about it. As Susan explained her reasoning, “I believe that families take care of each other not just with money, but by providing comfort, being there together, and being there for each other… I didn’t want our children to think that it was okay to do one bit less than was possible for a close family member. I wanted to do what I thought was right.”
While Mom may not have been able to recognize us, at times, or to articulate what was going on in her mind, it was evident from her reaction to those of us who lived with and loved her that she understood, at some level, that she was safe in our presence. When Raina or Marli walked through the outside door arriving home from school, even the Friday before she passed, their grandmother’s ever present smile grew wider in a way she reserved for those of us closest to her. Mom may not have been able to express it, verbally, but she knew what was going on. My mother may have been fortunate to have us. But we were so much more fortunate to have those last nine months with her.
Friday, January 12
Since moving to the main floor, Mom now sleeps on the top part of a trundle bed. Last night we put her in bed, then pulled up the underneath bed alongside her. This makes the surface of the bed twice as large and, along with chairs on three sides there should be no way she can fall off.
Mom wakes up a little after 8 a.m. and she has had a good sleep. She looks much better this morning. She is not the person Gary saw a few months ago and will never again be. She can only occasionally make sense with the words she speaks and she speaks less often than even a week or two ago. This past week has definitely taken its toll. But she does not appear to have any discomfort. As recently as four days ago, Sue could place a dozen envelopes in front of Mom and Mom might take half an hour, but she could arrange and rearrange them in piles. She also could do an effective job folding laundry and sorting things. These activities appear behind us now.
The biggest changes I have seen since October are in Marli and Raina, but probably Susan and I have made the same adjustments. While they have both been exceptionally good with Mom since she first came to live here, there were adjustments we all had to make because of the changes it was causing in our living habits. Both children, understandably, were alarmed when Mom would take their toothbrushes and use them or switch things from one drawer to another in the bathroom they shared. They had some difficulty accepting that things we previously could leave out in the open had to be closeted. Both were particularly annoyed the first times, in October, that Mom walked into their rooms while they were asleep at 3 a.m. and turned on the overhead light.
I realize now that, at some point, all of these concerns ceased and everyone now focuses on how can we help? In fact, I recall Gary’s comments on the irony of Ed, being a doctor, getting so frustrated with Mom’s behaviors that he couldn’t look at it clinically and accept it as the actions of a person with a disease. And we understood and accepted his frustrations and we realized that, most of the time, he probably did realize and accept what was happening. Similarly, we as a family now have completely accepted Mom as she is and we are able to react to her as you would to someone who has a problem that is not of their own making and is not within their power to control. In fact, I am probably the least effective even though most of the time I handle it pretty well. But when I am tired and pressing to get work done against a deadline, I can fall into the Ed syndrome and expect rational responses from Mom when I implore her to “Please get into bed so I can get some sleep, too.”
Sue is and has been the best at keeping things in perspective. We have both had moments when, in exhaustion, frustration or exasperation, we have screamed about not enough time to fulfill our minimum commitments on the job, take care of the children, maintain the house, and deal with Mom’s situation, but fortunately we’ve usually experienced these bouts separately and the other has been able to provide a more balanced perspective. However, I realized just yesterday, reflecting as I drove two hours from a workshop I conducted in Ausable Valley, that all of us have learned to keep things in perspective more of the time and to keep reminding ourselves that it is Mom who is enduring the ordeal.
When I see Mom sitting on the couch and that big broad smile emerges, it gives meaning to the universe. And if she isn’t smiling, a few words of encouragement or a joke (whether she understands it or not) and the smile comes back onto her face. Last night Raina asked me if we would put Grandma in a nursing home and if so when. She was lobbying for keeping her here as long as possible. Marli has been like a nurse, feeding Grandma when necessary, alerting us when something has to be done. Both girls have not only learned not to argue when Grandma gives a ridiculous response to something (Raina, that’s a four, not a flower), but to smile and say “You really think so Grandma?” We are all supporting Mom (Grandma) in the same ways we help each other and that she always helped us when we were ill or had a problem. We do everything we can, to the degree possible, to be helpful. The fact that this is a more serious situation than any of us has ever encountered seems to justify a greater commitment of time and effort from each of us.
Brian reminisces about his grandmother:
“Being with Grandma made me feel special.”
Marli reminisces about her grandmother:
“The quality I admired most in her was her patience. She’d sit with me for hours, letting me introduce her to all my stuffed animals.”
Raina reminisces about her grandmother:
“I remember most being with Grandma when she was living with us during those last few months and we would spend every day together after school.”
Todd reminisces about his grandmother:
“I was always excited to see her.”
Pick up a copy of Don Mesibov’s book, “Appreciating Mom through the Lens of Alzheimer’s,” and share your thoughts with us about the book in the comments below.
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