It is February

February is a melancholy month. Thinking back to childhood, it is the coldest month. In four weeks it will be March. March is the first happy month. The world is waking from winter.

February is like the early morning. The care partner gets up quietly so as to not disturb the early morning peace. He stretches and puts on a sweater. He makes coffee. He opens the shades to see the sunrise. (Shifting person lets me step outside of myself.)

Cheryl is sleeping late. Early in the day yesterday she was showing signs of her impostor delusion so I got her out of the condo.

She is upset with the passing of her cousin Gerry. Janet, Gerry’s sister, called yesterday to report the news of his passing. We talked on the phone for a little while. I put the phone on speaker so Cheryl could hear and participate. All of us reminisced for a bit. After Janet hung up, Cheryl got up to get dressed. In that interval she became the person in charge of Gerry’s celebration of life. She decided she needed to pack for the trip. I helped her for a bit.

On the fly I conjured a tour of the countryside. I was not sure of where other than simply out. I sent a big long text to her brothers and sisters so they would be aware of her mental state if she abruptly called them.

We visited her mother’s grave. We had talked of this for a couple weeks. She often loses the fact that her mother has passed away. I struggle with ways to gently help her understand that I cannot take her to see her mother. For a moment yesterday she seemed surprised to read her mother’s name on the stone. It broke my heart to realize that this is the thing she cannot remember, her mother’s death. Cheryl and her Mom were very close. Her dementia was at the very beginning about five years ago when her mother passed away. I suppose I did not realize at the time that she had shoved this knowledge into a place where it was not easily retrieved. Gerry’s stay in Hospice and our visits to see him bought back a flood of childhood memories.

The written world and its words are a jumble to her. She told me that Mom would stay here until she is cremated. I drove her to another part of the cemetery where our niche is located waiting for our cremains. I do not think she understood that she had become her mom in her thoughts.

I let that go. I decided I was trying to fix an impression that did not need correcting. Often in her conversation she is a child, her mother, my wife and mother to our children and occasionally I become Dan, David, Scott or, in the very early morning, Janice all within the same five minutes of conversation. She wondered aloud if the cemetery office would know where Gerry was to be buried. I replied that Gerry was going to be cremated per his request and his remains interred in the parish cemetery in Kentucky. Oh she replied.

I started a conversation about where to go for a walk when we left the graveyard. She said we could go to Mom’s house and then corrected herself to say, “where Mom used to live.” Internally I smiled. It seemed to me there was hope. It is February and we are in Ohio.

I suggested lunch first, so, we discussed various places nearby. We landed at one of Ohio’s claims to fame, Bob Evans’s Farm Restaurant. There are a bunch. One was close by and it was the one she would take her mom to occasionally. While waiting for our food we chatted about various topics. I sent a text to my son David and asked if he would be home in the afternoon. We had forgotten our pie plate and the carrier and I thought to retrieve it. He lives far enough from us that Cheryl would get a sense of “going home” from his house.

When we arrived at David’s house a neighbor’s garage was on fire. It was several yards and a street away but it added a certain amount of urgency to getting in David’s driveway and added a discussion of events totally unrelated to Gerry’s death. Melissa made fajitas for dinner.

It was a good outing. Cheryl was exhausted when we got home. Later this week I may probe her memory of her mother. (or not.) This was a long rambling story about a day that made me anxious about her mental state which seems to be deteriorating quickly some days and some days not.

On this morning, the day afterward, she did not open an eye until I awakened her at ten o’clock. She had not changed position from when I got her into bed at just before ten the previous evening. She did not stir when I came to bed an hour or so later. She did not stir overnight when I made my usual couple trips to the bathroom. It seems as though she sleeps more lately but sometime she is agitated about something in the evening and when I ask she is unable to vocalize her thoughts.

Dementia and Parkinson’s are miserable companion diseases. (And they both suck.)

Carpe Diem.

Semper Fi; Adapt To Change

Our son was a Marine. Their motto Semper Fidelis, Always Faithful, is a sentiment I apply to our union. We made a similar vow to each other fifty years ago. Each day is a new day to renew our pledge.

Some new thing comes up all the time. I have to say this up front so you can understand the rest. Cheryl has Parkinson’s Disease (PD) and generally it sucks. Lately, it seems, I may have discovered a silver lining to this malady. Because after a dozen years or so down the road, we are more sedentary. It is unintentional this sedentariness but it is good preparation for the Covid-19 stillness that is imposed upon us. In the early days of the pandemonium the story seemed to mirror much of the apocalypse fiction written by Steven King – The Stand; Micheal Crichton – The Andromeda Strain; and others.

Apocalyptic fiction, of which I have read much, centers on two themes. Either there is some sort of catastrophic war/explosive event or there is a viral/bug/bacterial disease. Both somehow wipe out 96.4% of the global population. 0.6% wind up in a terrible struggle for dominion with the other 3%. I recommend reading none of this fiction while hanging out and waiting for the Covid-19 pandemic crisis (or non-crisis) to complete God’s plan. I did not follow my own advice and finished Justin Cronin’s trilogy: The Passage, The Twelve, The City of Mirrors. But I have digressed.

This pandemic has taught Cheryl and me much about ourselves. We are able to learn new skills such as ordering food online and picking it up a week later. This of course is a memory test to discover if us older folks are with it. This experience is not as satisfactory as ordering from Amazon or Walmart online and having the items delivered directly to your door. The memory test is still present, however, and it is tricky to not order the same item from three different suppliers because you have lost track of who is sending you what when. Some days are like Christmas, your birthday and St. Nicholas Day. Other days are like meatless Fridays.

For better or worse we have learned how to do video doctor visits, video fitness center visits, video physical therapy exercise visits, video Easter gatherings, video faculty meetings, video classes, video masses, video funerals and video do-overs because the WiFi is overwhelmed. Sadly network television, much of it anyway, is one big video conference. The talkers speaking from their bedroom/office/basement/dining room suddenly had to design background. Looks like the intro to the Brady Bunch. Sorry, I have digressed again.

All this video was put in place to give newly created manufacturers the ability to keep up with demand for buffet sneeze shields that are no longer needed by restaurant salad bars and have been newly located at checkout stations in groceries, pharmacies and doctor office locations. This pandemic could be the death of Golden Corral. I do apologize for another digression.

Parkinson’s causes us to stay in a lot but the pandemic has taken away what little go out time we had left. It was easier when I could see that Cheryl was doing well and suggest we go somewhere for lunch at some arbitrary time during the day. Sometimes lunch was late enough that we had to skip dinner and go directly to Aglamesis Bros. for desert. (Sorry again, I grew up in Oakley.) We would do this because predictability of well-being is difficult with a parkie, so you seize the moment. When the day is good we tend to pack it with goodness. Our life is constant adaptation to new developments. Living day by day is a reality into which one is pushed by the persistent ups and downs of the symptoms of PD.

Improvise, adapt and overcome is another tenet of the Marines. I like to use that attitude when new symptoms and difficulties appear as PD progresses. Over the course of the disease, a complicated and long list of symptoms and medicinal side effects are dealt with by the doctor, patient and caregiver one by one. Medical sources describe them all but not all parkies get all the problems. Those patients dealing with PD (parkies) are susceptible to the regular, run-of-the-mill old age crap that comes along; bad feet, sore muscles, sciatica, back ache, cardiac problems, UTI’s, yada yada, yada. Old age is a bitch and then you get Parkinson’s. Sorry, again I have digressed. (smiley face)

So, why exactly is it necessary for us to curtail our “go out” time in the midst of a pandemic? Are we any more susceptible than others to colds and viral issues. No, we are not. But in general going to a hospital for treatment is bad for parkies. The critical regimen of drugs, food, rest and exercise is foreign to the routine of a hospital. Both non-pandemic visits to hospital, two different healthcare providers, have been unsatisfactory. Hospitals simply appear to be unequipped to care for parkies with the same regimen used to by the caregiver. As caregiver and advocate for Cheryl, it is unimaginable how much worse that experience would be if I was not there to speak for her. It is too scary to think about. The idea is to stay away from hospital.

Adapt to change, always faithful, adapt and overcome, slogans to use for one’s own advantage against the annoying inconvenience of Parkinson’s Disease. Perhaps one day there will be a final solution that is not death.

(You though I would end on an up note, sorry.)

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.