Keeping Things Fresh

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.

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My Caregiver Vacation

Day One, Friday

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.

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The Caregiver Con

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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

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Believe in Yourself

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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

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The Four Stages of Decline

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Over the weekend I had a rare opportunity to go for a trail run by myself, while our daughter Charissa sat with Cindy. I do my best thinking while hiking or running in the woods. This time I reflected on … Continue reading

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Fringe Health Benefits

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I continued to run stairs during the summer, on hot and humid days that were unsuitable for getting Cindy out. Since my outdoor activities with the pedicab and datemobile provide all my distance/aerobic needs, I use stair reps more for … Continue reading

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Preserving Dignity and other Caregiver Tips

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Since my last post Cindy improved a little bit. I can “walk” her again, rather than carry her everywhere in the house, though even more awkwardly and she becomes apprehensive when I do either. I have noticed that heat, whether … Continue reading

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Contingency Plans

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I heard a chuckle from Cindy as I pushed her in the datemobile (wheelchair) up the Haystack Mountain road. One might think this results from getting Cindy out in nature, but who knows. Cindy gives an occasional chuckle even in … Continue reading

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“There is beauty in ordinary things.”

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“There is beauty in ordinary things. Isn’t that the point?” That is the last line of the last episode of the last sitcom that Cindy and I will be binge watching together. The concluding sentiment has to be the best … Continue reading

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Caregiver Care

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The alarm on my iPad goes off at 7:00 am. I’ve been awake for a little while, which often happens when the days are long, but the alarm signals the start of my daily routine. Two months ago the routine … Continue reading

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