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.