This Morning a small Success

I got up at about half after eight. We had been up at 7AM for meds and she went back to bed. I knew she had not slept well overnight. As I got up and she headed toward the bathroom, I talked about what the days events would bring. We have nothing on the calendar except for the exercise class, I told her. There is no church today. Today is Thursday. Yes, she replied.

I went to the kitchen to make coffee. As the beans were grinding I went out to fetch the newspapers. When I returned I set the coffee maker to making coffee and turned on the CBS This Morning show while waiting impatiently for the coffee maker to complete its task. Finally after an arduous four or five minutes where the succulent aroma wafted through our small living area the coffee genie made its happy gurgle and later a tiny beep. I poured a cup. Heaven is fresh bread straight from the oven and fresh coffee made from beans ground only moments before.

I carried my mug to my chair purchased during the waning days of the Trump administration with stimulus funds. I restarted the DVR recording so that I would not miss any of the covid, border, weather or political disasters. I nestled in for the first sip and looked at the WSJ front page. I few minutes later I checked and she was getting ready for church. I was in time to head that off with a minimum of anger from her that “no one tells me what’s going on”.

As I headed that off I reiterated that she did have exercise class today and she should dress for that.

After enjoying much more of my mug of joe I returned to check on her. She reported numb fingers and she was angry about it because it was causing her to drop things – her watch – and making it hard for her to put in her earrings. She thought she had broken her watch so she selected a different one.

The watch she was trying to put on was one which she rarely wore. It has a clasp that is hard to visualize even with the new reading glasses I got recently.

Cereal for breakfast this morning and a new thing – checking blood pressure – because of the numb fingers were at the top of her list once she came out of the bedroom dressed and ready for exercise. We left for PCF right on time. And then as we approached the parking area, zip, unzip, zip again, unzip again, different zip, the same zip as previous over again — I asked what are you missing? My little pill bottle. I want to find a Hall’s she told me. I helped her search to no avail.

Damn! We are out of Hall’s.  It is the only,  absolutely the only thing,  that can relieve a Cheryl scratchy throat.  (I am whining a bit. I have tried to push other solutions.  All have been rejected, alas.)  The fact that we are out was interpreted by me over time after a discussion about the Hall’s being kept in the upstairs bathroom cabinet so that the hallucinatory kids would not find them. (Smiley face) But we are out. I did not register the out part.

Later at PCF we searched the purple multiple zippered perfect purse but, alas again, no Hall’s in the little pill bottle. It fact there was no pill bottle. Where is that? It is not in the many zippered bag.

I left Cheryl to start her exercises and I went to Walgreens down the street to stand in line behind three people grocery shopping at Walgreens while I hold a bag of Hall’s that eventually cost me thirty-nine cents. I should not be a curmudgeon about it. I own Walgreens-Boots stock.

Carpe Diem

No Church Yet

Last night we sat outside for a bit and watched the International Space Station fly over. She was very excited to see it. She had found an article in the Cincinnati Enquirer a few days before that described upcoming events in the night sky.

We live on top of a hill and have a fairly unobstructed view of the horizon to the west. There are buildings, of course, but all in all not a bad view. After the the ISS disappeared from our view behind our building we went inside and she wrote this note to our children and a few other random family members. She wrote it in Word and printed it out and then asked if I could send it to our kids. This morning I did just that.


Hello, Anna, Scott, David, Janice, Jan, Nancy, Bill Farmer, Iris, Virginia, if I forgot someone, please pass this information along,

During this time of the year, there are often beautiful sights in the night sky. Paul is aware of these because he often researches some of the software that is available. You do not need to have access to special software… although it is
helpful. You can see some of the stars and planets without any special equipment; you can watch the International space station as it travels across the evening sky. These sights are magical! Many if you have clear skies at night… some of them are visible in the early evening. When you learn that there is a lovely event that is expected to occur, get the kids ready for bed, explain the event to them… where to look in the sky, etc., they should ask their
teachers about the night sky.

We found our information for tonight’s show in the Cincinnati Enquirer, the subtitle is “Crescent moon next to dazzling Venus.”, on page 5A.

Love,

Grandma. Aunt Cheryl, and any other relatives who may enjoy this.

The morning started pretty normal. The VERY LOUD ALARM clock awakened me to get her 7AM meds. I helped her to the bathroom and waited on the edge of the bed for the toilet to flush. She took her meds. We laid down again for a while.

Later I got up to find coffee and watched TV for a bit until Cheryl got up. She popped out of the hallway to our bedroom all excited because she could not find any underwear. In my stupidity I pointed out that she had underwear on just no pajama bottoms. (She was confused getting up this morning but I did not understand the extent of her confusion.) She was intending to get dressed for church but I did not realize this at the time. I was pleasantly ensconced in my Saturday morning coffee and newsy programs.

The newsy programs I have found to be not so newsy. The pattern is repetitive and to me boring — Covid we’re all gonna die; the latest political kerfuffle; desperate folks swimming the Rio Grande trying to get to Texas; some weather activity. Lately there seem few MASS SHOOTING events that make the news. Are they becoming commonplace? Or is it merely that most do not rise past some low bar of heinousness that is defined somewhere.

Nevertheless She was looking for underwear so I went back with her and found some undergarments which she pronounced good. I asked if she needed more help and she said no. I resist being a helicopter care person because it seems to anger her when I give unsolicited help. I went back to the coffee and pressed play on the DVR. This is a handy way to watch a two hour news show which is actually fifty-seven minutes long with a lot of breaks for commercial messages about Prevagen, Progressive insurance, the Good Feet Store, Kroger’s and the local weather. With a pre-recorded program you are able to fast forward through the windows direct USA.com and the rest of the crap that comes with commercial television. Cable TV is much better with no commercials and the inability to speed through the ads. (Facebook has this same model.)

After a suitable period of time, it takes concentration to speed up the saved file and catch the actual stories from the Saturday news show, I returned to the bedroom and realized my error. She was all dressed up for church and fidgeting with her earrings in front of the bathroom mirror. I apologized to her and told her that church was not for seven more hours. It is not time to go to church yet. But she was dressed and ready to go.

She blew up at me a little. “No one tells me. Neither of you told me anything!” I was two people. One in the mirror and one behind her. I admit I did not think of it. Almost everyday this week when she woke up she would ask, “What time is mass again?”

This seems to be turning into a constant in this life. For the past few weeks she awakens thinking it is time to go to church. I usually tell her – no this is (mon, tues,wednes,thurs,fri)day. Church is on Saturday afternoon. If she does not ask I do not tell. It worked for Bill Clinton, alas, not for me.


I find in myself an anxiety about getting something fixed before she spirals off into the weeds. By this I mean some task with which I have decided to help her. Her interests are not always my interests. Cheryl has taken on the task of sending thank you notes to those who have participated with or donated to the Sunflower Rev It Up for Parkinsons walk/run/ride last weekend. In this new world of no white pages phone books and no landlines it is harder to discover the addresses of those who have disconnected from the 48VDC copper transmission lines. For a parkie with no sense of how else to search that information it is impossible.

There is some confused repetition to her actions and to our life. I will tell her I will do something for her and find that a few minutes later she is doing whatever that may be instead of waiting for me to complete that task. I admit to not being johnny-on-the-spot about it. Her needs are not mine. Her interests are not mine. And I might have to gracefully let go of whatever mundane task I have given myself to do.

It stresses me a bit. I worry about letting her wander off into the weeds of Parkinson confusion, delusion, hallucination and altered reality. But it does provide some relief to me as long as it is not harmful to her. At least, that is my selfish view. Even now as I pour my inner thoughts into this commentary she is reading and re-reading a two year old story she wrote about the beginnings of whoopadiddee as though it is new.

I suppose the idea that nothing and no one cannot fix her confusion is most troubling to me. As long as she does not seem to be lost completely to me I let it flow around me. It is disturbing to my soul. Occasionally I am two people, the one who lives with her and that guy who brings the pills in the morning. Once in awhile I am Paul.

Alas, Carpe Diem.

Last night I was Someone Else

This whole hallucination, delusional reality thing that seems to have developed during this latest phase of Parkinsonism is truly disheartening.

Last night she addressed me as “Dad” several times. I tend to ignore it when she does this because much of the time she merely cannot find a name or a term for someone or something. Occasionally it becomes a little game that we play until I guess the correct person or thing. She responds with, “Thank you” when I find the name for her.

Sometimes, however, it becomes apparent that she is having a delusional episode. It becomes apparent suddenly to me. I do not recall the exact context last evening but I became aware that she did not know who I am. I asked, “Do you know who I am?” She replied, “Dad always says you are Paul.” My heart just broke when she said that.

It is a hard to describe the emotion. It feels like something in between fear, anxiety, anger, empathy, love and disappointment.

A deep love for her as we travel this journey. One foot in front of the other as we travel step by ever so slower step. We make every attempt to enjoy the scenery and smell the flowers. We take as much joy as we can in the moment. It is hard sometimes but in the last several days new life has come into the wider family and we are happy for the new parents, grandparents, aunts and uncles.

A great fear for her future and perhaps I dread the eventual realization that I might not be able to care for her alone. Those thoughts tumble down into the mire of money and will it last and for how long and how long will we need external support and how long and how long. These thoughts go nowhere. No one can see the future and if you are a deep believer, there is a plan somewhere. It sure would be nice to peek at it to prepare.

An anxiety about all of those things is a first cousin to fear. Meditation and journaling helps. It is not my make up to leave things in the hands of others.

I have developed an empathy through walking this road together with her. It saddens me that I cannot fix it. Much of that thought comes from the feeling that the Plan is being developed as we move along the road. That sucks, big time. The engineer in me pushes back on idea of starting the mechanism while it still being developed. Poor practice as that will really blow the service budget.

A few months ago I realized that the anger I feel, a deep despairingly fist hitting anger, is with the disease and what it takes from her. I am embarrassed to admit that I am not good at redirecting my anger into action. Or deflecting my anger away from her by keeping it out of my voice. I am just not good at that last. I apologize a lot.

All of those things add up to a disappointment with the situation.

On the next day she was lucid, not confused and fine. Go figure. “everyday is a winding road” – Sheryl Crow

Carpe Diem.

God Damn this Disease of Parkinson!

Yesterday was Hallucination day! I try to schedule very little for Monday. When I was still working it was one of those days that it was unnecessary to plan. Monday usually awoke with a bang and set the tone for the rest of the week. These days it is merely “wash the bed linens” day.

Yesterday which was Monday also was Hallucination Day. Cheryl’s little girls visited for most of the day. They were vividly apparent to her. She talked to them while she was working on organizing her stuff.

I had taken her medication to her in her office on Sunday evening. She was talking to her cousin and spilled the water on a couple of address books that she uses to organize the birthday card activity. A disaster occurred when the books got wet. Yesterday I got the hair drier out and showed her how to use it to dry the pages. She spent a couple hours and an enjoyable conversation with – she said – Virginia. It seemed harmless so I went with the flow. I worry about the eventual outcome.

An aspect of this is that I am able to get her to come back from who she sees by talking to her directly and getting her to tell me who or what she sees. At least she doe not see visions of horror. A drug she took about three years ago caused horrific visions especially at night.

These days she sees her sister Janice and our granddaughter Virginia mostly. Yesterday she saw her Dad, Mom and my mother. She had a long conversation with my mom on the back porch as she swept some twigs and dirt off it that was left by some storms that passed over during the past weeks. When I asked her to come in to eat dinner she asked if my mother was eating with us. Pointing out that Mom was dead dissipated the vision.

The hallucinations are activity related. She talks to Virginia when she is doing arts and crafts. Janice shows up at night when she is sleeping or awake to go to the bathroom. Her mother seems to appear when she is thinking about and working on the card list. It seems like she occasionally mistakes me for her dad when I am working on some household project. Our sons come and go at random in her reality. She often thinks our youngest is here when we are getting ready to eat.


A favorite organizational chart or crafty Venn Diagram

Every now and then the whole confusion and got to get organized thing adds together with the memory thing to make life miserable for a few minutes or hours while I try to locate an important something for Cheryl. Today it was a couple of checks that her friends who are not internet savvy gave to her to donate to her sunflower fund raiser. She put them in a special place while I was not paying attention. Just when things are going smooth and the road looks straight a tire blows out and the vehicle veers off into a ditch.

It is much easier when I can see where she stashed (whatever) in the Special Place. The checks were discovered inside an old envelope from our nephew Stephen that was used to mail a thank you card to his grandmother now deceased. I suppose the envelope was kept because it had a current address for Stephen at the time. Why it was not recorded and then pitched is beyond this humble person’s understanding. Why it is in our house ten years later is less so.

Caregiver Anger — Damn this disease! In her confusion she found this envelope parked where Jill and Michael’s envelope had been parked for weeks. (The Special Place).

It is possible to laugh and cry at the same time.

It would be so much better if she was merely slow and stiff. I say this without meanness. If this was merely a physical disability. It might be easier for me personally to deal with but I am merely speculating. The mental difficulties come and go. They go less so of late. Mentally she is still young and agile. In the present she is older and fragile.

I worry about her falling and then she tells me she can not find something. I help her to find it and she is sorry to have brought an extra task to me so she puts herself in precarious positions to help look for it.

It is a repetitive story.

Carpe Diem.

Sweet, Fruity and Well Balanced

That is written on the front of my often bought bag of Eight O’clock coffee. I thought a good life philosophy.

Overnight was a hard one. Cheryl has been having a rough time sleeping at night. She has the normal seventeen trips to the bathroom overnight that occurs with any older person. Her Parkinsonism intensifies this experience.

The past few nights I have trained myself to get up with her. I have tried to get my system on her schedule. We started this because a few nights ago she awoke in a panic. She worries about incontinence. In her dreamy wake up at one o’clock in the morning, she was certain it had happened. She awakened me and I helped her to get cleaned up and new pajamas and other anti-leak equipment. (The pajamas she wore to bed were fine as were the other things but in the early morning dreamy state it is not important to argue.)

Since that experience I have awakened with her to guide her and help. I have to admit I am cranky pants in the early morning hours. It is sometimes difficult to get her interested in going back to bed. I have taken to hiding her medications occasionally because she has taken them in the middle of the night. I am uncertain that I will wake up with her and I worry that she will over medicate and inadvertently harm herself.

Last night and early morning was particularly bothersome. We got through it. I let her sleep a little later than normal before I gave her the mornings meds. She and I came to bed afterwards and slept a little longer.

Today she is very tired. She told me this earlier after her second dose of meds for the day. I told her I was not surprised at that as she had not slept well the night before. She replied that she did not remember. It seems unimportant to discuss overnight difficulties with someone who has no memory of events. I dressed the bed and helped her to lay down for a late morning nap.

Maintaining sweetness, a fruitful and well balanced life as a caregiver to a person with a chronic affliction can be hard. I have no mystical, magic or wise solutions to the stuff that pops up. Meditation does help to calm the caregiver.

Meditations (From Davis Phinney website)

[1] The first one-minute meditation involves counting your breath cycles. You count every exhalation from 1 to 10. Once you reach 10, you can go back down to 1 and continue the cycle as long as you’d like. In the audio recording, with my breath cycle, I only counted from 1 to 10 once in the 1-minute meditation.

[2] The second one-minute meditation is also a breath counting meditation. You count at the beginning of every breath cycle before each inhalation. We count cycles of 10 breaths. Once you complete 10 cycles, you go back to one and continue the cycle.

[3] In the third one-minute meditation, we take a breath before we begin to notice where we feel the breath most acutely. It may be at the tip of the nose, in our chests, in our bellies, or somewhere else. For the entire minute, you focus on the region of the body you feel most throughout each breath cycle.

[4] In the fourth one-minute meditation, we follow the entire breath cycle with our full awareness. We follow the breath from the first area we notice it (for me it is the tip of the nose) until it expands our chest and bellies, we pay attention to the way it feels when our lungs are full of air, and then we follow our full exhalation. We continue to be present with our breath and bring full awareness to the sensations of inhalation and exhalation for the entire minute.

[5] The longest guided meditation is a five-minute body scan. Body scans often range from 15 minutes to 45 minutes; however, similarly to the breathing meditations, I wanted to make this a shorter introduction to the experience to see what feels right for you. We scan from the feet to the top of the head, breathing as we bring awareness to each new area of the body.


This small list of meditations help with calm. They work for me sometimes to help me relax.

Carpe Diem

The Parable of the Lost Mind

The Parable of the Lost Coin; Luke: 15.8 – Or what woman having ten coins (when I was younger, this was talent) and losing one would not light a lamp and sweep the house, searching carefully until she finds it? And when she does find it, she calls together her friends and neighbors and says to them, ‘Rejoice with me because I have found the coin that I lost.’

This story came to me as do lots of stories from the bible and elsewhere after a cataclysmic episode in our life with Parkinson’s damnable disease.

This morning was a confused and befuddled one. This is not unusual in any way with this annoyingly debilitating disease. As a caregiver I just pay attention to be assured that nothing catastrophic happens and when it happens one just cleans up as best as you are able. This morning after she had a light breakfast of cereal, two muffins, orange juice, apple pie and tea she went into her office to check things. I heard her talking into her closet as I passed by with a load of laundry.

After loading the washer I asked who she was talking to. Often she would answer these two women or these two girls, this morning she responded with ‘myself’.

She told me that she could not find the stack of yet to be mailed birthday cards that we had put together the week before and propped next to her computer. She was frantic to find them. (Like the woman in Luke’s story.) I told her the cards where there somewhere probably just under something and not immediately visible. As I went out to gather the rest of the laundry I looked in all the usual places for the stack of cards. After I made my circuit and put the rest of the laundry near the washer I checked on her again.

She had found the cards. They were turned face down on her desk and underneath some collection of printed emails that where clipped together. She explained that and then spontaneously burst into tears.

The saddest, most maddening thing to a parkie with the beginnings of Parkinson’s disease dementia is the knowledge that her cognition is deteriorating. Sometimes she is acutely aware of missing pieces of her memory. Sometimes she is unaware. When awareness comes occasionally we hug and deteriorate into tears for a bit. We contemplate the next steps of our journey. We take time to feel a bit sad to realize the journey is becoming harder to do. The steps are harder to take.

It is hard to remain upbeat. It is okay to cry occasionally and let the emotion out.

I admire those who are able to remain upbeat. Parkinson’s disease sucks!

Carpe Diem.

Occasionally to Her I am a Different Person

“Not everything that is faced can be changed, but nothing can be changed until it is faced.” 

James Baldwin

I do not know much about James Baldwin. He was a black man and an author. He wrote “Go Tell It on the Mountain” and other things. He died a while ago. This quote which I tripped over this morning reading through other articles not from mainstream media as my sister-in-law likes to say, spoke to me. Lately, Cheryl has been struggling with seeing extra people in our home and upon occasion, though not wondering who I am, seeing me and sometimes not seeing me.

Yesterday evening she asked me if I had talked to Paul about something. I do not remember what the something was. It was not important . I quickly realized that she thought I was not me. I replied with I am Paul.

These moments seem to come early in the morning or late in the evening. It is dark. The lights are on here and there.

She talks about dad doing this and dad doing that. The first time she started telling me about dad was when I changed the dimmer switch on the light fixtures in our master bath. I had added a newer dimmer control with a toggle. I had thought it to be more convenient for operation in the night. It is and she approved of its installation. She told me so that night by saying – did you see the new light switch dad put in? It works great.

I did not ask who she thought I was. I merely acknowledged that it was a good thing that he put it in the bathroom.

That guy who brings the pills… is a common early morning remark lead in to some comment I said when I got out of bed to turn off the alarm and retrieve her first dose of medications for the day. There are many of these; That guy who brings the pills in the morning, he said we were going to the store today. (for example)

Extra people appear to her in our home. Not religious apparitions but little girls and sometimes their guardian an older woman will appear with them. A few days ago when I returned the bowl that had contained her pills and the water glass to the kitchen, she asked me what that woman wanted. I told her that there was no woman there. I was merely putting the glass away. She accepted that.

For many months, I had accepted that this observed change in her behavior and thinking was just a natural progression of Parkinson disease. This behavior does not present itself when she and I visit her neurologist. I sent him a note before our last visit. We talked about it at length when we were there last time.

We are in the midst of slight medication adjustments and a series of pathology tests to rule out any physiological problems that could cause symptoms such as these.

So far these are all negative which makes me a bit sad. She is in the minority of parkies that the disease affects her cognitive function.

It is now more important than ever to seize the good moments, live in the present and jettison the anxiety for the future.

Face the thing. Maybe the outcome can be changed. As a caregiver do not forget that you have greater knowledge of your loved one than the doctor does. Tell the doctor what you see. It will help to find a solution.

And don’t forget to Carpe Diem!

Who are you?
Who, who, who, who?
Who are you?
Who, who, who, who?
Who are you?
Who, who, who, who?
Who are you?
Who, who, who, who?

— Peter Townsend

Why Does It…

Why does it make me so angry? It seems as though our entire married life these days is caught up with this disease of Parkinson.

In our younger lives we would have lively discussion and even arguments about stuff. Issues of the day, kids doing this, kids doing that, where to go on vacation, what color to paint the walls, any or all of those things were up for grabs. Those sorts of discussion are lost to time.

In the fifty years since we married, we have had many discussions and arguments. It is impossible to not argue with the one person in life whose knowledge and opinion you value more that anyone else. If I did not care for her greatly her thoughts would be of no import to me. Parkinsonism has changed this in our lives. She does not have the strength of mind to fight back and stand her ground in a discussion. I miss that.

I think that part of what makes me so angry is the fact that it is unfair for me to be so. There is a creeping despair that enters my heart when I come to the realization that I am treading on her heart. It is a kind of slow motion grief.

I worry for the future and what that might bring. I am often longing for the past when the independent Cheryl that I married was still my partner in life. She has ceased to be that. In ever expanding little steps she has given up her independence. She leans more and more on me. Perhaps some of my rage manifests because I do not want to accept the responsibility of her dependence.

Perhaps in my heart I want her to heal and despair of the fact that it will not happen. When obvious confusion appears it terrifies me to realize I was not paying attention at the time.

Perhaps in my heart I struggle with the patience necessary to hear stories repeated. Perhaps my anger arises from the retelling when I have shifted my thoughts to something that I has my interest and I am unwilling to give attention to the retelling.

Perhaps it is tiring to live in the present. Perhaps there is no solution except to live in the present.

Carpe the damn Diem. This Diem is now gone and was not seized.

An opportunity lost and it makes me angry and a little sad.

It’s the End of the World as we Know it!

A nifty song by REM playing on Pandora or something when I took Cheryl to a physical therapy session with a nice young man from U.C. Health in Cincinnati. I wondered in my head, is it?

It’s the end of the world as we know it (time I had some time alone)
It’s the end of the world as we know it (time I had some time alone)
It’s the end of the world as we know it and I feel fine (time I had some time alone)

The lyrics are kind of stream of conscience similar to “We didn’t start the Fire” by Billy Joel. It made me think, is this a new way we are going to operate from now on? Mr. Joel’s song is an earlier history of an earlier century. But then he is about my age.

So, is it the end of the world as we know it? Is it the new normal? What is normal? My normal is probably not your normal and why do I hate that comment about it is the new normal. Simply put, what is IT? For a Parkinson’s patient abnormal physical difficulty is common. The part of the disease that is hidden, mental confusion, memory loss, delusion and sometimes hallucination is also normal.

Today for the first time I thought seriously about quitting the little part time job I have with a local community college because it takes me away from Cheryl. And yet, I need time away from her and the care giving. But I believe I need the time away to be on my own terms.

Perhaps I want to take a walk in the park by myself in which I am not part of her support structure. Perhaps I want to walk at my own speed which is much greater than hers but did not used to be. Perhaps I want to take a walk were I do not have to slow to a pace less than a stroll to allow her to stay with me. There are times when we creep around the circuit and I try to get her to take full steps. Perhaps this Parkinson’s has gotten into my head far enough for me to ignore my own needs.

Cheryl really likes to walk but it is a struggle for her. She really likes to play Scrabble but it is a struggle for her. She likes to think about and organize her support group for Parkinson’s folks but it is really a struggle for her. Lately she has decided to do puzzles, well one puzzle so far, as a hobby but it is a struggle for her.

This is normal. There is nothing new about it. It is not the end of the world as we know it. It simply is the world we have.

Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

– Max Ehrmann Desiderata

Desiderata by Max Ehrmann has become for me a meditation. I try to not distress myself with dark imaginings but on some days that requires drawing strength from a reserve that is depleted.

Michael is right. Parkinson’s sucks. Stay calm. Keep moving forward.

You have to Laugh Occasionally

Date dyslexia

I have date dyslexia. There is no such thing! I hear you saying that. And maybe there is not a definitive malady called date dyslexia but I describe it thus. I know my wife’s birthday. It is May 10. On May first, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside. On May second, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside. On May third, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside. At this point I am sure you can understand where this process is going. On May ninth, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside with no more urgency than May first.

I know when her birthday is but I have no concept of whether that is a couple days away, a week away or a month away. Actually months are easy because they have different names. Over the years I have employed various devices to overcome this dilemma and I became quite good at fixing it in my business life and when Bill Gates and the boys invented Outlook, let’s just say, it was a dream solution. Now, however, I am retired and do not own Outlook on any home computer or computer-like device. We do have a wall calendar and I have a desk calendar given to me by our financial champions who manage our affairs. These two devices give a visual image of the map of the month and where activities lie within it. All that is necessary is to look at one or both calendars. If only it was that easy.

Date confusion

One of the symptoms of Cheryl’s Parkinson’s disease is confusion about time of day, day of the week, week of the month. Sometimes looking at a calendar – I think of the wall calendar as hers and the desk calendar as mine – specifically the wall calendar does not enable her to get her bearings about where we are in the months activities. This is bad news for me because she was the anchor of our family and social activities throughout our life. Countless times I have had to cancel plans made with my buddies after discovering that my golf game, beer bash or something was going to clash with another prior event scheduled on the calendar. No more! The guy with date dyslexia is left to manage the wall calendar events. Woe is us!

Winter in Ohio

It is winter in Ohio and in southern Ohio that means occasional visits with the white death of snow. Good news for the bakeries and dairy farmers. Bad news for the schedulers of doctor visits and for school administrators not as bad as it could be given the current stay at home covid climate.

What’s happening this week? – is the often asked question while she is staring at the calendar in the hallway. I responded with, “nothing today but tomorrow you will get your covid booster shot.” Spoken by the guy with date dyslexia. She responded with, “no it’s not.”

Angel Food Cake bird feeder

I had been concerned with the relentless weather reporting of inches and inches and maybe feet of snowfall predicted for the southwestern part of Ohio. I was worried about the second booster shot and making sure she was there to get it. I help out part time at a local community college and had already forewarned them that this booster appointment was going to affect my availability this week. As I walked up behind her to view the map of the month she and I both realized that she was tuned into the correct week after all and I had mentally moved her booster appointment up by a week.

I laughed at myself. Today she has both oars in the water. And my dyslexia was still active.

For me as a care giver to Cheryl, it is a stresser. Perhaps I need to lighten up and realize that I signed up for text message alerts about appointments. All would be well with the date dyslexic disability.

Sometimes with Parkinson’s the caregiver becomes the caregivee.