Caregiver diversions

New Year’s Day

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We had a great visit from all the kids and many of the grandkids. On New Year’s Eve I spontaneously asked our children if they had anything special planned for New Year’s Day. I asked if not would they like to gather around our table for a meal in the afternoon. I suggested about 4-ish. They all said yes.

I stole this idea from Frank C. Church. Thank you, Frank for a spontaneously good time.

Who can tell? Maybe a new family tradition? Traditions have to start somewhere. They are kept up if everyone has a good time participating. Zachary certainly had a good time. He had not seen grandma’s marble race before so Mom and Gavin helped him put it together.

Most importantly Cheryl got to have everyone at her house. She smiled and laughed at the conversation and activity. It was simply wonderful to see her smile.

Her smile and laughter are less as we head on our journey of Parkinson. Yesterday was very special to her and to me.

Carpe Diem. And don’t forget to connect!

Don’t Be An Asshat

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Asshat is one of my favorite terms for “stinker”. When I read it in a book it makes me giggle internally.

Today I was an asshat. Cheryl had a rough night. She spent a long time feeling something in her bowel that would not happen. Sadly one of the often not talked about symptoms of Parkinson is constipation. This condition is treated with various devices, more veggies, extra fiber, fiber enhanced foods, docusate sodium (stool softener), Miralax, psyllium husk powder, and others. The result of many of these maybe all is an emergency. And sometimes a declogging device. We have been down this road many times.

Why I did not recognize it last night at 3 AM is beyond me. Maybe not.

I was an asshat. Today I am trying to recover from my overnight asshattedness.

Happy New Year! My One Word is CONNECT

Carpe diem – Get up! Connect! Move!

Recurring Themes

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There are days, and this may be one of them, when I wish for Cheryl’s physical Parkinson’s symptoms to be worse and her mental Parkinson to be less. She actually moves quite well with the C/L in her system during the day. If in the middle of the night she might get up to toilet once or twice she moves pretty well then too. She might be slow and slightly disoriented but at 3 AM I am too.

Late Autumn and Winter is the worst for her mentally. Last evening she stayed up very late; frantically organizing and reorganizing her papers and cards in her office. She eventually allowed me to help her to bed about 11:30 PM. I heard the clock strike midnight before she succumbed to sleep. She had been talking gibberish about the kids.

five repetitive themes

She is often confused as to who I am. I am that other Paul. I am Dad (as I was last night encouraging her to get rest before our big outing with Marilyn.) Some times I am Scott but if not she will ask, “Did Scott go home? Or, Is Scott here?” Some of this is simply aphasia and she cannot find a name in her head. (Me too, occasionally.) If I cause stress in her by insisting on something she will be very anxious about me being around. Insisting is always a bad idea but I often forget that. I try to hedge and let her decide she wants to – go to bed, eat dinner, have a cookie, have cereal for breakfast, etc. Often that works, often it does not. It can be frustrating when you are also tired.

“I want to go home now.” – She believes for a time often late at night that she is not home and wants to go home. Sometimes this delusion is overpowering and I help her find shoes and a coat and I drive her around a four mile circle and home. I reinforce the we are home thought by saying plainly, “we’re home now. I’m glad to be here finally.” That will reset her brain and she starts to think we are home. Sometimes it works only partially and she thinks – wow, this is neat. How did they get all our stuff here so fast?

Recently she has asked how we will get all our stuff home? Do we need to get some movers? I merely replied yes, I will call them tomorrow and set it up. — I wonder how long the “I will take care of that tomorrow” ploy will last. For now it does. She has not yet asked when I was going to call the movers in the morning while I am organizing breakfast.

“We are in Detroit” When Cheryl went to high school she was following the prescribed path to become a Franciscan nun. I met her originally in the summer between her junior and senior years in high school. When she was a freshman, a teacher she had realized she may have some potential in english or journalism and arranged for Cheryl and a couple of her classmates to attend a journalism workshop in Detroit for a couple weeks between her first and second years in high school. It made a deep impression on her. In many ways, when she talks about it, it was as though she traveled to a foreign land. And she thoroughly enjoyed every aspect of it. Her favorite TV show and the only one she really watches is a show called Bob (<3) Abishola which is set in Detroit. Watching the the show, she will tell me stories about Detroit but mostly I think she looks at the screen because some views will spark a memory.

“When are we going home?” Is her theme some evenings when she is sure we are in Detroit. I did not realize at first where she thought we were. I discovered this later through conversation. — I can respond, “We are staying here tonight and going home in the morning. Is that okay with you? It is late and would rather drive home in the morning.” Most times traveling along with this theme she responds with, “Yes that is a good ideas. We should rest first.” Once in awhile the Detroit delusion lingers until morning. It is often gone at breakfast.

It is time for office work — is usually a physical activity. In our second bedroom that became her office when we bought this condo she will spend time organizing. Or doing nothing. It is her version of punding. If she starts doing it at 9 or 10 PM there is no easy fix to getting her to be interested in sleep even when it is obvious to me that she is very tired. She takes a prescription to help her sleep as well as melatonin to help her fall asleep but her will is strong when she decides to – get this stuff organized. It breaks my heart to see her do this mindless activity. Last night I sat with her because the later she stays up the wobblier she gets but her confused mind will not let her see this in herself. In her brain she is a 35-year-old computer database analyst and the deadline is tomorrow.

These behaviors generally occur late in the evening. I sometimes succeed in not being Mr. Cranky Pants. This part of His plan sucks for sure. It is hard to be calm when the Plan has dumped on you and the previous night was smooth and uneventful.

Whiskey Tango Foxtrot comes to mind.

Carpe Diem.

Merry Christmas

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In this season of happy and family and celebration, after I have gotten through all the wrapping and cookie making and other organizational tasks, I slow to take stock of the year. Good things happened and not so good things happened but mostly this year was. It is in the past now.

Throughout this year Facebook is a personal source of joy, amusement, interest, empathy and puzzlement. When some political whiny rant appears, I am puzzled by the things total strangers will say to others that they would not say in person. I am filled with joy at the pictures of children both young and old. I am amused by the various MEME cards that folks post, sometimes without thinking. I am interested in other care giver’s thoughts as they travel down their road of Parkinson. And I am empathetic to their particular struggles. In this collage of pictures selected in no particular sequence are pictures of things, people and MEMEs that appeared on Facebook during the past year and I downloaded to my tablet as I watched the TV news and waited for Cheryl to wake up.

The good things

  • The joy in Zachary’s face. He always makes me smile.
  • Luke’s artistic muses in photography
  • Family
  • family gatherings
  • Max is off to Miami University — I am class of ’72
  • Laurencia is 21!
  • Cindy Smith
  • Linda Weisgerber
  • Kathy Mellen
  • Mary Jo Horton
  • Jane Pohlman
  • Parkinson Community Fitness
  • UC Health
  • Jeff and Stephanie’s ELFie – Elizabeth Laura Fisher
  • Zane and Charlotte
  • Lydia (think songs from the Music man)
  • Anniversaries
  • Anna’s 50th birthday (I love you)
  • trips and vacations
  • New people in our lives
  • Looking back and memories
  • Learning how to make cookies
  • Sr. Carren and Nancy Strapp
  • Visits from friends of Cheryl
  • Phone calls to Cheryl from her friends
  • Special friends
  • small faces and their happiness
  • Jana Ann
  • The class I took on being a good care partner (Linda stayed with Cheryl so I could go.)
  • A new found interest in cookies and muffins
  • Finding out that adjusting meds, schedules and eating has reduced Cheryl’s upset stomach to non-existent almost. (and the neurologist MDS says bravo.)
  • Lunch with Marilyn

The not so good things

  • Constant reminder of Parkinson
  • Anna’s Fiftieth birthday (wow, I am old.)
  • Cheryl’s lost memory
  • Learning how to make cookies (there have been disasters.)
  • Cheryl’s worsening confusion in the evening
  • dementia in all its forms – delusion, hallucination, Capgras, sundowner, showtime
  • frost on the window (I have never been a big fan of winter)
  • avocados
  • Cheryl wanting to talk (call) to her mother in the evening (which worries me – I think – unnecessarily.)
  • Late night punding in her office

These are both incomplete lists. However the good list is already way longer than the not so good list. (And a couple of those are tongue-in-cheek jokes.) I constantly try to turn away from letting Parkinson and dementia drive our life.

I will probably add to these lists during the holiday down time.

Carpe Merry Christmas Diem.

More on Parkie Time

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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.

Back in the Olden Days

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Gift wrap at a department store was free for purchases from that store. The malls often had a bunch of girl scouts or boy scouts wrapping boxes and raising money for their troop. If you did not want to get stuff wrapped boxes were available from the department store. (With their logo)

That slowly faded away over time. It was part of the season and might still be there but I have not shopped in a department store for several years. Parkinson disease interlaced with dementia does not enable that to occur with ease. I lament that fact.

This year we did spend some time shopping at J C Penney. Cheryl has always liked Penney’s store. It is one of the few department store chains still surviving after Federated Department Stores sucked up many of the littler ones and became Macy’s. A couple days ago a nice gentleman gave us a couple coupons on the way in the door at J C Penney and bid us well as we began our shopping experience. Later when we had a bunch of carefully selected gifts piled onto Cheryl’s walker and headed to the front to purchase them, he saw us coming and as the line to check out was long he asked the woman staffing the cosmetics counter who was idle to check us out. She smiled and said sure she would do that.

As we approached the counter to do that another frantic old woman who had just come in the door barged in front of us and asked the cosmetic counter staff if she could “pay her bill here” because the line was too long to stand in.

Two things I have not thought about perhaps ever in my life; driving to the actual department store to make a minimum payment on an invoice that was sent to me via USPS, something that can be done by return mail and manifesting surprise at the length of the checkout line at 1 PM on a Sunday afternoon two weeks before Christmas. Perhaps she could not afford a stamp or did not have a stamp and the bill was due on Monday. This woman decided to chat with me about those things while the woman behind the counter opened a different computer to access the billing records and accept the $35 minimum payment on her J C Penney account and applied it to the customer’s Visa account. It is easy to understand how cash strapped elderly women get over their head in debt. (Sorry, that was unkind.) I did not chat. I merely stood silent and waited while Cheryl stood there looking tired.

Eventually the nitwit was gone and the cosmetic woman picked up our purchases on her counter and said, I need to get some larger shopping bags. She was gone for about 20 seconds. She checked us out and I helped put the stuff in the bags because she had very little space on her cosmetics counter.

We completed our purchase and I thanked the woman for allowing us to check out with her. She smiled. Perhaps no one had thanked her for helping them that day.

As we left the store I noticed that the long line had dissipated. I remarked about that to the gentleman who was still staffing the door passing out coupons. He smiled and wished us a good afternoon.

Carpe Christmas shopping Diem.

Happy Birthday, Joyce

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Holy cow. For two old people we look good.

I talked to Joyce yesterday and wished her a Happy Birthday. She and I are last of our family still awake in the natural world. She sent me these pictures of her and I sent her a picture of me. Her friends went out to celebrate her birthday and she got to meet Santa.

I sent her a text message early in the morning and wished her a happy birthday. We are the middle two in our family. Our younger sister and older brother are both gone now. It is just us. She called me back when she was walking her Mexican rescue dog. We talked about everything and nothing while she walked her dog. I commented that the crows were far away this morning and she told me it was cold in Portland so her ear phones were under her hat. She sent me a picture.

I think it is important to have family around. When our brother passed out of this life a couple years ago in the beginning of the whole covid pandemonium from something else not covid, it left another hole in our family. When our younger sister passed away from cancer in 2008 she took part of me with her. I had been her stem cell donor. Dad died the year before our sister. Mom died a few years later. Now Joyce and I are left.

We both have the same Carhartt hat. How warm is that?

Happy Birthday, Joyce.

Carpe Diem.

Thanks

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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.

Full On Baking Mode

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Well Thanksgiving is tomorrow, Christmas is a couple days afterward and then Easter is the following week. Cheryl thinks that anyway, so, we are all decorated for Christmas (Soon to be Easter) Season.

Yesterday I made banana nut bread out of some soon to be brown bananas purchased specifically for that purpose. Here is the result.

Later today we will make the sugar cookie recipe that Cheryl remembers as a child and later on she made when our kiddos were small. As you can see the Mirro cookie press booklet has been though many cookie wars. (The cookie press itself has been replaced many times.) I am in the process of transcribing these recipes for posterity but I suppose if I look hard enough I could find them elsewhere on the internet of all knowledge. I am not very busy. One more thing is okay.

The cookie dough has been hanging out in the fridge overnight so it should be perfect today.

Carpe Diem

Christmas Trees tell a Story

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As do most things in our lives, Christmas trees and other holiday decorations tell a story of good times past. Some are sad times past but they are stories of our life.

I gave in yesterday as it slowly dawned on me that the tree decoration activity was becoming an overwhelming task for Cheryl. It was her idea and has been for a couple of weeks. “We have to get the Christmas tree up, Easter will be here next week” she told me one day. I had resisted but I thought – who cares? I got the boxed tree out of the garage and put it up. I got the tubs of decorations out and parked them on the dining room table for the next couple weeks. We maneuvered around them. Once in a while she would put up a ornament or two. Many of these are one the dining room ceiling fixture because it was near to the tub on the table.

I have to admit it makes me smile.

Yesterday I had little to do while I was waiting for the laundry to get finished, so, I put up the rest of the tree decorations on the tree. I put the empty tub back in the garage with a small sigh. And the last glass ornament on the ceiling fixture over the table. Our house says Christmas now.

Carpe Diem.