Going Home
28May 17, 2015 by Paula Reed Nancarrow
The evening flight was a mistake.
Coming Home to Roost – Keven Law (Flickr; Creative Commons)
I was grateful to my brother-in-law for donating the frequent flyer miles and arranging the trip. At this point I could have afforded it, but he and my sister both understood I was not just coming for a visit; I was “spelling” Whitney so they could have a vacation without worrying about my parents.
I have to admit, after the grant deadlines that week (including a complicated proposal to the Minnesota Department of Human Services for their Aging in Place initiative), an afternoon departure was relaxed. But leaving Minneapolis at three and changing planes in Detroit meant I wasn’t scheduled to arrive in the tiny little Elmira Corning Regional Airport until nearly ten.
Night driving is not a problem, my father insists.
The macular degeneration only affects his ability to read small print. But if his eyesight was impaired, would he tell us? I don’t know that he would tell himself.
I do know that since my mother came home from the hospital in February, after another bout with pneumonia, she has been more confused in the evenings. And sometimes less… cooperative.
My father has always bullied those he loves.
He thinks they understand – or they should understand, anyway – that he’s being pushy for their own good. It was always my mother’s job to explain that to us. Now she doesn’t always understand it herself.
I don’t know what triggered the first episode; I wasn’t there. Perhaps she did not want to take a bath, or put on her nightgown, or brush her teeth. I only know that after refusing to do what she was told, my mother burst into tears, and said she wanted to go home. She wanted her sister Alice.
My Aunt Alice is on the far left; my mother, the second to the right.
Alice would have been 81 this past week.
She died in February 1994, almost a year to the day from when my mother’s youngest sister, Carol, died. Both had breast cancer, though Carol actually died of pneumonia after a bone marrow transplant compromised her immune system. Alice was 60; Carol was 47. My mother will be 83 on the first of June. Home has been the very same house for the last fifty years.
Both my parents had hacking, persistent coughs all through February.
My father’s eventually responded to antibiotics, but left him with a rattle in his chest. An X-ray showed nodules on his lungs that necessitated a trip to a specialist for a CT scan, to rule out malignancy. His brother had died of lung cancer, though his lungs had been free of cigarette smoke for twenty years.
“You know your mother can’t be left alone,” my dad told Whitney. As if that were not obvious. It did not dawn on her until later that he wasn’t talking about running errands by himself.
They used to call pneumonia the Old Person’s Friend. Now they have vaccines for it. For Carol that would have been wonderful. For my mother, it means she may die of forgetting how to swallow.
My sister set the cab up.
It would be disruptive for mom, she said, to bundle her into the car that late. I said the same. Remarkably, my father agreed. It was strange not to see them there when I arrived, not to have to argue with my dad about which one of us should lift my bag into the trunk of the car. But it was also a relief.
The text message came while I was waiting.
“Just so you aren’t taken by surprise….mom is a little fuzzy about you…I am sure it will become more clear but tonight may be difficult….would have been better if I was here for the transition …keep me posted.”
I was prepared for that, I thumbed back. I wasn’t, really.
The kid who picked me up was working two jobs, and not particularly good at this one. Friendly, but late, and seemingly unaware that it is the cab driver who generally puts the passenger’s bags in the trunk. I tipped him anyway.
I had to ring the bell.
They never used to lock the front door until they went to bed. Now they seldom use it. My father’s arthritis was acting up. It took him a while to get there.
“It’s Paula!” he said, a little louder than necessary. My mother stood, hesitant, in the background. “Your eldest daughter is home!”
“I know,” my mother said. “I know.”
She seemed happy to see me. When I hugged her, she hugged me back. But she did not say my name.
Paula Reed Nancarrow 
I’m not quite sure what to say to you about this except that it’s all very familiar. I’m sorry you have to go through this, to have your mom forget your name. My mother still remembers my name, but treats me as her sister most often. It’s difficult, but I hope you can find some peace through these times. I’ll be waiting to read the rest of the story. I hope it’s not too hard to write.
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Thank you, Mary. It’s harder not to write, I think. It’s not exactly that she doesn’t know my name; she knows who my dad is referring to when he talks about me, and if she’s prompted, she might say it. And if this doesn’t sound too new-agey, some part of her essence knows some part of my essence. She knows we are in relationship, and she still knows that she loves me. At least for now. The important thing is to treasure what is present at every opportunity. I can’t say it isn’t hard. But I do know it’s important.
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I like the way you describe it: “some part of her essence knows some part of my essence.” I also think that while we still live an embodied existence, we are still the person with the life we have experienced, whether or not we’rd able to access or express that experience.
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Thank you, Mary Ann. I think you are right. Or at least I hope so.
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Gracias.
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Touching and beautiful, Paula. Heartbreaking, of course, but you’ve explained it in a powerful and poignant way.
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Thank you, Sabina. Though I’m not so sure about the “explained” part. ;-)
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What caught me here is this: “My father has always bullied those he loves. He thinks they understand – or they should understand, anyway – that he’s being pushy for their own good.” And that it was your mother’s job to explain that to you all and now she’s a bit unsure of it herself. Lovely (sad) post but, yes, that’s what struck me. Maybe it’s a generational thing that fathers never saw it as “bullying”.
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It could be a generational thing, Sarah. I have some other ideas about where it comes from, based on what I know of my dad and his upbringing, but in the end each person’s inner motivations are a mystery to us – and perhaps that is truest for those we are closest to, and think we know the best. Because with them we do not question our assumptions.
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I’m still waiting for the reason for the title. Was it a mistake just because evenings are harder, or is there more to the story? I am looking forward to the next post, and hoping for lighter moments (however brief) of joy and peace for you and your parents during this visit.
You have a lovely way of expressing yourself.
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I suspect you mean the opening line, Diana? I think the title is pretty clear. Essentially, yes, because evenings are harder. The technical term for this, I believe, is Sundown Syndrome. There’s definitely more to the story, and there are some lighter moments. I’ll likely be working through the dynamics of my last visit in a series of posts, though I don’t expect them to follow one another in exact sequence. All Alzheimers, all the time would be a little much for anyone. My dad is certainly proof of that.
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Sorry Paula, of course you are right. Not sure how I missed that.
I look forward to whatever posts you choose to share. The ones I’ve read so far have been honest, insightful, and poignant. You express yourself well.
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So touching and poignant; the part on father bullying resonates with me. Mine was an emotional bully at times of stress, a situation that he hated and yet couldn’t stop and then the guilt and the frustration and the recycling, with mum weaving in and out of the pokes trying to help everyone make sense of it. Retirement and release from the pressure of work that triggered so much, and the distance we had being visitors rather than prisoners helped create a different relationship in later years which it sounds as if you haven’t had and if anything it has become much tougher with your mother’s withdrawal. I wish you well..
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Thank you Geoff; it’s especially nice to get a comment from someone who gets the complexities of that. There’s certainly been aspects of our relationship that have evolved, but under stress I fear we all regress.
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Oh Paula, there are rough seas ahead. I feel for you. Modern medicine has improved much for many, but creates as many complications too. Alzheimer’s is a cruel disease, and not just to the one whose mind and body it consumes. Take care of yourself while you take care of others.
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I’m normally 1061 miles away from the scene of the crime, Norah, so I have some built in measures for that self-care. But as you can imagine, that distance brings complicated feelings of its own. Thanks for the kind thoughts.
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I felt sad reading this Paula..thanks for sharing..
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Sad is the right feeling to have sometimes; not that I want to spread sadness, Parul. But when others can feel what you are feeling, it makes the burden a little less heavy. Thank you for your compassion.
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One of the stages of Alzheimer’s is not being cooperative. It’s not a fun stage, but most people go through it. The trick is to remember that the mom you knew before would never say or do the things they say and do with the disease. I hope the rest of your visit went well.
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The visit had its ups and downs, as such visits do. Thanks for caring, Judith.
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Oh, Paula. How these visits hurt and leave us feeling a little fuzzy and demented ourselves. I hope the trip brings moments of connection. Everyone trying to stay calm and manage an impossible situation. Your dad trying the way men sometimes do. Sounds like he’s yielding a little.
I remember working with my mom for an exhausting 30 minutes to help her recognize that the balding stranger sitting in front of her, my visiting brother, was the same little boy she’d mothered during WW II. She finally got it. I wept at my success. My brother seemed untouched by her spark of recognition as she reached out to pull him into a hug. I needed connection even though it didn’t matter to my brother.
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You are right on the mark there. And there were certainly such moments; I will be visiting a few of those in other posts. A friend of mine said one of her brothers was particularly good with her mother when she had dementia precisely because he had no expectations of her one way or the other; he could enjoy her company whether she knew who he was or not. We all handle things differently, don’t we?
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Such a heartbreaking and beautifully written post Paula…I’m not sure what else to say ((hugs))
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Thanks, Ruebi. You said ((just the right thing)).
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So moving, Paula, your words capture the poignancy and complexity of the family scenario so well.
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Thank you, Anne. Right now I’m just sketching out a moment or two at a time, trying to get it (mostly) right.
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Thank you, Paula. What you wrote brought back memories of my trips to Central New York to visit my elderly parents. Of course, the details of our experiences are different, but I’ve found that sharing mine with other people going through this period of life is tremendously helpful. A gift we give each other. I am very grateful and feel privileged to have witnessed the last years of my parents’ lives and supported them as much as I could. It’s a very special return for the time they cared for me when I was most utterly helpless — and probably not always so lovable either!
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You are quite right, Alice. Sharing these experiences with others is tremendously helpful. I wish I could spend more time with my parents than I do. Where in Central New York?
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