After Reflection

When I started these thoughts on Sunday, I wrote that Sunday for me is a time for reflection. It is not the only time.

Thinking about the future of things while making the bed up and doing other needed chores for today — Qué será, será – Whatever will be, will be – an old Doris Day tune popped into my head. It made me smile. Was Elaine floating around today? Doris was a contemporary of Elaine’s in high school. Cheryl seems to sense her mother today. She has mentioned her a couple times in the present tense. This evening she asked if we could go visit her mom tomorrow. We will. She seems to know her mom is deceased. I did not remind her of that fact. Perhaps we will go visit her grave tomorrow and then find some lunch.

I wonder if I have planned well enough for our future. Whatever that may be. (Man plans, God laughs.)

Perhaps another meeting with the children is in order. I should make an agenda so that I do not forget anything.

Perhaps more reflection is needed.

Carpe Diem

Pieces of a Life

Cheryl has in her office files a phenomenal amount of random keepings of the pieces of her life and ours together. In her current state of Parkinson she will look through, take out, put back and reorganize these as she sees fit on certain days.

Pieces can come out of the office and land on the dinning room table for perusal and examination. A few days ago a real estate listing for our previous house appeared on the table papercliped to a receipt for home owners insurance for the first month that we lived there in 1980. If only I had been more interested in preserving the history of our small family I might be able to help her with discussions that begin “remember when… ?” I am disappointed in myself when I cannot help her. Much of that, for me, is lost in a fog of work, kids, school events, soccer games, parental worry, ( et al. ) none of which was collected in my memory with great detail.

I was adult then. Why can I not recall details like she can even through the mist of Parkinson? – although she has lost other memories.

Yesterday we went on one of our trips to a new place for lunch. She seemed to be doing well mentally and physically.

Tuesday we visited with her neurologist (MDS) which meant that Monday night through Tuesday morning she slept little. She was anxious to not miss the appointment. The rest of Tuesday and much of Wednesday was used up with recovery from lack of sleep, showtime for the NP, meds adjustments, pizza Tuesday with extra participants and simply mental fatigue.

These days her mind seems to have focused on Easter, so, much of our luncheon conversation centered on hard-boiled eggs, jellybeans, artificial grass and other items associated with Easter and Easter egg hunts. She ate her usual BLT and I had another sandwich with fires. We shared the fries. The Mason Grill was one of my favorite lunch places when I worked in my other career as engineer and Mr. Industrial Fixit guy. She remarked as we ate that she used to bring her Mom to this place and her Mom liked it. She reminisced about her mother and taking her to lunch when her mom was in assisted living.

Last evening she went to bed at the normal time and got up a few minutes later because her mind was racing around Easter services at our parish. She is unwilling to accept my premise that I will not let her miss anything important. I tell her this often. (In the background she recognizes that presence at church gatherings is not a high priority for me.) She sat at the dinning room table which has lately become her center of operations and read the church bulletin. She was very still staring at the bulletin for December 22, 2022. (I imagine inside her head her brain was struggling with Christmas : Easter : Christmas : Easter in a parkie way.) Words, dates and times lose their meaning in the evening.

I read my book for awhile longer and we went to bed at 11:15 or so.

Today I could not arouse her until 10AM. She was in the same position that she started in at 11:15 the previous night.

Another day passed.

Carpe Diem

And It is March

Sometimes pride about the achievements of grandchildren can overwhelm. Yesterday Anna sent a copy of the letter Audrey got from the Air Force inviting her to USAF Academy summer seminar session A. Anna’s daughter is interested in the Air Force, flying and going to school in CO.

THAT IS SO COOL!

… the universe is unfolding as it should…

We are so proud of her and her achievements. Cheryl and I wish her well.

Carpe Diem

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.

Children are a Joy

Even at somber occasions like funerals kids are a joy to the heart.

Verna’s funeral was today. (Cheryl’s cousin) Visitation was in church before the mass. Children playing hide and seek before mass in amongst the pews seems irreverent to many adults but not to me. The joy in their hearts shouldn’t be squashed or demeaned in any way. Some were wearing kitty ears. Some were wearing pigtails. All were dressed in their Sunday best because they were going to great Grandma’s funeral.

Funerals can be sad but not with kids around. One little guy spotted his Nana. He went to visit and scored a bag of fruit snacks. Nana is good for a treat. The same little guy needed the restroom in the middle of mass and upon the return decided to get back as fast as he could to Daddy. His father smiled and laughed with him when he returned. (Mom was more somber.)

Roman Catholic funeral mass liturgy is full of hope. There is a format but less ritual. The opening hymn was “Morning has Broken“. It is a good one full of hope and cheeriness. I always will hear Cat Stevens’ (Yusaf Islam) beautiful rendition of it in my head and because I like his music, the music of my youth, I know all the words.

Verna’s son, in his eulogy remarks, commented that someone had told him that he was now an orphan. I suppose one could say that since both of his parents had passed from this life but looking around the church full of family, children, grandchildren and friends, it seemed a poor term to describe this part of his journey through life.

Cheryl found and met with a couple cousins she had not seen for years.

She is making the snicker-doodles we started last night.

Carpe Diem.

Physical and Mental

These two aspects of the Parkinson Dilemma are frustrating from a care partner viewpoint. They are the source of laments and weariness. The grind can be debilitating in many subtle and unsubtle ways.

Physical disability is only recognized by Cheryl when she is so physically tired that she cannot stand up. And even then she fights the thought that she physically cannot do something. That something might be as little as getting up out of the chair that I put her in because I was worried about her falling. There must be a balance somewhere. So I help anyway without trying to be a helicopter helper and hovering about her space.

Her mental ignorance of her ability to do something – rare is the occasion that she will ask for help – is simultaneously frustrating and heartwarming. She wants to do it. If she starts it and I complete it she feels like she did it. (Ugh!) Her memory does not allow her to remember that I completed whatever it was. So I help anyway without trying to be a helicopter helper and hovering about her space secure in the fact that she will not remember and assured that it is unimportant for me to correct her when she tells someone – see what I did. (except when she tells the doctor.) Tee Hee!

Seize the day and make something new if things are not going your way. Parkinson is a progressive dilemma and in Cheryl’s case there is an element of creeping apathy. The meah factor appears as she loses interest in doing things – exercise, writing birthday cards, visits with friends, laundry, making cookies, taking down the Christmas tree and decorations and other things. A little push every now and then never hurts. She will not remember that it was not her idea if you are subtle with your pushes.

Today we will visit a cousin of hers who is in the hospital. She is uninterested in exercise class. The hospital will be a long walk so we will switch activities today. And then as we left the little lunch place and headed toward the hospital my son called with a request to pick up our grandson after school. More driving but out in the world today. We will go to the hospital tomorrow.

This is an old picture but it is how I see this woman, the love of my life, the place I am home. I see that smile less and less but sometimes early in the morning it peeks out of her face.

Carpe Diem even if you cannot.

Ago

When we were young Cheryl was a very good seamstress. She impressed me by making me and the boys a couple of shirts. I have no idea of the amount of work, effort and skill it takes to make other items of clothing but the year she made us custom fitting flannel shirts for Christmas I was super impressed. I still have a couple. The rest overtime I managed to wear out and fray most of them beyond repair. I can tell you that there is nothing, nothing better than a well tailored shirt. If you have ever had a shirt made for you, shirts off a rack are never the same again. Although I never owned one I can understand why men could spend thousands of dollars on a hand made suit. No wedgies in your armpits or elsewhere.

Today for whatever reason she has decided the pillows need to be trimmed differently.  Here we are in Joann Fabrics. It is hard for me to understand what she is thinking. She has a hard time expressing her thoughts. It is overwhelming like a lot things these days. I really do not know how to help her.

The plan that I conjured was to get outside before the inclement weather turned up. Maybe a walk even though it is cold the wind is still. And afterwards we can have some lunch somewhere. It is Sunday and we have no plans.

But she found her stash of earrings when she was putting her clothes on. I was in full on waiting mode in my little office hide away hoping to not get frustrated and jump in to speed her up. This is January in Ohio and it has been weirdly warm for a couple weeks and that usually means the crap is coming. I became anxious and went back to check. She was messing around with her earring stash. I reminded her we were going to take a walk and have a little lunch somewhere. Oh yeah, that’s right said she. She came out of the bedroom with a bunch of her earrings in a box to take to the jeweler for repair that they did not need. I pointed out that it was Sunday and her favorite jeweler is closed today. She said maybe we could go sometime this week and I readily agreed.

Let’s go take a walk and get lunch. Okay she said.

That all went out the window as we got into the car and she told me about Joann Fabrics and pillows and fringe and trim and once seam binding. Happily I knew what all of those were but had no idea why she was telling me or what she had in mind. I had a lot of questions. I reluctantly drove toward Joann Fabrics instead of our favorite park to walk in. Switching from earrings to pillows left me dumfungled.

I drove to Joann Fabrics and later after we had absorbed enough of the ambiance, we went to a close by Cracker Barrel for salads and pillow talk. This was a soft talking day and Cracker Barrel was a bad pick for quiet conversation but they did have a nice wood fire going near where we were seated.

Later when we got home she showed me the green pillow that she had been talking about. I think she made this waiting for one of our kids to get big enough to be born. I do not remember which one but this pillow has been in our household for several decades.

Carpe the sewing project Diem.

A Nice Dinner

We went to one of our favorite places to eat dinner tonight. Friday night with my girlfriend, best friend, lover, mother of our children and life companion. It was a good time. Christmas decorations are everywhere. People are visiting and gathering for the holidays. Bacall’s Cafe was loud. It was full of us old people chatting and eating and drinking and gathering. We were all catching up with each other and the world.

It seems to me that the smaller local restaurants have better service. Those restaurants seem to provide employment to the youngsters in the neighborhood.

Friday night has a special atmosphere. It always has for us. When we were younger and still working full time for others, it marks the end of commitments for the week. Often Cheryl and I would meet for a quiet dinner somewhere. Just us and our conversation was a special time to relax and take stock of things. When the kids were small Friday was often chaos. But those years passed by too fast and it was just us again.

These days I think that it is important to stay with her in her remembrances. If she wants to talk about long ago I try to stay with it. But I also try to gently steer her to the present if she has strayed far off the road. As we were driving to the cafe she asked me where I wanted to celebrate my birthday next week. — Her deceased father’s birthday is next week and her brothers had been talking about meeting for dinner somewhere to commemorate that event.

I am still on a learning curve with this sort of conversation but I calmly reminded her who I am and reiterated the conversation about celebrating her dad’s birthday. I switched the conversation to where do you think we should go? She switched it back to I wonder where Dad would go if he was here. And we went down that road for a bit until we arrived at the cafe.

AHA: Preserve any routines you can. Embrace any memories she has. Calmly help her find her way back to the here and now. Emphasis on calmly and watch the pitch and tenor of your voice.

Date nights are not always for the young. We had a long wandering conversation about the place we were eating. We talked about other places we have been. We talked about family. She had a coke. Years ago it would have been a glass of rose or white zinfandel. I had a gin and tonic. Years ago it might have been a nice single malt scotch. As we have aged we both like sweeter things. It was a good time.

As we were getting into the car for the drive home, one of her old time friends, Donna, called my phone. I almost did not answer. Robo-calls are annoying. Donna had gotten my number from one of Cheryl’s friends that she had met in church. She called to get together for lunch one day after the holidays. A new conversation about Donna happened on the way home. We will have lunch somewhere in a couple weeks.

Carpe date night Diem.

We Had a Frank Discussion

We had an open and frank discussion about me, my death, if it was okay to date, how I died or was no longer here, Capgras Syndrome, how it was that her mom died, and other topics. I explained “impostor syndrome” and that I was not dead. it took a lot for me to not openly cry as I began to understand her terror at not knowing what was going on around her.

We talked about our love for one another. I told her I would never leave her alone or as best I could not let her miss anything important. We talked about memory and how scary it is to not know what is next.

She was anxious about being home but not thinking she was home. In the midst of that our upstairs neighbor, Joe, bought me a couple cans of beer. A couple days ago we were discussing an article in a local magazine about the best microbreweries in the area. He had found some of the stuff that won.

Cheryl added Joe into the discussion about how she and he were working on the same project at the house. We went around and talked about going home and Joe had brought her home last night. I said that when she woke up she was home? Even though when she went to bed last night she was not home? Yes she said.

I explained to her once again that we were home even though she was unsure that we were home. (Another nuance of Parkinson dementia). Capgras can occur with things and places also. In Cheryl’s case it happens with time.

She knew she was home now.

She seemed calmer afterward. It wore her out and she went to bed early and was okay with me helping her to bed.

Carpe Capgras Diem. (but what a miserable fucking disease.) (sorry)

More on Parkie Time

There is lots of discussion about apathy and Parkinson. This morning I decided that Parkinson merely enabled Cheryl’s brain with a different sense of urgency or importance. Perhaps I needed to embrace that.

Last night as I coaxed her to bed her impostor syndrome was strong. We drove around for a few minutes and looked at the Christmas decorations while we “drove home”. It usually works and she thinks she is home. It did not work completely that night but she seemed to accept the fact that she was very tired and needed to rest. She went to bed with pajamas on the bottom and her normal daytime shirt on the top (just in case).

In the morning she slept late. When I woke her and got her going I pointed out that she had about two hours until her exercise class started, so she had to move it along unless she did not want to go. She refused to be speeded up and responded that I have been late before. She thinks exercise is important and wants to do it and enjoys it once she gets started. I know that it helps her too. But my sense of urgency and lateness is much different than hers.

I shifted my schedule to agree with her parkie time. My urgency evaporated along with my stress associated with getting her moving.

Small adjustments reduce stress

Carpe late Diem.