Yesterday I discovered, in the most horrible way, that one of my dearest friends for almost 30 years, has Alzheimer’s dementia, and is in the advanced stages. I am visiting San Francisco this weekend and have been trying to reach my friend and her husband in order to take them out to dinner. As they are both in their 90’s, I was not surprised to discover they had moved: I assumed that they no longer wished to drive and had moved into San Francisco proper to make use of its public transportation system. When I called, however, I got the shock of my life.
Someone answered the phone — a woman whose voice I didn’t recognize, and who turned out to be the Day-Nurse — and informed me, after I’d told her who I was, that my friend Keiko didn’t know me. I hadn’t even know Keiko was ill, let alone with Alzheimer’s dementia, so I just said, “What?” and the Nurse, quite uncompassionately, I’m afraid, simply handed the phone to Keiko.
Having been a full-time Caregiver for an (ex)roommate with advanced Alzheimer’s for 6 years, I immediately recognized the symptoms. Keiko claimed she didn’t know anyone by my name. She said she didn’t know the town in Ohio where we first met, and where, as a classical pianist, she taught me piano for five-six years while I was a graduate student (because I’d always wanted to learn to play the piano). She said she didn’t know anything about any books I’d written (she has all mine and has read them). She sounded increasingly upset and distressed. Then the phone dropped from her hand. The lovely, empathetic Nurse returned to the line, said, “See? I told you,” and then hung up on me.
I called back and asked to speak to my friend’s husband, who was apparently out at the bank. This time the Nurse gave me the number of the main desk to the apartments where they live: it is an Assisted Living Unit. I left a message for Keiko’s husband, Bacon.
Then I grieved.
Being intimately familiar with Alzheimer’s dementia, I realized that, though she is still alive, she is lost to me already. That is one of the painful tragedies of Alzheimer’s dementia: it steals its victims’ lives long before it kills their bodies.
Later, I spoke to Bacon. He put my friend on the phone again. This time, with him home, she sounded much calmer. Still, she did not know me. Then, he apparently retrieved the email I’d sent them this week with the photo of how I look now and showed it to her.
“I know you,” she said happily. “Is this you?”
Bacon said that when he showed her the photo earlier in the week, she also remembered me. “Unfortunately,” he said, “she goes in and out.” Unfortunately, having dealt with Alzheimer’s for so many years myself, I understand what that means: when I go to have dinner with them this weekend, she may remember me briefly, for a few moments at a time, but then she will continually and incessantly ask me who I am.
If she remembers me at all.
I’m going to their home on Saturday night to have dinner since Keiko is too ill to travel. It frightens her to the point of hysteria. That means, despite Bacon’s assurances that she’s “not that bad,” that she is, in fact, quite ill with Advanced Alzheimer’s, and only feels safe in her familiar, home environment – and only when he is with her (as evidenced by the fact that she was so upset after the Nurse handed her the phone when I called the first time, despite her being at home).
If a trusted loved one is there and the victim, despite his increasing loss of memory, still feels safe around the Primary Caregiver, the victim will feel calm when the Caregiver is around. The victim may also feel safe around others simply through intuition, even without knowing or remembering the person.
When I was researching my second novel, Only with the Heart, to get some healing and knowledge beyond my own experiences with Alzheimer’s and Caregiving, I visited many Assisted Living Units and Nursing Homes. The residents there were in various stages of moderate to Advanced dementia, but invariably, they liked me, wanted to stand close to me, hold my hand, hug me. A couple asked to come home with me though they had never met me before. The Directors of the places I visited, as well as my own therapist – who specialized in treating Alzheimer’s victims and their families – explained that sometimes dementia victims can sense kindness, patience, love, empathy, etc., just as children can. When they do, they feel safe with that person.
I hope Keiko will feel safe with me.
Last night, while Bacon and I were making plans for me to contact them Friday after I arrive in San Francisco, and exchanging cell-phone numbers, I heard Keiko continually speaking in the background. Bacon apologized, telling me that she thought I was coming to dinner that night.
Time has no meaning for an Alzheimer’s victim. There is only the present.
I grieved off and on all day and night yesterday after I discovered how ill my friend Keiko is with Advanced Alzheimer’s. Though I look forward to spending time with her and her husband on Saturday, I am not confident that she will know who I am. I hope, at least, that she feels safe enough with me to not be distressed while I am there. I know Bacon will be happy to have an old friend there who understands what he has been going through, a friend who intimately understands his loss, his pain, and his terrible grief.
I also realized for the first time, to my surprise, that when my (ex)roommate Dick had Alzheimer’s and I was his sole Caregiver, I experienced a range of emotions: anger, depression, confusion, rage, sadness, despair.
But not grief.
You see, I’d actually broken up with him, yet again, just before I bought the house. He convinced me to let him move in with me, as roommates. For some reason I still have never figured out, I agreed to let him move in with me and share expenses. However, he was in such late-moderate to advanced stages of Alzheimer’s — whose symptoms I did not recognize at that time — that he was unable to pack and move himself: his grown children came up to Ohio from Georgia to pack his things and move him. It took nine months before he actually moved in.
What a tragedy it turned out to be.
Yesterday, when I was grieving the loss of my friend, Keiko, I realized that I had never felt grief over my (ex)roommate because I had never been in love with him (which was why I’d broken up with him so many times over the years) and didn’t even like him when I let him move in with me. I also realized that, in my novel, my characters Claudia and Sam, who lose Sam’s mother Eleanor to Alzheimer’s, never grieve. They experience rage, sadness, depression, frustration, anger, guilt – all the things I felt myself when I was a Caregiver – but not grief.
Because I had not felt grief.
Of course, I also had not known that he had Alzheimer’s until after I’d moved out of the house I’d bought. But knowing that Dick had had Alzheimer’s would not have made me feel grief. I didn’t feel that emotion because I didn’t love him. It’s as simple and sad as that.
I love Keiko. I am grieving. I’m sure I will grieve even more after I have seen her, probably for the last time, on Saturday night.
I also realized that I will have to add a scene to my second novel, though the revised edition has already been published: a scene where Claudia and Sam grieve, inconsolably, the loss of Eleanor before she dies. Because Claudia and Sam do love Eleanor. Very much.
Someone once told me that the hardest part of death is that, though you can continue, all your life, to love the persons you lost, those people are no longer there to love you back. That is true of Alzheimer’s, too, only its victims are “no longer there to love you back,” despite your loving or caring for them, long before their bodies finally die.
Keiko used to play classical piano. I loved to hear her. She was wonderful. Because I didn’t start piano lessons until I was an adult, my hand and arms muscles were already formed, and I could never make my hands and fingers play the music I heard in my head. Keiko could, and she played beautifully.
Her husband says she can no longer play, though she still sometimes understands the word “piano” and sits at it. Not playing. Just sitting. I wept for over an hour after he told me that just because I know how much her music and playing the piano meant to her. And because I know how much her husband used to love to listen to her playing while he was working in the garden or around the house.
This, then, is for Keiko. Beethoven’s 8th Sonata (sometimes referred to as Sonata Pathetique ), 2nd movement: Adagio cantabile. With love.
Update (28 Dec 2016): Keiko did remember me very well when I had dinner with her and Bacon when I was in San Francisco in 2013. Unfortunately, she deteriorated so rapidly that she only spoke once more to me, with the photo of the three of us together in her hands, and she kept asking me why she hadn’t seen me at the Home, and telling me that I’d looked “pretty in my Nurse’s uniform.” After that, she couldn’t remember me even with the photo. She didn’t realize she was suffering. She didn’t know she was ill. But her poor husband Bacon was showing great strain and depression the last time I spoke with him. Caregivers need at least as much love and support as the victims of Alzheimer’s, even when they live in an Assisted Living environment and have the help of staff. If you know someone who is a Caregiver, please take her out to lunch, or give her a break from the 24/7/365 nursing responsibilities.