Full Circle

I stare at her face, trying to memorize the shape of her eyes, the color of her hair, the trace of her smile. I remember staring at the face of my newborn daughter the very same way. Etching her features into my brain, my soul.

Two days ago she slipped in and out of consciousness, disoriented when she woke, lucid at times. Today she is unable to speak, her breath ragged and shallow. Morphine and Ativan increased to every two hours. The pastors have visited, prayed with us. ALC staff drift in and out. Text messages from friends and calls from family keep my spirits buoyed. My husband, ever attentive, runs errands, walks the dogs, fusses at me for not eating. I will never be able to fully express my gratitude for the care we are receiving from hospice. The social worker visits with me often. The nurses are here around the clock, urging me to sleep when I can, run home to take a shower, push me to stay hydrated. They tend to Mom’s every need, bathing her, rubbing lotion on her skin, pampering and soothing as one would a newborn, tender and gentle.

When my first child was born I was totally unprepared for the amount of laundry one tiny infant produced. So too, Mamma’s laundry basket overflows. Blankets, towels, nightgowns. I drag another load down to the laundry room and just shake my head and smile. Who knew?

Mamma requested that music be played while she slipped away from this earth, and so the music plays on. Bach, Beethoven, Mozart. My girls call occasionally to tell her again how much she is loved. I kiss her forehead and tell her that we are ok. We are loved and cared for. She has nothing to worry about. It is ok for her to go, when she is ready.

We have lived a good life together, she and I. She can be proud of her many accomplishments, especially the family she is leaving behind. Yesterday was my birthday. What a privilege to spend the day with her as she prepares to leave me. Again, I am overwhelmed with gratitude for the time I have had with her these past few months.

This is the cycle of life, the celebration of the past and the hope for things to come, the joy of being.


Into the Unknown

Yesterday I slipped into Mom’s apartment as she napped. She roused and smiled at me. “Sometimes when I wake up I don’t know where I am,” she said. She did not appear to be frightened by this, just resigned to the confusion that engulfs her mind.

I hate that feeling, waking in the middle of the night, disoriented, unable to distinguish the door from the window, the room unfamiliar and foreign. Sometimes I feel that way even when fully awake. The uncertainty of the days, the marking of time, the relentless progression of aging, of dying.

“When she’s imminent we’ll have someone from the crisis team here on the floor, 24-7.” The Hospice nurse is soft-spoken but firm, reassuring. Good, good, I reply, mentally checking off another worry, as if my things-I-should-fret-about list could be shortened. I was with my aunt in 12 years ago when she died at home. The last few hours were agony as she woke from sleep, panicky, unable to breathe, her congestive heart failure and fluid-filled lungs mercilessly beating the life out of her. Hospice couldn’t get the Ativan to us fast enough, and I was helpless. I dreaded the thought of Mom going through that nightmare. So yes, this latest reassurance was welcome.

“Imminent.” I turn the word around in my head, struggle to find its context, its relationship to Mom’s current situation, today. What does that mean? Why does the nurse feel she needs to tell me this?

Just three weeks since she had pneumonia. I can feel and hear her lungs rattle when she breathes, she struggles for air. Pulmonary fibrosis and congestive heart failure, the double whammy. The doctor has advised us to take her off all medications, except for oxygen full time and morphine as needed. On the phone with the nurse practitioner, he too is calm, reassuring. Let nature take its course, as I recall him saying. Easy to be so clinical, so logical, so damn removed from the situation. “No!” I want to scream at him. “You don’t know her, you don’t know, you can’t know.” And, of course, he doesn’t.

And neither do I.

Summer Solstice

The banana tree outside my front door has toppled, broken, the enormous bunch of green fruit lies forlornly, upside down on the grass. My neighbor and I speculate on the cause, torrential rain, careless roofers perhaps. We decide to cut the fruit off and hope it will ripen inside. No harm in trying.

My glasses fog up when I walk outside. Despite the heat and humidity, Bella and I venture to the dog park where her companions languish in the cool mud while dog parents softly converse, beads of sweat run down my back, gritty sand in my sandals. Daily rain, thunder and lightning like I have never heard even when I lived on the prairies of Illinois. Summer in Florida.

Mom has pneumonia. Her cough rattles her small frame. A double whammy, her nurse tells me, congestive heart failure and pneumonia. No longer able to walk other than a few short steps inside her apartment. Hospice ordered her on oxygen full time. The nurse and I decide that there is no point in trying to get her to walk down the hall for a little exercise. Walking makes her heart rate soar, sitting depletes her muscles. Another toss-up. It’s always a toss-up. I find myself no longer able to parse out medical terms. Too weary, too panicky. The hospice nurse reminds me gently that Mom’s body is giving out, she may recover, she may not. “Are you trying to prepare me or reassure me?’ I ask. Both, she says.

At breakfast one morning Mom turned to me, “I think I have lived too long. But I guess the Lord isn’t ready for me yet.” I asked her if she thought her brother and sister were waiting for her. She didn’t respond. The conversation was forgotten. She finished her yogurt, took a few bites of toast. “I’ve had enough.” She eats less and less every day. This morning I arrived at 7:30 and slipped into the chair next to her at the breakfast table. “I don’t like this situation.” “What is it you don’t like, Mamma?” “I have no energy.” She looked at her breakfast. “Tell me what I should be doing.” I coax her to eat one more bite of toast. “What day is it?” “Friday,” she repeats after me, and then “What day is it?”

In her apartment the big blue oxygen machine hums its low monotone, rrrruuhhhhhh, chuuuhhh, chuuuhhh.  If my children were here they would surely have a name for this behemoth. The Big Blue Whooshing Machine. They would make light of it. I miss their creativity, their ability to fend off my overly-serious nature. There is a portable oxygen tank on her wheelchair. “You’ll learn how to change out the oxygen tanks,” the aide assures me. I am not assured. rrrruuhhhhhh, chuuuhhh, chuuuhhh

Bella and I arrive around 6:30 every evening for our nightly visit. The Big Blue Whooshing Machine hums, the small apartment crowded with her wheelchair and her walker. I lean in, my head against her head to speak into her ear, quietly remind her she has pneumonia and needs to rest. “What day is it?” she asks again. rrrruuhhhhhh, chuuuhhh, chuuuhhh. She is increasingly confused, anxious, “sundowning” the hospice nurse says.  rrrruuhhhhhh, chuuuhhh, chuuuhhh.  The TV blares the nightly news, the newspaper lies unopened on her lap, her traditional evening glass of wine clutched in her hand, untouched. Her eyes distant, unseeing. rrrruuhhhhhh, chuuuhhh, chuuuhhh.  rrrruuhhhhhh, chuuuhhh, chuuuhhh. The machine hums along, oblivious, as evening does, slipping away.

Small Victories

Despite overwhelming evidence to the contrary, Bella remains optimistically confident in her ability to catch a squirrel. She will watch intently, creep ever so quietly, only to have victory snatched away with the swish of a tail and a loud scolding from the branch above. To her credit, a few days ago she stepped on a gecko. She insisted that she meant to do it. We should all be so confident.

A relatively new resident in the ALC, Pat, a tiny wisp of a woman, had a stroke in February and nearly died. To her credit, she scoots up and down the hall walking in her wheelchair. Her speech, however, is slurred. It takes all of my concentration, and a bit of improvising, to understand her. And she has a wicked sense of humor. We laugh a lot. She is undaunted by her trembling, unsteady hands that make meals painfully slow. We should all be so determined.

Bella’s confidence. Pat’s resilience. And I have learned to put the foot rests on Mom’s wheelchair without pinching my fingers. Small victories.

Mom’s poor eyesight and hearing loss isolate her from fellow residents who greet her in the hallway. At breakfast I sit close to her and give a play-by-play. Lois is waving hello, Pat is asking if you enjoyed the scrambled eggs, Marian says that your hair looks nice today. She smiles but does not respond. After breakfast I walk with her to her apartment, arrange the newspaper next to her chair, settle her in her chair for a nap. She says, “What will I do when you’re not here?” I remind her that I am always here now, I am only five minutes away, and I will be back in the evening if not before. She will not remember this when I walk out the door.

Bella and I return in the evening. She wakes as Bella races in the door and nuzzles her toes, smiles as Bella stretches out lazily on the floor. We sit in silence, the newspaper unread on her lap, the evening news on the TV. She does not comment, perhaps even comprehend. When I leave I assure her that she is well cared for and I am only a few minutes away. “Where are you going?” “Where do you live?” “Will someone come in to help me?” “What should I be doing?” She is particularly anxious in the evenings. I wrap my arms around her bony shoulders and whisper in her ear, “I know, Mamma, I know.” I cannot take away her confusion, or allay my own fears, but I am here and we are together.

I’ve taken to going to church on Sunday mornings. Mom and my aunt attended a beautiful Lutheran church in Largo and had many friends there. My aunt’s ashes are interned in the memorial garden. The parishioners, as Lutherans do, are welcoming and respectfully unobtrusive. The pastor is compassionate, thoughtful and soft-spoken. While I do not embrace the theology, the glorious music and familiar liturgy provide a much-needed place of solace and peace.

Another mile-stone come and gone. Mom’s 100th birthday was on Monday last week, and oh, it was superb in every way! The entire week was filled with family, shared memories and laughter. On Saturday family and friends from near and far joined us for a luncheon in her honor. A beautiful event, happy, joyful. She truly glowed, warmly greeted her guests, gracious as always. We all were surrounded by love, enveloped with kindness.

Dementia and the ravages of old age may be the inevitable victors, but for now I am sustained and strengthened for the uncertain future. I am blessed by so great a cloud of witnesses. The communion of the present. A small victory.

Tales From the ALC

The morning sun creeps across the lanai as I work. This in itself makes me smile. A lanai, otherwise known to northerners as a porch, but in Florida we speak as Floridians do. There is a small banana tree outside my door. Geckos scurry under a palm, a squirrel scampers up the tree, Spanish moss hangs low from its branches. Bella basks in a sun puddle. My daily routine begins with a quick trip to the assisted living facility, home to work, a few walks around the block with Bella, and an evening visit with Mom.

Now that I am at the Assisted Living Center (ALC) every day the staff joke that pretty soon I’ll need my own name tag. They have become friends and allies, my immediate support system. The nurses and aides are nearly always cheerful, which is truly remarkable considering their job consists of working with often cranky adults with various degrees of dementia and physical impairments. Which, come to think of it, may not be that far removed from dealing with difficult people in a typical office job. But I digress.

Thanks to the pervasive loss of hearing, voices in the dining room are quite loud and it is impossible to not overhear conversations. I often stop at several tables to greet people, and inevitably they will rehash our chat after I have taken a seat with Mom across the room. It’s actually a fine way to catch up on the latest news and the latest brouhaha. Whenever the administration decides to implement a policy that the residents consider costly or unnecessary there ensues quite a stir. The angst and anger that unpopular decisions evoke will cause the administration to rescind any ill-begotten policy. Political activists should take notes.

In some respects, this journey was easier when I was 700 miles away. Then I did not know that the aide forgot, again, to put Mom’s earrings on, that the nurse wrapped her sore toe with so much gauze that it looked like her foot was twice its size, that on Sunday the usher in the chapel made her sit in her wheelchair in the middle of the aisle so as not to block “her” chair. I did not know then that Mom cannot stand on her own, or get to the bathroom by herself, that she does not remember to brush her teeth or wash her hands, and that she will stand in the middle of the room and not know where to go or why she is there.

Routine is our friend. Mom has a chosen seat in the dining room. She gets her hair done on Thursday at 10:30. She prefers blue slacks, a white tee and a blue sweater. Any deviation in the daily routine will throw her into a sea of confusion. Her podiatrist does not want her to wear shoes until her toe heals. This is a source of daily consternation. “Why don’t I have shoes on?” Constant questions: what day is it, what should I be doing, what day is it, how long can you stay, when are you coming back, what day is it, will someone come get me for dinner, what day is it…  Patience, patience, patience. One day last week, as we reviewed the day’s schedule for the umpteenth time, she looked at me and sighed, “I feel so stupid!” Oh Mamma, you are not stupid! I held her hand, kissed her forehead, and we were both sad. She is a child again, helpless, dependent.

But here we are. Bella and I in our home that is not home, routine that is not routine. Thankfulness and gratitude fill my soul for this day, this time. Just to hear her say every evening, “Will you come back in the morning?” “Yes, Mamma, every day now.”

The Journey

Fickle spring. Cold or hot, blustery rain or sun-drenched days swing wildly, maddeningly. The redbud in perfect bloom, purple flowers intertwined with early pea-green leaves, dogwood and crab trees dot the mountain, checkerboard of colors on a gray-brown canvas. Peepers echo through the hollow, song birds dart across the meadow, damp earth slowly come to life. Winter has relinquished her grasp, succumbed again to the inevitability of nature’s unyielding cycle. Life goes on.

Exactly to the day, eleven years ago, I packed my car like I was a teenager headed off to college, waved goodbye to my husband, and drove ten hours south to a new life in Tennessee. I had left my job at an agency that I loved (the new CEO not so much) and accepted a new job that I hoped would hold promise (it didn’t). Don stayed to put the house on the market, wrap up his job, and eventually join me in our new city. A week later the economy tanked. It would be another five years before our house sold. But we were together, with our dog, and that was all that mattered. I found a new job that I enjoyed, we settled into a little rental house, adopted another puppy, and eventually built the home in which we now live. Six years have come and gone. Our original puppies have crossed the rainbow bridge and puppies 2.0 version have won our hearts, chewed nearly every beach towel in the house, and deposited more dog hair, mud, slobber, and happy kisses than we could imagine.

So begins a new journey. I have decided to move to Florida to care for my mother. I found a place to live and made arrangements with my employer to take FMLA. Next week I will fly home to pack the car with summer clothes and a few essentials and make the 11-hour drive south. Don will follow in a couple days to bring Bella for support and companionship, then will return home to care for our house, tend the garden, and love on Cassie, his constant companion.

Decisions are never easy, this one life-altering and fraught with turmoil, but it is the right decision. I have wept and railed against the inevitable aging process that is destroying my mother’s body and mind, a process that will not stop to accommodate my time-line, my wishes, my life. Moving is inconvenient, expensive, disruptive. There are no good options, no happy compromises.

Mom’s congestive heart failure and dementia are progressing. Her skin nearly translucent, her breath ragged, unsteady. She needs assistance standing, bathing, dressing. I whisper a prayer of thanks as I watch her aides care for her. They are tender, comforting, patiently answer her repeated questions. Hospice nurses visit once a week and the social worker allays my fears. We commiserate, exchange worried, knowing glances as if by some heroic or supernatural power we can turn away, slow the time, delay yet another inevitable journey. Some days are better than others.

Tonight as we watch TV together she sleeps intermittently, rouses and asks if I am alright. She says, “I was asleep. I’m not a very good hostess, am I?” I chuckle and she grins.

I am here with my momma, just the two of us, again.

While You Still Remember Me

Appalachian spring. The weather is as variable and fickle as my moods. Nineteen degrees on Wednesday, by Sunday it is seventy. I am alternately content and at peace, then thrown into doubt and uncertainty. The pups and I walk under overcast drizzle or glorious sunshine. Lake houses, most of them empty still, waiting for residents to return. There is more activity these days. Neighbors returning from their winter retreats, northern residents come to inspect their vacation homes and prepare for the summer ahead.

I am happier now than I have ever been in my life. More self-assured, more confident. I have the capacity for great empathy and a thirst for new discoveries.  I am respected and valued in my job. My children are independent, functional adults with families and careers of their own (an outcome I occasionally doubted when they were teenagers). My husband is supportive and thoughtful. We share a lovely home with two rambunctious puppies. Yet, I find this stage of my life to be filled with contradictions and fears. I am uncertain of the future.

My life is here and there. I need to decide if I should move to be close to Mom, but when I start thinking all my brain produces is white noise. I am biding time, treading water, waiting for some signal from the Universe, the Holy-all seeing-all knowing, the Divine…well, you get the point. Yet I know that there is no right time. There will never be a right time. As a dear friend said, “You will never get this time again.”

I kept vigil at my aunt’s death bed many years ago. She looked up at me and asked, “Who will take care of your mother?” As Mom’s older sister, this had been her life’s mission. I will, I reassured her. That was her last request. I believe that I have done that. I have no regrets or guilt. I have, as several people have affirmed, been a good daughter. Mom did not want me to hover over her. She wanted to be as independent as possible for as long as possible. This is what she wanted, and I have honored her decisions. Perhaps now, as my friend also pointed out, this is the time to take stock of what my needs are in our mother-daughter relationship.

I spoke with Mom’s nurse this week. Mom’s dementia is worsening. She has lost the ability to care for herself. She does not remember how to turn on the lights or the TV. Fortunately, the staff at the assisted living facility are there to dress her, get her to meals and activities, then get her ready for bed. They adore Mom and remark on how sweet she is, how easy she is to care for. They are determined to keep her on the floor and not move her to nursing care. When I asked her nurse for a prognosis, she hedged, and finally said, “As a mother and a daughter myself, I will tell you to come as often as you can while she still remembers you.”

I call every morning and again in the evening. She knows my voice, is always thankful that I’ve checked in on her, and will remark occasionally that my phone call makes her feel secure. On the phone this morning, as Mom was saying the usual good-bye, she said good-night instead, then chuckled at herself. Just as always, her quiet amusement intact. For now. Will she know my voice tomorrow? Perhaps. I know that Mom’s dementia will take its own pathway, in its own time. There is no way to navigate its course, no insight, no preparation.

Yet, perhaps there is time while she still remembers.