“Good night. Sleep tight. Don’t let the bedbugs bite. If they bite, squeeze them tight and save the blood for another night.”
I fondly recall my father saying that to me at bedtime, delivering the last line with an impish grin. I passed the tradition on, reciting both lines for our kids. I oftenwished them “sweet dreams” at bedtime as well.
Lately I am having what might be considered “sweet dreams” almost every night. Like the one where a hiker friend of ours showed me his artwork. On one page of a spiral bound pad was a Berenstain Bear type character nodding his head, on another page was a car backing out of a parking spot, both with actual movements as if they were gifs on a printed page. Pretty sweet!
There were other sweet elements of that dream, as well as the others I am having. They all involve some type of adventure, usually hiking, always outdoors. Many include Cindy partially recovering from Alzheimer’s.
The persistence of these “sweet dreams” becomes a little disconcerting over time. I am reminded of the Narnian island of dreams driving shipwrecked sailors crazy. They became desperate for the chance to sleep without dreams again. I am developing that same longing. They say dreams are the subconscious processing what the waking conscious does not or will not, but I get the message already.
I used to think about hiking every day until a few years into our marriage. Then I focused on the daily routines of family, community and work to the exclusion of past memories or future fantasies of adventure. I eventually questioned whether I would be long distance hiking again or not.
Walking across the country to reboot Cindy’s life and brain health revived my thirst for adventure. For the next few years I fantasized about future long distance hikes. Then the daily routine of a full time caregiver began to crowd out those fantasies once again, the cycle renewed.
Only this time I know the thirst for adventure will come back to me when the situation permits. Until then my subconscious dreams keep percolating what my waking conscious neglects. I suppose that being an adventurer defines so much of who I am that my mind will not, cannot, let me abandon that entirely. So I dream.
Ah, but why does Cindy’s recovery visit a few of these dreams … and why only a few? What does my mind need to process with her occasional visits? My best guess is striking a balance between hope and false hope.
Some people claim that false hope is better than no hope. Others warn not to encourage false hope. Based on personal experience, I side with the latter. False hopes are prone to being dashed, which can be devastating.
False hope for something in the future also detracts from living fully in the present. I trust that if you live fully in the present, the future will be better as well. On a long distance hike you focus on the journey, not obsess over the destination.
So I focus on my caregiver journey with Cindy and leave the future to my dreams, with an occasional miracle thrown in. Even so, I am nearing a threshold. I long for nights when, rather than “sweet dreams,” I can “sleep tight” … preferable without the bedbugs.
We may have gone for our last long outing of the year. Our adult stroller may allow us to continue on shorter outings as late fall and winter arrives, but I will have to balance the health advantages of being outdoors with the comfort disadvantages for Cindy. For now, the fall colors were vibrant still as we went on our ten mile route.
Cindy is most verbal during these outings, reminding me of our early days as a couple. Our circle of long distance hiking friends used to call her “Gabby Galvin” (her maiden name) for her ease and frequency of chatting while hiking with others. Usually she would talk about hers or someone else’s hobbies—such as cooking, gardening, pressing flowers—but not always.
During a town stop in the midst of a seven month hike Cindy caught up on the “news,” discovering that Cher had purple hair. That became her topic of choice for the next stretch. That she was talking to a bunch of unkempt, literally down-to-earth, mountain men/women did not matter. We never let her forget her obsession with Cher’s hair afterwards (mostly I never let her forget, but others as well).
Yet even when talking about the color of Cher’s hair, Cindy was pleasing to hear chat. A close friend of Cindy’s, from the days of raising our families, recalls how they would go for trail runs together. She reports fondly on conserving her breath during these runs, while Cindy would chat away as if they were out for a leisurely stroll.
Once Cindy’s cognitive decline started so did her chatting, an unavoidable consequence of people becoming less sure of themselves. As we walked across the country to reboot Cindy’s life people often remarked we must have much to talk about while hiking. My stock answer was we had little to talk about, since we both were witnessing the same things all the time.
Yet there were still moments of Cindy’s old chatty self, such as whenever we stopped to check the map. The conversation would be one-sided, my mind focused on finding our way while Cindy observed and talked about our surroundings. Our “conversations” went something like this:
My mind: (Where in hell are we?!)
Cindy: “These are nice flowers over here.”
My mind: (Oh, here we are. How did we end up here?!)
Cindy: “I am going to take a picture of these.”
My mind: (There’s no water for the next ten miles!)
Cindy: “What a colorful rock! I will add it to my collection.”
Cindy was one of the few long distance hikers who collected and packed rocks! Only now I was often the one packing them for her. No matter, we walked across the country to remove Cindy’s stress. Experiences and “conversations” like these seemed to indicate the strategy was working. I would carry any amount of rocks for that.
At this point in Cindy’s decline “verbal” means barely audible mumbling, void of distinct words. If Cindy was a mere acquaintance I pushed around in the stroller I would not have any idea what her mumbling was about. Given our past experiences of Cindy marveling at flowers and rocks, while I worried about being lost, I am fairly confident her mumbling while outdoors is a good thing.
Our ten mile route includes a side trip to Wood Creek Pond, a nice place to take a break. Wood Creek Pond was the setting for my blog post titled “I uv oo,” made a year ago. By that time she already was fully incapacitated and I had not heard her utter more than one word at a time. She pleasantly surprised me by instinctively returning my three word expression of love. I suspect being surrounded by natural beauty helped.
A similar thing happened a year later. These days I do not hear even a single word enunciated properly. However, as we paused to observe the fall colors I commented: “Isn’t this a nice place?”
“Yeah,” Cindy replied in a barely audible voice, but very distinctly enunciated.
Much of dementia follows a gradual decline, barely perceptible from one day to the next. Occasionally, there are markers of decline, such as the markers I noted for how far Cindy could walk. The decline in her gift for gab provides another set of tangible markers.
Thirty-five years ago Cindy was known as Gabby Galvin and chatted about things like Cher’s hair. Twenty-five years ago she loved to chat even while trail running. Ten years ago her decline had begun but she could carry on a one-sided conversation when moved by the beauty around her. A year ago she could utter a three word expression of love. Last week she uttered a simple “yeah.”
Taken in sequence these markers paint a sad picture of inevitable decline. Yet each one, considered only in the moment, provided a moment of elation. That is the way with Alzheimer’s, a condition for which a simple “yeah” will do.
4:12 am – I am awake. Whether Cindy woke me or not I seldom know for sure, but I do know she appears agitated, which sometimes occurs around this time of night. Her hospital bed does not align seamlessly with my regular bed but I am able to reach over and hold one of her hands. Her fist is clenched at first but over time relaxes and her fingers slip into mine. We continue holding hands even as one or both of us slip back into sleep. I awake again, find Cindy to be sleeping peacefully and withdraw my hand to assume a more comfortable sleeping position.
7:00 am – My alarm goes off. I quickly do the birthday rounds on Facebook, then carry my overnight urine bottle upstairs to dump the contents in the commode and add some more. I come back downstairs to feed the cats in the kitchen to stop their complaining.
I return to our “bedroom” and adjust the room from the “night arrangement” to the “day arrangement,” first pushing my bed back against the wall to allow maneuvering room on both sides of the hospital bed. Today I have Segovia playing on Amazon music. Sometimes I will pick an artist, sometimes a composer like Beethoven, but always a genre of soothing instrumentals for Cindy’s waking.
I turn my attention towards Cindy and tell her “I need a hug.“ Not “I want to give you a hug” mind you. I do what I can to make her feel like she is giving rather than receiving, even though she is fully incapacitated now. Usually she flashes a hint of a smile when I do this, but this morning something feels different. I see the hint of a tear and I sense she is experiencing regret, not for her situation as a whole, but regretting that she is incapable of controlling her arms to hug me. I proceed to change her as usual, then cheerfully suggest to her I ought to make us some breakfast.
7:36 am – Monday mornings I cook eggs to go along with toast, tea and a banana. If we have desserts in the house this is when I serve them. Today we still have some chocolate chip cookies our daughter baked for us.
8:03 am – I place the serving tray on the swivel table we use for our meals and sit in the chair next to Cindy’s bed. I put on the show that we watch for breakfast, which currently happens to be “Psych.” This is the perfect breakfast show for us, lighthearted and zany with a touch of romance. I put the towel I use for a bib in place and go through our eating routine: one bite for Cindy, one bite for me, one sip for Cindy, one sip for me, until we finish everything on the tray. I mean everything. I take delight in how much everyone is surprised by Cindy’s continuing appetite.
8:47 am – I help Cindy with her range of motion exercises: 110 repetitions of various stretches for her arms and legs. After the exercises I change her again, this time putting on her pants and “dancing sandals.” Fortunately, this morning we still have time for a dance before someone from town visits to keep Cindy company. I play the Temptations on Amazon Music and hold Cindy in my arms as we sway back and forth. I tell her things like “this feels really nice,” and “you belong in my arms.” Her face is buried in my chest but I still can see a hint of a contented smile.
9:16 am – The friend who is visiting Cindy arrives. This happens every weekday morning around this time. For the next two hours I wash dishes, tackle some household chores, then prep for lunch. About midway through the visit I hear: “There’s that smile! You’ve made my day!”
Every regular visitor has that same goal, to see a smile from Cindy before they leave. Usually, but not always now, she delivers. Her smile brightened days when she was healthy as well. I often joke about how I could charge admission for Cindy’s smile, at least for the folks in town.
11:17 am – After our guest leaves I figuratively cross my fingers as I go to change Cindy. This is often the time of day that Cindy has a bowel movement, but I must change her in time to have lunch before the home health aide comes (when I am lucky, her BM comes during the home health aide visit). Fortunately, I am able to change her quickly. We start watching a movie from our videotaped collection while we eat our lunch, consisting mainly of fruits and vegetables.
11:59 am – The home health aide arrives. She comes on Mondays, Wednesdays and Fridays. Our routine for the rest of the day will be different now from Tuesdays and Thursdays, when no aide comes, and from the weekend, when no visitors come in the morning.
The aide’s most important function is to sponge bathe Cindy, since we no longer are upstairs where we can shower together. This was the biggest reason for placing Cindy in hospice care, as part of the package for moving downstairs where I can get her outside more. An added bonus has been the braiding of Cindy’s hair after a shampoo. While the home health aide cares for Cindy I work in the kitchen, cooking up a big batch of chicken, broccoli and rice that will be our suppers until Friday.
1:27 pm – I return to our downstairs “bedroom” and sign our aide’s timesheet. She is both very warm and professional at her job and we hope she continues on with us. People from agencies generally are not as reliable as visitors from town, but the hospice program has proven different. I place my computer on top of the swivel table again and switch the TV input to the computer. I practice movements of the American Discovery Symphony, set to slides of our journey, like I have done thousands of times before. While I practice Cindy gets to view, perhaps relive, the most amazing of all our journeys together.
2:28 pm – After the third movement I check and find out Cindy needs to be changed. Practicing the symphony was also a means of stalling, to make sure Cindy is freshly changed before we go out in the adult stroller. I again put on her dancing sandals and we have another “dance” after changing. This time she buries and rubs her face in my chest. I do not know if this is an act of comfort or if her nose just itches.
2:43 pm – I finish strapping Cindy into the stroller and we are ready for the seven mile jog we typically do on the days when the home health aide comes. On Tuesdays and Thursdays we often do a ten mile route, the weekend whatever I feel like. Every outing is weather permitting; today is dry with temperatures in the seventies.
The stroller has an awning for the sun, but with a window I can see through. Cindy’s eyes remain open for the whole time we are out. Already the time seems long ago when I took Cindy out in the pedicab; people would smile and wave at Cindy and she would smile back. I do not see her smile during our jog but she mumbles occasionally, which I interpret as enjoyment with being outside.
4:19 pm – We arrive back home, easily negotiating the driveway and the ramp I built for the porch. My ineptitude as a carpenter is legendary, but I can build things that are functional. I carry her from the stroller to her bed through the porch door installed just for this purpose. I put on an episode of the Great British Baking show while I unwind from the jog, take a shower and get supper ready.
The last time I showered with Cindy was many months ago, which now seems like many years despite it being a chore. Meanwhile, taking a shower by myself has become one of my few simple pleasures. Of course, there was a time when taking a shower with Cindy also would be pleasurable, but the last time that happened was about a decade ago.
5:15 pm – We eat supper while watching more of the movie we started at lunch. In addition to some of the chicken, broccoli and rice I prepared earlier we also have our usual supper fare of Greek yogurt with chia seeds and apple cider with apple cider vinegar added. Though eating food is not a problem for Cindy, I struggle at getting liquid in her without it dribbling out of her mouth.
6:02 pm – I change Cindy and go through the range of motion exercises again.
6:22 pm – I put on a family slideshow and place my computer on the swivel table one more time to work on my symphony composition. I currently work on the second movement, the one about culture, the one orchestrated with percussion. My progress on this gives me my greatest satisfaction these days. If someone told my younger self I would compose a symphony someday I would be incredulous. Who has the patience for that?! My situation breeds patience. Silver linings.
7: 29 pm – I start to play the video game “World of Warcraft” (WoW) or, as I like to tell my family, I embark on saving the world. The appeal of the game is less about the quests and more about the exploration of new lands. I am a little embarrassed to admit I am a “gamer,” but this is how I address the explorers itch I otherwise satisfy through long distance hiking. The interactive video game also seems to command Cindy’s attention, keeping her awake better than the Netflix fare.
9:03 pm – I brush Cindy’s teeth, give her melatonin and do range of motion exercises one last time. I do these chores now instead of right before bedtime as a means of keeping her awake just a little while longer. I keep her awake during the day as much as possible so that she will sleep at night as much as possible. Sleep management is one of many distinct advantages of caring for Cindy in her own home.
9:19 pm – We watch a few episodes of a sitcom to wind down the evening for Cindy. She falls asleep while we do this, which is OK now. I should watch only two episodes before moving on to the final evening chores, but I am prone to vegging out at this point in our routine. I just can’t seem to leave the chair while a third episode airs. Still, I figure I do pretty well at avoiding the ennui that might overcome many caregivers.
10:43 pm – I put the room back to its night arrangement then wash the dishes. I practice guitar to strengthen my muscle memory for some riffs, also calming the minds of both Cindy and myself.
11:23 pm – I read the cartoon book Dilbert under soft light until I start feeling sleepy. Cartoon books are the best sleep aid for me. Each lighthearted “chapter” is but a few panels, thus not engaging my attention for long. I give Cindy a kiss on the forehead, tell her ‘I love her,” and turn out the light to close another routine day.
On Thursday, September 19, Cindy and I celebrated our 33rd anniversary. I planned to make this day special by pushing Cindy in the stroller up the old wagon road to the peak of Haystack Mountain. From there I would carry her up the stairs of Haystack Tower to the top, providing for her one last panoramic view of the town she loves.
I did some advanced preparation for this. Our oldest daughter and son-in-law were coming down for the occasion to help out as needed. A week earlier I went through a trial run of pushing Cindy up to the base of the tower. The day before I enlisted a friend from college, whom I had not seen for forty years, to stand in for Cindy as I practiced different ways of carrying her up a few steps of the tower. My remaining need was for the weather to cooperate.
Things do not always go as planned. In this case, the weather was too perfect, about 68 degrees, not a breath of wind, not a cloud in the sky. I faced the reality that, while carrying Cindy up the tower might make for a good story, she might not enjoy the experience of being carried up so many stairs. Nor could we spend much time on top enjoying the view.
I changed the plan, jogging with Cindy up to the broad table land on top of Dennis Hill. Dennis Hill does not provide the panorama of Haystack, but you do not need to climb a tower to get the view. Cindy and I spent well over an hour on top of Dennis Hill, eventually joined by our “support crew” bringing the food we ordered from the pub for a nice picnic. This was part of spending our anniversary as if we were “living each day as our last.”
The charge to live each day as your last prompts some skeptical questions. How does one do that? For how long is that realistically possible? Ironically, if one could do that every single day then doesn’t that become routine? Does living each day as your last become anticlimactic?
Routine has been my friend in this situation. Routine helps me do caregiver tasks in an efficient manner. Routine helps me incorporate brain health elements into each day. Routine gives me mileposts that keep the day from dragging. I do not know if I could do this without routine. Yet following a routine does not come to mind as the goal for living each day as your last.
In my mind, the desired alternative would be to “live each event as our last.” In May of 2015 we had a wonderful long distance hiker’s reunion and celebrated Cindy’s distinction as an Honorary Triple Crown recipient. She wept with joy at the presentation. In February of 2016 we had a large birthday celebration for Cindy, well representative of the various communal hats Cindy wore. She again was moved deeply.
These and other events were prompted by concerns of having limited time left. Indeed, three years ago I started planning for Cindy’s memorial service. I feel a little sheepish about that now but, on the other hand, this premature mindset dictates how I approach each event in our lives.
Three years ago we celebrated our thirtieth anniversary with me confessing I had doubts Cindy would last that long. In theory our 33rd anniversary should be our last, considering that Cindy is on hospice. In theory we could start treating each day as our last, as the probability increases for that happening, but who knows. No matter whether the time left is long or short, my approach will stay the same. We will adhere to a daily routine that makes the best of our situation, while experiencing joy from living each event as our last.
Everything is in place now from our move downstairs. Most mornings I transfer Cindy from the hospital bed in our “bedroom” to enjoy the outdoors on our porch. Facilitating this transfer is our new door to the porch that Cindy’s brother built for us.
Most afternoons we use the ramp l built for the porch to get Cindy on the road and about town. The final piece of the puzzle was an adult stroller to wheel down that ramp. For those that know me well, no need to snicker, the ramp actually is sturdy and works well.
The stroller makes a big difference over the wheelchair for both of us. The final leg of all our walks involve going up our stone driveway. In the wheelchair this often was difficult. Whenever the small swivel wheels hit a rock we would come to a jarring stop. One of those wheels blew out, similar to the shredded tires from an 18-wheeler you see on a highway. That probably does not happen often to wheelchairs, only those used daily for seven mile jogs.
The stroller is easier to push on all surfaces and grades. I had been constrained this summer to just one route when I wanted to go on a longer excursion. Since the arrival of the stroller I have expanded our routes onto more rugged surfaces, like the wagon road of a local Land Trust trail, and steeper grades, such as ascending to the top of Dennis Hill.
The stroller looks good as well. A neighbor hailed it as the Maserati of mobile seating. I immediately embraced that. Whenever townsfolk see us in the stroller for the first time I shout: “How do you like our new wheels!” I brag about our “Maserati,” adding how looking good and status are so important to Cindy and me. When people know you are unconcerned about appearances you can get away with that kind of “bragging.”
Returning to pragmatic considerations, the stroller provides a more comfortable ride for Cindy. She nuzzles better into the seat, with greater support to maintain fairly good posture. I am able to use pillows and a headrest to extend the support further.
I also put a stuffed polar bear in Cindy’s lap, carefully wrapping her arms around the bear and rewrapping them periodically if the bear slides out. The rotund bear is Kirk Junior. I tell people that Cindy either hugs or chokes Kirk Jr., depending on her mood and the ride I give her.
The inspiration for Kirk Jr. came earlier on with Cindy’s affliction. One day I saw her holding the stuffed bear in her lap, both looking very contented. Since then I have used Kirk Jr. both as a comfort for Cindy and to keep her clinched arms a bit more outstretched. I used to keep the bear between us at night as well, in order to create the space for me to sleep better.
There is a difference of opinion as to which one of our children once possessed the bear, but Kirk Jr. is our possession now. After Cindy passes away Kirk Jr. will undergo a gender change, an easy thing for stuffed animals. Then she will be Cindy Jr., accompanying me on adventures. At least a few of these adventures will involve the use of the pedicab and/or adult stroller to give rides to folks that could use them.
I woke up around 4 am thinking about a caregiver I met online whose situation is worse than mine. I mentioned this is an important ingredient for staying healthy, being more concerned for others than myself. Still, any health benefits would be negated if I continued to stay awake rather than get proper rest, also very important for brain health.
I sent the person an email to sympathize and offered some advice about melatonin. Melatonin has come up in conversation several times recently. Known mainly for sleep benefits, melatonin actually provides a variety of known “brain services,” minimizing seizures being one of them. I started giving Cindy melatonin after her first seizure and have been slowly increasing the dosage because of yet another hypothesized benefit, reducing dementia symptoms. I shared this info with my acquaintance in the wee hours and went back to sleep.
Thinking that melatonin is making a difference may be wishful thinking, but I do have corroboration. A string of morning visitors have commented recently that Cindy appeared to be more alert to them. No doubt that is why I could not go back to sleep until I sent my caregiver acquaintance my experience with melatonin. No doubt that also explains the dream I had once I got back to sleep.
In the dream Cindy was lying in bed and I was adjusting her pillow, everyday occurrences in reality. She pointed to her lips with the unmistakable message that she wanted me to kiss them. Now the dream was going beyond the bounds of reality.
Anything near Cindy’s mouth, including an intended kiss, causes her mouth to instinctively open to be fed. Our kisses come when I kiss her forehead, or when she kisses me on the chest as I hold her up to “dance.” The last real kiss on the lips was years ago, as was Cindy using her fingers to signal anything. The only realistic part was her inability to verbalize what she wanted. Still, I continued with the dream without yet being aware this was a fantasy.
I turn my back and in the blink of an eye, or in the scene change of a dream, I notice that Cindy was no longer in bed. I looked around the house, except the house was more like a nursing home ward. I eventually found Cindy wandering around aimlessly. Aimless wandering normally signals an advanced stage of dementia but, considering Cindy has not walked for over two years, this was a sign of hope.
A sign too good to be true, of course. A sign that alerted me to the fact that this was not reality, but a dream. I woke up again, now aware I was destined for a poor night’s sleep, in addition to experiencing the let down when one finds out they were mistaken about good news.
Currently I am giving Cindy 15 mg of melatonin. I plan to cap her dosage at 20 mg. The most serious side effect of high dosage is thwarting the body’s own ability to make melatonin. That is a side effect I gladly risk at this stage.
Do I think my dream will come true? Unfortunately, I do not. My review of the literature leads me to believe that dementia does not result directly from an invasion of amyloid plaques, but rather a metabolic poisoning from free radicals. No organ can withstand continued poisoning, not even an organ meant to neutralize poisons, such as the liver.
I encountered one academic in the literature who swears by the miraculous properties of melatonin for brain health, yet with only anecdotal evidence to offer. I give Cindy melatonin mainly with the hope that she does not continue to have seizures, or at least to reduce their severity. Hope springs eternal though, even if only manifested in dreams.
For our move downstairs a few things had to happen. Thankfully both Cindy and I belonged to various communities over the years. With a little help from all these friends our transition was smooth and near complete.
The first task was to remove two big couches from the living room where our new bedroom would be. A friend from our hiking community and a nephew on my side of the family came on a Wednesday evening to make this happen. After they left I realized more heavy items had to be brought up or down the stairs; a neighbor helped complete the moving the next day.
The main reason for the move downstairs was to get Cindy outside more, without having to carry her up and down the stairs. One thing that facilitates this is a new door from our “bedroom” to the porch, replacing the window that was there. Cindy’s brother and a friend did the installation, along with additional carpentry that needed to be done.
Being able to sit out on the porch is great, but of course I still want to get her around town in what is likely her last summer (though I’ve said that before). Our pedicab needed a variety of repairs, which required a truck to transport the cab. A good friend from our church community heeded the call.
Being downstairs Cindy now gets sponge baths from home health aides, rather than showering with me upstairs. Along with other factors this has increased the use of a salve for her skin. A high school classmate who is an herbalist and provided healing salves for our hikes made more salve that she quickly sent to us.
Our hospice nurse is a good friend of Cindy’s from her nursing days at the same agency. Norfolk is not her usual territory but she requested being our hospice nurse. In addition to handling much of the logistics for moving downstairs, such as getting a hospital bed in place, she has been a strong advocate for anything we think we need.
One of our needs was an adult stroller. We have continued using the wheelchair this summer, but the wheels of an adult stroller can bring us more places. The brakes come in handy as well, while Cindy will experience a comfortable ride. Unfortunately, acquiring the stroller does not depend solely on help from our various communities of friends. A process that started before April has not yet completed, in striking contrast to everything else that needed only help from our friends to get done.
Friends from among our neighbors, hiking, church, nursing and classmate communities, along with family members on both sides, came through for us. This is in addition to the friends who have been visiting Cindy for years now. I am grateful for all of it.
Cindy often dozes these days, but practicing the American Discovery symphony seems to wake her up better than most things I do. She even used to “sing” along with the lyrics I created for the Kindness and Joy movements, which always were touching moments for me. She no longer can do this, but Kindness and Joy still garner the most attention from her, probably because they both feature abundant slides with people smiling.
Working on the symphony has been my main activity as a caregiver. Practicing the symphony has been the main form of entertaining Cindy. I suspect that seeing slides of our 5,000 mile walk across the country, day after day after day, also helps her stay connected with the life we share.
Being active is one of the most important ingredients for brain health, which means the American Discovery project allows me to be a caregiver without suffering the common consequences. Having spent so much time on this also prepares me, in essence, for a new career to fall back on in my next life. I do not expect all caregivers reading this to start composing a symphony, but be mindful of potential parallels to your own hobbies and interests. If you can engage in a hobby that keeps you active, engage your loved one and prepares you for life after caregiving you come out of the experience all the better.
My “thesis adviser” requested I put together a brief to acquaint musicians with the symphony’s background and purpose before playing the piece. I share that brief here for those who have been interested in our journey. Please check out the link below to the new draft of Beauty, now with slides and brass ensemble. Let me know what you think.
AMERICAN DISCOVERY BRIEF
When my wife Cindy lost her job because of early cognitive decline, we resolved to reboot her life with a long distance hike along the American Discovery Trail. We walked over 5,000 miles from the Pacific coast back home to Connecticut, over a full leap year of 366 days. The journey lived up to the name of the trail we followed; we discovered America in ways few people experience.
American Discovery uses music, photos, sound effects and interviews to portray this journey across America. Five movements of Beauty, Culture, Kindness, Joy and Journey reveal different facets of discovery. As the symphony unfolds an additional theme emerges: a loving couple living life fully despite a tragic illness.
Beauty features a brass ensemble and classical guitar to portray natural landscapes across America, compressed into the arc of one beautiful day. The Serene start to the composition corresponds to early morning mists and pastoral landscapes starting a day. A Spirito middle section conveys movement of ascending through canyon and mountain landscapes, then descending along falling waters. The movement returns to Serene at the end with landscapes of lakes and sunsets in a winding down of the day.
As I look out the window from where we spend most of our days, out towards our Emerson Street neighborhood, I notice our neighbor’s car missing from the driveway across the street. The car should be there this time of day, but now disappears every morning, returning again every mid afternoon. The reason why I see no car makes me sad.
Though we do not get out during the winter, townsfolk drop in on a regular basis. I hear about what is happening in our neighborhood and town. Some of what I hear is sad, maybe not as sad as some of the tragedies in the world outside our bucolic area, but sadder than what I feel about my own situation. In particular I feel sad for people who are depressed. I know the bad things depression does to brain health; I know the bad things being treated with antidepressants does to brain health as well.
One of the songs I performed for my captive audience of one, before staring out the window, was “Pack up Your Sorrows.” The chorus goes “If somehow you could pack up your sorrows and give them all to me, you would lose them, I know how to use them, give them all to me.” That is how I feel as I stare out the window, wishing I could absorb enough sorrows to prevent depression in others.
I previously blogged about how I feel sadder for my daughters than I do for myself. I blogged about how I feel sadder for Cindy’s siblings. I even blogged about how I feel sadder for the cats! I am discovering my sadness for others helps me to defy depression. You cannot be depressed if you are focused on taking away the pain of others.
I usually do not feel sad for Cindy either. Angry at times, but sad not so much. She does not appear to be going through emotional pain as her life winds down. Instead, the evidence suggests she still can experience and enjoy the hugs she gets. She still enjoys visitors during the few fleeting moments she notices them. Many people wind down their lives getting no hugs at all; many people do not have visitors. I feel good about the love provided for Cindy by myself and others.
I know this will be the last time I stare out the window while performing for Cindy. Big changes are happening, brought on by the recent seizure and the advent of warm weather. We are moving downstairs to facilitate getting Cindy outside for one more summer. I doubt there will be another, though I have been anticipating Cindy’s imminent passing for about three years now. There may not be another winter either, in which case our living room will become Cindy’s final bedroom.
I divert my eyes from the window to Cindy. Feeling sadness for others may be a tonic for depression, but actually doing something for them in the present moment is even better. I get Cindy up to dance, a more difficult challenge since the seizure. She sometimes crosses her feet and cannot stand. If the right placement happens by accident we are good to go. Otherwise I must support the full weight of her body with one arm while I maneuver at least one of her legs with the other. If I take too long at this her body goes limp and I must start all over or give up entirely.
This time we are fortunate, Cindy stands with our first try, my arms providing full support. I have Motown playing on Pandora and we dance. Sometimes when we dance now I struggle to hold back tears at the plight of a once vibrant woman. My vulnerability lasts only a moment, until I hear a barely audible sigh from Cindy. I interpret this as a good thing. For the next few moments we experience a bliss that many never achieve in a typical day.
Yet I certainly would not describe our situation as joyous, particularly after the seizure and the anticipated move downstairs. I stare out the window again as we dance, thinking about the emotional pain some friends and neighbors are going through. If only they could pack up their sorrows for me. Strange that I should think this while fighting back my own tears, but I know why now. Sadness for others, taking care of Cindy in the present moment, feeling occasional bliss in our hugs, these are the ways I prepare for the big changes ahead.
As I was doing my town errands on a Friday, the day the local bank gives out delicious cookies, I was stopped and asked how Cindy was doing. Usually I answer with “still smiling,” but I could not say that this time around. Just the week before Cindy had her first seizure.
As we both laid in bed around 6:30 am Cindy went rigid. Sounds of distress came out of a mouth that appeared clenched in fright. Even scarier were her eyes. The right pupil seemed lazily directed to the right corner of her eye, while her left pupil stared forward, more in vacancy than attention.
I leaned over, caressed her head and kept repeating “I’m here. I’m here.” From watching too many crime shows I followed that with “Stay with me. Stay with me,” as if I was compressing the blood in her chest from a gunshot wound. This went on for a couple minutes.
Then the next phase began. She gasped heavility, exhaling through her lips forcibly, causing them to flap. She continued to look frightened. The gasping eventually settled more into light groaning with eyes closed, no longer a frightened look, but a burdened one.
At 7:00 am she appeared stable enough for me to leave her side and I called Foothills VNA, her former employer when she was a visiting nurse. At 10:00 am the on call nurse came out and took all of Cindy’s vitals. Everything checked out OK, including skin condition and color. We decided the VNA should start sending a nurse out twice a week. I got in touch with our primary care provider and daughters soon after the visit.
For the rest of the day Cindy napped mostly, wrung out from her ordeal. When I tried to stand her up a couple times to make a change she was totally limp. She was not interested in eating, for the first time in forever.
I realize from this ordeal that I had been making a plea deal with God ever since the diagnosis. Let Cindy go sooner or later, I will accept whatever the time is, as long as she goes somewhat peacefully and content. In exchange I will handle whatever is dealt to me.
Maybe Cindy still will pass away in peace, but the morning’s ordeal revealed that is no guarantee. Whenever I was not feeling concern for Cindy I felt anger, as if God was reneging on our deal. I trust I can handle anything, but I do not want many mornings like this; I really don’t.
In the following days there was a surprising development. While Cindy’s body continued to be limp, her cognition appeared to be improved. Rather than her usual state of mind being a fog with brief spurts of alertness, her usual state was now napping but with longer spurts of alertness.
I increased the frequency and amount of her stretching exercises. While she remains somewhat limp, there has been progress in muscle resistance and extension. She also has a new countenance about her during these exercises. She grimaces like a person working out, with a “no pain no gain” aura.
These new developments have given me the opportunity to tell Cindy she is improving. The last time this happened was when we were hiking across the country eight years ago. Being able to tell Cindy she is improving makes her visibly happy … and makes me happy.
I am not getting carried away with optimism. I know there will be a ceiling to Cindy’s improvement, and that ceiling likely will be lower than before the seizure. That means the accommodations I now make for Cindy’s limpness might be permanent ones. Some differences like changing Cindy in place, rather than bringing her to the bathroom, actually makes life easier. Other differences makes life sadder, like not being able to “dance.” Cindy seemed to really enjoy being in my arms for those “dances;” I really enjoyed hugging her
Sometimes I tell myself what I do is pretty easy, taking care of a warm and joyful woman. I am not telling myself that right now.
