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.

It is the Little Things

Glasses piling up on the counter

Most little things are not important to care about.  Our niece, Natalie, who cleans for us once said you are neat people in response to a comment from Cheryl about how quick and efficient she is at cleaning our place.  She is right about that Cheryl and I are neat people generally.  Clutter of newspapers and magazines will appear during the week but by weekend they are in the recycle bin.  I get up and make the bed every day.  While I am cooking dinner which is something I find myself doing more and more often these days, I put things in the dishwasher as I complete a task. We put the dishes in the dishwasher right after using them. 

I’m not big on dusting  which is why I hired Natalie to do that for me but since she has been dusting and cleaning every couple weeks, I have spent time spiffing up my office.  Lately I have noticed a slight changes here and there with Cheryl’s behavior about neatness.  It seems to be another sign of the degradation of mind caused by the Parkinson’s disease.  Something else for the caregiver to do.

The inconsistency of PD is often confusing to me and always frustrating for Cheryl.  I have mentioned this before.  Paul McCartney  has a new album out and on it a song titled “Seize the Day”.  Absolutely one should seize the day but often with a parkie one must seize the moment.  Her day might be disconnected from reality one moment and acutely aware twenty minutes later.

Mail… junk mail

As one gets older the junk mail increases. At least that is my perception. Cheryl used to be able to discriminate junk mail advertising and new credit card offers without opening the envelope. These days each envelope is opened and ruminated over. I think that’s how the Readers Digest started to get delivered. She may have asked me in a weak moment – Do you like Readers Digest? The subscription has been renewed until 2025 or so. Oh well. It was cheap.

Perpetual Christmas card list

Finally it is the end of an excruciating three weeks of getting the Christmas card list in order and sending them out. Cheryl has been looking at printing out and re-looking at the list of addresses she has from 2018, 2019 and edits from this year. This is all made so much harder by the fact that the original list of addresses is kept in an Access database which makes little sense to me. The list itself is a couple names short of 100. Both Aunt Alberta the last of my father’s core family and Aunt Ruth the last of my mother’s core family have passed away in the past twelve or thirteen months. Cheryl’s sister Janice is also gone, as is my brother Bill. Things need to be adjusted.

This exercise is more than just making sure that the address list is accurate.  It is a time to think about those folks. Maybe a letter is needed for the card.  Maybe a phone call is needed to get current.  To me it’s about the list. To Cheryl it is more than that. The sewing machine becomes desk to finish off the last 30 or so cards that require extra thought. Lots of distractions jump in the way of sorting through these last cards.

Is this one of those “Aha” moments that a Facebook friend talks about? Aha! She is not able to focus her thoughts long enough to ask for help. When she asks for aid, it is very hard to understand when I must not push back when she wants to do it differently. I was not able to accept micromanagement in my working career either. This is frustrating. There are four more addresses to go.

We wrote a generic message to those who were left to go. We did this in the car riding to visit my son yesterday. Today when I asked her for the notes she took so I could write it up, she did not know what I was talking about. I had to be very specific in my discussion. But we got there. This is the note:


I have written this short note to everyone on my Christmas card list. My Parkinson’s disease is making typing and writing more difficult as time progresses. So, even though I would like to write a longer note, I cannot do it. I do want to find out how everyone is doing this year, so, if you are interested please send a text message to 5——–0 or email to me@Gmail.com and Paul will set up a Zoom meeting to keep in touch.

Thanks to you all and have a very Merry Christmas!

Cheryl

printed 6 to a page

I probably spend too much time trying to understand why I am angry (at myself) and frustrated (with myself) about a stupid list of addresses. I printed the labels – weeks ago. I just went in to check on the last four. She is handwriting an address for a fifth one to someone not on the list at all. Carpe Diem…

Questions

In a Facebook Parkinson’s disease caregiver’s group – a person asked in a posting if anyone else got driven crazy with questions.  I am not.  I wish I was.  Occasionally she will wander down a rabbit hole and come out the other side anxious about loosing a piece of information, email draft, telephone number or address.

What day is this? Is Scott going with us? What do you think Jan wants on her pizza? Are we staying here or can we go home? Did that guy bring my pills yet? … I do get these sorts of questions.

There is very little straight line activity in Cheryl’s world. Her world has many distractions along the way.

I have read and re-read this several times. I am whining but there it is – a couple weeks in the life of a PD caregiver. It certainly is an odd disease. And it sucks!

This particular image has nothing whatever to do with anything I have written here but amusement parks used to have photo booths in them. Remember photo booths?

Two Young People in Love OR We had Dark Hair Then

There is no value to looking backward in time. It is, however, enjoyable to reminisce about days gone by.

On the Importance of Sleep

Chronic illness and sleep

As we travel this Parkinson’s journey the engineer in me is hunting for a fix for various things that arise. Lately the sometimes appearance of “Sundowner Syndrome” (SS) has me hunting for information and hoping for a solution. This Web MD article has some useful tips about how combat Lewy body dementia which can be a late stage Parkinson symptom. We do many of the suggested things such as, physical exercise, increased lighting and redirecting. Some actually seem to help.

Many if not most PD patients have trouble sleeping. I think Cheryl may be in the “most” category. These are just perceptions on my part but it seems she has about a three day cycle. On the third day she sleeps well at night. Poor sleep seems to contribute to SS.


Caregiver and sleep

The role of caregiver is a tiring one. One can spend much of the day assessing mood, movement, confusion and cognition. In the background of my thoughts is a constant “what am I missing” anxiety. In most cases it is a misplaced anxiety because I have become very good at ignoring my own needs and thinking ahead for Cheryl. — Oh, wait… maybe I forgot my own needs?

Stolen from the WWW – I like it!

Recently I began to think seriously about what I need to stay healthy both physically and mentally. In the summer and warm months I enjoy riding my bicycle around. It is a love left over from my childhood. When the kids where teenage I took it up again for a few years. About three years ago I did it once again. It allows me to empty my head. I listen to a book or podcast while riding and pretty soon a couple hours are gone and I have given no thought to Cheryl and PD. That is until this year, the year of the pandemic and the year of fear and misinformation.

It has not happened for a some time but approximately 3 years ago and about two years ago Cheryl had a bad episode with fatigue and meds. I took her to the hospital the first time and the fire department took her to the hospital the second time. Both cases where less than satisfactory experiences. Hospitals are not set up to deal with Parkinson’s patients. PD patients have very special medication needs. They have very specific medication needs. This year of pandemic quarantine and isolation and the free flowing misinformation and social media idiocy, whenever I rode my bike around my favorite path I was often worried about Cheryl. I was unable to let go and empty my head. I kept track of time. It was exercise and not relaxation. I became totally focused on keeping her out of any sort of hospital setting and as a result I was unable to dissociate from that thought train.

Even caregivers need proper sleep. On those days previous that I had ridden my favorite route without any thought of Cheryl and her well-being, I slept well. That total relaxation and refresh seems missing to me. I have asked my niece and friends if they would be willing to sit with Cheryl while I disappear for a bit of time. Time that I have come to think of as do-nothing time. I am developing a network of care for her and me.

Mindfulness and resting conscience

It is not sleep but a relaxation technique. Many folks are able to meditate and pray and give their conscience state to something else.

When I was a kid I attended a Roman Catholic school. There was a book called the Baltimore Catechism that we all spent time with. In it or may be with it us kids learned how to pray. This is from Wikipedia — Prayer is an invocation or act that seeks to activate a rapport with an object of worship through deliberate communication. In the narrow sense, the term refers to an act of supplication or intercession directed towards a deity (a god), or a deified ancestor. More generally, prayer can also have the purpose of thanksgiving or praise, and in comparative religion is closely associated with more abstract forms of meditation and with charms or spells. On social media and SMS messaging people tend to add little icons of hands pointing up — in the sense of “praying for you”.

None of those prayers written in the Baltimore Catechism do it for me nor do hands pointing up icons give me peace of mind. I empty my head as best I can and think about good times past and try to not dwell on those and long for their return. I try to empty my head of distracting thoughts about the future which tend to go toward death and wondering what that is like. I try to listen to my heartbeat and let go of anxiety about Cheryl’s care and stay in the present for her — not dwell on what unknowns may be brought by the future.

When I am able to do this the day looks fine.


Foggy or bright? — each morning I get up and attempt to discover how Cheryl is doing that day. Last evening for example we had dinner with our friend Jane who joined us for spaghetti and conversation. Towards the end Cheryl felt like she had to lay down and rest. Jane helped me clean up the dishes and she returned to her home across the hallway. When Cheryl returned her view of reality was confused. She wanted to know if we were ever going to return to “that other place.” We had a long conversation about where we live. It is as though she perceives two realities. She knows where we live but she wonders why we do not ever go home.

Foggy day

We later played Scrabble for a diversion and she went to bed. In the morning she seemed to have no memory of any of that confusion from the previous evening.


I get anxious when she ignores things that I want her to do so that she can get a good night’s sleep. And then I remember that I may not know all the answers. I take a deep breath and try to help her move slowly toward the bedroom at night.

The sun-downers thing that seems to be developing is different at each presentation. Sometimes it manifests as an urgent need to complete some task and mentally she is unable to finish – which makes her anxious – which makes her try harder – which makes her anxious – which makes her frustrated – and so on with a mental state that is almost manic. This may keep going even if I manage to direct her into bed. Her mind does not easily let go of the circular task/completion anxiety loop.

It made me think of Randy Newman’s song from Toy Story. I recently heard it on some news program.


You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy, you’ve got a friend in me
Yeah, you’ve got a friend in me

You’ve got a friend in me
You’ve got a friend in me
You got troubles, and I got ’em too
There isn’t anything I wouldn’t do for you
We stick together and we see it through
‘Cause you’ve got a friend in me
You’ve got a friend in me

Some other folks might be a little bit smarter than I am
Bigger and stronger too, maybe
But none of them will ever love you the way I do
It’s me and you, boy

And as the years go by
Our friendship will never die
You’re gonna see it’s our destiny
You’ve got a friend in me
You’ve got a friend in me
You’ve got a friend in me

– Randy Newman, Toy Story

She will always be my friend. I just want to be hers and give her a smooth path.

This is my prayer and lament.

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.

It has been a couple years now

This meditation has guided me through these last few months since I read it. I have edited it a bit for me personally. I try to read it and hold it in my heart each day. In an email from him, James Clear makes points about success, happiness, health, wealth and peace of mind. I try to use mindfulness as a way to reduce my own anxiety and understand what it is that any higher power may have in store for Cheryl and me.

Wealth is the purchases you don’t make.

Spiritual wealth is tied in no fashion to material wealth. Over time Parkinson’s disease has robbed Cheryl of her abilities to control and reconcile our check book. Through our entire fifty years of marriage she has done this family task. My interest was usually – how are we doing this month dear? Are we winning or losing? Her response was often – we are winning but it will be a little tight this month. She is frugal. Material wealth is not in our cards. Neither of us are risk takers. But over time if it is not important for one to have the latest, newest, nicest shiny new object enough material wealth accumulates to see one through to the end.

Spiritual wealth is more illusory. Spiritual wealth requires work. How can I do my best job to acquire more spiritual wealth, more inner peace? What sort of spiritual purchases can I avoid to gain or regain wealth spiritually?

Routine in life is calming to me. Routine provides a place for one to put your thoughts and displace the anxiety that arises from new PD behaviors. But lately, my routine is not my routine. New things seem to get added each week. Like laundry, which I never did in our previously un-parkinsons life. I have adapted to this addition. Friday is now laundry day for clothes. Monday is laundry day for the sheets. Wednesday was for towels and the like but I left this up to Cheryl because every now and again she would decide it was time to clean and part of that was to wash the towels. Over time with her parkie mind it became random. I suppose this is a new routine to be added. Service given freely to others, in my case, my wife, who needs my help provides an opportunity to gain spiritual wealth. Not purchasing the anger that arises from the constant tug of war between my way v. the previous (her) way can help with spiritual wealth. Remaining mindful of the mental fragility that comes with some PD patients may add to stress in a caregiver. Acknowledging that fragility, recognizing the tug of war, and then letting any stress or anger with the disease go often for me gives way to a bit of grief for what is to come and a calmness (acceptance?) of what is to be. This is a sort of meditation.

I think we all long for an easy road regardless of whether we are giving care to someone with a chronic illness or not. I know I do. I long for the pre-parkinson banter. The snide comments and the snappy comebacks would make us laugh. We spent fifty years becoming comfortable with that banter and learning how to push each others button and how to not do so.

From Sunday’s Gospel–MT 21:28-32; ‘What is your opinion? A man had two sons. He went and said to the first, “My boy, go and work in the vineyard today.” He answered, “I will not go,” but afterwards thought better of it and went. The man then went and said the same thing to the second who answered, “Certainly, sir,” but he did not go. Which of the two did the father’s will?’ They said, ‘The first.’ … after this Matthew wanders off into the weeds talking about tax collectors and prostitutes.

This is an odd gospel reading. The first kid responds as a teenager might — nope, not today pops. I’m hangin’ with the guys. Then he changes his mind. He does not apologize. He just goes. The second kid is a liar. Families are complicated. The first child is a reluctant helper. The second child is an asshat. I do not know where Matthew is going with this story and he does not tell us. He goes off into a ditch about the less desirable elements of any societal group.

Greater spiritual wealth is gained by doing for others without grumpiness about it. Lesser spiritual wealth is achieved by doing only. Spiritual wealth is gained in both cases. It is human to grump occasionally. Don’t beat yourself up about it but do not be a liar. Liars are below prostitutes in the social order and they are asshats.


Happiness is the objects you don’t desire.

I desire very little in life. It is a low bar but as long as the money and I run out at about the same time, I am good with that.


Health is the injuries you don’t sustain.

Exercise and eating your veggies add up to relatively good health. Stretching when you get “on in years” is a must. If it hurts, stop! Physical therapists will tell you that over and over. All good advice.

Find some sort of exercise that you can enjoy and stick with it. If you want to body build do it. If you are a runner, do it. If you are a dog walker, do it. If you are a stroller, do it. If you can do yoga and like it, do it.

Take care of your mental health. If you spend a great portion of your day caring for another or others, take time for yourself occasionally. When your grumpiness takes control it is time to go out and find balance.

Do not hurry your relaxation.


Peace of mind is the arguments you don’t engage.

Taking extra meds to fight side effects brought on by the Parkinson’s meds. It is an argument that is unwinnable even without the loopy logic of PD. Stay away from there.

Cheryl first; me second. It use to bug me a bit that she would schedule my time without warning after she quit driving. I became a built in Uber driver. I actually referred to myself as the driver — as in — Do you want to join us for dinner? My reply — Don’t ask me I’m just the driver.

Do not do that to yourself as a caregiver. You are in this too.

Someone else is using my pads. Virginia is making some sandwiches. She is taking care of the baby left here. … it seems that more and more Cheryl is slipping into her own reality. Trying to correct her thinking about what is real and what is delusion merely creates heartache and anxiety.

Avoid the bad to protect the good. — Stay off Facebook and avoid political crapola in your life.


Success is largely the failures you avoid.

Failure can be turned into success if one takes the time to learn from that failure. Life is rarely a straight line.


Thoughtfulness, meditation and mindfulness help to bring peace of mind. These are all different names for prayer.

Scrabble

We play more scrabble these days.

Back in the pre-Parkinson’s days, Cheryl was a computer database wizard (witch?) or at least the guru for several companies that her consulting company serviced as clients.  She spent a lot of time on her computer.  Even in retirement she kept it up with church and other groups providing email news and other communications.

We play more scrabble these days as I try to pry her out of her office and away from her computer which has become more frustrating and confusing to her.  Her other go-to game is bridge but that is hard to do with merely two players and her cognitive function failing.  So, we have been playing scrabble more often.  I offer it as an enticement to get her away from her computer.  Many times it works.  I hate scrabble.

She was (is) a good scrabble player.  A good scrabble player does not worry so much about the words as the score.  A good scrabble player is always hunting around for a word that goes into the corner for the TRIPLE WORD SCORE.  A good scrabble player is always plopping a word on the double word score preferably one with a Z or Q in it. 

I am a lousy scrabble player.  I am always looking for the longest word I can make.  The more pedantic the better it is.  If a player asks – what does that mean? – or challenges its meaning, I am vindicated.  Cheryl often beats me, maybe always beats me.  I love her.  I hate scrabble.

Her computer is becoming more confusing and the frustration has kept her from sleeping. Over time I have contacted some of the organisations that she was doing things for and suggested that they relieve some of the burden on her. It takes her more time and she worried about missing her own perceived deadline. It kept her from sleeping as she got anxious (a good scrabble word) about what she may have forgotten to do. The people she works with have relieved her commitment without grief. They understand her disease and how it screws with her head and her need to stay involved.

So I try to get her to play Scrabble more often. Last evening my lousy play was winning. I was ahead by 40 points at one point. I felt a bit guilty because she was struggling mentally and getting tired. But my lead kept shrinking. Was this a ploy? (one of my words) At the end she was ahead by two points but had many points left on the shelf. Aha! I had some too but fewer. I did the math.

She still beat me by 1 point. I hate scrabble but love her. She still has the killer gamesmanship in her.

Maybe we will try something that I can win at but on second thought that is not the point for me. I hate scrabble. I am not competitive.

Is there an online bridge group for parkies? Google search coming.

Directness

Direct speech cuts through the fog of PD but if it is done without thought it can sound hurtful to the parkie.

As Cheryl and I move farther down this road of Parkinson’s disease, it becomes more and more important for me to speak a little bit slower and more distinctly. Two things I have noticed recently tell me that Cheryl has a harder and harder time following conversation. The first thing I noticed is that more often after I have related a story to her, she will ask a question to clarify it that indicates she did not understand what I was talking about from the beginning but was too polite to interrupt and get a better understanding from the beginning. The second thing I have noticed is similar in that she is certain that she understands the story and at the end comments that the person – someone different than who I was talking about – etc.

To counteract that, I hereby resolve to take a deep breath more often and allow her to jump in if she has a question. The other aspect of that is that she has a difficult time following group conversations. Zoom meeting conversations seem specially difficult.

It will be tricky though. She perceives that I am angry when the expression on my face reveals that I am disappointed that she did not understand my comments. (Maybe I am because I realize I have gone on and on without letting myself detect whether she was with me or not. Or maybe I want to believe that.) I do try to not be angry. I do also miss the fact that we used to have animated discussions about a wide range of topics – political, religious, emotional, parenting. There are a lot of those in fifty years of a marriage. We cannot do that any longer, she cannot always follow my thought progression. And Cheryl, oft times, completely looses the thread that she was trying to explain and will give up mid-sentence.

I have learned to not ask questions while she is laying out her thoughts about something. I do not always do it. We have been married too long and she is one of the most intelligent people I know. I love her too much. We used to challenge each other in our thought processes. It takes little commentary from me to knock her thought train off the track. And when I do that she perceives that she is “being made fun of”. It saddens me and no amount of apology can remove my internal guilt for being a dumb ass and forgetting about her current situation. I should have kept my mouth shut so she could get her though out.

I suppose that a caregiver spouse is doomed to the fire of dumb-assedness occasionally and maybe even often.


A Small Prayer

Lord, help me to understand that I do not know all the answers, that only she knows how and what she is feeling.
Teach me to be supportive when necessary, to be the explainer when asked, or to be the leader if called upon by her to do so, but instill in me the patience, wisdom and empathy to determine which of those is called for this time.
Please lift me up when I am down, show me the humor in awkward situations and nudge me when I lack understanding. (Do not make your nudges subtle for I am male.)
Send me “Aha” moments for us (but specially me) to grow through, messages from above for us to share and empathy so that I can step into her shoes and readjust my attitude.
These are selfish asks and I have asked for a lot Lord, but the most important is my request for forgiveness when, in human error, I tread upon her heart.


I added words to a prayer written by another caregiver Facebook friend that she wrote from a wife’s perspective. On my computer home page I simply call the file “ReadThisEveryDay.pdf”. I read it almost every day but not often enough during the day to remind me of transgressions.

… be still my heart.

Sometimes Tears Just Come

There are many good people doing unselfish things all the time. Their day is not occupied with imposing their unwanted advice on others. They accept others where they are and go to help if possible and if the help is wanted. Stories of these caregivers are prevalent on the TV news lately as the Covid-19 pandemonium rages on.

The stories are numerous and I find tears in my eyes as I listen to them. The God of love dwells in these people. The God of love dwells in us all if we let Him.

This morning there was a story about a football player working in a long term care facility. He plays football for the Kansas City team that recently won the Superbowl. Notoriety of that achievement is certainly why the story made the CBS news this Saturday morning but the story is an excellent one about a young man that has found a calling greater that himself.

During his time as a player for KC, he was able to complete his studies to become a doctor. Sitting at home, his post-superbowl vacation cut short by a world pandemic, he looked for ways to help. He consulted with his team and coach whose wife happened to be a graduate of the same medical school he attended in the off season while playing for KC. Although he has not been able to do a residency and therefore cannot work in a hospital, he has found a position as a nurse/doctor/aide/janitor (his term) at a long term care facility in Montreal were he lives. He spoke about his caring for the patients in the facility and its humbling affect on his day to day experience.

Tears came to my eyes as I realized how his heart had overridden his passion for football and he struggled to keep his young family safe and healthy while providing care for the people in long term care. Truly love is in his heart. He will sit out the 2020 season to provide help and care to those in need.

In another short piece, a restaurateur is running a food pantry for his neighborhood in New York. There have been many of these. I do not work in the restaurant business and never did but my old company made kitchen equipment and although I have never cooked commercially, those who do have a passion that oozes into their conversation and it is hard to ignore. The complicated activity of getting a new small restaurant up and running is brought to a screeching halt by health concerns of the pandemic.

It seems that many small trendy restaurants in NY have converted themselves into a form of food pantry and, now that the social scene is carefully opening in that state, a food pantry / socially distanced restaurant. Their clientele are supporting that love of community.

Closer to home, my daughter is a teacher doing her best entertain and teach science to her students this new school year in Wilmington, OH. Teachers are a dedicated bunch that give of themselves to their students without questions about what will come from the pandemonium. Schools can be pandemonium without any input from a pandemic.

Late in life I pursued a change in career into teaching. It is very hard work. Hard in the sense that if you taught math and science as I did, you ponder why is that easy for me and why do the students not get it? A lot of time spent in self analysis and then chasing different clever ways of lighting a passion in your students for your subject consume many off hours.

Many teachers are very good at creating interest and even passion in their students. We have all had one or two special ones in our lives. Truly love is in their hearts when they are helping the kiddos and adults to learn and grow.

Just simply wearing a mask to protect others shows love in one’s heart. As the pandemic appears to have no end in sight the medical folks have come to the belief that for now slowing the spread of the virus in our open society is up to us. Through the noise of politics, the message is coming clearer, wearing a mask indoors in public spaces is not a perfect solution but does affect the spread of virus particles.

Initially it became a political football and somehow became associated with anti-patriotism. Puzzling to many. A pariah to others who are certain their rights are being violated. Most people wear clothing in public. Love is in the heart of those wearing a mask without complaint and those who wear one with complaint.

Advocating for loved ones in hospital is difficult without a pandemic. New protocols within hospitals that are coping as best they can have inhibited patient’s families from gaining access and advocating for their loved one. In these difficult times the avocation is physically distanced over a phone line. Love is in the heart of those who accept the reality that doctors and nurses in hospital facilities are doing their best to keep families informed of progress or not of their loved ones.

It is a tragic even when someone passes from the onslaught of this previously unknown virus. Perhaps we as a society could have responded better than we have. Perhaps not. We all can find love in our hearts to be with those who are suffering and with those who help them through the physical suffering.

My sister-in-law is caring for small children so parents can work. She has done this throughout her life. First with her own children and friends children and then grandchildren, nieces and nephews, her love in her heart for these little ones shines brightly.

It is a calling and a ministry. She would probably not view it this way but that is how I view it from afar. She has love for the children and it shows.

I spend much of my day giving comfort and care to the Parkinson’s sufferer that lives with me. Cheryl’s disease progressed very slowly for a decade or so. Lately the changes are still small and subtle but somehow more intense.

She feels an anxiety about losing touch with friends and family as her brain feels the effects of Lewy bodies. Her sister is in hospital in Florida suffering from the Covid-19 virus. Her sister who shares her PD and other complications of myasthenia gravis along with diabetes has complications that require use of a ventilator. The whole family is worried. Cheryl recently started talking to her sister Jan at night. Cheryl occasionally sees her sister Jan here with us fleetingly and she asks me where did she go?

As children they were close. Close in age. Close in that they shared the same double bed for years. Close now because she is worried about her health.

Last year Cheryl pursued in a big way the Sunflower Rev It Up for Parkinson’s fundraising event. Jan came to town to walk with her and be a part of the event. As sisters they are close and yet over the years, distance and time has separated them somewhat as happens in families. Now it seems she feels her love in her heart for her sister more somehow.

Love is all around us. Take the time to feel it.