Walking the Bogs: My Mother’s Alzheimer’s Journey

There are times when life doesn’t give you a chance to catch your breath. A few days ago we received a text message from my brother-in-law. We were on Cape Cod staying with friends who bought a rental property that Rich is working on. I spent my days writing the final chapters of An Innkeeper’s Journal, a somewhat mentally tiring endeavor. I felt the sooner I finished the story the sooner I could get on with my life. I needed to wrap it up, put it behind me, and get back to the novel I started and abandoned while working at the inn.

Bass River sunset 1

After the fire at my parent’s home  my mother has become even more disoriented. My dad spends his days fighting with insurance companies because there is still only a tarp on the roof of their condo. Since February 21st their home has been exposed to fickle New England weather. He’s exhausted and overwhelmed with bureaucracy and red tape. The temporary apartment rental they are living in is small and my mother is failing fast.

My aunt managed to have her moved to the top of the nursing home waiting list. A room became available on the Wednesday before Mother’s Day.

A short week later my brother-in-law texted to let us know my mom had been moved to a psych ward at a hospital in Providence. She wasn’t adjusting well to nursing home life. For a long time now, at sundown, that time of day when many Alzheimer’s patients’ confusion and agitation worsens, she would shout she wanted to die. Early in the day it’s just a trip to Paris or New York she wants. Confused or agitated or angry when other people are talking around her but not to her, she’ll stand up and say “I’m going to Paris”, and hobble on her bad knee to another room, only to return a few minutes later.

And who can really blame her? Who wouldn’t want to be somewhere nicer, in a place where she can recall our names and who she once was and the memories of a lifetime?

But this time, at the nursing home, she had a cognizant plan. She pointed to the lamp by her bed and said she could wrap the cord around her neck. They called an ambulance.

My hands were shaking and I had a lump in my throat. I thought about her in that ambulance, alone, arriving at a hospital psych ward. My blurry images of the place she was headed were based on movies like One Flew Over the Cuckoo’s Nest. I thought about my father who for so long had managed to keep her at home. The nursing home hadn’t reached him yet. He’s not always good with his cell phone. He may have accidentally shut it off or left it at home. I was afraid for him, for the ever present Catholic guilt he would beat himself up with, for the ache in his heart for this woman he loves and has worried about and cared for every day for the past sixty years.

Since I’ve been on Cape Cod, through foggy gray days or beneath blue skies, I walk the bogs, listening to the chatter of cardinals, robins, red-winged blackbirds, and swallows, their conversations so loud they manage to block the hum of traffic passing along Route 6 on the other side of the guardrail lined with scrub pine.

Walking the Bogs 1

Some days I am followed by a honking Mr. and Mrs. Goose. Let it go, let it go, the pair of Canadian geese squawk at me, walking away, stepping into the pond, and gliding off. Easy for you to say, I mutter.

geese over the bog

The wind whips across the kettle pots of sand and deep red vines, a wetland of early spring cranberries planted in water and organic matter. An osprey has built a nest on high. She is not happy with me for stopping to take a picture of her nesting, so she spreads her wings and circles her young, yelling at me to move on, her maternal instincts fired up. Her mate comes swooping out of the trees.

osprey nest

I hoof it back out onto the street where the air is heavy with the scent of lilacs and the wind whips through the crab apples, knocking off the flowering petals that float across the road like a winter squall of pink snowflakes.

crab apple tree

In the afternoons I read the biography of Dr. Gladys Iola Tantaquidgeon.  My younger daughter’s boyfriend lent me this book about his Great Aunt Gladys, who lived to be 106 and was the medicine woman of the Mohegan Indian tribe.

“We walk as a single spirit on the Trail of Life.” The Mohegan mission statement believes that we are guided by our past and the life of any one being is inseparable from the story of the people as a whole. Through their oral traditions they share the stories from one generation to the next and as her brother Chief Harold Tantaquidgeon once said, “If you can forget it, you never really knew it.”

“What would the New World scenes be without their human traditions recited as the ancients knew them to lift our imaginations above the land and sea into the clouds?…What link have we with the past?” ~ from the personal papers of Gladys Tantaguidgeon

We are all prisoners of human life but out on the cranberry bogs nature sustains me. However, I am left wondering about my mother. What about her stories? The mayhem of her mind? Her lost memories? She no longer has a link to her past. Or does she? As Lisa Genova wrote in Still Alice, “You’re choosing to dismiss what she wants because she has Alzheimer’s.”

Another word for a bog is a quagmire. An awkward, complex, or hazardous situation. Some things are difficult to write about.

Bass River Sunset 2

My sister arrived at the nursing home fifteen minutes before the ambulance. My mother had calmed down and was sitting by a window staring out at the pond. “I want to go to California,” she told my sister.

“I know you do.”

They both sat quietly and when the EMTs arrived with the stretcher my mother said, “I don’t want to go anymore.”

My sister reassured her it would be okay. They were going to help her. It would be like California.

I can’t help wondering what she means when she talks of California and Paris. I imagine they seem like heaven in her mind.

I wasn’t going to write about this. It’s too hard, it’s too personal, and for some too controversial. Then I read a recent blog by Dani Shapiro  who wrote this:

I spent two days of this past week in a locked Alzheimer’s unit at an assisted living facility, listening to my beloved mother-in-law scream in agony. I watched my husband, brother-in-law, and father-in-law be broken open again and again by the stark underside of love, which is loss. I wandered the halls and saw elderly people staring into space, or lying in their beds, or gazing at fish swimming around in a fish tank. They were all once active, vibrant people. It was impossible not to think: Is this what it comes to? Is this what it all comes to, in the end?

Which, of course, it does. ~Dani Shapiro, To Insist That Sorrow Not Be Meaningless

I thought about Gladys and how she dedicated her life to sharing the stories of her people in an effort to give meaning to the everyday lives of her family and her tribe.

There on the hill, our Mohegan life trails have followed clear and thorny paths, through simple and not-so-simple days, on a combined journey home and to forever. Ni ya yo mo. It is ever so. ~ Medicine Trail. The Life and Lessons of Gladys Tantaquidgeon by Melissa Jayne Fawcett

We all follow sometimes clear and other times thorny paths. Right now my path is twisting and turning but we must remember we are not alone. We all walk as a single spirit on the Trail of Life, and that is why some of us are called to share the stories that bring us together. Ni ya yo mo.

And yes, Life Is All This.

Bass River Sunset 3

***If you know someone who also has a loved one suffering from Alzheimer’s, please extend the trail and share this post. It helps to know we walk through life together.***

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10 thoughts on “Walking the Bogs: My Mother’s Alzheimer’s Journey

  1. Sheila, I have read nearly all your pieces and this is one of your best. Beautiful imagery, great photos, thoughtful prose and something that pertains to everybody even if they don’t recognize it yet. I loved the insight of Dani Shapiro during her visit to the nursing home and realizing that all those souls were once active vibrant people that were important in their own right. I have often had that thought myself and think of it often as I look at my own aging mother. Part of her great sadness is that she feels “not needed” any more or that she can’t contribute in a meaningful manner. I don’t see this changing soon. Great piece, loved it even if it is a little sad.

    Liked by 1 person

    • Thanks, Redhead. It seems the saddest pieces resonate the most. I find it difficult to write about my mother in the present, while all of this is happening to her. I don’t do it often but when I do it touches so many people.

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  2. Sheila, I have read all of your books and follow your blogs. Your writing is beautiful. I am so sorry about what is happening right now. As you and Maureen know, my journey with my mother was never
    easy. I’ve been through it all, multiple visits to Butler Hospital, assisted living, nursing home, the onset of dementia, incontinence, no longer being able to walk…my mother, struggling to remember what day it is, what she had for lunch, what she wore that day….horrible to watch, painful, sad. She died on March 23, somewhat suddenly from pneumonia. I guess this is part of the journey, I can only say that we are all experiencing the same loss at the same time in our lives (misery loves company, I suppose) and that I think that all we can do is offer prayers and hope that our parents are going on ahead of us to show us how to face the next phase of life. As my mother died…it took 5 days at Kent Hospital with the help of the most caring, compassionate Drs. and nurses you could ever hope to meet…she appeared to be peaceful and resting, almost calm. I never was fortunate enough to see this during any other phase of her life. Your mother’s legacy lives on in you and your sisters and brother. Keep writing, it is a gift and know that you are not alone. Jeanne (Lynch) Babula

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    • Thank you so much, Jeanne. I am so happy to hear from you. Maureen told me you read the blogs and the books. Please keep up the dialog here and on Facebook, if you’re on there. Out stories really are all one and I am forever grateful to Kyle Tidwell, my daughter’s boyfriend, and that wonderful book he lent me. It was a timely gift that brought the whole story together for me although where it goes from here I don’t know. It certainly won’t get any better. I am waiting for the day when my mother too will be at peace.

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  3. Glad your sister was able to get there before the ambulance. I always got to hopitals before my late mum got there. The dementia care home let me know so I coukd get there ready to greet her

    It takes a while to settle into care homes. My mum screamed and cried and then graciously accepted hers. In the last year of her life she became a new person

    I loved getting to share joy with this new person whom I loved and her face always lit up when I came to visit. “Now then”. That is what she said. But it meant so much. It meant she knew I was someone who loved her

    Liked by 1 person

    • “Now then.” That’s beautiful. I hope we get there. I’m visiting her this afternoon. From what I hear she isn’t doing well. My Dad is exhausted.

      My youngest daughter graduates from college tomorrow. The circle of life goes on.

      Thank you for sharing that. Even the smallest things matter. Now then. I will tell my sisters and brother that story.

      Liked by 1 person

  4. Sheila, I hope your visit today brings some peace to you, that your mom is calmer with her new surroundings…changes are always difficult for our elders, and that your dad is less overwhellmed by all the new tasks to his daily life. I have shared this post with my cousin who in on this same journey with her husband. Thank you for writing what is clearly difficult to write, especially in real time.

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