Black Friday

This is a term associated with the Friday after Thanksgiving Day. (2022) We had been at Anna’s house. Anna hosted. Almost everyone was there. Cheryl sat at the end of the table near Anna. Anna read a wonderful prayer. I sat at the other end of the table near Scott and Gavin. A great meal surrounded by family was enjoyed by everyone.

Today – black Friday – Cheryl was a little down this morning after breakfast. She talked about not understanding what was going on about her yesterday.

She did not remember that she had forgotten being there last night as we went to bed and I talked about the meal and conversation at Anna’s house. — Last night as she was crawling into bed she asked about going to Anna’s house for Thanksgiving dinner. Without thinking I responded with we were there all afternoon. Do you not remember having dinner at Anna’s? Luke had really long hair. She became upset. She could not find that memory and it seemed that for a moment it terrified her. (I knew immediately I had made a terrible mistake of assuming she knew.)

She talked about “losing her mind” this morning. She talked about her granddaughters who were sitting all around her not understanding the surroundings. We had another moment were we sat for a minute to recognize the changes in her memory and cognition. (I am losing her more and more and she recognizes that and it makes us both sad.)

Thank you Lord for the moments we both still have. Even if we cannot remember.

Carpe Diem.

Thanks

Surrounded by Friends full of grace

In the Autumn of 2021, I found out through no fault of my own that we are surrounded by good friends willing to step up and help out with Cheryl’s care. I wrote this note of thank-you sometime ago but on this Thanksgiving Day of 2022 I am revisiting these thoughts of gratitude for all that you have done for Cheryl and me.

I appreciate everyone’s help whether it is a small thing or a big thing. Sometimes it is a phone call. Sometimes it is merely joining us for dinner after church or “Pizza Tuesday”. Sometimes it is taking the roll of care partner for a couple hours. Sometimes it is staying with mom while dad goes somewhere for an hour or a week. Sometimes it is merely holding the door for Grandma. I love you all. Thanks so much for helping.

Cindy

Cheryl’s cousin’s wife Cindy began coming over to sit with Cheryl or take her to one of her exercise classes once a week for a couple hours. I am free to do whatever. (Thanks, Cindy.) These days in the warm summer Ohio air, I often go ride my bike somewhere. Cindy surprised me in Autumn a year ago by asking me what I did for exercise after a discussion about Cheryl’s exercise classes. One of Cheryl’s instructors was a friend of Cindy’s. Cindy spontaneously offered to come and be with Cheryl while I did something else other than care give. It took me several weeks to figure out what to do with my new found freedom and now I look forward to it.

Cindy often comes over on Thursday which works best for her and her work schedule. This week of course Thursday is Thanksgiving day so she said she can come tomorrow. She is a gift to me that I find hard to put into words.

Jane

Our next door neighbor, Jane, comes on Mondays typically to sit with Cheryl for a bit while I go ride my bike around somewhere or merely grocery shop. Cheryl sometimes walks across the hallway to visit with Jane. She is a good friend and close. Often Jane goes with us on “anything goes pizza Tuesday”. She reacts to Cheryl’s discussion much like Nancy does. Over the years Jane has had issues with her health and Cheryl’s first thought is to see how Jane is doing. Jane has pointed out things to me that she notices about Cheryl and has suggested solutions for those without any judgement. (Thanks, Jane.)

Jane is celebrating today with her family in north central Ohio. Safe travels, Jane. You are a blessing to me.

Linda

My cousin’s widow, Linda sits with Cheryl while I go do something else. Last May I signed myself up for a caregiver’s class to find out about other services that were available. Linda came over fairly early in the morning so that I could attend this class. I found the class itself very useful. It was primarily oriented towards care partner health and well-being. (Thanks, Linda.)

She has encountered some tragedy in her life. Her sister Diana recently pasted from this life but today she is spending her Thanksgiving with her daughter, warm, in California. Safe travels, Linda.

Mary Jo

A few months back Mary Jo sent an email to me to remind Cheryl (and me) of a commitment she had made during a chance meeting at our parish first Lenten fish fry since the Covid pandemonium closed the world. Mary Jo indicated that she would like to come and visit with Cheryl occasionally. She comes on the third Wednesday of the month to visit. (See Jane’s organization below.)

Mary Jo’s visit seems simple and innocuous but social interaction no matter how small is helpful to Cheryl. Each time Mary Jo visits she is a new acquaintance to Cheryl. Cheryl shows her pictures to Mary Jo and tells her about our children and grandchildren. Thanks, Mary Jo, for sitting and listening to Cheryl’s remembrances.

Nancy

Last evening we had dinner with Cheryl’s sister Nancy. We have been doing this more and more. It is helpful to me in a couple ways that Nancy might not think about. Nancy, firstly, is not dealing with any dementia. Her conversation goes in a straight line. That fact by itself often provides relief to me. Over the course of my working career I traveled to other countries and many of these did not have English as their base language. It was always a great relief to hear American English from the people around you waiting for an airplane back to the states. Cheryl’s mingled conversation is much like trying to make sense of a foreign language with little preparation.

The second thing is that when Nancy talks to Cheryl she is accepting of whatever Cheryl might say. Cheryl tells her about the children in our house, their sister Janice and other thoughts as they occur. Nancy does not correct or suggest anything different. Sometimes she will ask for clarification if Cheryl has mixed up names or dates. Cheryl recognizes that she does mix things up but she does not have the stress of keeping the story straight when conversing with Nancy. That is stressful to her, saying the right thing; giving the right answer; not offending anyone. She learned those from her mother and they are deeply ingrained in her personality. When talking to Nancy she relaxes. Thanks, Nancy.

Nancy has a new person in her life, Gene. Cheryl and I a grateful that she has his companionship.

Family – Sons and Daughter

My son David and his wife Melissa have a wonderful patio and a big green backyard. Many times with little warning over the summer, I have asked to come visit for a bit with Cheryl. Cheryl likes to visit her children and see how they are doing. Sitting on their patio in the sun brightens her mood. It gets us out of our little condo and does not require a lot of preparation by me. It is a sort of little day trip for her and I can chat with my son who is a fellow engineer.

They have always responded with yes. (One time they were out of town on a spontaneous getaway weekend.) Thanks, David and Melissa. We are very grateful to you and Melissa for allowing us to intrude in your life.

My son Scott sits with his mom while I go to my stock-club meeting once a month. Thanks, Scott.

In 1984 several of us engineers decided to make ourselves rich by speculating in the stock market. We started meeting in March of that year. The markets have soared and ebbed. We languished through “black Friday”. We bought gold mining companies. We sold gold mining companies. We drank a lot of beer discussing and criticizing corporate management. We have won big (ABBV) and lost big (F). Good friends and lots of beer with dinner in the back room of the bar makes for a fun evening. Thanks again, Scott. We are grateful to you and Mavis for letting us intrude in your lives. I have also parked Cheryl at Scott and Mavis’s house near us so that I could ride my new ebike around our old neighborhood. Cheryl could see Zachary – the newest grandchild – run around while I was riding. Thanks, Zachary.

My daughter Anna visits with her mom and in the summertime when her high school is on break takes her mom to exercise class. Last year Anna stayed with her mom for a week while I went to visit my sister on the west coast and Joyce and I attended my nephew’s wedding. Jeff and Stephanie have a new baby girl. Thanks, Anna.

Anna also calls her Mom randomly just to see how Cheryl is doing. (Anna you cannot see how your mom’s face lights up when I tell her it is you on the phone.) These are really simple things that your mom and I appreciate. We are grateful to have you as our daughter and Eric as our son-in-law.

Anna is cooking Thanksgiving dinner this year. She sent out her list of what everyone else is bringing. My job is rolls or bread. I broke my forty-year-old dough hook yesterday starting these rolls. Today I kneaded dough by hand. I have not done that for awhile but I am thankful that I had the opportunity. Thanks Anna and Eric for hosting the great collection of family today. It will be crowded and fun.

Allison

Allison comes once every six weeks or so to trim and shape Cheryl’s hair. Before she started coming to our condo I took Cheryl to the Salon Named Desire every few weeks to have her hair cut. The salon is located on the second floor of an old building in the business district of the suburb of Pleasant Ridge.

Overtime it became harder and harder for Cheryl to negotiate the stairs. When Cheryl had foot surgery I asked her through the salon if she would be willing to come to our condo to cut Cheryl’s hair. She did and as I discussed it with her she said she had several clients that she visited at home.

Cheryl’s foot healed and we went back to me driving her to the salon but eventually it became an issue. We adapted and so did Allison. When she leaves I vacuum the large bathroom floor. Thanks, Allison.

Natalie

Natalie comes every other week to clean our little condo more thoroughly than I would. And this visit usually aligns with Allison’s hair visit. She is our niece and has developed her own little cleaning service. She is a godsend. She sees and cleans and dusts and vacuums. When she leaves everything is shinny and clean. The appliances have no splats and splashes and dribbles and fingerprints. We usually go out to a local diner/bar for dinner when she comes to preserve the clean for just a couple more hours.

Yesterday the furnace guy came to do his yearly tune-up. He remarked as he took out the filter to blow it out and clean it, “You guys keep this place awfully clean. There’s no dust on this.” Thanks, Natalie. I am pretty sure this is all you.

This week one of her kiddos is ill. Get well soon, Charlotte.

Jane’s Organization

Cheryl has a wonderful bunch of friends with whom she used to play bridge, decorate church and other activities. Our neighbor and long-time friend Jane has organized several of these women to come visit Cheryl on a regular basis. On various Wednesdays of the month Cathy or Kathy or Marg will appear for a visit. On the third Thursday Carren and Nancy (different Nancy) come to visit. Barb has come on the last Thursday to take Cheryl to lunch. Thanks to all of you for spending time with Cheryl.

Cheryl needs social interaction more and more as we travel this Parkinson road.

Clementines

This group of women went to grade school together (St. Clement hence the Clementines) and have kept in touch throughout their lives. Kathy, Jeri, Kathy, Anne, Mary, Barb, Mary Pat, Marilyn, (I missed someone) you are a great group of friends she has had since grade school and she really enjoys your company. Thanks to all of you for being part of Cheryl’s life.

Thanks specially to Kathy and Marilyn for talking to Cheryl over the phone when she her confused mind has decided there is a Clementines emergency.

These are really just a few of the things, people and experiences that I am thankful for today. Cheryl has told me several times over the past week that Easter is next week. Last night she did not believe that Thanksgiving was tomorrow. This morning she seems unsure of our activity and remarked that it will be a busy day. Somewhere in her confusion she knows today is special. To all of you who help us no matter how small, thank you for all you do and have done.

Time to shape the rolls.

Carpe Diem.

The Decorations Continue…

The tree went up today. Perhaps a bit early but hey, according to Cheryl Easter is in a couple days. We have to get ready. Some ornaments are placed in a special circumstance like a lamp or the chandelier that in the picture below. The twelve days of Christmas garland was placed on the china cabinet. That is a new position this year. Much like the trip to the shoe store it is an overwhelming task.

The dementia and associated cognitive decline keeps her from maintaining any focus for more than a few minutes. It also adds a twist of spontaneous creativity. We have had this floor lamp for years. today she said, How can I hang these on the pull chains?

Some ornaments were hung on it with care. The beaded garland went over the door to my hideout. There are more to come sometime. Late night punding has commingled with hanging ornaments. Sometimes the ornaments are viewed and reviewed and replaced in their storage container. So far the tree has captured about seven ornaments.

Not bad for three hours of activity. It can be dumfungling to her. (Use a new word often and it becomes yours.)

Carpe Diem

When She Says Thanks

When she says thank you, I respond with you are welcome.

When she tells me, I’m sorry, I respond with you do not have to be sorry.

We have these conversations all day long. I started this blog post after reading and responding to the Facebook post shown here. I suppose I have not thought of this before but politeness and kindness are very basic to the whole care giving, care partnering thing.

For many months earlier when she was dealing her dementia and before we monkeyed with her meds and bought a new bed so we can sleep better, there was a lot of tension between us at night and this sort of conversation did not happen.

This disease is a displeasing feeling in one’s posterior. Injecting calm and kindness makes the day go easier. (And the night.)

Tonight she is following three different cookie recipes to make something that she is going to use tomorrow. So far I see butter and eggs in the bowl with some sugar. Earlier I was thinking of forcing my help on her. In mid-force I decided what the hell. I can throw away the butter and two eggs tomorrow. Pretty cheap solution to calmness in the household.

Carpe Diem

Poetry and Other Prayer

i carry your heart with me

By E. E. Cummings Copied from the Poetry Foundation

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
                                                      i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

A couple people help me occasionally with Cheryl when I need to do other things. Today I had planned to go visit our lab area at a nearby community college but that changed early this morning. I sent a text to Linda and told that the situation changed but she was still welcome to come visit for a bit. She came and we talked about her sister who is struggling with cancer and other things going on in her life.

In a different discussion Linda revealed that Frank (My cousin, her husband who passed out of this world a decade and a half or so ago.) kept a book by E. E. Cummings on his desk in addition to books by Robert Fulghum (It was on fire when I laid down on it, and others.). I vaguely recalled that Cummings was a poet but I was not sure so I looked him up on the world wide wait. I was proven correct and I went to a poetry website that I occasionally visit. Searching for some of his work this was the first poem displayed. (I think Frank was talking to me.)

Thanks Linda and Frank. I have found another poet who speaks to me. And thank you Poetry Foundation for being there when I need words to guide my heart.

Carpe Diem.

Furniture Rearranging

It is possible that my thought about how to better utilize our space will cause me great heartache. I asked my son and grandson over to do a bit of furniture rearrangement. We do not seem to be as focused on the television as we once were in an earlier part of the journey with Parkinson. Stimulus money from two different administrations left us with new furniture and extra sleeping facilities. The living room remained focused on the television like some early 1980’s sitcom living room. I wanted to change that look. I read mostly but there are a couple shows I like to watch. Cheryl rarely sits for more that 20 minutes to watch anything. She seems to struggle with any story line in any show. So the television is no longer a focal point.

I turned the whole room 90 degrees with the help of my son and grandson. We moved the dining area around a bit also and now the walkways are a little wider to allow for walkers and mobility aids. I have made one slight adjustment. Her recliner is electric and I put it closer to the wall to hide the cord. I have since moved her recliner to the other side of the end table (away from the wall) and hide the wires under my chair and the end table (side table). Her chair is now approximately in the same position as it was previously just turned about 90 degrees. She is comfortable with that position.

She asked me if we need to notify anyone of our new address and she wants to know if she will need a new key. Moving the furniture around makes her think that we have moved to a new condo. I told her that I had the locks keyed like the old ones so no new keys were necessary. I also dutifully instructed the kids and neighbors of our new/not new address.

Dementia is amazing in its scope. In Cheryl’s case location in time and space are intertwined. If I knew the phone number for heaven I could help her call her mom. Sometimes she wants to do that.

Heaven’s phone bank – Hello Heaven. Gabriel speaking. How may I direct your call?

Carpe Diem.

bump-n-run

It Seems Counter-intuitive

Cheryl has some dementia which is a nuisance with her decision making process. Any attempt at speeding her up doesn’t seem to work well. She merely gets angry and frustrated with her husband. And it is hard for her husband to not speed her up. That must be fifty-two years of helping getting in the way of care partnership. (Smiley Face)

This morning I tried to move her along without being pushy. Yes, I can be and have been pushy.

She wakened several times overnight to go to the toilet. I got up to help her once. So, when the seven am medication alarm went off, she ignored it. I got up to remove that annoyance from my ears and get her first dose of stuff for the day. When I returned her snoring indicated disinterest in arising for the day.

I laid back down to see if she would stir again. When I awakened it was eight am. I must have been tired also.

Eventually I left the bedroom to make coffee, get the papers and turn on the news to discover which part of California is on fire. An hour or so later I kissed her awake and she asked me when church started. I told her that she had exercise class at noon. I left to drink more coffee and to listen to the interesting fact that no toilets could be flushed in Mississippi. I returned for another gentle nudge and she got up.

I suggested scrambled eggs and toast for breakfast and she readily agreed. I continued with gentle nudges and quit concerning myself with whether she would be late for her class. She was not late.

The exercise classes she takes at Parkinson Community Fitness are a benefit to her so I make every attempt to get there on time but today I tried a not pushy technique. I call today’s strategy “bump and run.” I would engage her and nudge her thoughts and then leave. I came back a few minutes later for another bump and run. It worked and neither of us was upset when we left.

Today’s class was led by Paige and Jenna. Jenna’s notes are here. The rowing person is excited to do the exercise.

Carpe Diem.

More Things that I Have Learned

  • If you are going to try to get your PwP to speed up to go somewhere make sure you have your act together first.
  • What ever schedule that you have in mind is busted, so, move on.
  • Some people sleep in occasionally. It is not apathy, just the ordinary need for luxurious life.
  • “Church” is merely another name for going somewhere. Just repeat the answer to: Where?
  • Do not panic when she asks where we are sleeping or asks if we are going home tomorrow. Tomorrow she will not remember.
  • Read her email once a day.
  • Casually look in her disorganized office once in awhile to get a feel for where things could be when “I can’t find my…” comes up.

This is a continuing list and when I stop to think about it and all the things I have had to learn and do it makes me smile. Frustration creeps in sometimes but I think that most of the time I can push it away. The times that I cannot are about what this disease has taken from her.

Carpe Diem.

Happy Anniversary (52)

I woke up this morning and there on my Facebook feed
Was this beautiful expression of love on our anniversary

It was made by my friend Edie down south
God spoke to her, we never talk by mouth

She has this exquisite talent she is sharing
she posted this on the day of our pairing

Edie, you did not know
that fifty two years ago

Cheryl and I were wed. Thanks for your art.
This day is special, thanks for the great start.
August 29, 1970

It was a seriously hot day. We were dressed to the nines. We were skinny. Life was in front of us.

Happy anniversary to us!

Carpe Diem. (I do not know why I wrote 53) 🙂

Decision Making is Hard

In Cheryl’s case,  decisions can be remarkably difficult. They are made worse by deadlines. Lack of understanding of the day or next event add on difficulty. The decision to day is – what to wear?

Parkinson is a big enough trial when it is only a mobility issue.  When cognitive function is affected. It is just plain harder. You as a care partner can help with calmness or not. That thought sent me off into mindfulness and discernment about how to help by not emphasizing the time.

Today is the date of the Sunflower Rev it up for Parkinson’s symposium.  It is an information and exercise presentation by UC Health in Cincinnati.  And we are getting a late start.

Although we had talked about it last night before bed and I had emphasized getting to bed on time, so that we could get up on time. Admittedly this morning I cared little about going to the symposium but it is a useful thing to Cheryl and occasionally I learn something new. When the alarm went off she awakened but showed little interest in getting up. After some reluctance I encouraged her to get up and have some cereal to get started.

The wild enthusiasm for life, a better life with Parkinson can be intimidating to those of us who through our new duties of care partner and might have been hoping for a more relaxed environment in later life. So when Cheryl started hinting at not feeling up to going I seized on it but perhaps a little to enthusiastically because she changed her mind with little time to spare and we left. But not before I gained the opportunity to point out the lateness of the hour.

Thank God for the great science interspersed between the impromptu exercise. The lecture portion is familiar and reminiscent of many college courses from my earlier years. Bliss.

In a presentation about new chemicals and old standard chemicals I notice that most have the same set of side effects.  The side benefits seem to alternate between diarrhea and constipation, insomnia and narcolepsy, yadda yadda yadda. Of course the doctors and scientists would prefer that patients not focus on the side benefits but those are still there whether you ignore them or not.

A gentleman told his personal story about PD and his journey. Being an ex-football player and wrestler in college he was attracted by the various boxing style PD programs. Rock Steady Boxing was founded in 2006 to empower people with Parkinson’s disease (PD) to fight back through a non-contact, boxing-style fitness regimen and emotional support. The program started in a tiny gym in Indianapolis, Indiana. His coach told him – If it is to be, it is up to me. (Inspirational) He and some others have formed a group – Romeo (retired old men eating out).  Social gatherings are important . One can never give up.

There are things you can do that will make things easier like, no button down shirts.

There’s no hope without data reported Kim who is a research scientist. I like the science. I hate the disease. I do not know where my attitude is today. Perhaps it is still in bed thinking about a Saturday sleep in and then a visit to my son’s house for the fantasy football draft festivities.

But it was worthwhile going.

Carpe Diem.