Optimism about Things

It is hard to do each day with a Parkinson’s patient but if you allow yourself some time you can find optimism in the days ahead. This cartoon – published Jan 17 in the Cincinnati Enquirer – struck a cord in me.

Contagious Optimism

Stephan Pastis and his “Pearls before Swine” is a favorite comic strip of mine. I have not seen the alligators and neighbor Bob for awhile but the sarcastic rat and the naive pig are also favorites. In the gloom and doom of care-taking the characters provide both laughter and insight.

Enthusiasm, Optimism and Fear

Enthusiasm for life and all that it brings may be dismissed as naivete by some. Much like laughter it can be contagious. When I first retired from what I think of as my real career – earning a living – I had very little to accomplish with my day. I began to walk around the neighborhood. At the time we had a house in the Cincinnati urban area known as Pleasant Ridge. We were located on top of the hill very near where the topography starts to rise into the next neighborhood Kennedy Heights. P-Ridge is a very walkable neighborhood in Cincinnati proper with few people walking in it but as I walked more and developed several routes, all intended to remain on the top of the hill, I discovered in myself an enthusiasm for walking the neighborhood to enjoy other folks gardening efforts, the fresh air, the sunshine and simply being out.

I spent the first summer of retirement walking about three days a week. My walks became longer as I got more fit merely by walking. My favorite route took me through four city parks at a length of just over five miles. Occasionally I would chat with the guys mowing when they were taking a lunch break. (A handy feature of walking through a park is there are many picnic tables to sit at and simply enjoy nature.)

When I visited my family doctor during one of my twice yearly visits, he did not say hello, he blurted out – you have lost ten pounds! Huh! His optimism was contagious. We continued our conversation with various medical topics but at the end he encouraged me to keep it up. I have since discovered that I am a fair weather walker but I have not lost my enthusiasm. These days I am still hunting for a good route in our new neighborhood.

Enthusiasm breeds optimism. Optimism for one aspect of life spills over into others. Cheryl has some adjustments to her meds which seem to be helping her. Reduction in one. A slight increase in another. The result is that we are both sleeping better. It seems that things are looking up. Optimism.

There is a prayer — God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference. This could as easily read; Lord, you know all things, instill in me the optimism to accept those things over which I have no control; the enthusiasm to change those things over which I have control; the ability to discern those things. In many ways optimism about life is an acceptance of one’s life situation. What is in front of us is unknown. What is behind us is nostalgia. What is here and now is what we have to deal with and understand and make the best of. It is exciting to do that every day. Optimism.

Optimism gives us the courage to do what is necessary to finish the job. There is no manipulation in us by another force. Self reliance and optimism drive us to succeed. Failure is merely a lesson. Fear and pessimism are a capitulation.

Next time you’re found, With your chin on the ground
There a lot to be learned… So look around

Just what makes that little old ant
Think he’ll move that rubber tree plant
Anyone knows an ant, can’t
Move a rubber tree plant

But he’s got high hopes
He’s got high hopes
He’s got high apple pie
In the sky hopes

So any time your gettin’ low; ‘Stead of lettin’ go
Just remember that ant!
Oops, there goes another rubber tree plant
Oops, there goes another rubber tree plant
Oops, there goes another rubber tree plant

….

Oops, there goes another problem kerplop

lyrics from the internet of all knowledge…

… An old song by Frank Sinatra — optimism and tenacity

Along with optimism for the outcome, one must be tenacious and follow through. Each day, take another step.

Giving care to a loved one provides one with the opportunity to show grace and grow grace within oneself. I believe this and each new day is a chance to help Cheryl and understand the gift that God has granted to me. That understanding is still and may always be a work in progress for me. Many of her recent and current symptoms include rapid switching between emotions. This journey is delicate and the stepping stones available have little illumination. Those steps have no outline. Nothing to make them stand out as the way to proceed. Moving forward step by step is tenuous and delicate. Feeling for lose stones takes time.

I tell myself, do not fear what comes today but be aware of what may come today. Do your best and remember God is in everyone.

Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day. — Emerson

Love Stories Make Me Cry

I don’t know why that is. They just do. They are not sad but some are. Life long love is precious. Some say that it is rare. Perhaps what makes me tear up is the fact that many people do not find love that lasts for a lifetime. Perhaps an inner joy in me appears when I discover a story like ours. Perhaps my tears are tears of joy for, I cry at weddings and births too.

In the Fall/Winter Miamian (The magazine of Miami University) is a wonderful love story. Many Miami University grads met their life partners there while in school Oxford, Ohio. I imagine this is true of many university campuses but at Miami it is legendary. The story is about two people who met at a basketball game but did not know each other. They were set up by friends and began to date. During this time she noted that they could get a one hour PE credit for taking a social dance class. He did not want to do that but she insisted with, “If you’re going to date me, we will do this.” Later as they found out that they were in different sections of the class, she wanted to drop the class because it was not what she wanted it to be. He responded with, “If you’re going to date me, you are going to take this class.” The woman teaching the class allowed them to take their final exam together. It was a waltz. It was a metaphor for the rest of their lives.

Today she is suffering with Alzheimer’s disease. And he is her caregiver. As time progressed she needed more care than he was capable. As he was moving her into a facility to care for her better the pandemic struck the U.S. The facility was about to lock the doors to curtail the spread of the virus to their residents. Could he move in with her? Yes. He has moved in with her to the assisted living facility to be with her throughout this Covid-19 pandemic. They locked the doors to the facility to stop the spread. True love.

I wonder about our future with Parkinson’s disease. As time progresses I notice that my life partner struggles with many of the simple organizational tasks associated with day to day living. I have taken over many of these, most of which fall into the category of chores – laundry, cleaning, cooking and the like. I wonder if it might have been better for me to not assume some of these tasks. It is not that I mind doing them but I have taken many of the daily routine tasks away from Cheryl and she has little of the daily routine chores to help her organize time during the day.

As it is, I am able to keep up with daily living chores. But I cannot resist looking towards the future and wondering about what is next.

In addition to being a movement disorder, Parkinson’s seems to destroy in some people the ability to perform parallel tasks. Cheryl has filled her days that I have removed the chores from with a task that her mother used to perform for the family. Elaine used to keep track of and send an appropriate card to children and couples on the recognition of their birthdays and anniversaries. Intermingled with this was additional well wishes for illness, deaths and other life events. It is somewhat unique in her extended family as I have noticed no one else doing this. Facebook has the unintended consequence of reducing within a family notes, cards, phone calls and other intimate connections. (Perhaps a good new year resolution is to get off Facebook and onto the phone or email or snail mail to reconnect.)

I have digressed. The simple act of keeping an address list up-to-date and maintaining a calendar with birthdays, anniversaries, deaths or other dates is confusing to one who is loosing her ability to remember which pocket of her purse holds the chap stick she put in there moments before. I help her and have helped her a bit around the fringes but I am resistant to take over this task in its entirety. It is something she wants to do. It seems to be something she likes to do. It is something that frustrates her greatly upon occasion. It is something that derails her objective when she discovers an incorrect address or thinks she has discovered an incorrect address because she has remembered an address from “auld lang syne”. When this happens one must stop and wait for the correct address to appear from the email inbox – or text message stream which is a variety of the same thing.

This is merely an example of a deteriorating brain and I wonder if I will be able to keep up with her needs into the future. The husband of the couple interviewed in the Miamian recognized that he was unable to tend to her needs completely and decided assisted living was the answer. His wife has Alzheimer’s which is by my perception much more debilitating than the slow progression of Parkinson’s disease dementia but will I recognize when I am unable to take care of her on my own?

Our love is here to stay. Their love is also. I will always cry when I find a love story of two people devoted to each other for life.

Parkinson’s disease sucks. I hope I can recognize where it is sucking us toward.

Do … Resolutions for 2021

Do all you can while you can. Life is a one time deal.

Carpe Diem — longing for the old days is wasteful. While it is fun to reminisce about previous experiences today is here. Stay tuned into your surroundings.

This Post card from Bishop John H. Vincent

I wish to resolve to do this care giving thing better:

Goal:

my attitude to be positive, my hands to be gentle when administering help and my heart to be full of compassion. [What she sees, hears, feels and tastes is real to her no matter what time of day.]

Plan:

Understanding and education of symptoms and what can cause those symptoms. Keep educating myself and make no assumptions about cause and effect. [This can help me to understand that I do not know all the answers, that only she knows how and what she is feeling.]

Action:

Be supportive when necessary, explain if asked, and lead if called upon. [It will be tempting to know the right answer but to find the patience and empathy to determine what is called for at any particular time is wisdom to be sought after.]


Some Specifics:

When walking with Cheryl, stroll. She moves slower than she once did.

Do not tune out the surrounding world and merely wait for the next event. Seize down time for exercise, education and entertainment but do not regard the environment as an intrusion of self.

Be more upbeat! (That is not specific. (smiley face here)) Look for the gold in every day. Leave the tarnish for yesterday.

Parkinson’s still sucks. Let’s make the best of it in 2021.

A Tribute to Bob Torbeck

Today is Bob Torbeck’s birthday – my deceased father-in-law. As Cheryl remarked that today is Dad’s birthday I thought about posting “Happy Birthday, Bob!” on Facebook to see how many of the family might respond with thoughts and remembrances. When I woke up Facebook I found this from Ken my brother-in-law at the top of my “news feed”. It is a good remembrance.

Robert O. Torbeck

Memory Lane is open and BUSY this weekend. Christmas is often a reflective time for me. The images from my childhood have filled my heart all weekend.

Today is my Dad’s 98th birthday. It’s the 43rd time that we’ve celebrated/ acknowledged it without him. Dad and Christmas memories are synonymous in many ways (for me). As a young(est) child our Santa came on Christmas Eve. I am quite certain that I was totally geeked out waiting for Dad to close up the gas station, come home, eat dinner, have a cigarette, more coffee, another cigarette, tease about what’s for dessert……finally slipping behind the heavy drapery that entombed our living room (seemed like for months), to THANK Santa for being so generous to us Torbeck’s. Once Santa noisily took off from our roof the wrapping paper was flying. And I remember Dad seated in the corner grinning ear to ear with tears in his eyes? Were they joyful tears bc we kids were SO happy? Tears of pride bc he worked crazy hours to beable to create such joy for our family of 8? Or was Dad sad that he couldn’t do more? Some combination? As a dad I have memories of crying for each of those reasons over the years.

Another Dad and Christmas memory is the Open House / Lunch at the gas station on Christmas Eve (afternoon). A huge spread of deli meats, cheeses and all the fixings from Ron and Angela Stafford ‘s grocery store. Pkgs of cookies and candies from Dad and Daniel Torbeck ‘s customers. All washed down with Seagram’s 7, Canadian Club and or Hudepol beer. Friends, neighbors and customers typically all in one! As I mentioned Dad and Christmas memories are often the same thing.

A trip to Oldenburg for lunch yesterday opened this flash flood of images and memories. As we drove through the town I wanted Jill Semple Torbeck to drive, in reverse to achieve the FULL rear facing, 3rd row seat, smooshed against the window experience of a trip to visit Cheryl Paul J Weisgerber at school 😎. (Pre I 74).
Anyways HAPPY BIRTHDAY Dad! Merry Christmas Dad, Mom and Janice Torbeck Farmer ! Thanks for the memories! I miss you all. Hopefully you and Mom are getting caught up on your Jitterbuging.

From Nancy:

Wow! Beautifully said!! Thanks for sharing your memories…. I only remember a few of the ones that you mentioned 🙄
I am always GRATEFUL to hear my family’s memories (my sibling’s and my children’s) bc I have so few 🙄
Love YOU and LOVE that you are so tender hearted, like our Dad was 😘❤️💚 I THINK that we had to sing too before the blanket came down 🤔☺️

From Dan:

Yes WOW is correct !!! Thanks for sharing those memories and reminding all of your siblings what a great life we experienced when that was all we knew. We did not realize how hard Dad worked until we were responsible for our own Families. I miss him every day that I go to work continuing the traditions that he taught me so many years ago. Thanks for sharing your Heart and Soul with all of us. Well Said Youngist Sibling. Merry Christmas to All and to All a Good Night !!! ❤️❤️❤️❤️❤️❤️❤️

From Debbie:

Oh My Goodness! Thank you for sharing your heart felt childhood memories. You expressed them perfectly! I’m feeling all of the same thoughts and emotions! So grateful for all of our families many blessings! ❤️💝

From me:

Happy Birthday to you, Bob. Thanks for letting me drive the wagon. Thanks for not staying mad about no bumper guards on the VW. Thanks for the opportunity to clean the men’s room. Thanks for letting me earn a few bucks on the weekend. But most importantly thanks for bringing Cheryl into the world.
Many times through life I have often wondered what was the purpose of it all and more importantly what was my purpose.
The answer to that question recently has been made very clear to me. Thanks to you and Elaine for producing Cheryl as a product of your love. She consumes all of my love and life purpose now as you know, so, thanks Bob.
As Ken said, I hope you are able to jitterbug into eternity and Happy Birthday to you!

From Cheryl:

Every time members of our family gets together, we have lots of fun. We don’t need board games or card games.  We remember lots of events, and those memories breed  more memories. Most of the time, the memories are triggered by a long-lost photo that we find when getting out the Christmas decorations. For instance, there is a memory I have that I have told many times over the years– it’s a good memory.  I was probably 4 years old and Jan was probably 2 years old, and she had curly blond hair.  I had straight brown hair.  Mom wanted me to have curly hair.  It was Christmas eve.  Jan and I were supposed to take a nap. Mom used some metal curlers to curl my hair for the occasion. Then she put Jan and me to bed  in Mom and Dad’s bed. At the time, their bedroom was separated from the living room by a set of  sliding pocket doors. So Jan and I were told to go to sleep. Jan went to sleep almost right away, while I tossed and turned…wide awake!  In the pocket doors there were a couple of key holes that were just high enough in the doors for me to look through.  So, of course I peeked in, and there, across from the door, was a  doll-size table and chairs, with a baby doll sitting on each chair! I just stood there staring at my new toys. Then suddenly Mom opened the door   right in front of me.  Then Mom gently scolded me, and told me to get back in bed. She said that Santa was in the kitchen, and he wouldn’t be happy if he saw that I was awake. I went right back to bed
and kept quiet until it was time for supper. This is one of my fondest Christmas memories.

All of our memories are precious. We preserve people we love by remembering them. Sometimes the memories are so powerful they cloud reality. When I look at Cheryl I see a younger version of her.

Thanks Ken for your remembrance of your dad. Thanks for reminding me of those trips to Oldenburg. I am at peace today with everything.

Some More Conversation

This morning she says to me, “Are we ever going home?” … in an angry tone.

It is kind of an odd conversation but more common conversation to have in the morning. Because she seems to be in a different place in her head, even though she can see all of her possessions and her earrings and her clothes et cetera nearby.

It’s just really, really interesting and disturbing. I am unsure of how to react sometimes and what to do about it. This morning I did pretty much nothing and told her that we were in fact home. This is where we slept last night.

Then I asked her if she needed my help find a shirt or anything like that to put on and that seemed to deflect her mind. AHA – so maybe in the future. What I will do is look for those opportunities to answer her question and then move on to a new topic because she doesn’t seem to get lost when I change direction. She doesn’t insist on talking about where we live and why we are there and etc. Poof! She looks for a shirt.

In the past few weeks we have had conversations about dreams, Jan and furniture. She has a different reality – which is probably the wrong way to say it – sometimes in the evening, sometimes in the morning. It is difficult for me to ignore the fact that she perceives something different than I do. My natural tendency is to correct her perception. (What can I say – I am male. It is built into my jeans. Yep – purposeful use of the homonym.)

I guess we are creeping toward the non-benign form of Parkinson’s disease. Sadly.

I have told her many times that I will stay close by to help guide. She seems to understand for now.

Some days it is hard to find any humor. We use to tease each other. Now she does not understand and thinks I am being mean.

The Importance of Being Confrontational

We had dinner with friends last night. There was much alcohol. There is little to be said about that except that alcohol lowers inhibitions. Does it enable conversation? Maybe not but it does seem to promote confrontation.

Her candidate did not win. That became apparent early, right after the second bourbon. And as a retired junior college educator she was irritated with the state of education in a Covid-19 world. Life sucks but then there is bourbon so its not all bad.

But eventually after the acceptable amount of self-medication, it came out that she is worried about socialism for her grandchildren. I thought about asking what the term socialism meant to her but I quickly decided that would be needlessly confrontational or might seem so to her. With that in mind, I kept my mouth shut.

Socialism is scary thing for a capitalist. Because, from the dictionary – socialism is a political philosophy and economic system based on the collective ownership and control of the means of production; as well as the political and economic theories, ideologies and movements that aim to establish a socialist system. It seems a hard system to make work with out a lot of true egalitarian democratic decision making. My wife and I often do not agree on which restaurant to go to in a spur-of -the-moment decision to eat out. I find it hard to believe that the 10,000 people or so that it takes to run an oil production company for example could put their heads together to decide how much one should pay for a gallon of 87 octane gasoline that came out of their production line. It seems not impossible but certainly impractical. It also seems unlikely to me that we could ever get socialism ala China or Russia to work in this country of ours. Too many gun-toting NIMBY folks out there to allow that to happen.

There appear to be many a broad brush with which to paint the political landscape and in a brain storming session (committee meetings and hearings) various factions shout at one another without conclusion. The color of Socialism does not seem to stick to us.

What is the purpose of government? Any government’s job is to provide for the common good. If the populous is good and kind and empathetic to one another there is little need of a government.

A home owners association (HOA) is a microcosm of government. It is a truly democratic organization for managing the money and facilities for the common good of all. Hard stands appear when groups of people talk about money. HOA expense items are the same each year. Those service items increase in cost. The basic items are: utilities, waste removal, alarm system, administration, insurance, landscape and building maintenance. Unknowns are saving for a rainy day and disaster relief. It is prudent to budget for all of these. Home owners associations are socialist in most respects. Everyone pools their resources for the common good. Everyone in the HOA has access to all common elements, such as, parking areas, lawns and if such items exist, pools and recreational facilities. Nevertheless, few participants readily volunteer to pay more from year to year for the same. A small HOA can meet in person to transact business but even then not all want to participate.

Village and city governments quickly be come too large to transact business in a democratic fashion. We are used to selecting representatives by vote to exercise and express our interests for us. We accept their decisions as our own. If the populous gets dissatisfied they can vote them out.

Some confrontation is good for discussion. It breaks folks out of their own biases and ideas to understand the side of the discussion they did not before. There are at least two sides to every issue. Many times there are three or more.

Twelve sides

Looking at all sides of an issue or least as many sides as practical before making a decision takes patience and understanding. Passionate debate is useful.

So what does any of that have to with socialism? Nothing. But it points out a flaw in execution. Is there such a thing as representative socialism? There is representative democracy. The U.S. is one. Is there such a thing as representative capitalism?

Perhaps there is a middle ground. What is the purpose of government? In all of our dissension, is it possible to find a common ground? Something that allows capitalism to flourish but protects the rights of the little guy? Something that allows the business community to flourish but provides a safety net for those who cannot compete in an unfettered market?

Unintended consequences compete for partisan attention. The swamp is real. It is populated by asses and elephants. There is not room for socialist asses or elephants.

Everyone stay calm. Read about Sisyphus.

Constant Analysis

I spend a lot of time thinking about…

language

What people mean when they say things. I have never been good at interpreting other meaning from written words. In verbal conversation there are extra sources of information. Facial expressions, body, vocalizations and tone add subtle differences in how the message is delivered. Words are words.

Twitter and Facebook are confusing because people write as though they are in the same room talking to you about something. Talking about something they are passionate about, they are able to recognize they are not in the same room talking and write in ALL CAPS to indicate emphasis. Most do not recognize that old teletype machines printed in all capitalisation. Sometimes the emphasis is lost.

Many years ago I was teaching math as an adjunct for a for profit community college style school operating in the city center in an old bank office building. The CIO who was located in New Jersey sent out an old policy memo about corporate computer usage, the student records database and other topics. The memo itself was full of misspelled words, grammatical errors and IT WAS PRINTED IN ALL CAPS. It was a plain text file (.txt) not associated with any word processor. I accepted the fact that it was corporate policy and therefore worthy of close scrutiny. But it was attached to an email to ALL in the company. I also understood based on my background that this policy paper had probably been written long ago – pre-Word or Wordperfect – and as such had not been proof read since. Many in management positions have a hard time with others, translate underlings, correcting their work product.

Many in the faculty room between classes checking email were giggling. The English teachers in our little school, especially so and some of us math teachers were amused. Language that is to say written language in policy statements should be precise otherwise ambiguity results and the policy for good or bad is ignored.

In a previous job with a boss who was also a friend, I would correct his errors and return his memos to him privately. It was something between us and over time he would give me his stuff to proof read. Sometimes I commented on the policy itself but usually I merely corrected misspelled words, grammar and adjusted sentence structure to enhance readability. This experience made me comfortable enough to suggest to the CIO in New Jersey that he should consider importing old policy memos into Word and enabling the spell and grammar check features before sending them to ALL. I also highlighted many of the grammatical and spelling errors and saved that to a second – AdobePDF – file and replied to his email but not to ALL.

He replied to me with, I do not like your attitude. I did not and still do not have any attitude about his mistake. People make mistakes even highly educated people. In my reply I pointed out that it is very hard to derive attitude from an email and if he needed any further assistance I would be happy to help. He did not reply to my offer.

more

I suppose I gained this propensity to read language in a precise fashion from my father. Early in my working career I worked with my dad at the same company. Once early one morning we were to have a meeting about a project we were both involved in. I arrived early for the meeting coffee in hand. On the green chalk board at the end of the conference room was my father’s handwriting. Printing actually, Dad rarely wrote anything in script, it said – Gary Dean is two four letter words. This sentence was so “my father” that it made me laugh out loud. Dad dearly loved puns and double meanings. Mr. Dean was Dad’s immediate supervisor and I suppose unfamiliar with Dad’s humor. He displayed displeasure with anyone scribbling on his board before the meeting began. The rest of us giggled.

I read for enjoyment. The best authors are able to make me see what they imagine in their mind as they write. The funny ones are a treasure.

I Got Really Angry Tonight

Luke’s Sunset

Angry with her confused state late in the day,

Angry with her actions during it,

Angry with my reaction to her actions,

Angry with the disease and what it has taken from her,

Angry that I let my emotions show,

Angry that I directed some of my anger at her.

Angry that I trod on her heart.

Just angry with my inability to fix things.

Parkinson’s disease sucks and it makes me angry. And scared.

Scared for what the future holds.

Nostalgic for our past experience.

Disappointed in my inability to be present.

Totally and honestly present and

Mindful of the beauty of this day.

Unconcerned with the morrow or the past.

Accepting of new relationships and hopeful for new connections.

Searching for clues to doing better.

Hoping for some glimmer of light of

a new dawn.

Night Time Conversations

Elevators and pills?

It is an odd conversation. Made more odd because it was quarter after six and I was in the middle emptying my old bladder for the second time that morning. Standing over the commode about halfway there, the door pops open and Cheryl looks at me for a moment then backs away and closes the door most of the way. I finished up and flushed the toilet.

As I came out of the bathroom, she asked me – you will have to show me how that works sometime. I replied – do you mean the toilet? No, she said. That elevator thing that you came out of. You will have to show me how to work it. Where does it go?

It just comes up from the pill area, I replied. Good! Can you get my pills for me? I’ll take them but I have to go first. She passed me and closed the door to the bathroom.

I got the morning meds from the kitchen. It was not too early. This was the day after the “fall back” idiosy that we have perpetrated on ourselves to get more golf daylight after work. Parkies have a problem with the shift. It is easier in the Autumn but it is still there.

The next day

It had been our usual (for these days) night. She headed to bed at 10PM after taking her night time meds. She laid for a while with an icepack on her head and eventually gave me the icepack to return to the freezer after several trips to the bathroom.

Over night she got up to go once or twice but returned to bed with out any confusing conversation until about 5AM. — some of this is fuzzy to me — She went into the bathroom for a bit and seemed to be having a conversation with someone. (Not unusual – she talks to the spiders before executing them.) She came back out and told me there was a woman in a pink bathrobe that needed to use the bathroom first. I got up and went into the bathroom and removed her pink bathrobe from the door where it was hanging into the closet and closed the door to the closet. I returned to the bathroom and said – she is done now. It is all yours.

She used the toilet, brushed her teeth and returned to bed. I asked about the teeth brushing and she said her mouth did not taste very good. Now her breath was minty fresh. I told her so and she replied with – I love you.

About two hours later at 7AM the incredibly loud and annoying alarm clock brightened itself and loudly pronounced – Time For Medicine! I got up to fetch her morning meds. She got up and went to the bathroom after I set her medicine on the bathroom counter and helped her out of bed which is another normal routine these days.

Afterward she did not come back to bed. Often we lay in bed until she starts to gently snore and I get up quietly as possible and let her nap for a bit or she gets up after about thirty minutes to return to the bathroom. This time she stayed up. I asked – are you coming back to bed? She replied – no, I think I will put some clothes on. I did not probe any further but should have done so.

I got up and fetched the paper, made coffee and settled into the chair I cannot decide about keeping. I turned on the TV to catch up with the boring political news of the day. This is election day. The TV news is like the pre-game show from hell. … it is a nice day outside but the lines are long at the polling places… reports the guy standing outside a poll in New York City down the street from a boarded up Macy’s. Cheryl came out of the bedroom dressed up to go to church or some other gathering requiring an upgraded look.

Do you know who is picking me up?, she asked. I replied – no one yet. You should have some cereal for breakfast. (I was hoping that she would wake up.) She ate a bowl of cereal.

Afterward she went back to the bathroom, I thought, for a second time. As she came back out she said again, I don’t know when they are picking me up. I replied that no one was picking her up to go anywhere. This, of course, did not register as she was convinced that someone was picking her up to go somewhere. When I asked for that detail – where she was going – she replied, I don’t know but they will when they pick me up. She remained agitated and got her keys and went out into the front hall. (I thought she was checking for mail at 8AM.)

She returned and said, there’s no one out there. Do you know when they are coming? I coaxed her over to her chair (The Chair) and got her to sit down. I moved the rocker over so I could sit and look straight at her. And then I explained again that she was probably dreaming when she heard someone tell her that she would get picked up soon to go (wherever). I repeated this message and the one that we where going to her exercise class at noon today and, oh by the way, this is pizza Tuesday. Some of that sunk in through the fog of confusion because she asked again. I’m not going anywhere? No, not yet I replied. To your fitness class around noon, I continued. I look pretty good don’t I, she said. Yes you do. You look very nice, I replied.

I brought her some tea. We watched some more of the pre-game election news madness. She remarked that her watch agreed with the clock on the mantle but the news person had reported a different time. I told her that we were watching a recorded program – a benefit of cable – and we were watching it on a delay of about forty minutes. Oh, she replied and I could tell she understood. She was slowly becoming present.

At 9:30 AM she announced she was going to put on jeans and rest for a bit. I took her the ten o’clock meds at ten. She went to the bathroom and returned to bed and slept for about thirty minutes.

… 11:09 AM — she is back! But tired. She ate some yogurt and drank a little 7-Up.

Changing time zones is one of the more moronic ideas of the twentieth century carried into the twenty-first. China has only one time zone. Think about it and look on a map.

Cyptoquips and Word Jumbles and Sudoku

Her favorite games in the newspaper are these. Even though she may have episodes of confusion, she still works these. They require both logical and expanded thinking – references to puns, etc.

Parkinson’s disease is puzzling and it sucks.

Death and Dying and Left Behind…

My sister died in 2008.  I have written about her before.  She was our baby sister.  I will always think of her as my baby sister.

She died of complications to pneumonia.  It is hard to breathe with pneumonia.  Not breathing well contributes to low blood oxygenation.  Effectively one drowns from pneumonia.  Laura had myelodysplastic syndrome.  It did not kill her.  I was her blood stem cell donor.

During Laura’s treatment it was discovered that she was allergic to virtually all the antibiotics they gave her as a prophylaxis. The treatment for pneumonia is antibiotics.  The solution for MDS is kill off the bone marrow and as a result the patient’s immune system.  The antibiotics given during this process put her in a coma for six weeks.  The doctors supposed that she had veno occlusive disease, a liver problem with a low survival rate. She did not have that.

At the beginning of her treatment before I donated my luekoblasts to her, a nurse and social worker and I discussed the possibility that my blood cells which came with my immune response could actually attack her and kill her.  The discussion centered around, how did I feel about THAT.  I was certainly not excited about the fact that I could kill her.  Presented as my call.  A moral dilemma- Laura will die if I do nothing; Laura may die (sooner) if I do something.  Looking back from the distance of thirteen years my reaction is the same – tears come to my eyes. [I had to stop.]

I remember thinking that I should ask Laura if it was okay if I killed her. I did not. This procedure is presented as do this then that then this and … you are healed. I suppose that they discussed with Laura the survival rate. She did not survive. I will always be somewhat skeptical of doctors and cancer cures. The fact that she died specifically of pneumonia is a distinction of no import. I was there when she took her last breath. I will never forget the silence.

My brother died this year in May. He was my big brother. I have written about him too. He was six years older than I less nine days.

He followed his dream job to Florida many years ago and from that job he went to others always in Florida. His last job was a coder/programmer for a subcontractor to Microsoft. He was a smart guy or at least that is my perception from little brotherhood. Every time I turn on my computer I think of Bill.

Families are complicated. One wants to believe that there is a close personal connection between siblings in the family but that does not always occur in life. Gaps in age, education, life choices, geography and beliefs tug at simple family ties. Our family is no different. We held no animosities but we did not live in each other’s lives.

Our parents Virginia and Robert died about eight years apart. Dad passed away in 2007 about a month before Laura. Mom passed away in 2016. Every time I throw away a box from Amazon or Boxed Up, I think of Mom. I hear her voice, “Paul, don’t throw away that box! That’s a good box.” Mom kept a lot of crap in boxes.

I think of Dad in various situations. He was what we would call today a hacker. When I was a kid our basement was full of old electronics. When he retired he became enamored with computer equipment. He spent a lot of time futzing with computers and programming them. Visual Basic and he were friends. He was always working on something called his Bingo Program. He occasionally journaled too but although I inherited all his computer stuff I have not found any of his writings. I think of him when I write random comments in this blog/journal of mine.

Now it is only Joyce and me. We talked yesterday for about an hour. We did not talk about anything special. I called her merely to hear her voice. It has been thirteen years since our original family group started dying off. For some reason it is important that I hear her voice more often.

She mentioned in our conversation that she is not very excited about turning 70 this year. (Wow has it been that long?) She sent me the picture below many years ago in a birthday card. Laura is in the middle. In her note she wrote – I’m so glad you are my brother. I am so glad you are my sister, Joyce.

Remembrance of occasions and enjoyment of those fade with time. I have often pondered why I remember some things and have absolutely no memory of others. What we were excited about on this occasion is lost in my memory. Joyce found the picture and sent it to me. Obviously it is Christmas time. I am swallowed up in abject joy and laughter. No memory at all about it. I am grateful for the picture of us.

Life and death? — Dad was not afraid of dying. He said as much to the doctor when he was given the news that an X-ray photograph of his abdominal area revealed a mass on his colon. I do not fear dying. I worry that Cheryl will be provided for after I am gone. I wonder if Laura would have lived longer if she and I had not exchanged blood cells. I wonder if she would be alive today if her doctors had simply been smarter about what was going on in her body. Maybe she would not have spent six weeks in a coma. … could have, would have, should have.

Laura told me about a month before her death that my stem cells had taken up residence in her bones. Our life experiment was working. I speculated – how do they know? Her response was – I think because they can look in there and see little X’s and Y’s. Yes, I imagine they could detect those somehow.

In the background of the conversation between Joyce and me was a thought like, I should have asked him (her) that when Dad was still alive, when Mom was still alive, when Laura was still alive, when Bill was still alive. As I talked to Joyce I thought about how short our time on Earth is. Seventy years seems like a long time but it is not. I thought about how fragile our existence here is. At this time in our life a virus threatens lives. Ask those questions. There may be little time to get an answer.



Other morose thoughts — In his late years, Dad would not hesitate to tell you that he was older than his father. Dad’s father died when he was 82. In Dad’s mind he felt that he would live to be 82. As he got closer to that age, he resigned himself to the fact that his life was almost over. He was not worried about dying. His only concern was, would it hurt? I think that was his only fear.

Pain is the only thing that makes me uncomfortable about death I believe that I do not feel pain as others do. I understand Dad’s point of view about pain. I wonder if it hurts to drown. I wonder if it hurts to die of pneumonia. Does a sudden massive heart attack hurt?

Death causes a gap in the family. I have become very aware of that gap in our family. Joyce and I are closer. I believe we are. It is just us now.