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.

7AM and a Funeral

In an amazing amount of support for our dear friend Linda, Cheryl was able to fall asleep and stay asleep over night. She slept well and this morning she awakened to the 7AM alarm put out by the loud and annoying alarm clock. The past few weeks she has trained herself to ignore it.

Diana, Linda’s sister and very special best friend, left us last week. Visitation for friends and family happened yesterday evening in the afternoon. I thought that would be enough for Cheryl. On the way home from the funeral home we stopped for a bit to eat. Between mouthfuls of hamburger and a review of the dessert menu she told me that she wanted to go to the funeral tomorrow. I reiterated the fact that the funeral mass was across town and at 10AM meant that we would be leaving the house at 9AM. No matter she said she wanted to go.

I told Cheryl she would have to trust me that I would get her up and moving in time to make it. It is very important that you sleep well overnight, I told her. She said she would and she did.

This day is to remember Diana Sehlhorst. Diana came to our condo a couple times. Once after her husband Dan passed away Linda was having a conversation with her about moving to a smaller place. Linda did that after my cousin Frank died many years ago. Linda bought a condo as part of an old home overlooking the Ohio river. Ours is a newer building overlooking the trees in the back and a great view of the sunset across the valley from our parking lot in the front. Diana was looking at options. What she eventually selected was way different than both of those.

I wrote the event on our calendar and posted it on the morning erasable board. I got Cheryl up, helped her to toilet, found her comb and glasses. I went off to get Frosted Mini-Wheats as requested. I asked again if she wanted to go to the funeral mass. Cheryl insisted that she still wanted to go. We left in good time and Google maps guided us to the back of the church property because that was the swiftest way there (allegedly). I navigated my way around the block to the front of church.

Sitting in church waiting for the start of the ceremony I noticed that even at a sad event as a funeral some folks naturally smile. Even with despondency, tiredness and family sadness smiles appear. Little children make older folks smile. Diana had many grandchildren. Not everyone is capable of smiling at somber events. I think that I am not. Even in death there is rejoicing. The comment, “She’s in a better place.” is a tribute to death as a state to aspire to. Funerals sadden me.

We arrived in good time about twenty minutes ahead of the scheduled start. As the ceremony got started and Diana came by in the casket, Cheryl needed the restroom. As Diana came in we headed out to the restroom in back. And we forgot the purse.

At communion Cheryl told me she did not want to go up for communion. After the restroom we sat in one of the rear pews. St. Lawrence church is a long narrow building constructed in the old form of shaped like a cross. It would be a long walk. I went to communion , collected the purse on the way by our previous pew and returned with host. I broke it in two and gave her half. She said, amen.

Diana’s son at the end of mass delivered a small discussion of a lesson he learned from his mother in his impressionable early teen years; If everyone gives 100 percent it’s easier to meet in the middle. Words to live by, I think.

We came home and Cheryl had ice cream for lunch.

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.

Ought, Cough, Bough

Wordle is a game that makes me happy. I found that thought in my head after finding the wordle answer a couple days ago. It matters not that I needed one guess or five guesses. There is no competition. (And yet there is someone on the World Wide Wait that needs to explain to me why it is popular.) It is a personal challenge. It is the first thing I open on my tablet in the morning, well, almost. Sometimes the book I was reading the night before opens itself and I read that for a little bit.

Cheryl is semi-sleeping now. I checked on her. She is “trying to decide” about getting up. We have no scheduled activities or she does not. Actually I do.

Early in the morning while she is in this mode, I have time to look at other things, check email, see what folks are whining about on Facebook. Facebook has a strange way of posting things on my “news feed”. Calendar time seems to have little to do with it, maybe, nothing to do with it. It must be a complicated algorithm. Ho Hum. After determining that there are no email, Facebook or other emergencies, I move on. It amuses me to notice how many folks will post something on a group page which might better be solved by picking up the phone, I look at WordPress to think and gain some inspiration to add to this blog of mine.

The statistics page is often of interest since much of the display intrigues me. Today this little display in the corner seems to report that someone in Thailand looked at my blog.

That in itself is not strange. Type a random thing into Google and it returns all sorts of unrelated finds. But all seven views were of an old post I entitled “Things that make you Happy” and I reread it this morning. I found inspiration in my own words.

Over the past weekend we visited with my cousin Bettie and her husband Herb. It is always a great time with family and friends that we do not see that often. Bettie’s house is perhaps forty-five miles away south and east. It is a pleasant drive through the northern Kentucky countryside and for Cheryl it is a far away destination. On this particular weekend the hurricane that crossed Florida and came ashore at Georgetown, South Carolina had spread its cloud deck inland to eastern Ohio and Kentucky.

On the start of our trek it was bright and sunny. I aimed the car south and east towards Bettie and Herb’s place and drove under the cloud deck. Watching to sun go down from their front porch and side deck was magnificent. My son remarked to me that he had not seen a rainbow before. I do not know whether he meant ever or as brilliant as this one was. It was perfect timing for a follow up question but I did not ask him. Carpe the missed diem.

Like most things I have taken pictures of with the smartphone’s camera, the pictures do not capture the magnificent colors that were produced by nature. The rainbow produced by the narrow view the sun had of the under side of the cloud deck and upper misty air was brilliant and exceedingly bright. The pictures simply do not do it justice. But being there with family and friends and watching a unique sunset made me happy.

Happy to be alive and happy I was able to share the moment with Cheryl.

Carpe Diem

Surrounded by Wonderful Loving People

“Feeling blessed” – is a phrase I associate little with this disease of Parkinson but I am learning to understand the meaning of that phrase with respect to helping others and help from others. Cheryl used to tell her mother that there is grace in accepting help from others. (:-0) Once in a while I say this to Cheryl when she resists my aid.

It is easy to get caught up in “why me?” It is easy to not take note of all the kind and loving ways that people around you are willing to help in some small way. Most do not even hesitate. Wear your gray hair to the door of a restaurant and the guy coming the other way will hold it for you. Carry a walking aid or a cane to the same door and kids will jump up and open the door.

In our life with Parkinson we experience these small helps a lot. Cheryl wants to do for and help others even when they are helping her. There is goodness in everyone. Even when one is certain that the other person has not applied themselves and therefore did not achieve the expected benefit help is given without expectation of gratitude.

From the point of view of “little helps” everywhere often spontaneously offered to us, we are blessed.

Our friend Jane is a great help to me. She has organized a network of care around Cheryl and me. She has contacted many of the group of women that she and Cheryl used to play bridge with. Cheryl is unable to play bridge any longer. The game is simply too mentally taxing for her. We used to play Scrabble in the evening and I did not want to play because Cheryl would always, often anyway, kill me score-wise. With Scrabble and Bridge and other competitive thinking sorts of games, she excelled. Her math and logical brain rose to the challenge.

Jane and the rest have organized themselves into Wednesday visiting parties. Jane comes across the hall on Monday so that I can ride my bike or do whatever. Barb comes on the last Thursday of the month to take Cheryl to lunch. Cindy has been coming over on Thursday in the afternoon so I can go do whatever. I usually ride my bike in the warmer months. Linda has been coming on Wednesday but her sister is very ill and she needs to be with her. (She may not be with us much longer.) Jane is a blessing to us. As is Linda and Cindy and everyone of Cheryl’s friends.

Family …

My son and daughter-in-law have been a focus of my need to get Cheryl out away from our little condo on the weekend. David and Melissa are almost always available for a weekend visit. They live nearby in eastern Indiana. The drive to their place is such that I takes us through the fringe of the city into enough rural properties that here and there are planted corn and soybeans. It seems like a long trip to Cheryl. When we get home her reaction is much like coming home from a long trip.

A few evenings ago I invited a couple of Cheryl’s cousins for dinner. It was a great time. Steve and his wife Marisa sent an email just checking in on us a few weeks ago so I invited them for dinner. Cheryl insisted that I invite Lois who is another cousin from a different direction. 🙂 Lois, Steve and Risa did not know each other except through inference by family name(s). Lois and Steve are cousins to Cheryl but not to each other. Nevertheless the dinner was great. They found common reference by neighborhood. They physically do not live far apart.

Cheryl talks about Lois a lot and her mom Aunt Jean (great aunt). In her childhood she got a lot of hand me down clothes from that direction. Lois is a couple of years older. I may have mixed up the story a little. I am merely trying to track down some of these childhood stories before the people in them are gone. Marian and Tom, Steve’s mom and dad, are gone from this world. Their family is younger. I remember Steve as a boy coming to some of the long ago family gatherings at Sharon Woods Park. Lois is the last, I think, of her family. Her sister Maureen we used to see occasionally at Macy’s in Kenwood doing her supervisor shtick. She is gone.

As we move on and Cheryl resides mentally in her childhood, I have taken it upon myself to reconnect with these people. Many of whom I do not know personally except by my wife’s stories. And her memory is failing her in bits and pieces and fits and starts. I think it is becoming more urgent for me to do this and I do not know why I feel the need to do this other than it brings her great pleasure to talk and reminisce with her cousins. Her most pleasurable stories seem to revolve around the many large family gatherings and smaller group visits.

On my never ending journey to help Cheryl experience the best of her days even though Parkinson is trying to steal the memory of them from her.

Carpe Diem.

Bump and Run

Interestingly to me anyway yesterday’s plan works today.  I suppose that overtime I will come to understand that what I want her to do and the speed I want her to do it are not hers so it can never be.

Today’s class is sitting cardiovascular motions.  I features the Beatles and the Righteous Brothers as accompaniment. Nice.

Spirit in the Sky

Carpe Diem.

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.

Overnight at the Lodge

A few days ago the kids and grandkids camped at a nearby state park. Cheryl knew about it.  They had exchanged text messages back and forth while the planning went on. I did not talk seriously to Cheryl about it until the day before. If I give her too much to think about she becomes anxious with the planning activity.

I suggested we could stay overnight in the lodge there and visit the kiddos at the campground. She readily agree. I called the lodge desk and THEY HAD HANDICAPPED ACCESS rooms available. I did not ask about their cancellation policy. I was hopeful that Cheryl would still be interested in visiting the kiddos campsite when she woke up tomorrow.

The next day we went. It was a great day. I got the big bed pad out and packed it on the bottom of the big suitcase with extra incontinence solutions so that Cheryl would not have that anxiety all day long. On top of that she packed clothes for a week. Girls need choices. I packed a change of clothes in the little bit of space left in the suitcase.

We got there about 3:30-ish and found the room. I texted David and found out where their camp sites were and cruised through the campground twice after misreading the signs the first time through. We found them unloading coolers and tables and chairs and other stuff. Everybody was busy with something so I parked in an empty campsite across the little drive through the camping area. Luke was loading a cooler with soft drinks. Anna, Laurencia and Virginia were making quick work of erecting a couple tents.

Good times were soon to be had. Frisbee games were unloaded. Eric and Max tossed a baseball back and forth. Corn hole was set up. It is not camping if there is no corn hole set around.

There was great camp food. Our son, David, with Cheryl’s help, current veggies and sausage packets to place on the fire. Cheryl had a great time participating in the food preparation. For a short while she was Mom again. She was talking and cutting. Dad was hanging out with the grandkids and the other adults.

We had some great conversation around the campfire.  Parkinson disease interlaced with dementia takes most of the spontaneity out of our living activities these days. I had forgotten about that. I am sincerely grateful that Cheryl was feeling good that day and evening. We both miss the spontaneity of retirement.

And grateful that some of our hoped for spontaneity in retirement was there that day. Twenty-five years ago we would spontaneously decide to disappear on the weekend and hike in the woods or explore some little town we had not been to before. Once we stayed overnight in a bed and breakfast in Chilicothe, Ohio and the B & B was being run by others because the owner was going to Columbus overnight for a cancer treatment. So, we stayed overnight with strangers in someone else’s house. It was amusing and fun and spontaneous.

Carpe diem

An August Evening

Rainy days in August have produced sundowner’s confusion and dementia. On this particular day it seems a bit worse.

Cheryl has had a particularly busy week. Two physical therapy visits and an exercise class happened this week. On Monday evening our HOA board had a meeting to discuss maintenance schedules and what new projects we could take on with the money on hand. Jane came across the hall and sat with Cheryl on our back porch while I attended. (Jane is a wonderful neighbor.)

On anything goes pizza Tuesday we had dinner with our neighbor Jane as usual and in addition our new upstairs neighbor Joe joined us. Joe moved into the front condo over the garage spaces. Much of getting to know you conversation happened. Cheryl knew of a woman which she attended high school with who had the same last name. Her name was Kathy. As it turned out she was Joe’s younger sister. Jane’s husband used to play in several bands when he was still alive many years ago and Joe’s last name was familiar to her also. As the story developed it became apparent that her husband John had played in a band with Joe’s father.

It was a great getting-to-know-the-neighbor conversation. There were lots of memories for Joe and from Jane and Cheryl. When we got home Cheryl was exhausted.

Wednesday, I had arranged for my cousin-in-law, Linda, to come and take Cheryl to her physical therapy appointment. I went to visit the lab of a local community college program that I am still involved with. That facility is twenty minutes or so down the highway and I was gone for about two hours. We later met back up in a local diner for lunch.

Thursday it was my intention to attend a exercise-for-care-partners class at Parkinson Community Fitness after Cheryl’s twelve pm exercise class. I had previously arranged for my daughter to pick up her mom so that Cheryl would not have to stay. I found out my class was canceled at the last minute so when Anna showed up we all went to lunch. Our grandson Max was with his mom and he showed off his new laptop he purchased for college. He will start in a couple weeks.

I had hoped to ride my bike for a bit so Anna and Max remained with Cheryl. Alas, the weather did not cooperate. As I entered our condo Anna was helping her mom sort coins. These had been residing on the dining room table for several days but the project was several weeks old. Cheryl found them back in her office a few days ago. Cheryl told her daughter that when they were finished they would give the coins to her dad. She used to help her dad roll coins from his gas station business many years ago.

Max was frustrated with his new laptop. The camera no longer worked. What ensued afterward was a chat via the internet with some Microsoft expert and ultimately a complete reload of the operating system. That seemed extreme to me but I am an old retired electrical guy whose been fooling around with systems, software and computers for fifty years or so. We are living in a new age now. Ultimately it was discovered that Lenovo had placed a privacy slider to cover the camera on the upper edge of the case. It was a mechanical failure or an operational one depending on who is characterizing the action.

On Friday I was still hoping to ride my bike and the weather was still not cooperating. Cindy came anyway And I went to get a haircut and run a few other errands. I returned about an hour later.

This whole week was generally gray and overcast. It was not gloomy like the wintertime but gray and rainy nevertheless. It is still rainy and poopy outside as I write this.

The rest of the day was filled with visions and stories of her family. She was looking for Scott. Later in the evening she told me a story about Easter eggs, coloring them and Mavis. She eventually called our daughter-in-law Mavis to ask about what her objection was to coloring Easter eggs.

Earlier in the evening she asked, “Where is Ken?” I told her that Ken was probably home but I was not sure. She should call him and talk to him. She did not take that suggestion.

It was a frustrating afternoon and evening for me. Later I realized after she had exhausted herself with a very busy sundowner episode that for the first time this week only I was here with her and she could relax and let all that out.

As she laid in the bed she asked me to make sure the kids all got home okay. This morning she slept until 10 am.

Carpe Diem.