The Books Showed Up

Generally I like mystery stories of some sort. I am a big fan of and have read all of John Sanford’s (Cloud’s) Lucas Davenport and Virgil (that fucking) Flowers series. They are entertaining but not mysteries. The last couple with Letty are mechanical in structure. John may be losing me as a fan. As I look at the library website and read other things, I make note of, or if I have my communication device (phone) with me and can look for whatever book was mentioned, I put the volume on hold at the library if they own it or are buying it.

That last sentence looks cumbersome and may need restructuring. Sometimes the book takes weeks to appear at my local library branch. occasionally several will arrive simultaneously. This simultaneous arrival of several books happened on Friday, I responded on Saturday and another appeared. Alas, I have six books to read or at least peruse before I return them. These six are in addition to the several e-books that I have borrowed and downloaded to my Kindle. I do not read everything that I borrow or download. I give the author a chance, perhaps, ten or twenty pages, before I decide too bad a bummer.

I have a lot of nothing to do lately. It consumes my whole day, however, it is interesting and amusing to me that I can spend all of this time with nothing to do doing nothing and not lose interest. How I tripped over Anne Lamott is a true mystery and I love mysteries. Did I say that? Already? Was Cheryl talking to me? Her book, “Small Victories [Spotting improbable moments of grace]” is not one I would have selected while shopping at the library, nevertheless, it showed up on the holds shelf for me. I did not steal someone else’s hold (I checked) but I wonder what was going through my head when I put it on hold. I put the hold on the LARGE PRINT addition which is often available when all other versions are out which means I felt an urgency to finding a copy. This is truly mysterious.

Her book is a collection of essays about life, faith and graciousness in adversity. We all have adversity fall on us at some time on life’s journey. Cheryl’s death hit me pretty hard even though she died mentally a couple of years prior to her actual death. Anne’s book was on top when I set these six down near where I often sit in the evening to read or find some old movie (or new one) on Prime, Peacock or one of the other streaming services for which I have subscriptions. (Movies get a mere five minutes to gain my interest. I forgot how good JAWS is and the bad science of compressed air bottles.)

Anne entitled this story, simply, “Ashes” and since Cheryl was cremated the story title attracted my interest as the one to read first. I started her anthology in the middle.


Ash Wednesday came early this year. It was supposed to be about preparation, about consecration, about moving toward Easter; toward resurrection and renewal. It offers us a chance to break through the distractions that keep us from living the basic Easter message of love, of living in wonder rather than doubt. For some people, it is about fasting, to symbolize both solidarity with the hungry and the hunger for God. (I, on the other hand, am not heavily into fasting: the thought of missing even a single meal sends me running in search of Ben & Jerry’s Mint Oreo.)
There are many ways to honor the day, but as far as I know, there is nothing in Scripture or tradition setting it aside as the day on which to attack one’s child and then to flagellate oneself while the child climbs a tree and shouts down that he can’t decide: whether to hang himself or jump, even after it is pointed out nicely that he is only five feet from the ground.
But I guess every family celebrates in its own way.
Let me start over. You see, I tried at breakfast to get Sam interested in Ash Wednesday. I made him cocoa and gave a rousing talk on what it all means. We daub our foreheads with ashes, I explained, because they remind us of how much we miss and celebrate those who have already died. The ashes remind us of the finality of death. As the theologian said, death is God’s no to all human presumption. We are sometimes like the characters in Waiting for Godot, where the only visible redemption is the eventual appearance in Act Two of four or five new leaves on the pitiful tree. On such a stage, how can we cooperate with grace?
How can we open ourselves up to it? How can we make room for anything new? How can we till the field? And so people also mark themselves with ashes to show that they trust in the alchemy God can work with those ashes — jogging us awake, moving us toward greater attention and openness and love.
Sam listened very politely to my little talk. Then, when he thought I wasn’t looking, he turned on the TV. I made him turn it off. I explained that in honor of Ash Wednesday we were not watching cartoons that morning. I told him he could draw if he wanted, or play with Legos. I got myself a cup of coffee and started looking at a book of photographs. One in particular caught my eye immediately. It was of a large Mennonite family, shot in black-and-white: a husband and wife and their fifteen children gathered around a highly polished oval table, their faces clearly, eerily reflected in the burnished wood. They looked surreal and serious; you saw in those long, grave faces echoes of the Last Supper. I wanted to show the photograph to Sam. But abruptly, hideously, Alvin and the Chipmunks were singing “Achy Breaky Heart” in their nasal demon-field way — on the TV that Sam had turned on again.
And I just lost my mind. I thought I might begin smashing things. Including Sam. I shouted at the top of my lungs, and I used the word “fucking,” as in “goddamn fucking TV that we’re getting rid of,” and I grabbed him by his pipe-cleaner arm and jerked him in the direction of his room, where he spent the next ten minutes crying bitter tears.
It’s so awful, attacking your child. It is the worst thing I know, to shout loudly at this fifty-pound being with his huge trusting brown eyes. It’s like bitch-slapping E.T.
I did what all good parents do: calmed down enough to go apologize and beg for his forgiveness, while simultaneously expressing a deep concern about his disappointing character. He said I was the meanest person on earth next to Darth Vader. We talked, and then he went back to his drawing. I chastised myself silently while washing breakfast dishes, but then it was time for school and I couldn’t find him anywhere. I looked everywhere in the house, in closets, under beds, and finally I heard him shouting from the branches of our tree.
I coaxed him down, dropped him off at school, and felt terrible all day. Everywhere I went I’d see businessmen and businesswomen marching purposefully by with holy ashes on their foreheads. I couldn’t go to church until that night to get my own little ash tilak, the reminder that I was forgiven. I thought about taking Sam out of school so that I could apologize some more. But I knew just enough to keep my mitts off him. Now, at seven years old, he is separating from me like mad and has made it clear that I need to give him a little bit more room. I’m not even allowed to tell him I love him these days. He is quite firm on this. “You tell me you love me all the time,” he explained ‘recently, “and I don’t want you to anymore.”
“At all?” I said.
“I just want you to tell me that you like me.”
I said I would really try. That night, when I was tucking him in, I said, “Good night, honey. I really like you a lot.”
There was silence in the dark. Then he said, “I like you, too, Mom.”
So I didn’t take him out of school. I went for several walks, and I thought about ashes. I was sad that I am an awful person, that am the world’s meanest mother. I got sadder. And I got to thinking about the ashes of the dead.
Twice I have held the ashes of people I adored — my dad’s, my friend Pammy’s, Nearly twenty years ago I poured my father’s into the water near Angel Island, late at night, but I was twenty-five years old and
very drunk at the time and so my grief was anesthetized. When I opened the box of his ashes, I thought they would be nice and soft and, well, ashy, like the ones with which we anoint our foreheads on Ash Wednesday. But human ashes are the grittiest of elements, like not very good landscaping pebbles. As if they’re made of bones or something.
I tossed:a handful of Pammy’s into the water way out past the Golden Gate Bridge during the day, with her husband and family, when I had been sober several years. And this time I was able to see, because it was daytime and I was sober, the deeply contradictory nature of ashes — that they are both so heavy and so light. They’re impossible to let go of entirely. They stick to things, to your fingers, your sweater. I
licked my friend’s ashes off my hand, to taste them, to taste her, to taste what was left after all that was clean and alive had been consumed, burned away. They tasted metallic, and they blew every which way. We tried to strew them off the side of the boat romantically, with seals barking from the rocks onshore, under a true-blue sky, but they would not cooperate. They rarely will. It’s frustrating if you are hoping to have a happy ending, or at least a little closure, a movie moment when you toss them into the air and they flutter and disperse. They don’t. They cling, they haunt. They get in your hair, in your eyes, in your clothes.
By the time I reached into the box of Pammy’s ashes, I had had Sam, so I was able to tolerate a bit more mystery and lack of order. That’s one of the gifts kids give you, because after you have a child, things come out much less orderly and rational than they did before. It’s so utterly bizarre, to stare into the face of one of these perfect beings and understand that you (or someone a lot like you) grew them after a sweaty little bout of sex. And then, weighing in at the approximate poundage of a medium honeydew melon, they proceed to wedge open your heart. (Also, they help you see that you are as mad as a hatter, capable of violence just because Alvin and the Chipmunks are singing when you are trying to have a nice spiritual moment thinking about ashes.) By the time I held Pammy’s ashes in my hand, I almost liked that they grounded me in all the sadness and mysteriousness; I could find comfort in that. There’s a kind of sweetness and attention that you can finally pay to the tiniest grains of life after you’ve run your hands through the ashes of; someone you loved. Pammy’s ashes clung to us. And so I licked them off my fingers. She was ‘the most robust and luscious person I have ever known.
Sam went home after school with a friend, so I saw him for only a few minutes later, before he went off to dinner with his Big Brother Brian, as he does every Wednesday. I went to my church. The best part of the service was that we sang old hymns a cappella. There were only seven besides me, mostly women, some black, some white, mostly well over fifty, scarves in their hair, lipstick, faces like pansies and cats. One of the older women was in a bad mood. I
found this very scary, as if I were a flight attendant with one distressed passenger who wouldn’t let me help. I tried to noodge her into a better mood with flattery and a barrage of questions about her job, garden, and dog, but she was having none of it.
This was discouraging at first, until I remembered another woman at our church, very old, from the South, black, who dressed in ersatz Coco Chanel outfits, polyester sweater sets, Dacron pillbox hats. They must have come from Mervyn’s and Montgomery Ward, because she didn’t have any money. She was always cheerful — until she turned eighty and started going blind. She had a great deal of religious faith, and everyone assumed that she would adjust and find meaning in her loss — meaning and then acceptance and then joy — and we all wanted this because, let’s face it, it’s so inspiring and such a relief when people find a way to bear the unbearable, when you can organize things so that a small miracle appears to have taken place and that love has once again turned out to be bigger than fear and death and blindness. But this woman would have none of it. She went into a deep depression and eventually left the church. The elders took communion to her in the afternoon on the first Sunday of the month — homemade bread and grape juice for the sacrament, and some bread to toast later but she wouldn’t be part of our community anymore. It must have been too annoying to have everyone trying to manipulate her into being a better sport than she was capable of being. I always thought that was heroic of her: it speaks of such integrity to refuse to pretend that you’re doing well just to help other people deal with the fact that sometimes we face an impossible loss.
Still, on Ash Wednesday I sang, of faith and love, of repentance. We ripped cloth rags in half to symbolize our repentance, our willingness to tear up the old pattern and await the new; we dipped our own fingers in ash and daubed it on our foreheads. I. prayed for the stamina to bear mystery and stillness. I prayed for Sam to be able to trust me and for me to be able to trust me again, too.
When I got home, Sam was already asleep. Brian had put him to bed. I wanted to wake him up and tell him that it was okay that he wouldn’t be who I tried to get him to be, that it was okay that he didn’t cooperate with me all the time — that ashes don’t, old people don’t, so why should little boys? But I let him alone. He was in my bed when I woke up the next morning, over to the left, flat and still as a shaft of light. I watched him sleep. His mouth was open. Just the last few weeks, he had grown two huge front teeth, big and white as Chiclets. He was snoring loudly for such a small boy.
I thought again about that photo of the Mennonites. In the faces of those fifteen children, reflected on their dining room table, you could see the fragile ferocity of their bond: it looked like a big wind could come and blow away this field of people on the shiny polished table. And the light shining around them where they stood was so evanescent you felt that if the reflections were to go, the children would be gone, too.
More than anything else on earth, I do not want Sam ever to blow away, but you know what? He will. His ashes will stick to the fingers of someone who loves him. Maybe his ashes will blow that person into a place where things do not come out right, where things cannot be boxed up or spackled back together, but where somehow that person can see, with whatever joy can be mustered, the four or five new leaves on the formerly barren tree.
“Mom?” he called out suddenly in ‘his sleep.
“Yes,” I whispered, “here I am,” and he slung his arm toward the sound of my voice, out across my shoulders.


Tomorrow I hope the weather will let me ride my bike for a little exercise, but if not, I can read the rest of Anne’s stories.

Carpe Diem!

Spring 2024 (a haiku)

I have always been a fan of haiku. Seventeen syllables to evoke an emotional connection to the earth and our surroundings. I am also a fan of sonnet but the rhythm and rhyming sequence often escapes me. Haiku is free verse, an emotion, a summary. It is a painting in words to me. I like to experiment with it.

forsythia in bloom

new life persistent
provides much beauty on gray
wintertime background

Regardless of where we are or what we are doing or what trouble may concern us, Spring flowers appear in the landscape. Take notice of them. A new year of growth is here. Breathe in, breathe out, enjoy your surroundings. This year this lone forsythia left to grow wild in the woods behind our condo shows its beauty once again.

Carpe the landscape Diem!

Florida Again

After a few months, I find myself in Florida again without Cheryl. In June of 2023 when Cheryl and I came to the Florida panhandle with Anna and her family it was fun and it was exhausting. This time Cheryl is not with me. This time Joyce is often driving and I am able to watch the scenery. This time is different.

Last summer may have been our last trip together. This trip is not the first one without her that I was not going to work but this trip feels different. I cannot put my finger on what is different. Is it because Cheryl is not with me and it is the nation’s designated vacation spot? Surely that’s not it. I am visiting family with family. Is it because I am not worried or concerned about her care? As I was visiting with my sister in the previous October? I am still analyzing those thoughts.

Judy’s pool view

This trip started as an invitation to participate in an informational weekend about  the activities supported by the Southern Poverty Law Center  founded years ago by Julian Bond et al.

The weekend’s events culminated in jubilee commemoration of Bloody Sunday 59 years ago on the march from Selma to Montgomery Alabama.

Edmund Pettus Bridge

My impression of Selma is that it is remarkably poor. This impression is supported by empty and boarded up storefronts and the slow or non-existent recovery from the tornado that passed through a couple years ago. Whatever the vision is in the leadership of the great State of Alabama may be for the future it seems to have left the the small village of Selma behind. It is a pretty area. The few pictures I took of the river area show this fact and Selma has a grand boulevard in the center of it. There is a Walmart Super Center less than two miles from the town center. Big box stores tend to kill off the core of little towns. It seems to be happening here.

The bridge crossing happened on Sunday and after we walked across the bridge and completed wading through the crowd on the other side taking selfies and deciding what to do next and generally recrossing the bridge on the sidewalks back to the carnival atmosphere a block off the side of the boulevard, we found our bus back to Montgomery. That evening we went to a nice local restaurant for dinner. Fifty-nine years ago many of those bridge crossing folks spent the night in jail or the hospital somewhere. It is quite a contrast, then and now, but the poverty is still there.

The next day we were off to Port St. Joe, Florida to visit with our nephew Mark and his wife Leslie. Their little vacation home in Port St. Joe is set up perfectly no TV, no WIFI,  just conversation. Port St. Joe is a sleepy little town with the distinctive title of original capital city of the State of Florida. Leslie grew up there. Mark and his family took us to a raw bar. I later found out this is another name for a sea food restaurant.

As I conversed with Mark it struck me that he is very much like his father, my brother. In addition to resembling his father physically, his mannerisms, his focus, his jesters, I felt like I was talking to a younger version of my brother. I have not seen Mark since Mom’s funeral and we did not talk at length at the funeral.

Cheryl came flooding back into my mind. I looked around and in my head she told me that if she could have been there she would have sat near Leslie and the kids to talk and catch up. Family and conversation is very important to her. Sitting with Mark, my sister Joyce and his family, I realized how much I was missing Cheryl. She would have enjoyed this trip very much. And the additional aspect of lived history would have had her telling about this trip over many dinner conversations into the future.

The next day we continued on to visit with Mark’s mother, my sister-in-law, Judy. My brother left this Earth in May of 2020. Sadly, because of the COVID travel restrictions, Cheryl’s inability to travel easily and other factors, we were unable to attend services for my brother Bill. Judy showed Joyce and me a wonderful memory book put together by the funeral services company as well as the program for Bill’s celebration of life. I picked up the book and looking through it had to catch myself as I wanted to turn and show it to Cheryl. (I was missing Cheryl again.)

This was perfect; family, history, hiking, a beach nearby, Judy’s beautiful house at the end.

When I got home in the early evening my son Scott picked me up at the airport. As we rode along my only thought was to drive over and visit Cheryl. She was in bed already so I kissed her goodnight and returned home to eat something and consider various aspects of the trip, my relationship to my own family and enjoy sleeping in my own bed.

Carpe the road trip Diem.

Stream of Conscious – Touch

Two days ago when I sat with Cheryl in the common area of where she is staying, I noted in my journal that she seems to need touch. I think I do too. On these occasions when she does not seem to be in the present, somewhere in her head she needs to feel, manipulate and touch.

It seems to me that these days Cheryl has to have more touch. That is just my thought in my observations when I see her. I am just sitting with her and seeing how she’s doing. But that is what I see and think. I think also that I need the same kind of touch. I sit there and turn the chair so that I can we can be side by side and I can hold her hand. Doing that action is important to me. I observed that about myself today. Today for awhile, about an hour or so, we sat holding both hands. She was holding my left hand with her left hand and I was holding her her right hand with my right hand and we sat that way for a long time.

I am writing this using an app that I downloaded that transcribes spoken words into printed words. I will see how that goes. It looks like I can write in a crude fashion. I can just send this text to myself via email and then paste it into a document and then spend some time trying to figure out exactly what I am trying to say.

It is hard to describe. What I see and and I mean as I think about what I am internalizing when I’m touching her or feeling as I am feeling her knee. Cheryl has gotten very skeletal over the past few weeks.

Even as she looked around at things in the room and told me some story that I could barely hear because her voice is so soft. There is a lot of ambient noise; television in the main room, television in one or two side rooms, Bluetooth music and the occasional phone call, she would simply just sit holding my hands. She was okay to sit that way. Every now and then I had to move my hand and scratch my nose or whatever and every now and then she would let go and you know touch something else or scratch her nose or whatever. It is fascinating to me as this goes on how much it is important for the both of us to touch each other.

The whole thing about touch is sort of interesting to me. I think we have always had that throughout our married life but as I as we get further in this Parkinson’s journey, the sense of touch is is important to me and I think I really do think it’s important to Cheryl. We are communicating our presence to each other through touch.

She does not resist it. She does resist things that that bother or sometimes hurt her. Her sense of pain can be strong. I am sure she feels pain because every now and then she says stop doing that, it hurts me or something like that, or maybe she’s having a cramp in her leg or whatever the deal is, but simple touch is very different. She will also grimace if something causes pain.

I have been exploring the nuances of touch in my head and I don’t really know how to describe differences of instance. It is interesting to me that it is important to her and me at the same time.

Now if she is sleeping or she’s very tired or trying to doze or she does not feel quite right or she is hungry or she needs to go to the toilet or needs to move, then touching gets in the way. When she was still home here with me, it seemed like we would fight (not the right word) when I was helping her with one of these activities. She would be dissatisfied with any any help that I would give her.

I sometimes just reached over to touch her leg to see whether or not there is anything left there. And I realize that I am holding on to her thigh bone, for example without hardly any any any meat. She used to be a much bigger woman. She used to be a lot fluffier. Just a year ago, I would have had a very hard time picking her up and holding her up and helping her into and out of bed. These days, in some book somewhere, I read somebody describe somebody as a bag of bones, that is a pretty good description of Cheryl. She still has a lot of muscle strength when she decides to squeeze and grab something, but she really doesn’t have a lot of mass. There is little subcutaneous fat left on her body and that too makes me want to touch her just simply so that I know in my own mind that she’s still there and she’s still alive. Without touching her she still in my heart. I think about her all the time but somehow there is a physicality that happens when when I actually touch her.

She is very skinny. Touching helps me to understand.

Carpe Diem.

Ennui (un-WEE)

Ennui is a feeling of listlessness and dissatisfaction arising from a lack of occupation or excitement according to the Oxford entry that pops up when one pokes this word into Google. I have several dictionaries in print form. They are left over from my high school and college days. My copy of the American Heritage Dictionary (copyright 1971) defines it as a feeling of listlessness and dissatisfaction arising from a lack of interest (boredom). It is a small word that conveys a big emotion.

This word was part of the Quordle this morning. I did not get it. It is not part of my regular vocabulary. It is adopted into the English language from the French. The French have a lot of good words that are adopted into English. Altruism or the root of that word is another. Entrepreneur is another.

Words are a fascination for me. I think this word, ennui, is an excellent description of how and what I feel emotionally when I get home from visiting Cheryl at Bridgeway Pointe.

Moving forward from this point I will strive to become more engaged in life around me. Look for things to stimulate my interest. Succumb to various fascinations that I have about the world. Immerse myself in new vistas of my environment.

These last ideas are antonyms to ennui. Introspection is useful. Self-absorption is not. Perhaps I have been too self-absorbed to understand and accept emotional help from those around me.

I will meditate about that today. My son has invited me for dinner.

Carpe Diem.

Discoveries of Her View

Cheryl is safe in her room a Bridgeway Pointe and I am cleaning up and sorting through papers in her office. She has collected vast piles of birthday cards, Christmas cards, notes, emails and other writings. She has put these together in random collections of paper that, at the time in her thinking, belonged together. (Punding is the term used by the Swiss.) This collection of items is her version of it.

One of the thoughts that comes through to me is a background fear of losing her memory and remembrances of her life. Some of her notes to herself are frantic in her attempt to categorize and save memories.

In the following email she is very succinct in her experience. I uncovered it while sorting. At the time she was taking amantadine. It was prescribed to help deal with the dyskinesias (rapid uncontrolled movements). After a failed trip with lifelong friends Cheryl wrote this letter to explain. It was, I think, the first time she felt the need to explain things to others. Here is her email to Cathy:


Wed, Sep 5, 2018, 10:04 PM to Catherine

Cathy and Paul,

I hope you’re having a good time on Mackinac Island. The tour in which Paul and I participated was very informative and fun. We learned a lot about the island, the people who live there all year round, the horses and how they are cared for, the history of the island, what happens during the winter when the horses are moved to Michigan’s Upper Peninsula, and much more. The Harbor View Inn is a very comfortable hotel, the food is always good and there is plenty of it. This is why we were so excited about sharing this trip with you.

I want to explain to you what happened to me last weekend. Every 3 months, I have an appointment with either my neurologist or with his nurse practitioner. Last Tuesday, August 28, my appointment was with the nurse practitioner. During the past 10 months or so I have been taking a new medication that was prescribed for me by the nurse and doctor. It is a drug that is supposed to keep me from swaying side-to-side. By summer I was taking this drug 3 times a day in addition to my prescriptions of Sinemet (I’ve been taking Sinemet for the past 8 years ever since I was diagnosed with Parkinson’s Disease).

About a month ago, I began to experience hallucinations. They weren’t too bothersome. They usually manifested themselves as vivid, sometimes bad dreams. By the time I met with the nurse practitioner (Maureen) last week, these hallucinations were becoming a little more than dreams. I asked if I should begin to wean myself from this new drug. Maureen agreed that I should begin to do that, and we worked out a schedule … and I began to work on eliminating that drug the next day. For a week, I was to stop taking the 7am dose of the drug… I didn’t notice any bad reactions… I still had the hallucinations but they hadn’t become any worse. They were just an annoyance.

On Saturday, Paul and I had a nice drive from home to Lansing, Michigan. The weather was nice. We stopped for lunch in a nice restaurant in Van Wert, Ohio. Then we drove on to Lansing, checking into our hotel around 5pm. We found a nice Bravo restaurant near the hotel, and we had a delicious Italian dinner. We watched TV at the hotel for a while. As I was organizing my things and getting ready for bed, I began seeing things that weren’t really there. There were bed pillows piled on the bed the way they usually are… but I saw what looked like a little child peeking out from under the pillows. I knew this was an illusion, but it persisted. Paul and I talked about it, and Paul said that we should just go to bed and everything would be ok. Based on what had been happening in previous weeks, I thought he was probably right. So we went to bed. Then what I called the “hallucinations from hell” began. The little child kept appearing in and around the bed with the pillows continuing to move. What appeared to be a man wearing a long piece of fabric (I would not call it a cape, but more like a blanket) was “flying” around the ceiling. We tried turning out the lights… nothing changed… things were still moving around. Paul did not see any of this, but he believed me. Finally his solution was for me to close my eyes, since this was all apparently in my head. I tried that for a while, then became frustrated with the whole situation. I got up and walked out of the room in my pajamas. As soon as I heard the door to the room close behind me, I realized that I did not have the room key. Fortunately, Paul heard me and went right to the door and let me back in. But what I had just done frightened both of us. After that I closed my eyes and tried to sleep, repeatedly telling myself that none of this was real, but I wasn’t very convincing. Somehow we made it through that night, but with very little sleep.

When Sunday morning finally arrived, we found a nice restaurant close by and had some breakfast. We talked about the trip and what had happened Saturday night, and we decided that we could not stay and go on the tour. We had never experienced anything like that before, but decided that we did not want to expose anyone else to our troubles. We felt it would be better for us to leave… that would ensure that you would have a good time.

We both think it was a good decision because I continued to have these horrible hallucinations for a couple more nights. Since it was a holiday weekend, I had a difficult time getting in touch with my neurologist’s office. I sent a couple of emails, asking for assistance. Of course, it was not an emergency. I was certain that it was my body’s reaction to withdrawing the medication. I had not thought I would have such a violent reaction. On the other hand, I did not want to increase the dosage again – that would just cause me more problems. So we toughed it out. Each day and night things went a little better. At home at night, the ceiling fan in our bedroom would appear to be falling toward me and the windows would appear to be moving toward our bed… mind you, they never came all the way to the bed, but it was still unnerving. There were people and children moving around in our bedroom and in the living room (this went on day and night). In our master bathroom, which is of course right off the bedroom, a couple of the hand towels were turned into a puppy… I was very surprised when I saw that!

Early yesterday the nurse practitioner contacted me, answering my email messages to her. I had asked if it would be a good idea for me to speed up my withdrawal from this drug, or if it would only cause me more problems. She answered that she did not think my reaction could be much worse. So I should stop taking it all together, and contact her with frequent updates about my condition.

This seems to be working. I’m not out of the woods yet, but I’m definitely feeling better. And the hallucinations are almost gone (I’m almost afraid to say that). But I think they are no longer a problem.

Again, I’m very sorry that Paul and I could not go on the tour with you, but I think now you understand why. We will go on another trip together again sometime soon.. maybe in the spring or summer.

I thank you for your prayers.

Take care.

Love,

Cheryl


This is the best and clearest description she has ever given me of her hallucinatory apparitions. She still sees people, things, children and bugs but less so and the visions are not terrifying to her as they were on this trip.

To me, it is a gift to understand what she has been going through in her mind. This is a love story that is not finished. I think that many of her visions are of people she knows or has known. Much like the theme of the TV show “Ghosts” she may be able to see beyond this world. (Why not?)

Carpe Diem.

Mundane

It is hard to describe, for me anyway, how uninterested I am in doing the boring everyday tasks to keep our household running. Typically I write about our life and Cheryl’s symptomatic display of different nuances. A day or so ago I was a little down in the morning and I started these notes while I was lining up in my mind what I needed to accomplish for the day. I did not want to do any of it but it was either I do it or it does not happen.

This morning while I was thinking about it some more and helping Cheryl to get dressed, I got a Messenger-message from Cheryl Hughes asking how was I doing? (I sort of poured my heart out to her a week or so back when I was worried about some new behaviors Cheryl was presenting. Today she checked up on me.

I responded, — Not too bad. Cheryl slept mostly overnight. She got up once and told a long story about a play she was in as a child called “My Fair Lady’. I know the play. I had not heard the story about her and a couple of her siblings being in it. I helped her to the toilet and we wobbled back to bed. Sometimes she has funny and vibrant dreams that makes her talk and occasionally she wakes. And sometimes I become part of her dream(ing). I am looking forward to the day that her room is ready at the memory care section of Bridgeway Pointe near me. Between my generous sister and myself I think we have the financial resources figured out. My Roman Catholic church upbringing hovers around in the background and tells me I should feel guilty about that. It has taken me a long time and a lot of blog words to convince myself that it is best for both of us. It will happen in the next couple of weeks. (It’s saddening that the previous occupant is now in heaven.) This week we saw the nurse-practitioner who works with her MDS neurologist. Cheryl’s weight is down to 110#. She has lost 24# since the NP weighed her in March. She sleeps more. Today I crushed her morning meds into applesauce because she told me she does not like the pudding that I have been using. I have been crushing her pills for a couple of weeks now. Today I am fine and you are helping me to gather my thoughts about the mundane day to day tasks associated with living. Why do those seem overwhelming on some days and on other days not?

It seems as though time just drags. And all of these activities: laundry, cleaning, cooking, filing, checking, shopping for supplies and other little day to day things are just there to give me another thing to do while caring for Cheryl.

These are mundane but necessary. These are not my whole existence. It sucks to believe that this is the reason I am here. Let me whine a little. I write this for me.

Filing

I have never been a good filer. Librarians are good at this and finding things back. I am not. Frankly it is a scary task that I ignore for too long and then it is overwhelming. Categories – that has to be decided first and it has to be more specific than “stuff” or “stuff to-be-saved”. Later on more anxiety creeps in as one must decide “how long to keep the stuff?” Why is there no manual?

It is just history anyway. Only the IRS can ding you into giving up your records of stuff.

Many folks have a hobby of scrap booking. I have several note books of scraps of my journaling along through life. Does that count? I have not given them the pitch nor have I organized them in any fashion. They merely sit upon my desk in full view of the monitor.

In a previous life our purchasing department had a wonderful clerk who filed all invoices by date of purchase order and then alphabetically by vendor. Once a quarter she would empty the drawers and scan them electronically into files saved in the same order in a database. It made my life easier as an engineer. I could easily find the PO # and from that I could find the vendor and warranty information. A much better system than my “root through the drawer” technique I have now. Life needs a database.

Checking

I have written about this before and I consider this to be a great accomplishment. Early on I decided that it was unnecessary to maintain Cheryl’s shoe-box method. My files are all electronic. The absolute first thing I did was to find a piece of software to maintain my checkbook separate from the bank’s system so that I could check them and my spending.

Categories rose its ugly head early as I had to decide what I wanted to call various expenses and income streams. (Just in case the IRS decided to ding me.) I got through it. Why am I unable to do the same with a drawer full of paper. Maybe because the system I learned from Mom was put everything into an envelope called “Paid Bills” date it and put it in the drawer? There might also be coupons from J C Penny in there too.

Cooking

I actually like to cook. Generally I like my cooking. I also like to experiment with things. Sometimes the disasters are not edible. When I am cooking for Cheryl and me I do not experiment. She eats less and less these days. I have no desire to have her feel bad about not eating what I have prepared. It is harder and harder to figure out what she might eat at any one time. Breakfast was usually safe. That is no longer true.

Laundry

I do laundry almost every day. It is usually a mixed load of towels, underwear, shirts and pants. Cheryl is a pack rat when It comes to old used Kleenex tissues. She blows her nose and then puts it away in her pocket. I have become pretty adept at discovering where and in which pocket she is hiding the Kleenex. She only has two pair of pajama bottoms that have pockets. I am onto those odd pants and check them first before they hit the basket.

Today a new crisis has arisen. Who would think that a corn muffin would retain its shape through the entire hour and seventeen minutes of the washing machine cycle. I am pretty sure it is no longer edible and some of it did fall apart so now it is all over the inside of the washer. Sticky. It was folded up into the dish towel I used as a place mat the other day. (UPDATE – if you let the washer air out for a couple hours the sticky loses its tactile strength and the muffin parts can be sucked up with a dust buster or other suitable small vacuum.)

Every day is a learning experience.

I outsource the cleaning duties to my niece.

I actually like shopping for supplies either online or in the store. If I have to take Cheryl with me I cannot spend as much time shopping but it is still an enjoyable experience. And she gets out and feels like she is helping. I am disappointed that Boxed Up has gone out of business. Amazon is a big help as is Kroger’s.

Carpe Diem.

A Day that will Live in Infamy

Looking back from the afternoon towards the morning I have to laugh a little.

Cheryl’s doctor is still adjusting her meds. Trying to sort out sleep issues, depression issues, hallucination issues, movement issues and other Parkinson dilemmas takes time. In the meantime sleep is illusive. Last night I got the message – quit taking the quetiapine for sleep. So I did not give her the quetiapine.

This morning I got the message, the doctor has communicated with the neuropharmacist and reviewed all the other stuff she is taking. Start giving her the quetiapine 75 mg for 5 days and then 100 mg from then on. The nurse practitioner will check back in two weeks to see how it all turned out.

That is counter intuitive. 75 mg is twice the original amount of quetiapine that she was taking. After I finished reading all that I went to check on Cheryl. She was awake as she had slept poorly but quiet enough that I slept like a stone or at least a stone with a two-teaspoon bladder capacity. Overnight I sensed that Cheryl was awake but she was not talking gibberish which happens sometimes when she dreams out loud. I fell asleep easily after getting up a couple times. (God, I hate old age.)

We decided on waffles and fruit for breakfast. She ate her pears and part of a waffle and disintegrated into a coughing nausea fit which caused her to quit eating anything else for awhile. As that died down a bit, my cousin-in-law called with a long explanation about why she was unable to participate in Pizza Tuesday tonight.

Linda told me a story about her upstairs neighbor’s incompetency, water leakage and associated repairs. I started to think my life was not so bad at least my building wasn’t falling down around me.

Cheryl decided that she wanted to lay back down for awhile. I helped her back to the bed room and the bed. I then returned to the kitchen to finish assembling a new pot of coffee and wait for the next activity. I turned on the kitchen tap and a tiny trickle came out.

When I had the kitchen remodeled a few years ago I opted for the super faucet that I only need to touch somewhere to make it come on. It was a $300 option but it was extremely handy over the years. It is a battery powered system and the problem that presented itself told me the batteries needed to be replaced. Alas! I found new batteries and did that. Still no water! I called the plumber. Micky listened and told me that they have had a couple failures but she was sure mine was still under warranty and would check to see how long to get parts and call me back.

I took my coffee pot to the sink in the utility room for water. The sink in the utility room was running very slowly. WTF? Did we have a water main break? I called the Greater Cincinnati Water Works generic hold number and the robot answer-er asked if I wanted to discuss my bill. No! I replied. and eventually was connected to queue manned by a single human. This is similar to going to the post office to buy stamps at the wrong time of day. While on hold i decided to go look for my Amazon package that the driver had beeped my door buzzer about earlier. The package was leaning on my front door which led me to look into the front lobby of our condo building. The front door was propped open by a plumber who was working on the new neighbor’s condo up stairs. I tapped on her door and grumped long and loud about turning off the water to the building without warning anyone. — Turn about is fair play; she grumped loud and long about someone stealing her ladder when she was moving in which did not happen. The painters thought it was theirs and realized their mistake and put it back in the incorrect spot.

Someone had mismarked the main water supply which comes into the building as the cutoff for the second floor condo not realizing what they were doing. Our new neighbor’s water shutoff valve was hiding behind the water heater. The plumber figured out where it was after we complained about the water being off. He got bad information from a resident that was not here. Who knew?

I later apologized to my neighbor about raising much ado about nothing.

In the meantime Cheryl’s head is off in lalaland.

Sleep would be a good thing for her.

It is Pizza Tuesday.

Carpe Diem.

I Expect Too Much

I do.

I expect Cheryl to do things that she is incapable of and respond with anger when she cannot. My anger is better described as frustration. As I leave her thinking she is headed in the right direction, when I check on her later, I find that she has wandered off in some new direction. Instead of washing her face, she is cleaning the sink.

I expect others or hope that others will see our dilemma and voluntarily help in some way. Those people who do are very few in number. They are a joy to be around.

I do not expect anything from strangers but they open doors or hold the door or jump up to open the door. It is a small thing but useful.

Friends and family are all helpful in their own way. They all have lives. They all have other interests. It is self centered of me to expect them to think about us.

As we travel this road of Parkinson and related dementia changing expectations is necessary. If you do not make adjustments all that can be found is perpetual disappointment.

Perpetual disappointment leads to cynicism. Conversation becomes sarcastic. The sarcasm is wasted on dementia patients. They will only detect the underlying anger.

Cheryl uses her left side successfully only when she concentrates. Perhaps specific marching encouragement will help – left foot, right foot, left foot, and on.

If I change my expectation for her walking, perhaps I can help her improve.

If I change my expectations of family and friends perhaps I can find more happiness and less disappointment.

Perhaps I need to change my expectations.

Carpe Diem.

Why

Why do I feel like Cheryl has to try out restaurant restrooms like a small child who has been recently potty trained? Is it my imagination or the real feeling that she is has. She seems to ignore her bladder and her bowels until we get to somewhere that she may get trapped. She has no ability to think or plan ahead for toilet contingencies. And then at other times it is all she can think about.


Why?

Yesterday, the discussion was about some lesson plans and software development for the early computer program that she pioneered in the grade school our kids attended when they were small. We had come to a nearby park for a walk after dinner. She spoke of this as though it was on going. She had to get that organized.

On the way home from dinner in one of her favorite restaurants, there was a near disaster with urinary incontinence and no protection for it. This part of our life saddens me. She will not ask for help. She knows that she needs help but is either unable or unwilling or simply embarrassed to ask for it. When I offer unsolicited help she will become angry and anxious. I understand this completely and at the same time I do not understand it. An urgency in her head is organizing old birthday, Christmas and other greeting cards in her office. Taking a break from that for a bathroom break has no priority. Her “full” signal does not work correctly. By the time her body signals full to her brain, she is stuck because she forgot how difficult it is to get out of the chair. The bouncy motion she uses is not helpful. She will not ask for help.

Why

Tonight when we got to the restaurant she was looking around to see where a couple of our kids were. She thought that they were coming even though there was no mention of them coming or any communication of that sort. An idea jumped into her head from left field. In the afternoon lots and lots of left field thoughts appear. Why is this part of the plan?

Why?

Why in the afternoon? Or is it merely that I notice in the afternoon and it grates on me more after having dealt with her worsening dementia all day? Sometimes her memory is so short it is not unusual for her to forget the previous sentence. Where are we going? – can create great frustration in a caregiver (me) when repeated at two minute intervals throughout the day.


This essay started with me sitting in one of our favorite restaurants wondering if she would be able to get back through the ladies room door. As I now read what I wrote that day and think about where we are with this disease — we is an important part of those thoughts — my meditation drifts off into why do I think I know better? For that matter why do folks generally think that they have the solution to this dilemma or that conundrum and freely volunteer the solution? There is no answer to that last comment. I can, however, parse and control and limit my own contribution to living our best life with Parkinson.

Tomorrow we see a new doctor. Her calling and interest is palliative care with a chronic degenerative neurological disease. Cheryl’s movement disorder specialist suggested that she might be able to help. He also wrote scripts for PT, OT and speech therapy. She has been therapied by these people before. She lied to the PT folks last time when they asked if she tried the exercises that they gave her to do. I do not think her moderately cognitive impaired brain thought of it as lying. She thought about doing the exercises, that was enough.

For my part, I bought a caregiver call button from Amazon. My thought was that Cheryl could press her button if she really felt that I could help her – get up, find clothing, get socks, and a myriad of other small helps with which she is struggling (her mind says no she is not) but does not want to accept that she needs help with (see I did it again.) Her speech is so soft she cannot say loudly, “I need help” or I am not listening. With this doorbell she could press it when she needs help rather than me hovering around the bathroom door asking, “Are you doing okay?” She does have to keep the button with her. That is the next great solution to find.

Admittedly it seemed like such an attractive solution. Ugh!