Socialization

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.

A Great Time

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We went out with friends to a new restaurant. We had to be seated on the second floor. There was a ladies room on the second floor.

What a relief it was to us both.

Not the most appropriate opening to a story about going out to dinner with friends but parkinson makes the very small things in life into major obstacles. Those need not be obstacles but they can win out in the “Is it hard? v. Is it easy?” tug-of-war that enters the discussion whenever any social activity happens.

I have written about women’s restrooms and some of those experiences. This is not a blog post about that. This is a story about how truly graceful are friends that Cheryl and I have in our life and have had for half a century. It starts with an email from Jan in early December proposing that we gather for dinner somewhere for our annual holiday gathering. Cheryl used to refer to this group as the defunct bridge group because although we used to play bridge at our gatherings, over time we simply gathered for a meal and socialization.

Jan suggested a few dates in January and suggested collecting at her house or a restaurant somewhere. I immediately voted for a restaurant somewhere for two reasons; it puts the eventual clean-up in someone else’s bailiwick, it gets Cheryl into a social situation were she does not believe she is a burden to anyone. (Grace on Cheryl’s part, she does not want to be a burden.) And besides, Gary and Jan go to restaurants that we might never pick just because of unfamiliarity. She picked the Purple Poulet in Newport Kentucky.

In a later email after Jan had confirmed the reservation, she wrote that we would be seated upstairs and asked if that would be a problem to anyone (grace – Jan did not single us out). I did not respond to her email because upstairs by itself is unimportant. It does tell me what equipment I might need. It also tells me that I need to call the restaurant to understand restroom facilities which I did not do. (no grace for me) Somehow with our narrow life activities, I never got around to calling the Purple Poulet and asking about ladies restrooms. I am not shy about that idea merely incompetent in this instance.

Yesterday was January 20th, the day that had been previously selected for our dinner gathering. Sherry called to ask if we would like to come to her house late in the afternoon for a drink and we would leave from her house to go to the restaurant which was a thirty minute drive through the center of town. (Grace on Sherry’s part for offering extra time to socialize and catch up.) Sherry has a sister who also has parkinson as a part of her life. Her sister is living in an institutionalized setting but Sherry spends a good amount of her time there. Cheryl is comfortable in conversation with Sherry and Sherry understands Cheryl’s difficulty with mobility and mental agility.

After I accepted Sherry’s invitation, we discussed restaurant steps, parking arrangements and restrooms facilities and, oh bye the way, if steps and restrooms were a problem, why did I not speak up? (She left out – you fool!) Sherry is too polite for that last part. She did start dialing the phone. Pretty soon it was all settled. We would meet at her house and ride to the restaurant in Gary’s GMC Acadia. (Grace to Gary and Sherry.) Sherry suggested that if the Ladies was downstairs which was my fear, we would just deal with it at arrival. (More grace to Sherry – her words – I’ll just tell Cheryl I have to go and we’ll go together when we get there.)

I managed to get Cheryl to Sherry’s house before everyone so that I could put our car deep into her driveway and out of the way. I was successful and the evening was all set. Denny and Katy arrived a few minutes after us. Gary and Jan arrived shortly thereafter. Sherry had drinks and snacks. For an hour or so we were surrounded by just friends not Parkinson. What a relief it was to us both.

It is not often that we acknowledge the kindness and graciousness in our life. There is no excuse for that. Many explanations but no excuse. This group of friends surrounded us with love and kindness and helpfulness and grace. For a few hours we, Cheryl and I, could just be. (Thank you, all.)

About the Purple Poulet; I linked their website to the first mention of them above. For me at least and I think Cheryl would agree it was a great dining experience. The restroom on the second floor was marked Ladies on the door near our table but was in fact a well appointed handicapped restroom. I have been in many. I know.

The steps turned twice and had handrails on both sides. If there is no elevator the next best thing is handrails on both side of the steps and a gentle slope to the stairway. Up is never a problem for Cheryl. Down, however, is a perceptual problem as well as a physical one. A short gentle run of steps is much less intimidating than a long or steep straight run. (grace to the stairway designer.) I have not gone down a set of steps with Cheryl forward for many years. (Sherry managed the walker while I was helping Cheryl manage the steps down – grace to Sherry.)

We both had their chicken. On their website they claim “The Best Fried Chicken by Southern Living” – It was the best fried chicken I have had in quite awhile.

This morning Cheryl is still sleeping. I am not but I should have skipped that second glass of Robt. Mondavi that I allowed myself because I was not driving to and from the restaurant. (no grace to me – grace to Gary for driving)

Carpe – the best fried chicken – Diem.

And surrounded by grace is another reason to stay connected.

Grace to you, Denny, Katy, Jan, Sherry and Gary for letting us simply be us.

Physical and Mental

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These two aspects of the Parkinson Dilemma are frustrating from a care partner viewpoint. They are the source of laments and weariness. The grind can be debilitating in many subtle and unsubtle ways.

Physical disability is only recognized by Cheryl when she is so physically tired that she cannot stand up. And even then she fights the thought that she physically cannot do something. That something might be as little as getting up out of the chair that I put her in because I was worried about her falling. There must be a balance somewhere. So I help anyway without trying to be a helicopter helper and hovering about her space.

Her mental ignorance of her ability to do something – rare is the occasion that she will ask for help – is simultaneously frustrating and heartwarming. She wants to do it. If she starts it and I complete it she feels like she did it. (Ugh!) Her memory does not allow her to remember that I completed whatever it was. So I help anyway without trying to be a helicopter helper and hovering about her space secure in the fact that she will not remember and assured that it is unimportant for me to correct her when she tells someone – see what I did. (except when she tells the doctor.) Tee Hee!

Seize the day and make something new if things are not going your way. Parkinson is a progressive dilemma and in Cheryl’s case there is an element of creeping apathy. The meah factor appears as she loses interest in doing things – exercise, writing birthday cards, visits with friends, laundry, making cookies, taking down the Christmas tree and decorations and other things. A little push every now and then never hurts. She will not remember that it was not her idea if you are subtle with your pushes.

Today we will visit a cousin of hers who is in the hospital. She is uninterested in exercise class. The hospital will be a long walk so we will switch activities today. And then as we left the little lunch place and headed toward the hospital my son called with a request to pick up our grandson after school. More driving but out in the world today. We will go to the hospital tomorrow.

This is an old picture but it is how I see this woman, the love of my life, the place I am home. I see that smile less and less but sometimes early in the morning it peeks out of her face.

Carpe Diem even if you cannot.