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..."

Priceless.

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).

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.

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?

Mom in my memory

I'll always think of Mom in context. She was never not doing something productive, so my deepest impressions of her face and her form and her presense are all combined with a specific place or time.

• Watering her flower beds on Summer evenings; the sound of hose spray through open windows.
• The serious look on her face when she was driving and thinking of something else.
• Her basket of stationary and a continual arsenal of encouragement at the ready.
• Balancing her checkbook at the kitchen table with bank statement and calculator.
• The look on her face and lean of her head when she listened.
• The first silent breath when laughing hard.
• Tapping a pencil (eraser end) against her mouth while trying to remember.
• Meal planning calendar and grocery list on the fridge door with magnets.
• "Here kittykittykittykittykitty!"
• Her fingernails (I was always jealous).

Scent

Friday morning, July 9, 2010

I’m sitting on the couch in our living room with a cat on my lap, reading.

Out of the blue, I smell Mom. It’s very distinct, but I don’t know why. I’ve showered, put lotion with a little sunscreen on my face, and put my nightgown back on. Maybe that’s why: that combination of clean and sleep.

She smelled like cedar and lilac, like her hope chest and the little sachet she kept in her underwear drawer. Also, a faint whiff of ripe fruit and sour milk before showering.

The fragrance brings images to mind: her unwashed hair and wrinkly pajamas.

The unmistakable pattern of her breathing during sleep (in her nose, out her mouth, and the little catch in her throat when the air changed direction).

Warm blankets and nest of sheets before getting out of bed.

Bare feet in the hallway between bedroom and bathroom.

The perfect footprint left in her flip-flops.

Her and Dad’s bedroom with an open window and a fan on all night.
The hide-a-bed in the living room where she slept with me when I was sick.

Her jewelry box and the sad, beautiful music it played when the little key in the back was wound.

Cats we had when I was a kid who snuggled with us: Whimsy, Louisa, Cara. It was an honor to have a kitty sleep with me when I was the one they chose to be near. Two bodies up against each other, as comfortable as possible, sharing a common nest. That sense of being chosen, feeling warm safe and content is the best way to describe Mom’s smell.

Lost in her own neighborhood

On June 14, my mom got lost while taking a walk. It was something my family hoped wouldn’t happen, didn’t want to predict, but feared the day would come eventually. She doesn't drive anymore (and hasn't for about three years, since we found out her memory loss is actually Alzheimer's, and not just a goofy stage of menopause). She has always loved walking, and has a regular route she'll take (sometimes twice a day), just to get out of the house for a while. My parents have been in their home for 25 years, so it's a familiar neighborhood. Unless your brain is working against you and one wrong turn can throw you completely off course.

Dad left for work at noon. Mom was up, showered, and dressed. She was having a good day: did a load of laundry and washed the dishes, keeping herself busy. The weather was beautiful and she wanted to take advantage of the rare sunny afternoon (sunshine has been sporadic this spring). The caregiver arrived at 4pm to an empty house. She started making phone calls to friends, wondering if someone had picked Mom up for an outing and lost track of time. No luck.

My youngest brother came home at 4:30pm and started looking, driving on Mom's usual route and a few miles past that. He called my sister, who got the word to my husband. Wisely, Hubs didn't say anything to me until I was done with my last client of the day. I work for a financial intuition as a loan officer and was wrapping up a busy Monday: an application I loaded that morning had been approved and I was finishing paperwork so my eager client could go pick up his new car. We finished financing right at closing time. As soon as I locked the lobby doors, Husband followed me back to my cubicle (one of the benefits of working for the same employer as your spouse).

He said, "You should probably get your things; you're not going to want to work out tonight."

The look on his face got my attention real quick.

"They can't find your Mom."

My ears rang. I asked him to repeat himself.

I finished my end-of-day routine quickly, stuffed unfinished paperwork into my cabinet, and we headed to my parents' house out in the county. I tried to keep my imagination in check, refusing to picture any worst case scenarios. The scary feeling was physical: my head was spinning and my guts were churning. It didn't seem real. She might be two blocks away, she might be hurt, she might not even realize she's been gone long enough to cause alarm.

When we got to Mom and Dad’s, there were six law enforcement vehicles outside the house: Search and Rescue and several Sheriff's deputies. Dad pulled into the driveway a few minutes after we did, around 6:30pm. The deputy in charge came inside and asked Dad all the appropriate identifying questions: date of birth, height, weight. Any distinguishing features? What was she wearing? What’s her shoe size? Who is her dentist? We collected recent photos of Mom on the kitchen table.

The deputy recommended a radio-transmitting bracelet for Mom, to cut down the time of any future searches. He said, "It's the same technology that was used to track bears and wolves in the seventies." Great. "Don't tell Mom that," I thought. Dad asked for the informational brochure.

The deputy asked about any previous workplaces (we all stared at him blankly, thinking, "She worked here, she‘s always been a stay at home Mom"), friends or relatives she might be visiting, destinations she might inadvertently be headed for. He asked us to search every nook and cranny in the house, just in case. He said to search the perimeter and "outbuildings" to eliminate those options before the search really got underway. He said a border patrol helicopter was on it's way back to the area, available to help if the other officers and K9 search party didn't make any progress.

A search and rescue specialist came inside for Mom's white sweater (hung haphazardly on the coat rack; we knew she was the last one to touch it) and brought it to the search and rescue dog as a scent sample. The deputy explained that human scent is even more individualized than fingerprints. We saw the dog through the living room window on a long leash, RACING in big circles, plowing through the overgrown flower beds, bounding from front yard to back. The deputy said, "He gets excited because he knows this is real; it’s not training anymore. It’ll take five minutes or so for him to get some energy out and then focus."

The deputy described how big the search area was since noon was the last time anyone had seen Mom. "She could have as much as a 6 hour head start. That could mean 12 or more miles in any one direction, depending on how fast she’s walking." He was used to searching for 80 or 90-year-olds who wandered away from home or got lost outside their nursing homes, and stopped whenever their energy gave out. He wasn't sure how far away Mom may be, an able-bodied woman in her fifties.

I said, "Depending on how long ago she left, she may not even be thinking about the return trip yet. She's not aware of the time; probably still enjoying the sun. A two hour walk wouldn't be unusual."

We all took the deputy's business card so we could call when we found her. He went outside to make phone calls from his truck. As soon as he left the room, Husband said, "Let's be sure to drive in pairs, so one person is free to make the calls. Y'know, and not break any laws." We all laughed. Last week the state made talking on a cell while driving a primary offense. Oh honey, always so practical.

We disbanded to start searching. Blanketing the neighborhood were eleven family and friends in seven vehicles. Dad stayed home for updates. Husband and I drove east, since I thought Mom would probably want to stay in the sun. While he drove, I made a few more phones calls. Our friends at the local library hadn't seen her. Our middle brother in Seattle had been notified and he wondered if he should come up. We said no, there wasn't anything more he could do, but we promised to keep him updated.

We drove for about twenty minutes, maybe thirty. Every intersection felt like a gamble. I scanned side streets, trying to see it through Mom's eyes. Could she have thought it would lead her home? I looked closely around every horse pasture, knowing Mom's love of horses and the likelihood she'd want to feed them dandelions. There's very little foot traffic in the county, no sidewalks, and barely even enough room to walk on the shoulder. We only saw a few people on bikes. Someone on foot should stand out.

Then my sister called. "They found her." She didn't know any details, but she was calling our brothers next. "See you at the house."

Mom was 13 miles from home, almost to the Canadian border. A border patrol saw her walking slowly, holding her side. He pulled over and talked to her. An ambulance met them and gave her water. The deputy at home drove Dad to her. When he arrived, she was in the back of the aid car drinking water and resting. I was afraid she would be terrified, or ashamed, or oblivious. But she knew she had walked for a really long time. She was exhausted but appreciated the attention.

When we all got back to the house, in she walked, rosy cheeked and a little wind blown. She didn’t have a hat, no long sleeves, and no sunscreen. Her neck was almost purple with sunburn. She had a big smile on her face, knowing all eyes were on her. We had all just been at my parent's place on Saturday, for my youngest brother's high school graduation. She said, "I didn't know there was another party!"

Her feet were sore so my sister filled a tub with water to soak them in. She pulled off Mom's socks and put them in warm sudsy water. My sister is the kindest person I know. Mom guzzled water and juice, luxuriating in the pampering and enjoying her spot on the couch (you know how good it feels to sit down after a couple of hours on your feet? I can only imagine the relief Mom felt).

The officer gave Dad the brochure about the radio transmitting bracelet. He explained again how it is recommended for folks who are likely to wander off. I thought it was insensitive to discuss it front of Mom, but she listened to his description and piped up, "Do I get to wear one of those?! Oh goody!"

We all sat in my parent's living room for an hour or two, visiting, enjoying each others' company. We bantered and joked and did what my family does best: appreciated each other. As conversation wound down and we prepared to leave, Mom suddenly asked, "am I the reason we're all here?" We looked at each other before responding, not wanting to sound too alarmist, but nodded yes. "We wanted to make sure you were OK, Mom."

"Well," she said, "glad I could help!"