HUMANITY HIKER

After feeding the cats I return to our “bedroom” to start Cindy’s day. If her eyes are closed, droopy or alert I go about my normal routine. On this day her eyes are fixed on the ceiling in a vacant gaze, giving me cause for concern. Before I get near Cindy I chat about anything that comes to my head. I turn on the music and overhead light for more stimuli in the room. Then as I draw near I announce:

“Hey, beautiful! I’m going to give you a hug. OK? Are you ready for a nice hug? Here I come.”

Whenever I see that gaze in Cindy’s eyes now I go into these precautionary measures. A few weeks ago Cindy also had a vacant gaze in her eyes as I was about to start her day.  When I walked right over and hugged her, she immediately went into seizure. Her face turned beet red, revealing intense physical and/or emotional distress.

I continued hugging Cindy while adding soothing words to lessen the seizure. I did not give her lorazepam after the seizure was over since they usually are weeks apart. Plus I have been giving the anti-anxiety medicine only at night; I keep Cindy calm by other means during the day.

A few hours after her wake-up seizure Cindy once again vacantly gazed at the ceiling. I played guitar as a strategy that has worked well in the past. Not this time, though. Her body again went rigid and she started to breath convulsively. I threw the guitar on my bed and rushed to limit the seizure activity from round two.

Now that I am concerned when I see Cindy’s vacant gaze in the morning we have reached another milestone in Cindy’s decline. I gauge her condition by her only tell-tale feature, her eyes. Her vacant gaze indicates some type of internal agitation, occasionally accompanied by spasmodic rigidity of her limbs. This upsets me even when seizure is not the result.

At times Cindy still has alert eyes. She will look around the room trying to make sense of what she sees. Sometimes they follow me or another person around. Sometimes the alert eyes are joined with a smile. Ironically, Cindy becomes most alert for the few days after a seizure, as if she has shaken the fog away from her head.

When Cindy is neither agitated nor alert her eyes are closed or drooping, revealing Cindy to be asleep or barely awake. Another milestone had been reached a few months ago when I let Cindy sleep whenever she wanted during the day. She still sleeps at night as well.

I know what to make of the vacant gaze … that’s bad … and the alert eyes … that’s good. I am never sure what to think or feel about the closed or drooping eyes. Part of me feels relief, even comfort, in knowing that Cindy is at least not going through some internal agitation. I occasionally imagine that she might even be having a pleasant dream. The other part of me recognizes the increased amount of time Cindy has a vacant gaze or sleepy eyes, rather than being alert.

I take pride in Cindy lasting so long in hospice care, now going on twenty months. I take pride in how the nurses and aides still marvel at Cindy’s appetite and skin. I take pride in Cindy’s will to live continuing indefinitely. She cannot become any more nonverbal, immobile or incapacitated than in this final stage of Alzheimer’s, but her appetite, health and will to live remain strong.

Unfortunately, a will to live can prevent dying but provides no remedy for being fully incapacitated, at least not for Alzheimer’s. A will to live does not reverse the declining alertness. A will to live may not even mean life is being enjoyed. Make no mistake, the decline continues. It’s all in the eyes. 

We were looking to carry on a new tradition this year on the date of our anniversary, September 19. Last year on that date I took Cindy to the top of Dennis Hill in the adult stroller. Our daughter Charissa with her husband Matt met us on top, delivering a picnic with food ordered from Woodcreek Pub and Grill. This September I planned a return outing to Dennis Hill, turning the event into an ongoing tradition.

Sometimes the fates conspire relentlessly against you. The conspiracy against the Dennis Hill tradition began on the auspicious date of September 11, when I was to donate blood to the Red Cross. For weeks my BP has been down where it should be; I was guardedly optimistic that my diastolic would meet the requirement for donation. On the other hand, I have white coat syndrome; my blood pressure is elevated by the anticipation of being monitored.

White coat syndrome won out on that day. I scheduled another appointment for September 17, two days before our anniversary. Pushing a stroller up to the top of Dennis Hill would be difficult if I succeeded at donating blood just two days prior. I made the first mental adjustment to our new “tradition,” by planning an outing to the ballfield instead.

On September 14 the frame of our adult stroller broke. I immediately sent a message to the manufacturer, Adaptive Star. Though their response was great I would need to wait for a new frame to be shipped. I could carry Cindy in my arms for a fair distance, but not to the ballfield, not after donating blood two days earlier. I started thinking in terms of having an anniversary celebration on our own lawn.

I understand the problem with planning an outdoor anniversary picnic as an ongoing tradition. Cindy now has been in hospice care for eighteen months. Such longevity has an indefinite feel. As long as her will to live thrives she could go on indefinitely, but probability suggests the tradition could be short lived. As a practical matter I intended to invite our long distance hiker community to the picnic in addition to our family.

We have a group page for announcements to our long distance hiker community, but I could not make an announcement until I knew where. I could not announce where until I knew the status of both my blood donation and broken stroller. On Thursday, September 17, the blood donation was successful while the frame was just then being shipped. I finally announced our anniversary plan for Saturday, to be held on our own lawn.

A two day notice is not much, but turned out to be too soon. I knew for days that Saturday was to be cool, in the zone where bringing Cindy outside depended on the wind chill. On Saturday morning I awoke to a forecast of high winds. Since our hiking friends did not have much notice anyways, I did not hesitate to cancel the invite in the eleventh hour.

I could make the theme of this “a series of unfortunate events,” but that would be misleading. If temperatures in the fifties with steady winds in double digits would be too cold for a lawn picnic, they certainly would have been too cold on top of Dennis Hill. Just a single factor, not a whole series, would have derailed our best laid plan.

I could make the theme of this “you can’t always get what you want but … you get what you need.” We still celebrated our anniversary indoors with family. For most of that time Cindy was fairly impassive, as she often is these days. Yet there were times she looked attentively in the direction of Lyla, our new granddaughter. How much recognition or perception was there in her gaze? I cannot answer that, but I know she paid more attention to Lyla than she would have to our hiking community, extremely dear to us that they may be.

Two years ago our family gathering would mean our three children. This year that number doubled with Charissa’s husband Matt, daughter Lyla and Serena’s fiance Enoch joining us on FaceTime. We got what we needed in terms of a special anniversary gathering, but there is something more to the theme.

Though both Cindy and I felt closer to our long distance hiker friends over any other community, there is no lineage involved in that belonging. There was no preceding community that gave rise to us long distance hikers. When the last of us pass away there will be no community to which ours “gave birth.”

Gathering around Cindy’s hospital bed, in our makeshift combo bedroom/living room, our family lineage hit home. My best laid plan went astray for Cindy, but we have family. Some day one of our children’s best laid plans for me will go astray, but they will have family. Some day Lyla will have a best laid plan go astray for her mother, but she will have family.

The best laid plans of caregivers often go astray. The series of unfortunate events, or single event, that thwarts our plans changes with the ongoing situation and times. What does not change for fortunate caregivers is the presence of family. May the circle be unbroken.

PS: The frame came for the stroller and it is fixed!

As a citizen from the land of steady habits, I call up the same type of music for each day of the week while I do the early morning chores. On Saturdays I call for the children’s music we played for our kids. This Saturday our favorite musician from that genre, Tom Chapin, was playing.

I change Cindy quickly and easily as she gives no resistance. From the neck down Cindy cannot move her muscles voluntarily. Above the neck she can lift or turn her head. She also can stick her tongue out. She did this as I moved her limbs for physical therapy and my face drew near to hers.

For years I assumed that Cindy sticking her tongue out was only a signal for food, even when there was none around. A few weeks ago I finally wondered if she wanted something else and kissed her.  I quickly discovered that an intimate kiss was precisely what Cindy wanted, perhaps has been wanting for years.

I admit to not feeling comfortable kissing Cindy as she lay helpless physically and verbally. In no way does this feel like “old times” for me. However, since I was Cindy’s first and only boyfriend, there can be only one image in her mind for who is giving her the satisfaction of a kiss. There still must be a vibrant memory, or at least a feeling, of one particular person residing in her mind. That thought is enough for me to always oblige her with a kiss, despite the awkwardness.

I change Cindy’s disposable mattress underpad as the last thing to do in the room before leaving to make breakfast. I used to shift Cindy to a chair in order to do this. Now I use another mode of affection.

I get the new underpad unfolded and within reaching distance on the bed. Then I sit on the swivel chair next to Cindy, at about the same level as the bed. From this perch I easily slide Cindy over and onto my lap, curled up with her right cheek against my chest. I switch out the old pad with the new. Then we spend one or two songs in this position while I rub her back and talk to her.

The song “Grow in Your Own Sweet Way” by Tom Chapin starts to play. This is my favorite of all the children’s songs when our kids were young; the only song that on occasion caused a tear to shed. The title says it all, a song about the innocence and growth of your little loved ones.

Listening to the song invokes bittersweet memories. I realize no time in our lives are as innocent or free of pain as they might seem to be in retrospect. Yet the juxtaposition of holding a declining adult in my lap, instead of a blossoming child, preserves the sweetness of the song without the promise.

Still, I am grateful for our two new modes of affection over the past few weeks. Cindy appears to be grateful as well, her cheek buried into my chest. Ironically, kissing my wife now feels awkward but holding her in my lap like a child brings comfort to us both. Both modes reinforce our love during our final journey together.

After changing Cindy and going through her physical therapy I put her “dancing shoes” on and swing her legs out of the bed. Her “dancing shoes” are a pair of sandals with rubber soles gripping the floor. Her sandals are not what you would want for actual dancing, but for Cindy they keep her feet in place and I can balance her weight over them. Even so I must plant each foot in the right spot and smoothly lift and transfer her weight from sitting to standing inside my arms.

Normally Cindy is six inches shorter than I am, but she slouches lower even with my support. Still, we are able to sway gently back and forth, this morning to a playlist called “Morning Acoustic.” My computer screen is blank, allowing us to see our reflections on the screen. I do believe this comforts Cindy further. I am grateful her head is so much lower than mine as we “dance;” I can shield my tears from her.

I keep saying there is a difference between depression and sadness. During Easter I saw a post, unfortunately without the foresight to bookmark the source, relating depression to the threat of resurrection. Depression occurs when someone has little hope for or even fears what may lie ahead; they even fear a resurrection. I assure you that is not me.

My life has been a series of welcoming the unknown; that has not changed. There was a time when I doubted my ability to care for Cindy at home until she passes away, but those doubts are gone. I handle her infrequent seizures now with a level head; I believe I can handle any of the unknown ahead and still maintain my health.

My tears are caused by empathy, sadness for Cindy, though not in the present moment. Cindy appears to be content with her face buried into my chest. In fact, I feel better by focusing on how Cindy must be feeling as we “dance.”

The tears are not even for how Cindy generally feels about her current condition. A few years ago a bout of self-awareness might have caused a tear in Cindy. More recently I see occasional looks of bewilderment, sensing that something is not quite right. Yet all along her affliction carries the blessing of not fully realizing the state of her decline.

No, what most often brings about sadness these days is empathy with the “past” Cindy. While I am doing everything I can to make Cindy’s life enjoyable, even succeeding to some extent, I cannot shake the realization that this is not what Cindy would want for herself. If “past” Cindy could see through my present eyes she would be overwhelmed with grief. Feeling this grief from a “past” Cindy causes my tears.

Ironically, I know that much of her grief would be the concern for how her illness was impacting others. I wish my mind could make “past” Cindy see that this has been no great burden to me. I know what must be done to maintain my health and I have been as conscientious about that as with caring for Cindy.

I am not afraid of any form of resurrection, or the unknown, or what life will be after Cindy. This is the ultimate test for why I know I can be sad but not depressed. As we sway together, cheek to chest, I hope the unknown is not burdening her either.