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.
The past couple of weeks I struggled with some injuries. The first one was a strained pectoral muscle, which I first felt when I woke up in the morning, but soon discovered that how I moved Cindy likely was the cause. I changed how I moved her but the consequence to that was a sore lower back.
Not to worry, our daughter Charissa came to the rescue! She took family medical leave time off from work, using that to come down for the week and help transport her Mom around. I found that to be a better “vacation” than the week I took off for Florida.
Family are not the only people who come to our aid. Many weekday mornings townsfolk visit Cindy for two hours. On weekday afternoons we used to receive visits from an agency, but I stopped that a few weeks ago because the visits from our townsfolk friends worked better for us. I put out a new call to friends and neighbors for afternoon visits and within the first week four new faces dropped by on weekday afternoons.
When townsfolk visit Cindy I usually spend about 5-10 minutes chatting with them as well. I also recently performed my first home gig of the American Discovery symphony at the home of the Satherlies. These are my means in the winter of having a social life, so important for brain health. I must maintain my own brain health in order to care for Cindy effectively at home, similar to putting on your own oxygen mask first before assisting children. Even when our main concern may be a loved one, we must be able to function well to act on that concern.
One big reason for keeping Cindy at home is neuroplasticity, the ability of brain cells to continually rewire, even throughout cognitive decline. Every day Cindy forgets more than she remembers but, as long as she is happy, she still remembers something. Cindy may or may not know who I am as a set of memories, but I have no doubt she feels who I am. She may not remember she is home, but I have no doubt she feels she is home. Being home allows Cindy to have these feelings that make her happier.
I keep the importance of brain health, neuroplasticity and the oxygen mask in mind when I come across a news item like B. Smith’s husband. I never heard of B. Smith before, but apparently I am in the minority. Still, I figure I know as much about her anonymous husband as many of his critics, unhappy that he lives with both his wife and his girlfriend under the same roof.
The disapproval of B. Smith’s husband by an NPR commentator prompts me to speak out. The commentator encouraged her own father to place his wife in a nursing home when he no longer was capable of being her caregiver under his roof. She touted her father’s daily visitations to the nursing home as a clear example of how to remain true to wedding vows, her point being to contrast this with the scandalous situation caused by B. Smith’s husband.
Me? With the lenses I use I assume B. Smith’s husband wants to care for his wife at home for the same reason I want to care for Cindy at home, his wife’s quality of life is better that way. The girlfriend allows this to happen by providing the social connection needed to maintain his own brain health. She is the oxygen mask.
Nursing home care may be the prudent choice for caregivers who would not have a social life otherwise, but the depressing nature of nursing home visits are bad for brain health. I know, I have been in that situation with my Mom. She was placed into a nursing home for good reason, given our family situation at the time, and I visited her daily on my way home from work. For a few months she knew there was such a thing as home, but she also knew she was not there. Eventually, she got to a point where I knew she could “feel” neither home, nor who I was, nor happiness. She simply had checked out from life.
I would be fine with the NPR commentator making a point about her father now getting the social interaction he needed for his health. Like I said, I placed my Mom in a nursing home with no second guessing. Yet the commentator instead emphasized the importance of honoring wedding vows. Seems to me the Spirit of Love has been lost in the translation.
Instead of a girlfriend I live in a small town where a call for assistance brings immediate and substantial results, along with children who pitch in as much as they can. I live in a small town where I can perform my symphony in a neighbor’s home and then get an offer to be adopted. I have not needed a girlfriend in order to help me take care of Cindy at home, where my attentive care means she will continue to “feel” both me and her home. I have loving neighbors instead.
Yet I know some people with a good measure of fame might also have a shortage of loving neighbors. For such people a girlfriend may be the only available oxygen mask that will allow them to maintain their brain health and keep their loved one at home (though the question of whether fame is worth the cost of a neighborly social life is a valid one). When confronted with a choice between the Letter of the Law, wedding vows, or the Spirit of Love, the best possible loving care for a spouse, which should we choose?
I do not know B. Smith’s husband’s true motivation. He could be a cad for all I know. Certainly this is what the NPR commentator thinks. What concerns me is that we tend to project our own experiences and feelings onto others. That being the case, why would our society assume the worst about B. Smith’s husband? Why do we assume the Letter of the Law should be obeyed always, rather than consider our responsibilities to where the Spirit of Love might lead
My recent research on brain health, along with my previous research about how and why our social systems malfunction, suggests an answer. We are caught in a positive feedback loop of negativity. Various authorities, as well as anonymous social media memes, lower our expectations for humanity, if not as a direct message then by the fear and anger used as tactics. We live down to those lowered expectations, which in turn provides feedback to lower our expectations even more. Trapped in such a downward spiral of dimmed expectations we do not trust in each other to do the loving thing; we must trust instead to the authorities, laws and vows that will keep us in line.
Fortunately, we still can escape this downward spiral of cynicism at local scales. I trust in how the Spirit of Love infuses my family and neighbors; I trust in how the Spirit of Love affects my own care for Cindy. Having such expectations for my neighbors and myself I project those onto my expectations that the Spirit of Love motivates B. Smith’s husband. As a remote observer I may be wrong, but at least I am not lowering expectations for someone’s behavioral excuse. If we expect people to be guided by the Spirit of Love they are more likely to live up to those expectations, to the benefit of brain health, social health, the full potential of caregivers and the happiness of their loved ones.
I tucked Cindy in for the night, went around to my side of the bed and started watching our daughter Serena’s graduate recital streaming on the Internet. Her piece incorporates several different performance elements to convey the theme of coping to the seven stages of Alzheimer’s. I intended to watch a replay of the recital from the start, but I logged in near the end of the live stream. Serena beckoned the audience to join her as she repeatedly sang the “May the Circle be Unbroken” refrain as a mantra.
The lyrics of the original spiritual is about a mother who died and for whom there is “a better home awaiting, in the sky Lord, in the sky.” This might seem highly appropriate, except that Serena was indoctrinated with a version Cindy and I sang during our first long distance hike. We hiked with a group for whom the unbroken circle was a symbol of unity as we hiked the Appalachian Trail, helping each other along the way. The way Serena used the song at the end joined those two meanings, the strength a community provides for the journey of losing your mother.
After the live stream ended I waited a few minutes, Cindy peacefully sleeping on the other side of the bed, then started watching the posted video of Serena’s performance from the beginning. I knew this would be emotional for me, not so much due to the topic as the perspective. As Cindy’s caregiver I am too focused on the daily tasks, not to mention the warm hugs, to be consumed by the tragedy of our situation. Only when I view my situation from the perspective of another do I feel like I am in tragic situation.
Serena started her performance with a different song, the Appalachian folk song called “Cindy.” I sing this to Cindy often, even more so these days, including the verse I made up: “If I had a penny for every word she spoke, she would not have to worry about me being broke.” Serena recounted how she and her Mom would give each other a look when I sang this verse, the roll-your-eyes look, the “there he goes again” kind of look, the type of look two close friends might give each other.
The single most memorable moment for me came when Serena expressed her main regret. She was losing her Mom just as her college friends chatted about friendships blossoming with theirs. Serena regretted that she was deprived of becoming best friends with her Mom, as she knew she would be. I felt the tragedy of her regret deeply.
At first I thought I was sympathizing with her regret from a remote perspective. For the most part I have no regrets about my life with Cindy. There were a few items on our bucket list we never crossed off, such as getting to see Alaska together, but I imagine most people fail to cross everything off their bucket lists. On the other hand most people do not live life as fully as us, a life full of adventure, a life full of community, the type of community that accompanies you on a journey of loss. I am content about our life together; perhaps that is my own coping mechanism.
Once a significant thought enters my head it digs deep into all the recesses, attempting to explore all the angles. In this case I began to realize one regret I felt about Cindy’s tragedy early on. As we walked across the country Cindy often exclaimed: “I can’t wait to have grandchildren.” I can picture the smile on her face and aura of joy whenever she expressed this sentiment. Though Cindy’s cognition was improving during our long distance hike, I still had doubts her wish to experience grandchildren would come true.
I experienced sadness, anger and other coping mechanisms featured in Serena’s performance over that regret for Cindy. She would have been a great “Nana,” just as she would have been a great friend to her daughters. My perspective became less remote, I knew personally what Serena felt.
That was not the only important angle to this best friends theme looming in my head. I once anticipated becoming best friends with a family member, but that never came to pass. Love and respect has grown between us in recent times, maybe we are on the right tract, but best friends we have yet to become. I never imagined becoming best friends with my daughters because, well, they had each other … and they were going to have their Mom.
Throughout the circumstances of Cindy’s affliction that has changed. I have grown closer with my daughters; I suspect they feel the same. We may not be what any of us originally had in mind in terms of family friendships, but we enjoy and support each other fully. Tragedy makes or breaks you. We are doing well, all things considered.
Serena displayed emotions of anger, sadness, regret and frustration throughout her piece. There were moments when she could not hold back tears while “performing.” Yet these were not the coping mechanisms her audience experienced in conclusion.
This time near the end I could see that, before singing “May the Circle be Unbroken,” Serena shared her Dad’s philosophy about wishing others to “be well,” rather than “be safe.” She guided the audience up on stage as she sang, with smiles and holding hands. Figuratively and literally, they became a community supporting Serena in the loss of her mother.
As her community formed an arc at the back of the stage, Serena ended the program by wishing them all to “be well.” These became Serena’s final coping mechanisms. A supportive community of long distance hikers and a desire to live well also happened to be how Cindy and I began our journey together. That is how we continue our journey. May the circle be unbroken.
I have not posted for many weeks because of practical and technical difficulties. The practical difficulties stemmed from an event filled December, including a week off, followed by less companion coverage in January. During this time I reflected on how my situation brought about some rash behavior in 2018. My time off did not rejuvenate me as a caregiver, but I gained insight for regaining composure in 2019.
Three years ago, before Cindy’s 56th birthday, I confided to people that Cindy may have two months or two years left. Two years ago Cindy no longer could walk on her own and I continued predicting she had “two months or two years left.” During 2018 Cindy’s further decline was minimal. She started the year with chewing and swallowing being her only capabilities, she ended the year the same way.
My assessment has changed because of the minimal further decline, now thinking there always may be another three years left. Before 2018 I apprehended whether I could handle whatever new challenges Cindy’s further decline would bring. Now I apprehend the growing sameness of my situation. Attempts to shatter this sameness caused my occasional rash behavior during the year.
Sameness crept into the projects that were keeping me active. New learning and critical thinking important for brain health gave way to rote learning and repetition. My two biggest projects during this final journey of ours are the American Discovery symphony and this blog. For 2019 and beyond I need to come up with more ways to keep things fresh, to learn and do new things with these two projects.
All five movements of the symphony were completed for guitar and synchronized with slides for many months now; all I have been doing is practicing the guitar parts along with the slideshow. For 2019 I will download music composition software and start to score the symphony. A score is the written language of music. Learning new technology and a language are both good for brain health. I look forward to getting this process started, under the guidance and assistance of my “thesis adviser” for this project, Kim Scharnberg.
Now that I think in terms of “another three years left,” I look forward to performing the symphony in 2019 in rough draft version, rather than waiting until final completion. I will start out with house gigs for friends and family that have helped us out over the years, providing me a social life which will be good for brain health as well. The first one will be this Saturday, for Dot Satherlie, a 94-year old dynamo who has come to visit us the longest. If you are in the area and want me to perform at your house on a future weekend let me know.
As for this blog, something needs to change with this as well. The growing infrequency of my posts during 2018 reflect the sparseness of new information about brain health or new inspiration from our situation to share. I have ideas for where this blog needs to go, both to benefit others and myself, but no doubt some trial and error will be involved. There is one inspirational post left I want to share; after that, we will see.
Speaking of the blog, one of the technical difficulties was advertisements being attached to the email notifications for subscribers. Supposedly, this should be remedied according to the advice given me by tech support, but I am skeptical. If you are a subscriber and still find advertisements attached to your email notification for this post, let me know. If you have not subscribed, keep in mind that subscribers will help convince publishers a book should be published about our final journey.
One of my rash behaviors in 2018 was rushing to get a live-in caregiver under the Caregiver Homes program, as we did once with our daughter Serena. The program offers the caregiver about $1200 a month of nontaxable income. I still hope to accomplish that for 2019, but with a more cautious approach. Experience is not needed as I will do the harder tasks. I am looking for a female non smoker. Friends or family preferred, but not a hard requirement.
May 2019 bring social, positive and active changes for you also. Live well.
Traveling to Florida was much easier than last time, going through airport security and using public transportation just by myself, without having to guide Cindy through everything. Well, easier until I reached the end of the line with public transportation. I discovered that this “other” resort included on our timeshare, which I was using for the first time, was located two miles farther south than the last bus stop.
Around midnight I got off the bus with my luggage and jogged the two remaining miles to the resort. No, I was not jogging for fear of muggers, I was jogging because of the rain and the lightning that started around the same time I got off the bus. I shared this experience with a friend and got a surprise response. Rather than any sign of sympathy she declared:
“That sounds right up your alley!”
You know what? She was right. Jogging two miles in a rainstorm at midnight, while carrying luggage, was the highlight of the trip. That is who I am.
Day Two, Saturday
I did what we usually do the first day at our resort timeshare, tour the property and lounge around. Considering the recent lack of sleep some lounging was necessary. You might think lounging was well-deserved even, having come down here for respite as a caregiver. Yet I hated it.
Saturday was the worst day of the “vacation.” Some of my cranky disposition may have been due to lack of sleep, but I discovered throughout the day that being inactive is not the tonic needed when a burden skulks around in the mind. Plus, keeping active is who I am.
Day Three, Sunday
I remedied Saturday’s ennui by laying out a schedule to follow on Sunday. I felt much better in the morning, leading up to my first workout in the fitness center. I really looked forward to what this workout might show me about my conditioning.
My body fat and cardiovascular fitness has never been better, due to pedicab pedaling and running stairs, but how does this compare to my fitness before I became a caregiver? When I used the aerobic machines at a gym my measured output would be around 900-1,000 calories per hour. Since my workouts lasted up to 90 minutes my calories burned used to be as much as 1500 for one workout.
As soon as I started the treadmill I knew my performance on these machines had been enhanced. I cranked the machine to the highest resistance. I jogged. I ran. I was running around 8mph up an 8% incline. I was kickin’ a**! Then my Achilles’ tendons felt struck by a sledge hammer. I discovered I have a younger person’s fitness trapped inside an older man’s body. That is who I am.
Day Four, Monday
During lunch time I used FaceTime to video chat with Charissa and Cindy back home, as I had been doing every day while down here. Charissa does a terrific job of being cheerful and positive. I really am impressed. Yet Cindy’s countenance reflects the inner discontent she must be experiencing. When I am there I usually sit to her side and do not get the full effect of this countenance, or perhaps I have grown numb to it in my daily caregiver routine.
For the afternoon I went for a long walk, or a long gimp would be a better description. Most of the walk covered all corners of the resort property, but I also went off property to eat supper at an island grille. I used my plethora of one-liners to bring a smile to the waitress, as is my custom with or without Cindy present. I figure they are there to enhance my experience, why not return the favor?
This time I felt a little awkward. The waitress was attractive, I would guess in her forties. If I were to use these same one-liners a few months from now will I be flirting? I am not sure what to make of that. Nor am I sure what to make of our timeshare. I fancied I could continue to use our timeshare as a writer’s retreat, but witnessing all the couples and families enjoying themselves during my walk makes me feel out of place. The reality is once I step outside my house I effectively am single. That is who I am.
Day Five, Tuesday
Charissa contacted me before our appointed FaceTime hour. She was worried about Cindy, who could not be shaken out of a sleepy stupor. Charissa was almost in tears over this. Was Cindy transitioning into a permanent sleep?
I was not quite as alarmed. I have seen Cindy abnormally sleepy before, due to various reasons. Still, without being present to make my own assessment my mind prepared for the worst. I started formulating strategies for going home early.
There are dippers and plungers in life. The dippers get their toes wet first as part of a slow entry, the plungers dive right in. Sometimes we do not have a choice in the matter. Most caregivers for dementia patients are dippers, gradually adjusting to continual new norms for behavior. In contrast, circumstances have plunged Charissa right into the caregiver role.
Later in the afternoon I find out the ship has been righted, but I still feel concern for Charissa with the role she accepted on my behalf. Relinquishing responsibility does not come easy for me. I prefer the buck stops with me, especially with someone as important as Cindy. I would not mind at all returning to Connecticut early; I probably would feel better. That is who I am.
Day Six, Wednesday
FaceTime with Cindy and Charissa is on a much lighter note. Cindy’s long time friend Kim was there. In fact, Charissa practically gloated over all the visitors and aides that would be coming today, along with meals they were bringing or cooking. Cindy was more awake, though grew sleepy as I talked.
Am I jealous of Charissa’s extra support and cooked meals during her caregiver stint? Of course not. Though neither do I feel like I am in an enviable position myself. This caregiver vacation has served as a time for reflection but not rejuvenation. Honestly? I would need to go hiking for a week for rejuvenation, or maybe spend a week in a mountain cabin, or maybe have companionship. That is who I am.
Day Seven, Thursday
My last day at the resort featured heavy rains, flooding and even tornado warnings. I spent the whole day in my villa. Unlike Saturday, I avoided the feeling of lounging by working on a few different projects, this blog post being one of them.
I do not feel antsy to get back tomorrow, but neither do I feel reluctant to leave. This has been my existence the past few years, a surreal existence with muted highs and lows, equivocations over the meanings of everything, feeling good and bad all at once over everything I do, the existence of a caregiver. That is who I am.
Many people have expressed their satisfaction that I am leaving the state on Friday. I have not taken offense at their apparent eagerness for me to leave town; they all claim I need a break as a caregiver. This past … Continue reading →
During our walk across the country our motto was “Believe in Humanity.” I printed this on T-shirts for sale, to help fund our walk. Ironically, I gave away as many as I sold in thanks for the kindness bestowed upon … Continue reading →
