Yesterday was Long

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Yesterday was a good day. It was also a long day. Today she is resting in her chair. She is completely asleep.

Comfortable

She did not stir when I put a blanket over her. She did not stir when I held her hand. She peeked out once as I looked at her to see if she was dreaming. As I sat next to her for awhile she mumbled and was moving her eyes and throat. Talking in her dream. When we were still home it was quiet enough for me to hear what she might be saying. At Bridgeway Pointe she is talking even softer. Sometimes her lips move but no sound comes out. I have developed the ability to read lips but not if she mumbles under what breath she has left.

Yesterday she had several visitors. Felicia helped her eat breakfast yesterday. Felicia is a wonderful asset when she is on duty in the Harbor. She is always cheery and kind. She is able to roll with the conversation no matter how odd it may be.

What a change a day makes. She was more active yesterday. Today she is sleepy.

Yesterday

Today, she is frail and “out of it.” I asked her about breakfast and she told me that she had popcorn. A new unused answer is that one. I wanted to ask if she had anything on her popcorn but I kept the follow up question to myself. She is thinking about and talking about some work project while she picks at perceived loose threads from the blanket I put over her earlier. Today, she off in lalaland.

This behavior is no different than when she was home with me. She would be pretty good one day and off in the weeds for a day or two after. I relate this to sleep and how well she slept the night before. Yesterday it was good. Today it was not so good.

Carpe Diem

Grandkids and Influence

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I seems to me as I go through life I do not know where little things that influence my thinking and move me in a different direction will come from.

When she was a very small child and it seemed barely able to speak, my son and his family including our granddaughter, Regan came to visit one day. Grandpaw (me) was sitting on the front porch enjoying a cigar and probably a beer. Regan looked up at me with her beautiful 2 year old face and stated, “You know grampa, that is very unhealthy!” She was right of course so I quit smoking. Not right away it took a couple years and I still miss having a cigar now and then. My grandfather smoked cigars and I thought they smelled good. Cigar smoke reminds me of him, I suppose.

These days I have been moping around with no Christmas spirit or interest in the holidays for that matter. Cheryl was always the driving force behind our Christmas celebrations. The past couple years I was tasked with the shopping duties for the grandkids. Since I consider myself to be a lazy shopper but efficient, I texted the kiddos and asked them for ideas about what they thought they might want for Christmas. Often I did not hear back from Maxwell. This year without asking I heard from him first. He bumped me out of my morose humbug thoughts about Christmas, the holidays, gift giving and the rest of it.

Thanks, Max. Thanks for getting me out of my sadness. It is maybe not completely gone but I am moving in a different direction. And sure, if you want that, I will get it for you. Merry Christmas!

Carpe Diem.

Rye Bread & Cooking for Myself

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Yesterday my daughter suggested that I might like to come to a school concert in which her youngest daughter was playing in the band. I decided that I could sit home and mope around or I could go to watch my granddaughter play her trumpet. I decided on the school concert.

Making bread, for me, is great therapy. After the concert we returned to Anna’s house to hang out for a little while. Eric had gone to a convention for collection of baseball cards and other baseball memorabilia. He is as is his son a fan of baseball. Eric was showing me some of his purchases. He was beaming with delight. I teased him about being a super fan. He replied that you have to have something that will take your mind away from daily things that are less desirable to think about. Those are not his words exactly but the intent of the words. For me that activity that takes me away is bread and baking and by extension cooking.

Yesterday when I returned from visiting Cheryl. I made Rye bread.This recipe from King Arthur is a favorite. Rather than find where I stashed it last time I printed it again and followed it exactly which is something I rarely do.

There is relief in kneading dough. It is much like getting a great back massage. There is aroma therapy from the oven as it bakes. There is anticipation removing it from the oven. There is blindness for a bit as the oven releases the steam from baking onto my glasses.

I set the bread to cool on a rack and went back to visit Cheryl who was struggling with resting and going to bed at night after having spent the previous night and early morning in the ER from falling Saturday night. With the nurse’s help I got Cheryl into her bed.

I am leaving in a few minutes to find out how well she slept overnight. When I left her she was laying on her left side as she did with me at home. I got a good look at the bruise on her face from hitting her head when she fell.

Breathe in. Breath out. Move on. Bake bread if you are able. Love deeply always. Take notice those around you who need help. Ask them if you can help.

Carpe Diem.

Gamache (Louise Penny) and Croissants

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“Grief is love with no place to go.” says Armand to a young killer. Amazon Videos has made shows out of several of the stories written by some of my favorite authors.

Watching one of these videos the other night while waiting for my croissants to fluff up for the oven, this quote jumped out at me.

I think I am feeling that these days. Baking can be therapeutic. It is a hobby I have perused for many years. When My sister came to visit a couple weeks ago I made her pot roast one evening. It was great and I used the leftover mashed potatoes in a recipe I have for potato bread. That turned out great. Something I have not tried to do but I now have the time for is croissants and other pastry.

Yesterday I made some croissants. (Why is there two sses in croissant?) Here is a image of my first effort. I took them to Cheryl this morning but she was sleeping.

I also need more practice with the croissants. The other half of the croissant dough is resting in the freezer waiting for me to become inspired to try it again. I think maybe a hotter oven and proof the yeast a bit when I start the dough. The recipe I was following used wet (cake) yeast which I do not have. Perhaps further experimentation with technique. These two out of ten turned out okay – not bad for a first effort.

Holy cow they are rich. There is a whole pound of butter in this recipe.

Carpe Diem.

A New Attitude

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My brother-in-law’s wife recently had some surgery to her neck and over the past couple weeks we have exchanged text messages and visits. I ask how he is doing and how my sister-in-law is doing. Often I send him my latest picture of Cheryl at Bridgeway Pointe. Yesterday we had the following exchange.

  • Thanks for sharing. Tari still has lots of pain !!! I am tired and frustrated !!! How are You ?? — 2:36 PM
  • Not tired and frustrated. With little to do for Cheryl, I think lonely and broken hearted. Is Tari home or in rehab? How did that turn out? — 3 pm
  • Rehab did not go well. Tari is home now. Waiting to see about Home Health Care. — 4:29 pm
  • In home physical therapy sessions? — 4:30 pm
  • I guess. Not sure. –4:31 pm

I wrote lonely and brokenhearted to him. It was the first time I admitted that to anyone.

I get up in the morning and realize again that I have no particular schedule. Nothing that I have or want to accomplish this day. Three weeks ago my day was centered around Cheryl. I made very few specific plans for me that did not include her somehow. I focused on getting her going, up and out, onward and into the sunshine. In the Autumn months when it is still warm, just four weeks ago, I conjured little trips to the places where we used to walk. I did carryout from a little chicken place nearby sometimes and we had a picnic. Her in her rollie chair and me waving the bugs away. In September I had my picnic supplies in the trunk of the car so that we could do that spontaneously (Carpe Diem). My main goal for each day was simply to get her out into the sunshine somewhere.

A new attitude is my goal today and the rest of my days. I need to be less broken hearted. Lonesomeness I think I can deal with. That feeling will come and go. Cheryl is safe and well cared for at Bridgeway Pointe.

Carpe Diem. Cheryl is safe and well cared for at Bridgeway Pointe. (Repeat)

(Repeat)

Sleeping

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This morning when I came to visit she was sleeping. I kissed her on the forehead my usual ploy when she was still home with me. It did not work this morning. I left her to sleep. I went home and invented an early lunch.

It was a Thai dish from Hello Fresh. It was quick and easy to make. Pretty good to eat and I have leftovers since I renewed the smallest amount which is two meals for two people.

I am back at Bridgeway Pointe it is almost 2 PM and she is still sleeping or she awakened and was not interested in eating lunch so she is sleeping again. As I was walking out the nurse told me that she had not awakened and had not taken her meds at all so far that day. She is off her schedule and very tired.

Yesterday afternoon she had lots of visitors. That kind of activity would often make her remain awake late into the night. Sometimes she did not sleep well at home. She would be very tired the next day.

Zonked out

This is that day. The night shift nurse was able to get her to take her 6 PM dose. I went to visit at 6:30 PM. She was still very tired but she had eaten about 25% of dinner by the nurse’s estimation. She is drinking very little liquid.

Carpe Diem.

Little Treasures

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For the past couple weeks I have been sorting through and pitching out much of Cheryl’s punding piles that she had squandered away all over her office area. Many of these are simply random collections of old and very old birthday and Christmas cards.

Today I discovered a small envelop with a picture that had been taken of us at a formal dance in 1969. A treasure it is to be sure. But the letter makes reference to me as though I know the writer. She sent it to Cheryl at her address in St. Bernard.

I have no memory of this event. I have no memory of Ginny. Ginny did not pass along her last name. She only passed along her address on the envelope. Who is Ginny? To be continued…

This picture so old that I did not have a mustache or old wrinkled skin or gray hair. I was eighteen and so is Cheryl.

Carpe Diem.

If She Was Home

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If Cheryl was home with me she would be on my case to get the tree up and drag in the decorations. I do not have the enthusiasm for that activity that she has (had?) every year. I wondered this morning if I really wanted to do that at all. I am gaining an understanding for why many who have lost people that they love deeply may not have as much enthusiasm for the holidays.

I will eventually put the tree up when I think I will be able to do that without tears coming to my eyes.

And that brings up a new/old theme I have not written much about. For the past year I have listened to a lot of instrumental jazz music. New age, Smooth jazz that has no ties or memories from my youth. It is soothing and calming. I suppose I have become a fan of elevator background music.

All the other music that Cheryl and I listened to, her tastes are much different than mine, I like rock, she likes big band standards. I like classical and opera and ballet. She does not. Nevertheless, much of that other music awakens memories and nostalgia. It is hard to see through the watery tears, so, I do not play it as much as I used to play it for myself.

So far, I have my Christmas tree on this blog. These are last years pictures of the tree but the Christmas cactus has opened its blooms for this year. I moved it away from the window that it was shining its beauty out of. And I have reread last December’s blog posts. (deep sigh here.) things have not improved.

This is a selfie from yesterday’s visit.

Carpe Diem

Discoveries of Her View

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Cheryl is safe in her room a Bridgeway Pointe and I am cleaning up and sorting through papers in her office. She has collected vast piles of birthday cards, Christmas cards, notes, emails and other writings. She has put these together in random collections of paper that, at the time in her thinking, belonged together. (Punding is the term used by the Swiss.) This collection of items is her version of it.

One of the thoughts that comes through to me is a background fear of losing her memory and remembrances of her life. Some of her notes to herself are frantic in her attempt to categorize and save memories.

In the following email she is very succinct in her experience. I uncovered it while sorting. At the time she was taking amantadine. It was prescribed to help deal with the dyskinesias (rapid uncontrolled movements). After a failed trip with lifelong friends Cheryl wrote this letter to explain. It was, I think, the first time she felt the need to explain things to others. Here is her email to Cathy:

Wed, Sep 5, 2018, 10:04 PM to Catherine

Cathy and Paul,

I hope you’re having a good time on Mackinac Island. The tour in which Paul and I participated was very informative and fun. We learned a lot about the island, the people who live there all year round, the horses and how they are cared for, the history of the island, what happens during the winter when the horses are moved to Michigan’s Upper Peninsula, and much more. The Harbor View Inn is a very comfortable hotel, the food is always good and there is plenty of it. This is why we were so excited about sharing this trip with you.

I want to explain to you what happened to me last weekend. Every 3 months, I have an appointment with either my neurologist or with his nurse practitioner. Last Tuesday, August 28, my appointment was with the nurse practitioner. During the past 10 months or so I have been taking a new medication that was prescribed for me by the nurse and doctor. It is a drug that is supposed to keep me from swaying side-to-side. By summer I was taking this drug 3 times a day in addition to my prescriptions of Sinemet (I’ve been taking Sinemet for the past 8 years ever since I was diagnosed with Parkinson’s Disease).

About a month ago, I began to experience hallucinations. They weren’t too bothersome. They usually manifested themselves as vivid, sometimes bad dreams. By the time I met with the nurse practitioner (Maureen) last week, these hallucinations were becoming a little more than dreams. I asked if I should begin to wean myself from this new drug. Maureen agreed that I should begin to do that, and we worked out a schedule … and I began to work on eliminating that drug the next day. For a week, I was to stop taking the 7am dose of the drug… I didn’t notice any bad reactions… I still had the hallucinations but they hadn’t become any worse. They were just an annoyance.

On Saturday, Paul and I had a nice drive from home to Lansing, Michigan. The weather was nice. We stopped for lunch in a nice restaurant in Van Wert, Ohio. Then we drove on to Lansing, checking into our hotel around 5pm. We found a nice Bravo restaurant near the hotel, and we had a delicious Italian dinner. We watched TV at the hotel for a while. As I was organizing my things and getting ready for bed, I began seeing things that weren’t really there. There were bed pillows piled on the bed the way they usually are… but I saw what looked like a little child peeking out from under the pillows. I knew this was an illusion, but it persisted. Paul and I talked about it, and Paul said that we should just go to bed and everything would be ok. Based on what had been happening in previous weeks, I thought he was probably right. So we went to bed. Then what I called the “hallucinations from hell” began. The little child kept appearing in and around the bed with the pillows continuing to move. What appeared to be a man wearing a long piece of fabric (I would not call it a cape, but more like a blanket) was “flying” around the ceiling. We tried turning out the lights… nothing changed… things were still moving around. Paul did not see any of this, but he believed me. Finally his solution was for me to close my eyes, since this was all apparently in my head. I tried that for a while, then became frustrated with the whole situation. I got up and walked out of the room in my pajamas. As soon as I heard the door to the room close behind me, I realized that I did not have the room key. Fortunately, Paul heard me and went right to the door and let me back in. But what I had just done frightened both of us. After that I closed my eyes and tried to sleep, repeatedly telling myself that none of this was real, but I wasn’t very convincing. Somehow we made it through that night, but with very little sleep.

When Sunday morning finally arrived, we found a nice restaurant close by and had some breakfast. We talked about the trip and what had happened Saturday night, and we decided that we could not stay and go on the tour. We had never experienced anything like that before, but decided that we did not want to expose anyone else to our troubles. We felt it would be better for us to leave… that would ensure that you would have a good time.

We both think it was a good decision because I continued to have these horrible hallucinations for a couple more nights. Since it was a holiday weekend, I had a difficult time getting in touch with my neurologist’s office. I sent a couple of emails, asking for assistance. Of course, it was not an emergency. I was certain that it was my body’s reaction to withdrawing the medication. I had not thought I would have such a violent reaction. On the other hand, I did not want to increase the dosage again – that would just cause me more problems. So we toughed it out. Each day and night things went a little better. At home at night, the ceiling fan in our bedroom would appear to be falling toward me and the windows would appear to be moving toward our bed… mind you, they never came all the way to the bed, but it was still unnerving. There were people and children moving around in our bedroom and in the living room (this went on day and night). In our master bathroom, which is of course right off the bedroom, a couple of the hand towels were turned into a puppy… I was very surprised when I saw that!

Early yesterday the nurse practitioner contacted me, answering my email messages to her. I had asked if it would be a good idea for me to speed up my withdrawal from this drug, or if it would only cause me more problems. She answered that she did not think my reaction could be much worse. So I should stop taking it all together, and contact her with frequent updates about my condition.

This seems to be working. I’m not out of the woods yet, but I’m definitely feeling better. And the hallucinations are almost gone (I’m almost afraid to say that). But I think they are no longer a problem.

Again, I’m very sorry that Paul and I could not go on the tour with you, but I think now you understand why. We will go on another trip together again sometime soon.. maybe in the spring or summer.

I thank you for your prayers.

Take care.

Love,

Cheryl

This is the best and clearest description she has ever given me of her hallucinatory apparitions. She still sees people, things, children and bugs but less so and the visions are not terrifying to her as they were on this trip.

To me, it is a gift to understand what she has been going through in her mind. This is a love story that is not finished. I think that many of her visions are of people she knows or has known. Much like the theme of the TV show “Ghosts” she may be able to see beyond this world. (Why not?)

Carpe Diem.

Not Too Negative About It

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As we move down the road of Cheryl in a special place that can take care of her all day long every day, it gets easier for me to leave her. I am assured that she is getting the best care for her at this time.

The past few weeks when she was still home and it was all me, I started feeling anxious and upset with her lack of motivation to help with her own well being. I knew that her disease was getting in the way more. I was frustrated with her lack of cooperation with me with caring for her.

I was perhaps stepping on the last little bit of control that she had over events in our life. My whole waking day was consumed with her. I did not mind that but looking back, from her perspective, I was overwhelming, helicoptery and just plan annoying. There is a difference between accepting help from someone and having unwanted help thrust upon you. I was drifting into the thrusting arena.

This current situation is different. I can step back and let the aides do it – whatever it may be.

I am a husband again. Making sure has has all she needs to do for herself – whatever it may be.

Carpe (deep sigh) Diem.