Cheryl is sleeping very late today. This she has done before and it concerns me that she will not sleep tonight. For now though, I will try to be in the moment and think of all the good things going on about us. I will push away the anxiety of the future events.
If she should wish to go to bed at a time later than me tonight, so be it.
Carpe this Diem.
Yesterday I looked at my notebook and realized I had written little in my journal for several days. I pondered the fact that things seem to smooth out for a bit. Usually it is a long enough bit that one can be lulled into the idea that things are changing. Things are changing for the better.
And then,
Stuff that lost your attention falls in the dumpster.
Last night after Cheryl’s previous night of reasonably good sleep stayed awake all night.
Today will be a long one. She will be tired all day. So will I.
Carpe Diem, dammit!
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.
Late in the evening when I am able to sit quietly and think about where we are with this parkinson thing I start to realize how it is affecting me. I ponder and think about how it is affecting her. Self -doubt pursues me everywhere.
As Cheryl’s confusion and memory lost develop into her dementia, I wonder if she is aware of her disability. I wonder if she knows about what is going on around her. I wonder is if she is scared. I know it scares me. She has always been self reliant. She often resists help. She makes me feel intrusive and yet I know her mind is awash in confusion. (Do I actually know that? Is that a misconception?)
Yesterday we had lunch with our daughter and talked about their family’s planned trip to Florida. We talked about the logistics of getting six differing schedules aligned for a family vacation. I thought it might be nice to go to there with them. I held Cheryl’s hand and asked her if she would like to do that. She was reluctant but interested in visiting with other family. (If we went along would we be a burden to Anna’s family and their time off vacationing together?)
My daughter pointed out to me that I keep track of Cheryl’s health like a hawk. She asked if I was keeping track of my own health. I think I am. But when I drift into deep discernment, meditation, prayer and thought, I am unsure. I think back to times when Cheryl and I went off together somewhere sometimes for a week or so, sometimes with friends we met up with, sometimes for a weekend alone with just us to entertain each other. Once Cheryl planned a special surprise for my birthday, all the kids and grandkids showed up – it was a well kept secret. These are all wonderful memories and it makes me long for those times. I makes me attracted to the idea of vacationing.
I think Anna was trying to tell me that a vacation would be good. I agree with that thought and in this part of my life and our marriage it would be useful if I was able to get away from the day to day care for Cheryl. Maybe it is time to give that away and return to simply being a husband.
A vacation from caring seems attractive.
As I write this and think about that aspect it lifts my heart. Worry and anxiety are easier to bear if there is occasional relief. I think I need to work on that sort of relief.
It is late in the morning now and she is gently snoring in the bedroom. This is one of those days when the day just seems to be slipping away. I begin to worry that she may not sleep tonight. I wonder how a professional caregiver would respond. I talked to her earlier when I put her meds in the bathroom for later. As I sat on the edge of the bed and comforted her a bit she fell asleep, so, I got up and left her to rest some more.
I am not surprised that she is sleeping late. Although she did not disturb me overnight I think she slept fitfully. I slept my normal get up to go to the bathroom every 2-3 hours. Occasionally she was whispering a list of people out loud as she thought through the planning of a family reunion style gathering that our sister-in-law has taken over but Cheryl cannot let go of in her mind. No amount of “Tari is handling that” relieves her from thinking about logistics. I often hope that Tari will spontaneously call and talk about it but I recognize that she probably will not. (I sent her a text message and requested her to call Cheryl. I will wait and see if she does.)
I mentioned – return to simply being a husband. I big part of that idea is not doing Cheryl’s things for her.
Many things wander through my thoughts as I checked on Cheryl again and got cleaned up, brushed my teeth (now the coffee tastes funny) and put on clothes for the day. I can hear my mother’s voice as she told me years ago, “I do some of my best sleeping in the morning.” When Mom was still alive if I visited her before noon, she might be just barely awake. Once or twice I made her breakfast and sat with her for awhile. I start seeing that happen with my wife. (I suppose I do not want that for us. I want us to be young and vibrant or, at least, think we are.)
I know that she wants to go to church services tonight. It is just before Easter. Easter is a big deal for Cheryl. She has been talking about coloring eggs for several weeks. I have extra eggs in case I cannot get out of doing that. It is getting late, so, as a husband I will get her up and listen to the complaint while I do that.
She is up now at 11 AM. I made her favorite breakfast of scrambled eggs and bacon with grape jelly toast. She told me that after she was done with breakfast she wanted to lie down again.
Carpe Diem.
Tonight at dinner for the first time she carried on a conversation with an apparition that she saw at the dinner table.
I invented a new recipe – Macaroni and cheese with chicken – she liked it. She even raved about it. Then she proceeded to discuss this casserole with a small brown haired girl that she saw at our kitchen table. We have a small kitchen with no external lighting so when I changed the ceiling fixtures a couple years ago I selected a couple of flat square LED fixtures that produce 5000 lumens each. It is bright. There was no child with us. There is very little shadow except directly under the small table we have there. I know the girl had brown hair because I asked. I asked Cheryl not the girl.
Cheryl asked her how she liked it. And then responded, “So, you are not going to answer?” after she had waited for a bit. To Cheryl this girl was very vivid. She did not look at me and recognize the astonishment on my face. For several minutes she quizzed the little girl about the food.
Eventually the little girl left us. I did not ask where.
Cheryl did not invite her for ice cream. We had that for dessert.
Cheryl did not sleep much last night. Her hallucinations are strong when that happens. It has been a very weird day. I tried to keep up with the strange conversation. Some stories are made up out of whole cloth. In “What Rose Forgot”, a novel by Nevada Barr, the writer describes that Rose’s memories fell into her head like rocks from a skip loader or similar analogy. In Cheryl’s case chunks of old career work experience, high school and her early computer system help with the grade school our children were in, sort of commingle in the narrative. A simple “ah huh” or “no kidding” keeps the narrative developing as we drive to somewhere.
In church tonight I noticed that she looked at the same page of the church bulletin all through mass. Somehow I could tell that the words were meaningless to her. It saddened me.
Carpe Diem.
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.)
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.
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.
When we were young Cheryl was a very good seamstress. She impressed me by making me and the boys a couple of shirts. I have no idea of the amount of work, effort and skill it takes to make other items of clothing but the year she made us custom fitting flannel shirts for Christmas I was super impressed. I still have a couple. The rest overtime I managed to wear out and fray most of them beyond repair. I can tell you that there is nothing, nothing better than a well tailored shirt. If you have ever had a shirt made for you, shirts off a rack are never the same again. Although I never owned one I can understand why men could spend thousands of dollars on a hand made suit. No wedgies in your armpits or elsewhere.
Today for whatever reason she has decided the pillows need to be trimmed differently. Here we are in Joann Fabrics. It is hard for me to understand what she is thinking. She has a hard time expressing her thoughts. It is overwhelming like a lot things these days. I really do not know how to help her.
The plan that I conjured was to get outside before the inclement weather turned up. Maybe a walk even though it is cold the wind is still. And afterwards we can have some lunch somewhere. It is Sunday and we have no plans.
But she found her stash of earrings when she was putting her clothes on. I was in full on waiting mode in my little office hide away hoping to not get frustrated and jump in to speed her up. This is January in Ohio and it has been weirdly warm for a couple weeks and that usually means the crap is coming. I became anxious and went back to check. She was messing around with her earring stash. I reminded her we were going to take a walk and have a little lunch somewhere. Oh yeah, that’s right said she. She came out of the bedroom with a bunch of her earrings in a box to take to the jeweler for repair that they did not need. I pointed out that it was Sunday and her favorite jeweler is closed today. She said maybe we could go sometime this week and I readily agreed.
Let’s go take a walk and get lunch. Okay she said.
That all went out the window as we got into the car and she told me about Joann Fabrics and pillows and fringe and trim and once seam binding. Happily I knew what all of those were but had no idea why she was telling me or what she had in mind. I had a lot of questions. I reluctantly drove toward Joann Fabrics instead of our favorite park to walk in. Switching from earrings to pillows left me dumfungled.
I drove to Joann Fabrics and later after we had absorbed enough of the ambiance, we went to a close by Cracker Barrel for salads and pillow talk. This was a soft talking day and Cracker Barrel was a bad pick for quiet conversation but they did have a nice wood fire going near where we were seated.
Later when we got home she showed me the green pillow that she had been talking about. I think she made this waiting for one of our kids to get big enough to be born. I do not remember which one but this pillow has been in our household for several decades.
Carpe the sewing project Diem.
There is lots of discussion about apathy and Parkinson. This morning I decided that Parkinson merely enabled Cheryl’s brain with a different sense of urgency or importance. Perhaps I needed to embrace that.
Last night as I coaxed her to bed her impostor syndrome was strong. We drove around for a few minutes and looked at the Christmas decorations while we “drove home”. It usually works and she thinks she is home. It did not work completely that night but she seemed to accept the fact that she was very tired and needed to rest. She went to bed with pajamas on the bottom and her normal daytime shirt on the top (just in case).
In the morning she slept late. When I woke her and got her going I pointed out that she had about two hours until her exercise class started, so she had to move it along unless she did not want to go. She refused to be speeded up and responded that I have been late before. She thinks exercise is important and wants to do it and enjoys it once she gets started. I know that it helps her too. But my sense of urgency and lateness is much different than hers.
I shifted my schedule to agree with her parkie time. My urgency evaporated along with my stress associated with getting her moving.
Carpe late Diem.
Adjunct_Wizard 