A Sense of Loss and Weary from the Journey

Whooopadiddee!

I will forever treasure this picture. Last year in Cincinnati, Janice (seated) came to help Cheryl with a fund raiser for Parkinson’s disease called The Sunflower REV it up for Parkinson’s. In this particular picture — once in a while I get a good one — they both have their smiles on. The single most disappointing thing about Parkies is often-times they loose their smile. They look stiff and glum.

Janice passed away early this morning. She had contracted Covid-19 from somewhere and the combination of diabetes, Parkinson’s disease, Myethenia Gravis, maybe a little COPD did not allow her to recover from the infection. We will miss her greatly.

She and her husband chased jobs to Florida many years ago. Next year they would have celebrated 50 years of marriage together. When the covid pandemic turned off our plans for a Golden wedding anniversary celebration this summer, they were quickly modified into a joint celebration next year, when, hopefully it would be safer. Alas, it is not to be.

Covid-19 is a peculiar virus. It is a predator that seems to be culling the society of the weakest and most vulnerable.

It is all part of His plan, but, today I am disappointed in Him and any plan that He has. Mere humans cannot understand God’s plan for us all. I cannot find solace and comfort. Not yet. It is too soon. First my Brother and now Cheryl’s sister. It is too soon. The loss is too strong. Perhaps later.

Visit in October of 2019

In the fall last year Cheryl and I visited my brother who was recovering from illness and one day we drove across the state to have lunch with Jan and Bill, their son Justin and Cheryl’s cousin Mary Kay and her husband Jay. This picture is from some Friday’s somewhere in Florida.

The trip was taxing to Cheryl. We drove. It was my choice to do travel that way. It allowed us more flexibility. I felt that I could abandon our plans at any time based on Cheryl’s mood, physical well-being or whatever came up. We stopped often and spent no more that six hours on the road each day.

McDonald’s respite

In a previous life I used McDonald’s as rest stops. Even if I was not traveling on an Interstate highway, their restrooms are generally pretty clean and the staff is generally friendly. Their corporate policing of properties, even franchise properties, is their reputation. They lose business if it is not up-to-snuff.

Today, after the news of Janice’s passing, I was elated that we had taken the opportunity to go and visit. We had not done so previously. I am saddened by the fact that we had not done so previously. It would have been easier pre-Parkinson’s. Life, employment and other unimportant things got in the way, so, we did not visit until last October.

I am gladdened by the memories. An animated lunch conversation and a visit to see Justin’s blow up decorations for Halloween were the highlights of that day.

Booowooohaha – scary all hallo’s eve – not so scary with the sun out.

Our house is sad today. Janice is with her mom and dad. There is a gap in the family that cannot be filled yet. It will take time and love to fill that gap.

When my brother passed away a couple months ago, I felt this same gap. I have been calling my sister more. There is only the two of us left from our original family.

Since Cheryl’s mother passed away two years ago her family started random gatherings of the siblings for birthday celebrations. The baby is now sixty years old. Cheryl has taken upon her mother’s activity of sending a card to children, grand children, cousins, nieces and nephews for birthdays and anniversaries or simply to say congratulations. She is a valuable resource as to what to celebrate. This is a good thing that they have started before any of them has passed away due to illness. Now the first one has died. Even though covid makes it dangerous for some to gather, perhaps it is time wear our masks and celebrate Jan’s life.

I am glad that I knew her. She was a wonderful loving mother to Eric, Kevin and Justin. A loving wife and caregiver to Bill her husband. A generous and loving sister to Cheryl, Nancy, Debbie, Dan and Ken. She was a loving and generous grandmother to Brandon and Olivia.

Our house is sad today.

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.

I can’t Find my Slippers

After breakfast, this is Saturday, so breakfast is waffles with fruit, and after some tea she announces; I am going to take my shower now and get cleaned up.

I reply, I will be alert for thumps.

This is a conversation we have often when she is off to freshen up and start her day. I tease her about falling over in the shower. Grab bars are installed in our shower stall and although some day this situation will probably not work for her, for now, it is what we have.

I settle into my chair with a new cup of coffee and the Saturday WSJ to catch up on the nuances of Argentina’s default on its debt for the nth time.

She comes racing back from the bath area. I look up and ask her, can I help you? She replies, I can’t find my slippers as she walks over to the front door to look near the chair where she changes shoes to go out.

As I look over to where she is heading and get ready to start the expedition to recover the lost slippers, I gently point out to her that her slippers are on her feet. She looks down again and laughs. Giggling slightly, she returns to the bathroom to take a shower and freshen up.

Everyone at sometime or other has lost track of something hidden in plan sight. Sometimes for a parkie it is a panic. It heartens me that she is not apathetic to the disappearance of her slippers. She still cares about life and things around her.

As I think about her and this funny little life situation, I realize how important she is to me and how much I care about her well being. (Edie Kynard calls them “Aha moments” in her prayer.)

Seems like love in its many nuanced presentation.

Forever My Love

Words of love
Softly spoken
Like clouds above
Drift away
What shall I say?
To let you know the way I feel
Should I cry out loud that love is real?
Or simply reveal
Forever my love

Time alone will tell us
Lovers born in May
May grow bitter and jealous
Faded and gray
What shall I say?
It’s not another lovers game
It doesn’t seen to have a name
It changes and remains the same
Forever my love, my love

Yesterday’s projection will never really know
But tomorrow’s recollection will surely know
It was so
Between us
Ain’t no other way
Time has seen us
Day after day
What shall I say?
That isn’t in the way I act
That will carry through the years intact
I’m lookin’ forward to lookin’ back
From further in down the track
Together in fact
Forever my love, my love

She caught me by surprise today. Telling me about this song by songwriters Carly Simon & James Taylor. Lately occasionally in the midst of the corona virus catastrophe, she’s been playing old albums as she puts her office/sewing room in some sort of order. Various moods float through our house.

She also found this picture of us on our wedding day. (Goodness, we were thin then!) She made that dress. It was a wonderful day that I have little memory of. That is sad, is it not? I did not keep all the minutia of that day in my heart as she did. I remember it was HOT.

We were married in late August in Ohio. Long enough ago that A/C was advertised as an important feature of bars and other gathering places.

Today, almost 50 years later, I reflect on that fact and the wonderful times we have had. And look forward to the years we have left and I wonder if I am able to keep the minutia in my heart as her ability to do that fades. I pray that I can. To help her remember later and never correct her recollection, merely help her weakened mind.

Forever my love. That was our vow to each other. Forever. That is love. Her disability now is the reason we were brought together then. He knew she would need me. For that I am grateful. I did not think I would be when we first learned of the Parkinson’s but with each passing day I realize the gift He has given me.

Sometimes people are wonderful – Say Thanks!

Sometimes people you know do things for you purely from love and kindness and empathy. Say thanks to them. Often.

Dear Nancy,

Your gift of these words,

“ YOUR CROSS – The everlasting God has in His wisdom foreseen from eternity the cross that He now presents to you as a gift from His inmost Heart. This cross He now sends you He has considered with His all-knowing eyes, understood with His Divine mind, tested with His wise justice, warmed with loving arms and weighed with His own hands to see that it be not one inch too large and not one ounce too heavy for you. He has blessed it with His Holy Name, anointed it with His grace, perfumed it with His consolation, taken one last glance at you and your courage, and then sent it to you from heaven, a special greeting from God to you, an alms of the all-merciful love of God.”

from St. Francis de Sales mean more to me than you can ever know. I read this over and over several times.

This journey that appeared in front of Cheryl and me – Parkinson’s disease – occasionally tears my heart to shreds. At first, in the early years, she was the same as the girl I married many years ago. Recently, over the last two to three years I can detect a combination of mental deteriorations that often sadden me to the point where I get a powerful feeling of overwhelming dread. Lately I am greatly concerned that it will be beyond my ability to care for her in the not-so-distant future.

“… not one inch too large and not one ounce too heavy for you.” Believe me sincerely when I say that I wish I had your deep unbridled faith in something beyond you. And thank you for believing that I have that same faith.

I experience a wide range of emotional feelings mostly centered around caring for Cheryl. Sometimes it borders on depression. Sometimes I feel genuine rage and anger. Sometimes I envy others’ perceived good health. Sometimes I am deeply disappointed that Cheryl and I cannot do many of the things we used to greatly enjoy – she and I used to hike long distances in the woods, for example. And then sometimes I will read a story, essay or prayer such as the one you sent me which calms my heart. The essay or prayer will bring me back to earth and re-establish life’s meaning.

There’s a little story in your downstairs bathroom about foot prints in the sand. I am thinking of that now as I have re-read your card for the umpteenth time today and I listen to Cheryl talk to herself in the next room while she works on a sewing project for the grandsons for Christmas. (Her good periods are short and come and go quickly.)

I have come to believe that my purpose in being is to care for Cheryl and to fend off those who would take advantage of her weakened mind and frail physical condition. I probably take on too much responsibility for success or failure in that regard. I have not opened my heart completely someone beyond me to help with that. I admire your ability to find strength in your faith. I have not found that yet. Perhaps one day, but, for now I am still working on it.

Thanks once again for thinking of me and pointing out that He never gives one too much to bear.

Paul

Giving thanks to someone is humbling. And, though, I do not often use the phrase – I am blessed – My sister-in-law, Nancy, is there to remind me that I am in fact blessed but then she has been though a similar experience. She has the wisdom of hind sight and has chosen to look forward.