Shaking off The “What Ifs”

Every once in awhile I get the what-if-I-did-this-instead-of-that in life blues (mood, meditation, discernment). They have been strong for the past couple weeks.

I suppose this winter has gotten me down more than previous. Cheryl seems more and more mentally frail as the PD/dementia progresses. I think that bothers me more than I want to admit to myself.

She has not seen the woman who lives in the corner of our bedroom for several weeks. Cheryl thinks her name is Jean but she is not sure of that.

The what-ifs instill a background anger. It is a sort of smoldering why-isn’t-there-a-fix mood. Perhaps it is time for me to find a shrink.

Therapy for me is to find a novel that captures and keeps my interest. I have never been one to stick with it if the story has wandered off into the weeds. Recently I read “A Man Called Ove” by Fredrik Bachman. It spoke to my heart and kept my interest. Ove was pretty down after his wife passed away but many of his neighbors kept inadvertently messing with his suicide plans and the story goes on from there.

Typically I read for an hour or two before going to bed in the evening. If Cheryl is awake when I come to bed I notice that she does not sleep well through the night. I let her sleep later and then feel guilty all day while I am getting her back onto her med schedule. And it creates anxious stress in me as I keep track of her medications more closely until she is caught up.

The medications only seem to work sorta.

Parkinson does seem to be endless and that starts to get me thinking about the What-Ifs again. There are no take-backs in this life but wow does PD suck.

I am hoping that she will get her earrings in in time for us to go for a walk in the sunshine today. I would help but that merely causes a spat. So far it is not looking good.

Carpe Diem. (And then she appears.)

And Tonight We had to Go Home

Sometimes I can convince her that we have come home and we have not left the house.

On other days and nights that is impossible. No night is the same. On this night we had to go home.

I gently got her in the car. I was proud of the fact that I did not get upset. As we drove around the block about 2 mile per hour below the speed limit – the ride is longer that way – I kept up some chatter about various things. Some stories about upcoming events on our calendar.

As we drove in front of our regular Pizza Tuesday spot, she told me about being there last Friday with Paul.

As I turned the corner to climb the hill, I asked her if she knew the way from here. I got no response. As we got to the top of the hill and she began to recognize some land marks she said, “I live on the other side of all that.” (She was headed home in her mind.)

As we got close to our driveway entrance I said, “It’s good to be home. Isn’t it?” she responded, “Yes, it is. I’m tired.”

Dementia, Capgras and Parkinson were in full cooperation this night.

I fear that this little drive around the block reset ploy will not always work. That makes me anxious.

Maybe God will provide me with another plan.

Carpe Diem.

We Are Called

So… I have had this ear worm for a couple of days now… The hymn was sung in church last Sunday.

Refrain
We are called, we are chosen.
We are Christ for one another.
We are promised to tomorrow,
while we are for him today.
We are sign, we are wonder.
We are sower, we are seed.
We are harvest, we are hunger.
We are question, we are creed.

there’s more …

© OCP 1978,1979.

Whenever this happens I will take the time to analyze why a song or hymn has had this effect on my head.

In this case I have meditated upon my role in Cheryl’s care for some time. Every care partner does or they walk away. I have chosen to stay by her side through all that comes.

… we are called to be Christ for one another … and to walk humbly with God. (a different hymn)

To search for the meaning of our life is in all of us. Being an active care partner is a humbling experience. It is also a grief stricken experience. On many days it sucks.

I’m still thinking about all of it.

Carpe Diem.

The Housekeeper

This novel by Joy Fielding is a fictional story with Parkinson’s disease as part of the story line. I tripped over this novel in the library the other day and brought it home. It was not until I began reading it that I picked up the Parkinson’s piece of the story line.

It is also a discussion of alternative truths, lies and deceit.

It is about thoroughly checking references when hiring help in your home.

Dysfunctional families always make a good story. Most times they are the story. There is plenty of that in this novel.

Pleasing our parents is something that we always try to do. Even when the parent is gone many of us still try. Even if the parent is old and cantankerous.

Bad parenting, good parenting, mutual respect and aid is all part of the complicated state of marriage.

Kids being kids add comic relief.

Writer’s ego and husband philanderers creep in and out of the story line.

With an amusing and unexpected plot twist near the end, it changed how I thought about the characters.

And a satisfying hallmark style ending always makes for a good completion chapter.

Read books. The day goes faster. Especially days that only have decaf.

Last evening most of Cheryl’s sisters and all of her brothers came to our house for a sibs dinner. Ostensibly a celebration of the youngest’s birthday. Ken goes to Florida on his birthday week. He looked tan. I made spaghetti and meatballs. Cheryl likes that. I made paine ordinaire (simple bread) because I like that. Tari brought salad. We had three desserts. We sang happy birthday.

Later I found Cheryl in the back closet wondering where she was. She seemed in wonder that all her clothes had somehow been moved to the back closet by our bedroom. She selected her blue zip-up jacket because she was cold. I was hot. Birthday boy was wearing shorts. The thermometer read 74.

She was very excited last night. She slept poorly overnight. So did I so today I am reading.

It is February in Ohio.

Carpe Diem.

This Morning

She was weepy as she toileted this morning. I asked her what she was thinking about. Could she tell me why she was so sad?

She had been worried that she would not wake up. I did not know what to say to her. I think the tears were relief that she had another day. (I have not dreamt of my own death.)

The tears were still coming during breakfast. Her sense of impending demise was strong. I hugged her for a bit while getting her juice and coffee cake. She seemed to relax and she focused on the newspaper. I went to watch the TV news and work the Quordle.

Later as she was getting dressed, she thanked me for taking care of her last night. I had to turn away and focus on my chores for Friday. I told she was welcome before I started to tear up.

Somewhere in the recesses of her cognitive brain she is pondering the future. It seems as though she does not see very far into the future. She has a much better vision of the past and sometimes the past is current to her.

And it rises to the surface upon occasion.

I think that the hardest part of this damnable disease is the rollercoaster of feelings, emotions and moods. I have written this before but it seems like one minute after a sane normal conversation exchange the train will go off the rails.

Today is developing into one of those. It is hard to keep the caravan moving in the same direction.

Moments ago when I asked if she wanted her bedtime pills, she responded , what for? It’s daytime.

Carpe Diem

Monday, Bloody Monday

I hate Mondays. Mom told me this late in her life. I asked her why? I pointed out that she had not worked for decades. I don’t like Monday was her response.

Parkies can be grumpy on Monday too.  Cheryl is not typically. I guess I am a bit because I did not sleep as well as I wanted.  My bladder got me up at 4am and itchy legs kept me up for awhile.

I finished the wordle and went back to bed about 5am. The sun was up when I awoke again at 8. Cheryl was awake also so I made coffee and went retrieve the garbage can and the newspapers.

Except for the fact that I am retired and Cheryl has Parkinson’s disease and does not move well. A regular day. Ho Hum

Carpe Monday Diem

A Strange Day

In our current life of ups and downs this day is a truly strange one, at least, not one that I would have expected based on how Cheryl slept last night. She seemed to be awake most of the time. She was a little fidgety when she went to bed at 11 pm.

I sat up for a bit to read and when I came to bed a few minutes later she was, of course, awake although she did not talk to me. She fidgeted and eventually I fell asleep. I cannot explain how I know she was awake most of the night but she was awake every time I chased my bladder to the bathroom overnight.

Usually if she sleeps poorly she is physically unable to move easily the next day. But that is not true today. She is moving much like her 60 year old self which is better that her yesterday self. What happened?

It is a strange day. She got herself up with no help from me. This is very unusual of late.

Maybe it is my imagination. I did not sleep well and I think I am grumpy for it. The sun is shining brightly in Ohio. Humbug.

The image is an old Calvin and Hobbs comic if you viewed this on a computer. Why is life not fair in our favor? There is no answer to that question.

Naturally the other Cheryl has posted about sleep on her blog.

And Carpe Diem.

Update: She has been hallucinating people on and off today as well as telling me about strange happenings in our condo parking lot (construction) and how busy the restroom at Perkin’s was with some guy changing his baby. (I hope she sleeps better tonight.)

A New Idea – Restaurant(ing)

A week and a half ago we stopped at an old Dixie Highway landmark called the Greyhound Tavern. We had passed it several times going to and fro when visiting her cousin Gerry in hospice. On our way home from our last visit with Gerry we stopped there at about prime gray hair eating time.

The reason was made up but we had a good time. Sherri had asked in conversation whether I thought the fried chicken at Greyhound Tavern was as good or better than the Purple Poulet where we had eaten a few weeks before. Well, everyone has their own personal likes and dislikes about comfort food. Cheryl’s mother made fried chicken and we ate it cold on a picnic in June in 1969. It was delightful. My aunt Johanna made fried chicken along with a lot of other stuff for Sunday dinner at her farm in Indiana. It was delightful. Long ago we had the KFC’s original recipe at the first place that Colonel Harland David Sanders opened in Corbin Kentucky. It has a little museum attached. It was delightful. (I have always liked original recipe.) But while I thought that the fried chicken at Greyhound was good, the chicken at the Purple Poulet was excellent.

While we were awaiting the arrival of our meal, we split the chicken since neither of us can eat half a chicken anymore, Cheryl said that we could visit various restaurants in Cincinnati and the surrounding area and eat lunch there. This is an excellent idea I replied. Let’s do it.

Today we did. Today’s choice was the Sweet Heart Cafe in Colerain township. We have been there before but it has been a year or so. There are actually about three stores operating out of this store front – a bakery, a cafe/diner, a clothing shop. It has a very unique ambiance and they make their own jams and preserves.

We brought home pie for dessert tonight or maybe the whole dinner.

A good list to start with.

Carpe – the diner – Diem.

It is February

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.

Hospice

A Hospice center is a quiet, peaceful and sad place.

The old meaning of a place of rest for travelers is an appropriate one. It is a place of rest between here and the after.

Cheryl and I have been visiting Fr. Gerry Witzemann.  He is dying. Gerry married us years ago or as Cheryl likes to say, officiated at our wedding. Her comment is more correct of course. Cheryl’s cousin started out as a Franciscan priest. When his mother became ill and elderly her wanted to do more for her. His order wanted him to go to the southwest to minister. He left the Franciscans to remain in the area and help his mother as best he could.

This is our fourth visit. Gerry is not ready. On our first visit he indicated that he was ready. Are any of us ready for afterward? Sitting with someone that you know will not recover turns one to introspection.

Soon and very soon…

Today his niece Sherri is here. Cheryl can talk to her cousin about things that she knows little about.  That part of her family lived close by when she was a child.  But as people grow older they spread out. Sherri’s mother Verna, Gerry’s sister passed away a couple weeks ago. Sherri took care of her mother for the last three years of her life, at home, with dementia. What a grace filled presence. She once got up to talk to her uncle, “It’s okay Uncle Gerry. Mom is waiting for you. So is grandma and grandpa.”

Sheri was in the army. She was a nurse and a nursing supervisor. She is a very pleasant conversationalist. Her husband passed away in 1993. They have no children. As a reservist she was called up and spent a year in Iraq in charge of the nursing staff in the hospital set up by the army. Gerry was the Witzemann family archivist. It was his hobby for years. He has lots of notes about the family history. Sherri now has his information.

We exchanged phone numbers.

Gerry won’t be with us much longer and that is sad. Many folks who come to visit him and he has many, are uncomfortable. That is understandable – and sad. Somehow it was neither sad nor uncomfortable with Sherri there. We were just there with Gerry.

Soon Gerry will be gone from us.That is why he is with hospice.

(Fr. Gerry Witzemann passed out of this existence at 5:30 am February 5, 2023. A Sunday the Lord’s day. How appropriate. May he rest in peace forever.)

Carpe Diem