Wednesday, August 11, 2010

In heaven

Mom and Dad came over on Sunday, while waiting to get into the walk-in clinic. Mom woke up complaining of an earache. The clinic had a three hour wait, so Dad called my husband and I to see if they could stop by. We were free, and I was glad to see them both. I think it's a treat for Mom when she comes to our home, and it's nice to be able to offer her something as simple as conversation on the couch. It felt really comfortable. I fed them veggies and dip as I finished a batch of fresh bread sticks. Felt very domestic and proud to serve snacks to my parents.

Our two cats were glad to have more attention, and Mom LOVES it when they sit with her. They both joined her on the couch, one curled up on her lap in the crook of her arm, the other alongside her. Lots of happy squinty eyes and purring.

"Look Dad, the cats love Mom," I said.

We stood nearby and watched her pet them both, a little crammed in the corner of the couch, but happy.

Mom beamed.

She started singing in her best Frank Sinatra crooning voice, "Heaven. I'm in heaven..."


Saturday, August 7, 2010

Book Review: Twilight Travels with Mother

Twilight Travels With Mother: How I Found Strength, Hope, and a Sense of Humor Living With Alzheimer's

Mary Ann Mayo
Published in 2003 by Revell
250 pages

Mary Ann Mayo describes the 22 years her mother spent with Alzheimer's Disease, how it affected their relationship, and the impact the disease had on their individual lives. She addresses her own fears of having dementia upon turning 60, the age her mother was diagnosed. She incorporates her research on the disease with her family's experiences and shares information she wishes she had access to while caring for her mom. She also writes about ways to age gracefully and emphasizes the steps she's taken to leave no unasnwered questions for her own children.

Describing the emotional journey with her mother, Mayo writes of traveling on a winding road:
The pace was leisurely - meandering and lingering along the way. Interspersed thoughout and generally with no warning, a corner would be turned leading to a new precipice; some were steep, others gradual. Occasionally the decline proved a mere detour; other times it necessitated a complete remapping and reorganization of her journey. Unremittingly the voyage continued, with each course correction resulting in greater hesitancy, additional anxiety, and less joy (page 11).
Her persepctive as a daughter is valuable to me and I appreciate the personal experiences she shares (stories of her mother's behavior were the most interesting). Not everything in the book applies to me or my mom. One thing I'm thankful not to relate to was the change in her mother's personality as the disease progressed. She writes that throughout her life, her mother was typically passive agressive but pleasant. In the throes of Alzheimer's however, she became paranoid, demanding, and aggressive. Her mom even verbalized that she never wanted Mayo as a baby. Talk about adding insult to injury.

In the first few chapters, Mayo compares her mom's experience to that of her two aunts (one older and one younger than her mother). The oldest lived to age 90 with a sharp mind but unhealthy body. She was afflicted by a series of strokes over several years, but her body gave up before her mind did. Mayo's mother, the second-born, lived a healthy lifestyle and her body remained in good health, but her mind was weakened and eventually destroyed by Alzheimer's. Several minor strokes had a greater, more debilitating mental impact on her than her older sister's more serious strokes. The younger of the two aunts is alive and considerably well (at the time of writing) in her late eighties.

Of the three, she continues on, not having escaped dementia but somehow succeeding in staving it off to the end. Her sisters have passed on, one with a great body but very little functional brain; the other with a functional brain but a body that just quit working (page 49).
Comparison of these three sisters forms the basis for Mayo's research, as she tries to understand the influences on each one's health or lack thereof. While examining her relatives aging, Mayo cites the impact of family history, head injuries, education, and an Alzheimer's gene. With her extensive research on dementia, she quotes studies and statisics, but includes exceptions to every "rule."

I thought it would be easy to keep the content of this book at arm's length and not get emotionally overwhelmed because of the difference in age between myself and the author. However, Mayo spends so much time discussing how to age well, I started feeling like a hypochondriac: I turn 30 next year. It's all downhill from there! I also had a knee-jerk reaction of regret: did Mom have enough vitamin B12 in her diet? Was her depression deeper than I knew? Could this have been avoided? A growing body of information on possible causes and influential factors is mildly comforting, but a recurring message in the book is that every case is highly individualized. The mysteries of the disease don't make coping any easier.

Chapter four focuses on ways to push back the onset of Alzheimer's (including heart health, stress, nutrition, diet supplements, drugs, healthy habits, and faith) and chapter five covers the challenges of diagnosis. Chapters six and seven cover definitions of dementia and Alzheimer's, and the newest research on symptoms and medications (already seven years old, I imagine this information is now outdated, or at least incomplete). Chapter eight is about finding a balance between independence and adequate care (i.e. supervision) for a person with Alzheimer's.

Chapter nine discusses caregiving and the excrutiating task of being responsible for a parent who is less and less the person you know and love. Mayo shares aspects of her mother's progression through Alzheimers:
  • She believed Mayo was trying to steal the family farm.
  • She re-married several years after being diagnosed, but on the way to the wedding, forgot she had said "yes" to the proposal, and demanded Mayo take her home.
  • She had several behavioral problems at the care facilities she lived in (power struggles with staff, fights with other residents, etc), and Mayo was called on more than one occasion and asked to make other arrangments.
  • She told Mayo she did "everything she could to miscarry" when she was pregnant with her.
Despite these harrowing experiences, Mayo still writes the following:
When Mother died, I missed her. The unrelenting responsibility for over twenty years and the contrant second-guessing of what the best care might be had been part of our relationship, not its totatlity. Those who seek to avoid caring for a loved one risk missing an experience that has the portential to heal, teach and satsify (p 181).
Chapter 10 is titled Dying with Dignity. I couldn't read all of it. It's filled with hope and faith and gestures toward eternity, but it's beyond my ability to process right now. When the time comes, this will be a helpful resource, but I'm going to keep it on the shelf until then.

The most poignant message of the book is to live well mentally, physically and spiritually. Mary Ann Mayo sums it up well by stating, "Alzheimer's is a crash course in learning to live in the moment" (p 24).

Wednesday, August 4, 2010

Gardening for Mom

Today I'm going to Mom and Dad's to do some weeding in their flowerbeds. The dandelions were waist high last time I visited, and while I have some time off work, I'm going to pitch in. Manual labor is the easiest way to help Mom these days. It's so hard to take her on outings or spend time chatting because I lose patience after a few hours. I find myself avoiding eye contact because I don't want her to see how hard I'm trying to hold back tears or biting my tongue.

Mom has her support group meeting today, so I'll be able to garden uninterrupted. Last time I worked in the yard, she came outside to help, but needed constant supervision.

I tried to make it as simple as possible, by piling all the weeds I'd pulled on the lawn. Instructions like "put these weeds in the wheelbarrow" baffled her. She lifted the handles of the wheelbarrow.

"No Mom, put the weeds in the wheelbarrow."

She lifted the handles again. It must be the order of the words, I thought.

"Pick up these weeds right here, the weeds."

She lifted a handful of weeds out of the wheelbarrow and started putting them on the lawn.

Sigh. It's painful to see her try so hard and fail. I try not to think in terms of pass or fail.

Once we finally got a wheelbarrow full of weeds, I asked her to take the load to the backyard. She was gone for a long time. I ran into the house to use the bathroom. When I came back, she was in the front yard again, but no wheelbarrow.

"Where'd the wheelbarrow go?" I asked, without impatience.

She pointed to the backyard and muttered something about needing help (her speech has gotten harder to follow; sentence structure is a tough one for her these days).

We walked to the backyard together. Still no sign of the wheelbarrow. I asked her to show me where she went. She was at a total loss. We walked up the neighbor's driveway. There was the pile of weeds, near a lilac bush. It was out of sight until we were standing right above it.

Mom laughed at herself and tried to diffuse the awkwardness by saying, "Oh, your poor mother."

"It's OK," I soothed. "I'm sorry you had to go hunting for the brush pile!"

My mind raced. How the heck did she confuse our backyard with the neighbor's driveway?

I feel guilty about "avoiding" her today, by going when I know she won't be home. A family friend is picking her up at 10:30 this morning and I'll have about four hours to make some headway in the garden. It feels like the best I can offer right now. We both love gardens and flowers and I think it will mean a lot to her to be able to see her flower beds again. Maybe I'm just justifying my choice. Especially after all this recent blogging about her and reading books on AD (which I will review here), I don't have it in me to be emotionally available to her.

Hacking at weeds and getting dirty and uprooting overgrown shrubs seems more appropriate, at least today. The negative emotions need an outlet.

Tuesday, August 3, 2010

Is it too soon to tell this story?

I attended a writing conference last weekend. All 25 participants had a specific writing project in mind, either needing further refinement or ready for publishing. My project, still in conception, is to write about Mom, Alzheimer’s, and to tell my family’s story.

One thing I realized is that I don’t know where in the story I currently am. The conference presenters talked about book length in terms of word count and chapter summaries, and I honestly don’t even know if my whole story, which I will eventually write, has even happened yet. If I write a book, does it end when Mom dies? What a horrible thought. Does it end with her diagnoses, so I only focus on the “good years?” No, I don’t think so. What makes all those years good is knowing how much of Mom’s sweet spirit is still intact, even several years in to her diagnoses.

When I think about memoir, I usually think of authors as archaeologists, excavating artifacts and fossils of memory. The events worth writing about seem to be buried, embedded in layers of sediment and sandstone. But in my case, the topics and events I want to write about are still occurring My fossils are still wet and green. Nothing is petrified in this scenario.

The paleontologists at the beginning of Jurassic Park are working in a desert, covered in dust, using small brushes and delicate instruments, practically tweezing away the solid earth, encasing Velociraptor bones. This might be taking the metaphor too far, but instead of working with brushes in ancient burial grounds, I see myself as an author with a pitch fork in hand in a backyard garden. I'm still turning the compost of my life experiences, letting worms in for aeration, making sure raw materials have enough water and light and time for proper decay.

Maybe it's too soon to write. Do I have to know the beginning, middle and end of my story before I can begin to tell it?