Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
Meet Mabs. Four months ago, Mabs told me that she had been diagnosed with Alzheimer’s disease — she gave me permission to tell her story.
“If I can help others,” she said, “you can even use my name.” She allowed me to take her picture and to show samples of her writings.
I met Mabs when she joined my Memoir Miners, a memoir-writing group, more than six years ago. We meet once a month to share and edit our memoirs. Mabs’ memoirs began in childhood, capturing detailed events of life with eight siblings. She hand-wrote all her memories and brought copies for each of us every month. We communicated through email until a year ago.
I reacted like a family member when Mabs announced, “I was diagnosed with Alzheimer’s.”
“It can’t be,” was my first reaction. I wanted to tell her to get a second opinion. How could she have dementia when her handwriting and complete sentence structure hadn’t changed? Her smile still filled her face when she entered the room.
The following month, she called the day before our session to ask whether we were meeting. The
next morning she called again with the same question. I felt such sadness. Her car was taken from her so I arranged for another member of our group drive her to and from our sessions.
Mabs uses a cane now and is very honest about her new life. Her memoirs are written in the immediate present, as she has no memory of her past. Last week, she walked into the room and smiled without greeting anyone. I sensed she didn’t know our names. She sat right next to me and I felt a sense of security between us. She left to use the bathroom. I instinctively followed her out a few minutes later. She came out of the bathroom, confused, and began walking in the opposite direction. She seemed happy to see me in the hallway. “I know, Room 3,” she said, meaning she had consciously remembered our meeting room.
The person who has been her driver shared how Mabs asked her, “Who are you?” when she went to pick her up.
Mabs is 89 years old and, until six months ago, had lived alone. Now her daughter lives with her.
Mabs’ husband has Alzheimer’s and lives in a nursing home. Mabs used to visit him every day, but now visits him only when she has a ride. Here are some stories from Mabs soon after she was diagnosed:
“I don’t drive anymore, so it’s really hard on me. I used to go grocery shopping and had the freedom to do anything I wanted, but now I have to find rides. I call my children and my grandchildren, but they are usually too busy to take me places. And I don’t want to ask my friends.”
“What bothers me is my friends and family who don’t believe I have dementia. When I tell them I have memory loss, they tell me they have the same memory loss, so I shouldn’t worry. “No,” I tell them over and over. “Mine is different from yours. I do have memory loss; I was diagnosed. I wish they would believe me.”
“After my husband was placed in the home, I lived alone and liked my solitude. Right after I was diagnosed, people began to always drop by and I want to tell them there’s no need to always be at my house. I enjoy being alone. My daughter now lives with me, but it’s good that she works so I have some time to myself.”
Here are excerpts from Mabs’ writing last week:
“I remember doing things easily and clearly each day, but now I don’t. I used to raise my bedroom blinds every time I woke up, but now and then, I’d go straight to the bathroom to wash up.
“While I’m watching TV, I’m deciding what shopping needs to be done, especially for dinner, which is forever tossed about in my mind.
I then call to see if a grandchild is available after school to drive me to Bel Air, my favorite grocery store for many years.
I enjoy my grandchildren cuz for one thing, they are always helpful shoppers and seem accustomed to accompany me. Am I their favorite grammie? Ha!”
Every month, I see the progression of her disease and it saddens me. As a writer, I’m also selfishly pleased that Mabs trusts me to be so open about her disease and that she continues to write. I see the changes in the content and know that more changes are in store. Take to heart what she is teaching us. Here are some lessons to be learned from Mabs.
• Ideally, when a person’s driver’s license and car are taken away, transition to being a non-driver will be less traumatic if a driver is made available. Families have hired someone to be the designated driver on certain days of the week. Others have arranged for the same cab driver. Sometimes, the sense of obligation and of being a burden will deny friends who are more than willing to help. Don’t wait to be called and do your own shopping so that the outing will be for both of you. Remember that the gift of receiving is also the gift of giving.
• Mabs reminds us to respect and dignify her by not dismissing her statement when she says she has memory loss. What can we say? How about adjusting to how we interact with each other? If you’re picking someone up to go somewhere, call her the night before and once again before you leave to pick her up. Answer her questions even if they are, “Who are you? Where are we going?” Be sensitive to the language we use. Phrases such as, “I told you,” or “Remember?” are only reminders that they are losing their memory.
• I know a person with Alzheimer’s who began to avoid her neighbor. When asked why, she said, “She doesn’t believe anything I say and treats me like something is wrong with me.” They don’t need to be reminded that their world of normalcy is being altered.
• Mabs still enjoys her solitude. One woman told me she doesn’t want visitors anymore because she doesn’t know how to talk to them. Oftentimes, our conversations with the elderly turn into Q&A conversations and they sense this and feel threatened that they will not know the answers. An activity-based time together may be less stressful, something like a walk, window-shopping or a visit to various museums where conversations are not necessary. A friend took someone who was previously a physician to the medical library. How about a visit to their old environments where they were once active participants? A visit can be prearranged.
• Children and grandchildren bring a lot of joy if they are there to enjoy the moments with them with relaxation and fun.
• Recently, I visited a caregiver whose husband has dementia. He never came out and pretended to be taking a nap. As I was leaving, I saw him outside in the garden. He asked me if there were a lot of people in the house because he’d heard voices.
When I told him I was the only visitor, he said, “I thought there was a lot of folks so I didn’t want to join them. I would have come in if you were the only one.” Does this mean that a lot of folks with different voices is too chaotic and confusing? Yes, they tell us a lot, if we listen.
There will come a time when these suggestions will have to be modified again, depending on the state and advancement of their dementia. What a creative and beautiful challenge for us as family members and friends, and even strangers out there in the public.
Frances Kakugawa was her mother’s primary caregiver during her five-year journey with Alzheimer’s disease. A native of Kapoho on Hawai‘i island, she now lives in Sacramento. Frances has melded her professional training as a writer and educator and her personal caregiving experiences to write several books on caring for people with memory-related illnesses. She is a sought-after speaker, both in Hawai‘i and on the Mainland, sharing strategies for caregiving, as well as coping with the stresses of caregiving.