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

One Ear On and One Ear Off

Diddle diddle dumpling, my son John : Went to bed with his britches on. : One shoe off, and one shoe on; Diddle diddle dumpling, my son John — It is interesting what jumps into your head at odd moments.

This morning after sleeping in for a bit Cheryl was still sleepy when I checked on her and asked about breakfast. She decided cereal was good and I dressed the bed. She used the bathroom and when she returned began searching through things setting on the dresser in front of the mirror on her side of it. I asked what she was looking for and at first she did not want to tell me . Eventually she told me she was missing an earring.

She had worn her little star sapphire earrings to watch our grandson’s ballgame last evening. One was still in her ear. one was at that moment unfindable.

I had to attend a meeting at school this morning, so I would be gone for a couple hours. I promised that I would help her find the earring when I returned. Although I had extracted a promise from her that she would not disassemble the house looking for earrings, I knew that she would be thinking and searching the whole time I was gone.

Later after I came home from my meeting I looked for and found it. She had taken off one and put it in the jewelry box. She had left the other in her earlobe when she went to bed last night. She was very tired last night when she went to bed. She had had a long day.

Anna and the girls had come to take her to her exercise class. They went out to lunch at one of Cheryl’s favorite lunch places. That allowed me to go to my caregiver’s support group meeting at lunchtime. In the late afternoon we watched Max play baseball. It was a long day for her but she enjoyed every minute and she told me so on the way home from the game. “Thank you for the nice day, Dear.” she told me as we drove home.

The little ditty about my son John jumped into my head when I found her earring and became a hero to her this afternoon.

Diddle diddle dumpling my wife Cheryl

Went to bed with her life in peril

One earring off and one earring still

Unfindable in the morning chill

I find that I love her more each day and the debilitating disease of Parkinson I hate even more.

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.

This Morning there came a Little Girl

Cheryl got up very early this morning. I expected that but hoped for not.

Today we had an early eye exam. It is time for that once a year what is up with your eyeballs visit to the eye guy.

I angrily got up to get some breakfast for her but before that she was talking to someone. An apparition standing in front of her she described as a small girl.

After breakfast she walked into the bedroom several times. I asked her what was she looking for; could I help her to find something? She replied that she was looking for that woman who takes care of the little girl to find out what she – the little girl – might want for breakfast.

As the day moved on and her meds kicked in the apparition faded but Cheryl was angry that I did not believe her.

I believed her and I told her so. I merely could not see the girl.


An update; this evening Cheryl asked me if I saw that other woman tonight when we were sitting in the theater (living room). I answered no I did not but I was not paying attention to the other people. Cheryl said that she wanted to apologize for not talking to her about the little girl this morning.

There is some longevity to the dreamlike hallucinations.

This disease of Parkinson is relentless.

Carpe Diem.

Elevators, Showers and Kiddos

Overnight conversations seem to repeat with Parkinson’s patients. At least it happens in our home.

Yesterday we had an appointment with a dermatology wizard to look at and remove a spot suspected as a basil cell carcinoma. As a result my wife was anxious before going to bed. (I think I am getting used to this anxiety about future events.)

2 AM

Get ups and trips to the bathroom happen at two hour intervals when she is anxious. On the first trip I did not hear any of the usual thumps and bumps of using the toilet, so I got up to see if I could help. She was standing in the middle of the floor looking toward the closet door on the far side of the bath. How are you doing? — I asked. I’m waiting for the elevator. — She responded. I explained that the door was a closet and the toilet was over here, gesturing at the toilet and opening the closet door.

That seemed to knock her off the fence of using the toilet versus waiting for the elevator to go up or down. Afterward she came back to bed.

4 AM

I am going to take a shower so that I am ready to go to the dentist. (I saw no reason to correct dentist v. dermatologist.) pointed out that it was four o’clock in the morning and there was plenty of time to take a shower later. Her appointment was not until quarter ’til ten. She had used the toilet earlier. I convinced her that it was okay to get a couple more hours sleep before taking a shower.

Before going into the bathroom she sat on the edge of the bed and told me that someone was in there so she would wait. I got up to look. As I open the bathroom door I announce – get moving, Cheryl needs to use the toilet. Then I tell her there is no one there.

She usually tells me there were kids in there. Sometimes she tells me that Virginia was in there. (Virginia is our granddaughter. Cheryl sees her as a five year old.)

6 AM (maybe 6:30)

She is up again with a repeat of four AM activities. It is later now so the taking a shower thing is probably a good idea. I got her morning meds that she will take at seven. She took them a few minutes early and prepared for taking a shower. I went back to bed for thirty minutes of shower noise to wait for the extremely loud alarm clock to spew its wrath on the morning rest period.

Good Morning ALL, said the alarm clock. Off we went to the dermatology wizard and the rest of the day.

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

Another Morning Conversation

Today is the day after St. Patty’s day.  So what?   Nothing what except we are now three days into the asinine idea of Spring forward.  In another week or so we will be adjusted to the new med schedule but not yet.  I could spend several paragraphs discussing the odd arguments pro and con to the whole idea of time change but it seems to boil down to a cover-up for a scheme to get more golf daylight without having to negotiate with each individual employer to do so.  Who started this idiocy?

What a mess with a parkie!  For those of you who are not taking care of a Parkinson’s patient on a daily basis, it is a crisis in disguise.  The medication schedule is off by an hour all day long.  I know from previous experience she will be miserable for about thirty minutes before each dose and then about thirty minutes after each dose as the meds kick in and the chemicals stabilize.

Assorted confusions appear in her mind.  Early this morning when I got up and brought her her first dose of everything all seemed normal.  I sat on the edge of the bed and waited as she did everything she needed to in the bathroom and then took the collection of pills I had set on the bathroom counter.  When she was done I took the little glass bowl we use and the water glass back to the kitchen.  Usually when I return from that we have a little discussion about what is happening that day as she is deciding to lay down a bit more or stay up.  Today, she was still standing at the bathroom counter waiting.  I asked her if she needed something else and she responded with she was waiting for that guy to bring more pills.  I convinced her that there were no more pills for a few hours. And we had to go nowhere until noonish when her exercise class began.  She seemed satisfied with that and we napped for a while more.

I awakened about an hour later and realized she was in the bathroom again so I got up. In the daylight savings time darkness I could see she had laid out some clothes that she might wear if she was going to church. I gently pointed out that we are not going to church. We were going to exercise class later. Anger and confusion appeared so I went to the living area to prepare for the miny tirade with some coffee.

In the kitchen I helped her get some cereal and dried fruit for breakfast. Life cereal with dried cherries is her favorite combination for breakfast with some orange juice. She ate that and I had some scrambled eggs with toast.

Afterward she started. One minute we are going to church, the next minute you say we are going to a funeral, and now you tell me it is an exercise class. Which is it! I do not understand why it keeps changing. Pointing out that she was dreaming and when she awakened she continued on in the dream, although appearing to be the case, was not the explanation she wanted. She was certain someone (me) was trying to purposely confuse her and she was tired of it.

Joe Dater – cartoon

Last night was very tiring she told me. You mean the business with the address list? Yes she said. I thought there would be more so I took my coffee to the chair I often sit in. On the previous evening she was organizing her birthday and anniversary card list. I had hoped to help her and simplify this activity last year with a new planner from Staples. All of the information I have installed in a spreadsheet that Avery can read so that I can print labels for each card. I printed labels and last year she carefully pasted the label information on the proper page in the new planner. Each month she gets out two or three old hand written address books left over from her mother and from her office before we moved to the condo minimum. I asked where the new planner book was and she responded that she uses that but it was going to take a year or longer to get the correct information in it. I incorrectly pointed out that she had put the information in there last year which caused an angry response so I quit talking about it. Eventually she became tired, took her night time meds and went to bed. So did I. It was early for me too.

And then she became calm. She got her sewing project and sat down to watch the early morning news with me for a bit. And I might be understanding the confusion. The old address books are crammed with a lot of info in a small space. The planner — being a planner like a teacher might use — is organized by month and day. We labelled it with the correct info on the correct day but her cognition no longer allows for that recognition. To her, it is a big black book with almost no information in it. I may have to create a cross reference by name and family.

Exercise is more effective than drug therapy

On the way to class she suggested that we go somewhere for lunch. It started goofy but it may turn out to be a good day.

We went to our old favorite diner for lunch after the exercise class. We had not been there for more than a year. Her conversation was about the diner and old remembrances. The diner had been painted and the ceiling had been replaced. It was much brighter inside. Often something on the menu in one of these places will spark a memory of part of her family. This time an old friend that we had not seen for awhile strolled in to have lunch with her friend.

The pandemonium seems to slowly ever so slowly to be breaking free. “Hallelujah” is on the music loop at the exercise class.

Sadly the daylight will be saved whether it needs to be saved or not. Personally, I think not. The system is idiotic. Keep in mind China has only one time zone. Geographically that country is as wide as the U.S.

Chart from the U. S. Navy

And Parkinson’s will still suck. Just more so while we stand still and the time zone shifts left or right.

The Disease is Nuanced

Simple concepts are confusing.

As a part of our previous stimulus package spending we purchased new furniture for the living area of our condo minimum. (smiley face) The three pieces of furniture do not come with extra material to cover the armrests. My clever wife with Parkinson’s decided that there was no problem with that and she set off with a neighbor to the fabric store to purchase some suitable material to manufacture armrest covers.

Two of the chairs do not have arm rests that have a distinctive right and left shape. Those are easy peasy. The third seating area which is a small sofa has an ionic volute curve shape to the arms. Her arm covers have a right and a left shape to them.

The engineer in me leaped into the breach to explain how to make a pattern and plan to sew a right and a left. The Parkinson’s patient listened diligently but did not understand. Several efforts have produced two lefts, then two rights. two weeks later and listening to conversation between her and our niece who cleans for us, she is on the road to making a left which is finished and a right which she is working on.

She has started this several times before and somewhere in the project right became left. This time I will try to be unobtrusive and get to the sewing machine before right becomes left.

Parkinson’s requires gentle unobtrusiveness but it still sucks. Happy St. Patrick’s Day!

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.