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Lisa's Story
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Lisa

Lisa has shared with us two stories about her visits with her mother. Lisa documents the changes in her mom and in herself.   

I recently wrote the following essay about my 73-year-old mother who has Alzheimer's. It was cathartic for me, my friends and family with whom I shared it. They felt that it would be a positive read for other caregivers. I am a 44-year-old, full-time working mother of two young children, and the only caregiver within three hours of my mother's assisted living facility.

Part I

My mother sees me and jumps up to greet me wearing a huge smile.  

“It’s going to be a good day,” I say to myself as I hug her. She hugs me with all her strength. I imagine that, for her, it feels like years since she saw me last, although it has only been a week.

She has taken to wearing multiples these days. Several necklaces adorn her neck and obscure the three sweaters she has on. She has on a number of bracelets, too, and they clank against the keys she keeps around her wrist on a curly cord. I am relieved that her hair is clean and brushed, and silently thank the nurses who coax her into the shower.

“This is my daughter,” my mother says to her friends seated around her. They all nod and say hello. I’ve met them all dozens of times. I notice that my mother does not use my name, and I briefly wonder if she can recall it, but no matter. Today she knows that I am her daughter and that’s enough for me.  

I guide her to her room to gather her coat and handbag. Her dresser holds a television she no longer watches. If she could use the remote to operate it, she would not be able to follow the program. Her answering machine blinks that it has 14 messages, and I begin my weekly ritual of listening to them with her, then clearing them. She cannot remember the steps to listen to them on her own, so this ritual has become part of our Sundays. Her grandfather clock is off by several hours, but it does not faze her. Even if the time mattered to her, she would not be able to read the clock. The CD player I bought for her several years ago collects dust on her desk, the label I marked “play” curling up at the corners.

I help her get ready for our weekly outing, chatting about my family and the silly events of the past week. She listens politely and laughs at my stories. I take her arm and help her into my car. As we drive to the restaurant, she asks about my family, although I have just told her everything. She looks around at the world around us, and I wonder if she ever misses the independence she had  just a few short years ago.

If I did not chatter, there would be silence in the car. My mother tries to read signs but has difficulty with some of the words. Sometimes she starts to say something but loses her thought and gives up. Sometimes she just can’t say the words she wants to say. But no matter, she is my mother. She’s with me and that’s enough for me.

I know my mother’s likes and dislikes as well as my own, and I order her lunch. She tries to cut her sandwich with a spoon, and I intervene so she doesn’t get frustrated. I watch attentively noticing that she eats less and less these days. I tempt her with a cookie and adore her childlike enjoyment as she eats it. Lunch is a small pleasure, but a pleasure for her nonetheless, and that’s enough for me.

At the mall, we go directly to her favorite store where I know she will find a sweater or blouse she will like. And we do. At the register, she knows she needs her credit card before I remind her, and I am happy for that. She struggles with signing her name, and my heart breaks as she concentrates to form the letters of the name she has signed for more than 50 years. I alternate between silently cheering my mother on as she signs the receipt and watching the clerk, hoping that she shows no impatience. She doesn’t, and I smile and mouth thanks to her, my eyes tearing ever so slightly. She smiles back, and I am convinced she knows my struggle. But no matter, my mother will take a new sweater home today, and she will feel good about it, and that’s enough for me.

My mother tires easily these days, and I know that our day must be over. I take her by the arm and help her into my car. On the way back to her place, she asks about my family and I tell her all about them and the silly events of the past week. No matter that these are stories I have told her numerous times. No matter that I don’t think she can recall the names of her grandchildren. Today she knows I am her daughter, and that’s enough for me.

I take my mother home where she feels safe and comfortable. She thrives on the predictable life the assisted living center provides. The locked entry assures me that she cannot wander outside even on her most restless nights. Crafts, music and bingo occupy much of her days. She has made friends and in many ways, has a fuller life than when she lived independently.  

I kiss my mother, and as I look into her eyes to say good bye, my heart breaks just a little more. I know her future. I know what this disease will do to her. I just don’t know when, and I don’t know what it will do to me. But no matter, there’s next Sunday and the Sunday after that. We will have another Thanksgiving. For now, I still have my mother and that’s enough for me.

Part II

Last year about this time, I wrote a story about my weekly visits with my 73-year-old mother.  In one short year, our visits have become shorter because she tires easily and is overwhelmed by the activity.  Her memory and communication skills continue to decline almost weekly.  It seems to me that she is progressing quickly, and it struck me after a recent visit just how far she has progressed in such a short time. Physically, her only progression has been incontinence, unsteadiness on her feet and slow gait.  Following is part 2 of my original story.

My mother is sitting in a recliner next to her closest friend, Katharine. I crouch down beside her and take her hands in mine. I have learned that I must announce myself and it seems to help her if I define our relationship for her. My mother has not said my name for months.

“Hi, Mom,” I say with a smile.  

Her pale blue eyes turn to me and for just a moment, her brain  fails her and she isn’t sure who I am. Blessedly, the recognition does come and she smiles back at me. I help her out of her chair and steady her on her feet. She is clearly happy to see me, and she takes the small bouquet of carnations I have for her as if I am presenting her with something much greater.

We slowly walk to her room where she proudly shows me her latest craft project. She has painted a dainty box a deep burgundy color.  She tries to tell me that she wants to paint the inside, but she can only point to the inside of the box running her finger around the edge.  My mother communicates often with her hands of late. Words do not come easily to her anymore. Luckily, she does not appear to get frustrated at her inability to speak. Like I do so often, I guess at what she is trying to say and hope that I am correct. She and I have come to accept this as part of her.

I step into her bathroom with her close on my heels.  

“I brought you some new undergarments, Mom,” I tell her as I place two bags of disposables on her bathroom shelf.  

“Oh, good” she says and I wonder if she understands what the concept of disposable undergarments really is. Although I am horrified that we are fighting this battle, she and I have come to accept incontinence as part of her.

She is still holding the burgundy box and she shows it to me again. I notice that her hands are shaking and I fear she is developing Parkinsonism like her father did. Isn’t Alzheimer’s enough?  I tell her again how beautiful the box is. For one brief moment, I think that she is going to give the box to me. As much as I would cherish it, I cannot accept something that is so important to her.  And, quite frankly,  it is difficult to accept her childlike pride in her rudimentary crafts. I take the box from her and place it on her dresser and suggest that we take a walk.

My mother and I slowly, slowly walk around the assisted living facility. We walk past the residents playing a trivia game. We walk past a resident in a wheelchair. We walk past a resident napping on the couch. We walk past the kitchen where all the residents have just celebrated a birthday. I tell my mother about her grown children and her grandchildren, and it is clear that she does not know who I am talking about.  Her responses to my news are as generic as if I had commented on the weather to a complete stranger. We fall into a comfortable silence as we make our way around again and again.

After several minutes of walking, my mother begins to tire and we head back to her room. I gather up some of her stained clothes with the promise that I will try to get them clean at home. I help her put her sweater on and we return to the living room where her friends are still playing a trivia game.  I tell my mother that they need her in the game, they are sinking without her, and she laughs.  

I hug my mother good bye and kiss her on the cheek. I leave her with her friends and the locked doors close behind me, ending another heartbreaking visit with the woman who no longer resembles the mother I used to have.

I flip open the trunk to my car and there, staring at me, is the portable wheelchair I had to buy earlier this week after my mother was briefly unable to walk. Strangely, I am not as devastated by the wheelchair as I would have thought. I do not see it as a sign of her progressing, but as my responsibility to keep her safe. Perhaps that is a healthier view. Perhaps I have finally accepted that this disease is part of her, and me as well.  Tonight, I am not in tears and I do not call either of my sisters for what I have termed a “meltdown call.”  Instead, I drive home to my children and husband where it is time to review flash cards and spelling words.


 

Alzheimer's Association

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Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.