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auntieannie

auntieannie

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Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia

Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia - Kate Whouley Beautifully written, thoughtful memoir of an adult daughter (only child, single, self-employed) helping her mother through the various stages of Alzheimer's. Interwoven with the author's own experience of playing the flute all of her life. "If there had been a int of apology or defensiveness in my mother's tone, I might have been prepared for what I saw when she took off her sneakers. But she was matter-of-fate, and I thought it best to hold that tone as I caught the first sight of her overgrown toenails, inches too long, curving around her toes. How long, I wondered, has it been since her nails were clipped? ..."Let's begin with a good washing," I suggested. ...I channeled some other version of myself, detached, neutral. But I felt emotionally devastated. In baring her feet to me, my mother seemed to be confirming my worst fears. My mind and my heart were racing, but my hands moved in comforting motions and my face revealed, I am pretty sure, nothing to my mother. My poor, poor mother. ..."Your nails are kind of long," I said, Mistress of Understatement. "This may take a while. I'm going to wrap one foot up so you don't get cold while I work on the other.""Whatever you think." My other, relaxing into her mini foot spa, was agreeable. I considered the possibility that this situation might require professional intervention. I was afraid her nails might not fit under my clipper or that they might be too hard and resist cutting. I was worried that I might hurt my mother. But I forged ahead, making several passes on each toenail, and in about twenty minutes my mother's feet were in good shape. I suggested another quick footbath, applied more moisturizer, and pulled clean socks onto my mother's feet. "How much do you charge for that?" she asked me.p. 74-75An email from the geriatric care manager after her mother has moved into an assisted living facility. "Just a brief note to let you know I looked in on your mom a few times yesterday. She most definitely remembered me, and though there was a bit of sarcasm in her voice about not wanting to be at Sunrise, each time I saw her, she was well engaged in socializing with Marilyn and some of the other ladies. When she mentioned to them that she didn't like that her family just put her things in a truck and brought her to Sunrise, they all laughed and one of them said, "How else do you think they would have gotten you to come? You'll get it over, dear. This will become like home to you very soon." Being able to discuss how she feels with her peers and getting such positive feedback from them will help ease her transition. The constant availability of coffee right outside her door doesn't hurt either. Now if she can just curb the cigarette smoking, all else will fall in place. I'm relieved to hear that contrary to my mother's own assessment of the situation, she is socializing and making friends. But the combination of guilt and regret and sadness and just sheer worry for my mother's well-being renders me sleepless again tonight. In what might be a perverse act of self-preservation, my worries crystallize into one single concern: what if my mother goes out for an evening cigarette and gets locked out?" p. 118"My mother will continue to complain about being in prison. She will continue to ask for her car. She will continue to be angry with me for "sending" her to Sunrise. I will visit her at least once a week, and we will develop a ritual of supply runs to CVS, where my mother stocks up on snacks, buys the occasional greeting card, surveys the lipsticks and nail polishes, and always buys a carton of Benson & Hedges Lights. We will eat out, mostly at the Ninety Nine Restaurant, where, after scanning the menu, my mother will ask me, "What do I like?" p. 120"You and your mother are so close," people have said to me, presumably basing this observation on the fact that I have not abandoned her to danger and confusion, that I have cared for her and protected her from harm. In fact, our relationship -- complex and not always easy -- has never been what I would call close. For a good portion of my childhood, my mother was barely there -- distracted by disappointment and the demands of a volatile second husband, finding solace and her identity in her work outside the home. For most of my twenties and a good chunk of my thirties, I found myself at odds with my mother. She was often critical, sarcastic, and sometimes just plain mean. I felt as though I needed to shield myself, sharing less and less of my life with her. She met my retreat with repeated advances. She was capable of kind words, but more often called on her verbal prowess to fashion creative, biting remarks. ...I am not caring for my mother because we are in a close, enviable harmony. No. In choosing now to care for my mother, I am choosing to do what I hope some kindhearted person might someday do for me. It is less about the fact that my mother is my mother -- in truth, forgetting our long history makes it easier for me to relate to her -- and more about the fact that my mother is a fellow human being in need of my help." p.125-126"Alzheimer's has been called "the long goodbye," because you lose the person little by little over a period of years. Only months ago, I thought that was awful, tragic. But now I am beginning to believe there is new possibility even in the midst of loss. In forgetting, we are offered an opportunity to forgive. Everything that's old is new again. And everything that's news -- on the good days -- reminds us only of this: we are human, we are dear to each other, and we are here, now." p. 130"Almost everything about my mother's illness, I am learning, has a circular quality to it. Forgetting, reminding, remembering, forgetting. I experience the circularity not only in conversations with my mother now, but also in her actions and reactions, her mood and her manner. When I visit, she is at first happy to see me. She likes to show me off to her friends. "This is my daughter," she says. My presence elevates her status among the ladies whose daughters are not in evidence. While we run errands or go shopping, she is content, though she tires quickly and cannot bear weight on her hip for too long. Over dinner she often complains about her living situation, but I can usually redirect the conversation to more pleasant topics. But in the car on the way back to Sunrise, she grows angry with me. "You can't imagine what it's like living at that place!"Sometimes my mother warms again before we say our goodbyes. Sometimes she does not. Either way, I leave Sunrise feeling worn down, sad, inadequate, and exhausted. "I know I can't expect appreciation, but it would be nice to feel like my mother isn't eternally mad at me."Suzanne [geriatric care manager] reminds me of something we have discussed before. "Alzheimer's patents are constantly frustrated. And afraid. In the stage that your mother is in, it's not uncommon for the patient to blame everything and everybody around her for all the things that just don't make sense anymore. If your mother admitted the trouble was with her own mind -- even if she could figure that out or remember that it was true -- it would be way too scary. So she makes it your fault. You are like the lightning rod for your mother's anger. And there's a lot of history between you. That influences how she acts and how she feels around you. And how you act and feel too." ..."Think of it in a different way. You have always been the one constant in your mother's life. She loves you, and she knows that you love her. When you're there, she feels safe -- safe enough to be angry." p.142-144"As much as I appreciate Suzanne's moral support, her understanding and knowing ways with me, what I like best about Suzanne is that she likes my mother. She is developing a relationship with a woman she calls Anne, a person who is not only my mother, not only a patient with diminished capacities, but a woman with a personality as large as life, a still-quick wit, and hard-to-resist rebellious streak. When she speaks of my mother, Suzanne speaks with a growing fondness, a tenderness. At the same time, she remains matter-of-fact about my mother's memory loss and understands her limitations. And she isn't afraid to step into the fray." p. 147"The cycle of repetition has the capacity to make me crazy -- and it often does. But I've discovered recently that when I relax into it -- cycle and recycle, repeat, respond, repeat -- I understand that there is comfort in the repetition. I've learned, for example, that if my mother initiates the repeat conversation, she is truly interested in the subject or has something she wants me to know. Today I am learning that laughter is always worth repeating. As we eat our dinner out and I get Mom resettled into her room, I become my mother: telling and retelling the same story, relishing the joy she experiences when she realizes how clever she is. We laugh. And we laugh again." p. 153"The first episode seemed to last an eternity. Even when the intensity decreased, I remained anxious and wakeful till dawn. A week or so later, I had another -- again, without warning, this time in daylight. I did some research and confirmed that I was experiencing classic panic attacks. I wasn't willing to share that with the world -- not only because I felt embarrassed, but because even talking about anxiety can make you feel anxious. But I told Tina [very close friend] what was happening, and I was surprised to hear that she had her own experiences with anxiety. So did Suzanne [geriatric care manager], who suggested, among other things that I change the radio station if I felt an attack coming on while I am driving. "Do any small thing that makes you feel like you have control."I felt comforted to learn that people I knew had experienced this level of anxiety. Tina told me I could call her anytime I felt the panic rising. "Sometimes it just helps if you can hear another voice besides the ones inside your head that is making you freak out."My friend Harry -- kind, empathic, with an ever-mordant wit -- told me, "To be honest, Kate, I'm just surprised that it's taken you this long to feel anxious." The panic, and especially its timing, may be irrational, he seemed to be saying, but the ongoing stress in my life -- that is real." p. 163-164"Comparing her living situation with her brother's and sister's is a new variation on an old theme -- one that I thought we had retired months ago. But here we are -- back to square zero, all good feelings vanished. She cycles and recycles. I count ten repetitions -- almost word-for-word. I keep my cool, play my role in this emotionally fraught call-and-response. In an effort at distance, I consider that my mother can still string the words together so well -- the path of least resistance -- and yet have no awareness she is repeating herself. Alzheimer's patients tend to lose vocabulary as the disease progresses. My mother, thanks perhaps to a lifetime of reading and writing and teaching, still holds on to most of her words and invents new ones for those she has lost -- even as her memory grows increasingly unreliable." p. 171-172"I've decides, in the one and 1/8th rehearsal I've attended for this concert, that I am a rehearsal kind of woman. I like the process of coming to understand the music, hearing the other instruments, the melodies and countermelodies, the supporting bass line. Understanding, on a level that is not easy to explain, how my part fits in. I'll be playing this Sunday's concert on two run-throughs. Part of me thinks I was insane to agree to do it. The other part of me is grooving on the challenge. It's the latter part of me -- in music and in life -- that routinely gets me in trouble." p. 182"Memory is overrated. What is important in my mother's life, and in the time I spend with her, is that we have those moments. I can string them together into memory, and she cannot. But what I believe -- what I have to believe -- is that the quality of those moments matters, if only in the moment. She may not remember what we had for supper or what we talked about while waiting for the food to arrive. But she enjoys the meal; she revels in the conversation. She will eat the ice cream for dessert with unabashed enthusiasm. And the next day she will say to Suzanne, "I haven't seen Kate in weeks. She's off on a job in California."This longer bothers me. I no longer feel the need to prod my mother's memory, to remind her, to prove that I am a dutiful daughter. I've learned to live life with my mother her way, moment to moment. Of course, I still think and plan as best I can for her future -- and I feel compelled, still, to worry over it, especially late at nigh. But when I am with my mother, it's like I am with the music. I am there, present and attuned. Mindful of the moment now, and yet mindless as the moment, passing, becomes past." p. 186-187"My mother is dying. It could be weeks, but not months. She was released to rehab, but she will not be rehabilitated. As I watch her, fitful in her half-sleep, I am adapting, yet again, to this new reality. AS much as I want her to sit up in bed and ask for a Boost, I understand that three Boosts a day will not save my mother's life. Her kidneys have shut down. Her other organs will soon follow. And there will be no medical interventions on her behalf. In my capacity as my mother's health care proxy, I've signed a Do Not Hospitalize order and a Do Not Resuscitate order -- the third one this year." p. 206