Socialization

Every Morning and Every Evening

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Every morning when I wake up alone I miss her physical presence. As I get up from bed I sit for a few minutes and listen to my heart and I can sense her. I suppose a very long life of being together does that to me. Our souls are intertwined and connected through the ether. I sense her while doing whatever wake up routine I have decided upon for the day. I do not know if that is strange or normal.

Usually it is coffee and some variety of breakfast food. Today it was merely toast made from a loaf of bread that I made a day or so ago. I futz around and shower, shave and brush my teeth. I make the bed and find some clothes to wear. Today is a holiday so I have spent time making croissants to go with dinner tonight. Those are almost done rising. I am delaying as much I am able because every morning about 10 AM or so I long to visit Cheryl and touch her.

These days she is sleeping later and I do not want to disturb that slumber. If she was still at home with me I would be getting louder doing whatever futzing I conjured for myself. I would be frustrated that she was not up yet so that I could work my breakfast magic on her. It is now about 11 AM and I am feeling anxious to go and visit with her at Bridgeway Pointe. I am also pretty sure she is still sleeping or at least dozing gently and not very interested in awakening. (Today I delayed until afternoon and when I arrived she was eating lunch. )

Today is Christmas. To me that means gathering with family and enjoying the company. Listening to the grand children and discovering what their interests are. Are there any new boyfriends? Girlfriends? Jobs? Changes in trajectory of their lives? Sometimes they are too busy to talk to grampaw – gotta go! This year there is a gap in my heart. I will not have Cheryl with me at this afternoon gathering.

In an effort to get my head in the game I have been listening to a Christmas playlist from Spotify. Many of these songs are new and remakes of older songs. Many seem to have the theme of love and joy at the birth of a child who will save us all. Many talk of love lost or at least gone awry for now. I do not think it is working.

In the evening I have the same thoughts and feelings. I can sense her even though she is not physically with me. I felt that very strongly last night as a got home from my son’s house. He has the smallest grand kiddo. Small people do not bring any baggage with them to holiday celebrations and that is good for us old people who do.

The croissants are cooling now. I will go and see how Cheryl is today.

Carpe Diem.

Sunflower Day!

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It is the day of the Sunflower Rev it UP for Parkinson’s Walk/Run. Cheryl and I thank all who participated, donated and simply is there for Cheryl when she needs help.

It is not too late to donate: https://secure.qgiv.com/event/2sriufpw/ — Cheryl’s team name is SMILE. Because “Mom always told us to smile.” And how can you not smile after saying whoopadidee!

This year was the first year that Cheryl and I did not get up early and head down to the riverfront. Alas as her disease progresses it is not to be on some days. This was one of those. Thanks to all who participated.

SMILE – $2483.00 for UC Health Parkinson’s Research

Carpe Diem!

Baseball Hotdogs and Humidity

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Tonight it is the Blue Wahoos of Pensacola versus the Biscuits of Montgomery Alabama. Pensacola has a minor league baseball team and both Max and Eric are huge baseball fans so we thought it would be fun to go. Tickets were found and we are off. A trip to the pro shop netted a really fine Florida baseball hat.

Real Florida

The team colors are navy and gray. The Biscuits have almost the same colors which makes it a bit confusing from the stands.

Whoopadiddee

It was a great time although Cheryl ran out of gas at the bottom of the seventh inning with the score tied 3 all.

Carpe Diem.

Sibs Dinner

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Cheryl and I gathered last night at a place on a little river nearby with most of her brothers and sisters to celebrate nothing in particular. They just wanted to be together for a bit and share dinner.

The conversation swirled around Cheryl and a small child in the next room was testing her lungs on the building acoustical characteristics by screaming. She was probably about three years old and comfortable in her own skin. No one was scolding her.

Tari had her bluetooth cicada stuck in her ear in case there was an emergency and drank a very white pina colada. (I always saw them as yellow sometimes pink if they had a maraschino cherry garnish.) I put my cheap cellphone on the table in anticipation of Cheryl’s 7PM medication but forgot to check if the alarm was set. Nancy has gotten Gene to drink amaretto sours which is the only thing she will drink other than water. Gene usually drinks only water. Cheryl had a Pepsi because they did not have Coca Cola. Ken ordered a Captain and Sprite which I suppose is another Pepsi product. Jill drank water no ice. I had a dark colored Budweiser tasting beer (beir) on tap brewed locally by some mystery brewer specially for this restaurant. It was okay bier.

The food was excellent. The Deutsche themed restaurant offered schnitzel which I have not had for some time. Kartopfelpfannkuchen came with it. I ordered that. It was perfect. Cheryl ordered chicken tenders with the signature bourbon barbecue sauce, broccoli and apple sauce. She ate most of it which meant she both liked it and she was hungry. Barbecue chicken of some sort was the majority dish for the rest of the table. Others had a rib-eye steak and chicken cordon bleu. Those decisions made the conversation continued loudly. Cheryl had her parkie voice on which is very quiet.

The room was decorated with models of tanks and other weapons of war. Above the two marines in the front window there hung a bazooka the nemesis of tank warfare. It did not appear loaded. The current Abrams (M1) tank did not have a model present as did not the Bradley fighting vehicle. I think there was a Patton on display.

This is the sort of gathering that Cheryl’s mother Elaine would have enjoyed and as we were driving away it became apparent that Elaine had been there. She began to worry that her mom would not get home. That was our job most of the time when her mom was still alive. I assured her that her mom was where she lived now and would not need a ride. Cheryl reminded herself that her mom had passed onto another plane.

When we got home we watched TV for a bit and as it got closer to bedtime and she was more tired, she was also more confused. We talked some more about Elaine and as she remembered that her mom was in heaven, she asked, “Was there a funeral?” I replied, yes. Do you not remember? No, I do not she told me. So I started down the road of jogging her memory. Nancy got up and read a wonderful eulogy about your mom. Do you remember? Oh yes I remember that now. She talked about Bob and Mom. (Nancy did not but did a very respectable job of eulogizing her mom.) It is hard to keep calm and composed when your parkie wife wanders off into the memorial weeds. I merely acknowledged that and reminded her that we had a little luncheon in St. Clement’s lunch area. She remembered that pretty well.

She calmed down and called our son Scott with the news that we were home downstairs of grandma. After she finished her call with Scott she asked, “Is grandma not upstairs?” Her thoughts will bounce around for awhile after a big group gathering. She eventually remembered that her grandmother had passed away but became anxious for a bit that she could not remember any of it. Her grandmother’s funeral was early in our married years. I could not help her remember but we did settle on her calling her cousin Barb to find out what happened to grandma Moeller. (Today as I write this I notice that any and all of that anxiety is gone.)

Trying to keep up with conversation with her siblings is exhausting for her. They are catching up and joking around. This activity takes her back to her childhood and young adulthood. The small child screaming at random intervals seemed to add a nuance of grandchild. Her mom was there too. She was in the house on Phillips Avenue and we went home downstairs to where Aunt Jean lived. These were confusing thought patterns.

And eventually we both went to sleep.

Today after I took her to exercise class, Cheryl ate the leftovers that she brought home for lunch . She suggested that we go back there for dinner or lunch again. We will. They have food that Cheryl likes. Suggesting that we go back is a big endorsement from Cheryl.

I might get a different bier though.

Sadly this room was decorated with weapons of war or krieg as the Germans would say. All in all a good family visit.

Carpe the schnitzel Diem.

Serendipity

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One of our regular social gatherings is Pizza Tuesday. (Yes, I know it is supposed to be taco Tuesday.) Most times it is just a few of us, maybe 3 or 4. Occasionally Cheryl’s brothers and sister show up. Last evening in a moment of serendipity her cousin and many of his family showed up to celebrate their father’s birthday. Cheryl got a hug from her cousin that she really has not talked to for years.

Bob’s second wife died about a year ago and I took her to the funeral mass. We did not stay for the gathering after because Cheryl was not doing well that day.

Cheryl did not talk much to Bob. For one thing he was there to celebrate with his family in the big front room. For another although he may know of Cheryl’s on going battle with parkinson and dementia, he may not know how long it takes for her to get a thought out. Sometimes her thought is gone before she can vocalize it. I have been watching this for years. At home I merely wait.

Others have a hard time waiting so they want to guess what she is trying to say. Forming thoughts and then assembling complete sentences, keeping track of any names that need insertion is a hard task for Cheryl these days. I only help when I am very sure of who or what she is talking about and even then I can be wrong. Parkies can change topics in a heartbeat.

Last evening, however, was special and when we got home she wanted to do two things. Get Bob’s telephone number so she could call him and talk. And sit outside for awhile and watch the clouds go by to expose the moon and the planets. Venus is very bright and the moon is several days past its crescent phase. Watching the night sky lately seems peaceful for her.

I asked her siblings for Bob’s phone number. She now has his phone number for when she wants to call him.

As we left the restaurant her brother, as he often does, said to me thank you for taking care of my sister. My inner thought to him is I love her dearly and we made a vow to each other fifty years ago. What I say to him is “you’re welcome” and that bothers me sometimes. Some day I will pour my heart out to him. He is a good and kind man.

Carpe pizza Tuesday Diem

Photo by Kasumi Loffler on Pexels.com

Cheryl only likes pepperoni on her pizza but last night was a bruschetta night.

A Simple Phone Call

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Cheryl delights in getting phone calls from people. It is a simple way for people to talk to each other on a direct basis. It is not a public conversation like so many on Facebook. Cheryl does not understand Facebook. You say to yourself- what is there to understand. Exactly. Now you know where her mind is.

About a year ago I wrote a long letter to her brothers and sisters in the hope of one or several of them would occasionally call Cheryl on the phone. Perhaps it was too subtle of me to suggest that they could do that in amongst a long list of other things that could and would help her to stay connected. They are not as communicative as I had hoped.

Cheryl, however, is always hopeful. When we return from anywhere – literally anywhere – she always wants to check for messages. She does this even though she is unable to remember how to do that. We still have a “landline” although it is no longer connected to the land. I keep it to give the robocallers something to do. Sometime this nice man in India (or Pakistan) who claims to be Mike with Medicare calls. He rarely leaves a message but once in awhile a real person does like my brother-in-law in Florida or a friend of Cheryl’s who does not understand her plight and still calls on the sort of landline. I can check for messages on my computer by logging into my Spectrum account. I suppose that is too much technology but I like it.

I think I miss the days when the phone was a phone. I think I miss phone books too. It was easier to track down folks that you had not talked to for some time. A method to reconnect was in the phone book. People who did not need connection had their phones unlisted. The roboes did not call as much then.

We used to have dumb phones. Now the phones that everyone carries around are small hand held computers that people rarely talk on. Many seem afraid that we will miss something. My sister-in-law walks around with a single inexpensive earbud in her ear that looks like a cicada in case someone calls. Maybe she is a secret telemarketer like Mike from Medicare.

When I was still working as an engineer, if I was talking to someone in my office, I did not answer the phone on my desk. Once one of the technicians and I were discussing a problem we were having with a machine and the phone rang – with an actual bell. I ignored it and he said – aren’t you going to answer that? My response was – not right now. You and I are working. If it is important they will leave a message or call back. He seemed bemused that I did not answer it right away. Others I knew would and if I needed to talk I called them on the phone even if they were in the next cubicle.

Many broadcast messages on Facebook and twitter and tiktok etc. I think that is like trying to find information in a noisy pub. It takes time to narrow down the source and then details may not be initially forthcoming. You might have to shout your question in a pub – you might have to ask your question in public on social media. It is possible to get an answer from a totally disinterested party. Who needs that?

Call Cheryl on the phone. She really enjoys conversing even though she is not good at it anymore. Be patient. She may really have a hard time finding words. Keeping connected with others is important to parkies and care partners. It gets lonely sometimes on the road. Conversation is crucial to good mental health.

Carpe (the land line) Diem

Let Conversation Flow

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On the third Monday evening of each month we gather at the Parkinson Community Fitness facility for our support group meeting. Support groups are not for everyone. I would probably not go if it was left up to me. (I am smiling.) As this disease has taken over I realize that sometimes I just want to listen to other people’s stories. I want to hear what they are interested in. I want to let them tell me what their concerns are. I have to resist telling them how to fix it long enough to discover how they solved that problem or overcame that obstacle. It is part of my personality to jump in with a solution. If I resist the temptation long enough, I learn things. Dad said to me a long time ago that you need to listen to the other guy even if you think he is a jerk because he might have a good idea. I took that to heart and remember it. It was during my early working career. Do not let personalities get in the way of good ideas.

Do not let personalities get in the way of conversation. Little snippets of intimate knowledge and deep personal beliefs and fears emerge in between comments. Listen carefully. Many people are not very guarded in their speech. Many will become comfortable and reveal small but important details that might not be spoken out loud in another venue.

Our group always starts with a list conversation starters. We are not that good. There are plenty of support group resource materials. We always select too many and often use few or none. For our Monday meeting we used these seven.

  1. A UC Health article shows in a new trial, led by Dr. Espay, says that drugs delivered continuously through a pump was more effective at controlling symptoms of Parkinson’s disease without causing dyskinesia. Also, over a three month trial period, patients receiving ND0612 had 1.73 more hours of daily “On Time”. Does anyone have additional information about this?
  1. What are some fun activities for Parkinson’s Patients?
  1. What are some positive coping mechanisms for managing Parkinson’s Disease?
  1. What are some important goals for caregivers to have in caring for a Parkinson’s Patient?
  1. Can you name any other ways to improve the quality of life of a Parkinson’s Patient?
  1. How can a person with Parkinson’s Disease cope with depression and/or anxiety?
  1. Have you, as a Parkinson’s disease patient, made any adaptations to your diet that have helped you in any way physically and/or mentally?

Our group is a joint group. Some have Parkinson. Some are care partners. Last evening one of the group members needed to talk about her recent experience as caregiver to her husband of many years. They recently changed doctors. (It is important to find a doctor that you trust in.) During the doctor’s initial evaluation, the great ones do not accept what is written in previous records from others, which was supposed to last for two hours, her husband experienced some odd symptoms which extended the visit by several hours. Tests were done. After a team evaluation it was determined that his meds and dosage were incorrect. These were changed and in her words, he is like the man I married again. In a support group environment let the members speak about their concerns at the present regardless of the list of conversation starters that was sent prior to the meeting.

The second topic – fun ideas – produced a long list of activities. We can save the rest for later. Sometimes it is necessary to simply talk to a group that empathizes with your situation in life.

Carpe Diem.

It is February

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February is a melancholy month. Thinking back to childhood, it is the coldest month. In four weeks it will be March. March is the first happy month. The world is waking from winter.

February is like the early morning. The care partner gets up quietly so as to not disturb the early morning peace. He stretches and puts on a sweater. He makes coffee. He opens the shades to see the sunrise. (Shifting person lets me step outside of myself.)

Cheryl is sleeping late. Early in the day yesterday she was showing signs of her impostor delusion so I got her out of the condo.

She is upset with the passing of her cousin Gerry. Janet, Gerry’s sister, called yesterday to report the news of his passing. We talked on the phone for a little while. I put the phone on speaker so Cheryl could hear and participate. All of us reminisced for a bit. After Janet hung up, Cheryl got up to get dressed. In that interval she became the person in charge of Gerry’s celebration of life. She decided she needed to pack for the trip. I helped her for a bit.

On the fly I conjured a tour of the countryside. I was not sure of where other than simply out. I sent a big long text to her brothers and sisters so they would be aware of her mental state if she abruptly called them.

We visited her mother’s grave. We had talked of this for a couple weeks. She often loses the fact that her mother has passed away. I struggle with ways to gently help her understand that I cannot take her to see her mother. For a moment yesterday she seemed surprised to read her mother’s name on the stone. It broke my heart to realize that this is the thing she cannot remember, her mother’s death. Cheryl and her Mom were very close. Her dementia was at the very beginning about five years ago when her mother passed away. I suppose I did not realize at the time that she had shoved this knowledge into a place where it was not easily retrieved. Gerry’s stay in Hospice and our visits to see him bought back a flood of childhood memories.

The written world and its words are a jumble to her. She told me that Mom would stay here until she is cremated. I drove her to another part of the cemetery where our niche is located waiting for our cremains. I do not think she understood that she had become her mom in her thoughts.

I let that go. I decided I was trying to fix an impression that did not need correcting. Often in her conversation she is a child, her mother, my wife and mother to our children and occasionally I become Dan, David, Scott or, in the very early morning, Janice all within the same five minutes of conversation. She wondered aloud if the cemetery office would know where Gerry was to be buried. I replied that Gerry was going to be cremated per his request and his remains interred in the parish cemetery in Kentucky. Oh she replied.

I started a conversation about where to go for a walk when we left the graveyard. She said we could go to Mom’s house and then corrected herself to say, “where Mom used to live.” Internally I smiled. It seemed to me there was hope. It is February and we are in Ohio.

I suggested lunch first, so, we discussed various places nearby. We landed at one of Ohio’s claims to fame, Bob Evans’s Farm Restaurant. There are a bunch. One was close by and it was the one she would take her mom to occasionally. While waiting for our food we chatted about various topics. I sent a text to my son David and asked if he would be home in the afternoon. We had forgotten our pie plate and the carrier and I thought to retrieve it. He lives far enough from us that Cheryl would get a sense of “going home” from his house.

When we arrived at David’s house a neighbor’s garage was on fire. It was several yards and a street away but it added a certain amount of urgency to getting in David’s driveway and added a discussion of events totally unrelated to Gerry’s death. Melissa made fajitas for dinner.

It was a good outing. Cheryl was exhausted when we got home. Later this week I may probe her memory of her mother. (or not.) This was a long rambling story about a day that made me anxious about her mental state which seems to be deteriorating quickly some days and some days not.

On this morning, the day afterward, she did not open an eye until I awakened her at ten o’clock. She had not changed position from when I got her into bed at just before ten the previous evening. She did not stir when I came to bed an hour or so later. She did not stir overnight when I made my usual couple trips to the bathroom. It seems as though she sleeps more lately but sometime she is agitated about something in the evening and when I ask she is unable to vocalize her thoughts.

Dementia and Parkinson’s are miserable companion diseases. (And they both suck.)

Carpe Diem.

Children are a Joy

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

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

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

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

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

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

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

Carpe Diem.

Chicken Vegetable Soup

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After our great time at the Purple Poulet a couple days ago, we brought home a lot of chicken. I wrote earlier that it was the best chicken I have had for some time. Leftovers do not keep forever, however, so with 4+ inches of snow on the ground and Cincinnati playing Buffalo again, it seems like a good day to use the last of the chicken for soup.

I called our neighbor and friend Jan and explained my plan. She came over at halftime. She is a bigger football fan than I am. We left the TV on through grace. The Lord will understand.

Jane’s back was bugging her and has been for some time. She left early to lay on her own floor and stretch and do leg lifts while watching the football game. (She did not want my yoga mat.)

The soup turned out great. And except for Jane’s back stealing the show, it was a good evening.

Carpe Diem.