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Dear Cheryl

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Today I came to visit and you are sleeping again. So, I think that I will sit with you for a bit in your room and write you this letter.

Yesterday was a busy day for you. The Hospice aide came to give you a bath, I came after lunch and we went outside to the garden to sit in the sun, Allison came to do your hair ( it looks good) and Mike came late afternoon to check your vitals and see how you are doing. You were busy with lots of stuff.

Today it looks like you’re worn out.

When I talked to you, you did not respond. I kissed you on the cheek and you did not stir. So, my conclusion is that you are very tired and I will not disturb you.

Robert Thomas called the other day. He is going to come and visit in early May. Our plan (his mostly) is to ride bikes a lot and see where we get to. I have ridden my bike a couple of times this week when the weather was good. Once around the loop in Winton to see if I could deal with the helmet and the dog collar around my neck. It seems okay but the neck collar pushes the helmet up in back so that it is hard to see forward. It is easy to see my front tire. Yesterday I went down to Lunken to see how high the river was. It has covered the bike path under the Beechmont bridge. The fence is covered up so it must be six or seven feet deep under the bridge.

This neck stretcher really restricts movement of my head. In the short periods when it is off and I gently turn my head, it hurts to turn it very far to the side. I think that when I get it off in a couple of weeks I will be glad to restart my chair yoga and balance exercises. I am looking forward to that.

Billie and Fran and I are going to meet for lunch next week. You might remember them from when I worked in Sharonville. Anyway we are Facebook friends and thought it would be good to have lunch together one day. Billie has had some recent health issues and so has her husband. I am interested to know if Fran is still doing her flea market thing and what else she’s been up to in her life.

I have not planned any activity today. I was watching the weather all week and today was supposed to be raining, overcast  and cool. My thought was to sit with you, so I am doing that. You however are sound asleep. They must have gotten you cleaned up and dressed this morning. Did you tell Jennifer that you were not interested in getting up today when she asked you? (My guess is yes. )

I have been here for more than an hour and it appears that you are not going to awaken. I will let you rest and come back later.

As I left the Harbor I talked to Tonya, the nurse supervisor. She told me that you did not take your medication today and that you were breathing oddly earlier and she had called Mike the hospice nurse. He will come in a little bit to check you.

I love you and missed your company today. I had hoped to sit and hold hands like we did yesterday. The sun is supposed to be back tomorrow, although, it will be a bit cooler. We can still go outside tomorrow. I will put your brown jacket on you to go into the garden.

Paul

Dear Cheryl

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Dear Cheryl,

It has been exactly four weeks since I have written to you. The days blend together, so, ever since you have moved to Bridgeway Pointe, I have kept a journal of how you appear to me, your moods, your alertness, my thoughts and other things. As I look through this log of information about the past few weeks I noted many things that have happened during the last four weeks.

A couple days after I wrote the last letter, I was enjoying the sunset with some of our neighbors and was a little more inebriated than I thought at the time and fell while getting up from my chair. I admit to myself that I was feeling a little sad when I came home from visiting you that day. I do not know why. You appeared frail and I noted that I cried when I first saw you that day. I suppose that was still with me when I returned home to make myself dinner. For whatever reason I give myself, I found the bottle of vodka that I had in the freezer and added a little sprite to it in a glass. ( I was out of tonic. ) It was sweeter than I like but I imagined watching the sun go down while I was waiting for the casserole I had put together cook in the oven. Two of our neighbors showed up to join me and all was well until I fell on my face. I must have knocked myself out because I have little memory of the incident until I was looking at a fireman who strongly suggested that I go to the hospital. I had no interest in doing that but I gave in and went anyway. Now I have this collar to wear that you see me in when I come to visit. And now I know what an annoying experience that must have been for you when you were taken to the hospital over the past several years. Although I was not hallucinating at night, sleeping was like trying to get forty winks in a busy elevator.

I went to the hospital on Thursday evening. I came back home on Sunday afternoon. Sleeping on Sunday night was wonderful. I made it to six hours before my bladder took me to the bathroom. All of our kids came to visit with me on Friday. Scott gave me a ride home on Sunday. Anna and David and Scott visited you and me that whole weekend. We have wonderful children.

On Monday I was a little stiff and wearing an old set of eyeglasses. I could see okay but not comfortable driving with my new neck apparel. Your sister, Nancy, offered to drive me over to Bridgeway Pointe so that is what happened on Monday, bloody Monday. About every other day of that week you were sleeping when I came and Nancy gave me a ride to visit another day and we rode you around the building that day. You were more alert and Nancy seemed pleased to do it.

On Monday March 25th I went to see Lauren, our PCP folk. Her office called me the Monday after I got home from the hospital to check on me and ask if I wanted to come in for a visit. I admitted to her that I felt a little sad that day and asked her if there was a grief counselor or psychologist I could talk to about me. I am not sure what I want to get out of such an encounter. Sometimes when I leave you to come home I feel an overwhelming sadness. I did that Thursday a few weeks ago. I thought to have several drinks. That was a normal, I suppose, and stupid reaction. I will have to be aware of that when it creeps up on me. Perhaps I should just call Joyce or your sister Nancy and talk about what I am feeling. I am unsure about how talking to a complete stranger or a group of complete strangers will help. Joyce asked me if it affected my manliness when I felt sad and teary-eyed with others around. I replied that it did not bother me so much but I wished that it would not happen. She pointed out to me that you are a very important person in my life and although you have not passed on from this Earth, in many ways you have passed on from me and that is always going to be hard on me. (I think it is not so hard on you because you seem off somewhere else most days when I come to visit.)

Anna had a party for Virginia’s Birthday. She is sweet sixteen now. Do you remember what a cute two year old she was? I spent David’s birthday in the hospital. I wished him a happy birthday when he came to visit me.

Britney called me on the phone one evening as I was driving home from kissing you good night. She said you had slid out of your wheelchair as they were getting you into bed for the evening. Are you having a harder time sitting up in that chair? Or were you in a hurry to get into bed? I remember when you were home with me sometimes you went to bed early and were in a hurry to get there.

On Easter Sunday when I came to visit, You asked me where I was going today. I told you that I was going to Anna’s house for the afternoon for a cookout. I noted this in my journal because of two things; your voice was very plain and understandable when you asked, it seemed to me to be a very lucid thought. After you asked me that, you said; good, I am going to stay here today. (I noted a small patch of lucidity.)

I took the seat cushion from your wheelchair home to clean it on April Fools Day. It needed it. I traded the other cushion from the kitchen chairs with you. The last time I washed it I had to chase the washer around the utility room. It was out of balance after the cushion had sucked up ten pounds of water from the wash cycle. This time I thought that I would just soak it in the utility sink. I put about six inches of hot water in it and added a little bleach to the water. (It looked like you may have leaked a little onto it one day.) After soaking overnight it had these vivid purplish stains on it. There must be some metal in whatever it is stuffed with. Bleach reacts with a couple different metals to produce a purplish stain. Its clean but it looks bad.

This situation we are in, as I watch you become more and more frail. And as I watch you lose more and more weight. This whole process makes me worry about losing the picture in my head of your lovely smile. I have made a new project for myself of making a collage of you and your smile. So far it is pretty good, I think. I printed it out for you here so you can see for yourself and judge. I do not have a copy of every picture. There are many. On the next page you can see what it looks like so far. I am still searching for one or two other pictures that I know I have but with the cleanup I have been doing around our house I have placed them in a safe place where they will not be lost. I have not found that place back yet.

I have learned many things over the past four weeks. Do not drink vodka if I am sad. Beer will make me get up for a trip to the toilet more often and the alcohol is more dilute.

Avoid overnight stays in a hospital.

I am not interested in puzzles. I tried to become interested after one of the trips to Bridgeway Pointe with your sister. (new hobby and all that…) I have had it partially assembled on the dining room table for about two and a half weeks. I am told that real puzzle workers do not leave them dissembled out for that long. All I can say is that I am not that interested.

I am interested in writing more. I have a loose collection of stories that I call a hitchhiker’s guide to parkinson. That is much like a puzzle to me. Fitting it together as a story and memoir of our last fifteen years or so is a goal. Whether I achieve it or not is up to me.

A total eclipse of the sun is a magnificent sight. I shall remember it forever.

My journal is becoming more than a log of you and how you are. Two days ago I felt that my sourdough starter was far enough along to use it to make a loaf. Over that day I came to visit with you three times while I was waiting for it to proof and develop. At the end of the day after dinner and I got the loaf out of the oven, I came back over to Bridgeway Pointe to visit you. This is what I wrote that night when I returned home: I use this book to write about Cheryl and how she is doing but tonight I was disappointed that she was already in bed. I suppose I could sit with her in the darkened room but I sat on the edge of the bed for a short time and held her hand. I kissed her good night and went home disappointed. — I wanted to sit with her like we used to do.

(In the evening, some nights I really miss just sitting with you – maybe we watch TV, maybe we just talk, maybe you beat me at Scrabble, maybe I read a book and you are sewing on some project.)

Cheryl that is all I have for now. I have tried to catch you up on all the doings that happened since last I wrote. Know always that I love you.

Paul

Carpe Diem

Pictures of Her Smile

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Lately I have struggled with the idea that this terrible disease of Parkinson has robbed Cheryl of her smile. To keep that smile present in my mind I have been collecting pictures, old and new, and assembling a collage of smiles.

I am not finished but this is it so far. I will revisit this posting every now and then as I find pictures back that I want to add.

Carpe Diem.

Lately I’ve Been Thinking

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I did a stupid thing (my word) and injured my neck. After a couple MRIs and a couple of days in hospital and two neurosurgeons consulting with each other the eventual result is wear this necklace (dog collar) for eight weeks and all will be well.

I have found that I am getting used to it. I can remove it to shave and as long as I keep that up, it is not terribly uncomfortable. But that is not what I intended to write about here.

Few people are satisfied with “I fell” as an explanation for my wearing this device. Most will not hesitate to get more details. Those are all people who know me and know Cheryl’s situation. I must have a group of good friends who are concerned with our well being. I am grateful for that concern. It is also something for which I have not learned to be thankful and say thanks often for the kindness and help. I have an explanation of course, my head is generally somewhere else these days but that does not excuse me from being thankful for the extra hands and help.

So, thanks to everyone in my life who has helped me the past few days. You know who you are. Thanks to others who did not need a full explanation of how I fell on my face. It is an embarrassment to me no matter how many times others tell me that things happen. It morphed into some of us old guys telling stories about how we screwed up and luckily did not kill ourselves in the process. – You think that was dumb, wait until you hear this one I did. – A good discussion was had by all.

Today Cheryl was very active and animated. A friend from church and my cousin-in-law came to visit her and then while we were chatting the music guy showed up to get the residents to sing along and drum with the music. It lifted my spirits for a bit.

Carpe Diem.

Cheryl is Alert

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Music is playing today. It  is Thursday. She is good. And that was earlier in the day. Sometimes when you least expect it. Life throws you a ringer. … two days later.

Today’s ringer is I fell on my face a couple of days ago and now I’m in the hospital. So I can’t really pay much attention to Cheryl’s health and well-being at this point in time. I have to keep track of my own health and well-being. 

It’s not quite the same thing as being on vacation where I’m always thinking about how she’s doing what she’s doing who’s visiting those sorts of things. 

While here I know who’s visiting because everybody that goes over to see her sends me a little text message. And also points out the fact that I need to take care of myself and get healed up. 

So here’s what happened. I was having a few drinks out on the front of the building. Me and a couple of my neighbors were watching the Sun come down. Drinking beer and vodka. We were enjoying the sunshine and they had distracted me from worrying about Cheryl. I probably drank too much vodka but that’s okay. I had been over to see Cheryl and Cheryl was actually doing pretty good that day.

Anyway when I got up, I guess I stumbled and fell on my face. So now I have a fracture in my neck that they want to fix. I don’t feel any pain. I don’t feel any tingling. I don’t feel any nerve damage and the MRI doesn’t show any of that.  But Here I am sitting here in the hospital bed waiting for the surgical guys to find an operating room to fix me 

This is my happy face.

And then I suppose I’ll have this neck brace on my neck for a few weeks I imagine. 

So It’s time to relax. I must not worried about Cheryl worry about me. Cheryl’s in good hands Somebody’s over there with her all the time. And somebody like her sister or like her daughter or like her sons or friends. They all go visit her at different times. So she has plenty. Plenty of visitors and help So when you got lemons you have to make lemonade. 

This is a forced time out for me.

I am trying to not resist.

Carpe Diem.

Dear Cheryl

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Dear Cheryl,

You know of course that you are the love of my life, the place where I am home.  I do not say this to you often enough. I am writing it here so that you can read it often if you want.

This morning when I came to you to be home and see how you were doing, Jennifer told me that you had no interest in getting up so after the bathroom she helped you back to bed. This is where you were when I came. I kissed you and you ignored me.  You were deeply sleeping. I sat and watched you breathe for a few minutes, hoping you would stir. You did not, so, I kissed you again and told you that I would return later.

Here I am again. It is almost three pm and you are still lights out. I talked to Mike in the hallway outside of the Harbor. He told me that you were still sleeping and he had taken your vital signs. He made a little joke about this being one of those days when you are not participating. He is such a gentle nurse.

As I was ending my conversation with him, I met Rosie Doud. You know, Bill Doud’s sister? She is staying at Bridgeway Pointe.

Even though Mike said you were sleeping, I came to watch you breathe. Maybe you will awaken later when Linda and Regan come. Maybe not. Obviously you need to sleep today. I am glad you did not need to doze yesterday afternoon. We held hands and you told me about something but I did not understand all of your words.

Sleep some more and I will check on you after supper.

I love you.

Paul

Sunday Awake Day

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My cheesy grin

Today is Sunday. When I was here earlier Cheryl was dozing. She had taken her meds earlier and ate a little breakfast. Often when I come over on Sunday afternoon she is alert and  active and talking to someone else who is invisible to me. This day is no exception.

She let me sit with her and hold her hands for a few minutes. Now she has rediscovered a knitted fidget that has beads, a pocket, a loop and buttons. Cheryl discovered this shortly after she moved to Bridgeway Pointe and it seems to keep her interest for long periods. She is struggling with the loop to hook it over the bead and button.

The loop is the most fascinating thing. She loves to loop it around her fingers.

I take every opportunity to hold her hand.

Carpe hand holding Diem.

Dear Cheryl,

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I am thinking about you this morning as I do every morning.

Earlier I listened to and old U2 song – With or Without You – And I realized that these words from this song have a very different meaning to me than the original lyricist meant. I cannot live with you physically. It is simply more than I can handle day to day. Between your Parkinson and the associated memory and dementia, it is overwhelming for me to take care for you by myself. This breaks my heart.

And yet, in my heart I cannot live without you constantly in my thoughts. Often in the morning when I hear some song or part of a song I think of a time when we were younger and this song was on the radio or the group was very popular and what we were doing in our lives. Some of those memories are vague with little flashes of pictures in my mind. The dream ends and I am in our home, alone, without you. I become sad again.

Songs and particular lines from songs often evoke an emotional (teary) response from my heart. Loving you and living without you is a very unsatisfactory feeling.

With you or without you – I miss you,

Paul

Dear Cheryl,

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Dear Cheryl,

You were sleeping today when I came to visit. Sleeping so very soundly that I did not want to disturb you. I kissed you on the cheek like I usually do to tease you awake. I know that you do not like me to kiss you on the ear. You did not even stir, not one bit.

I sat in the rocker for a little bit to watch you breathe.

After a few more minutes I left you to rest and came home. As I was driving home I thought to write this letter to you. I have been listening to a collection of songs from Spotify entitled – Songs to Sing in the Shower. Pulling into the garage LeAnn Rimes started singing, “You Can’t Fight the Moonlight”. This line – “There’s no escaping love; Once the gentle breeze; Weaves its spell upon your heart” – stuck with me.

I suddenly realized how much I missed seeing you today. The past couple days you were alert and we were able to sit and hold hands quietly. Yesterday you put your head on my shoulder and we sat that way for awhile. I enjoyed that quiet time with you.

I think that touching you is more important to me than I admit to myself.

Sleep well and rest. I will see you tomorrow.

I love you,

Paul

When I Visit Cheryl

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When I visit Cheryl which happens everyday I notice things. Some of these are after I return home. I am not so concerned about where I put my shoes after I take them off for example. When Cheryl was here with me I was constantly concerned with trip hazards lying about in our condo. Occasionally we would argue about things like doormats and trow rugs, all of which I had removed from the condo over time as her ability to move and walk and balance became worse.

I notice how the staff interacts with the residents. They are generally kind and attentive. They are, I imagine, acutely aware of their own staffing levels.

I notice how the residents interact with the staff. Helen, another resident in the Harbor with Cheryl, is awake and alert and talkative today. Last night the Super Bowl went into overtime. It was not won until just before 11 PM, so, I imagine that several maybe most of the staff sat up and watched it until the end like I did. The difference being that I did not have to get up at 5 AM to make the 6:30 AM staff meeting. Some of the staff have that combination of Monday morning sleepy grumpy going on. I get that. I used to be a service/engineering manager. Mondays were often unnecessarily busy while we picked up all the stuff that fell on the floor over the weekend.

I notice the level of staffing. It is less so on the weekends as one might expect it to be. If there is one single area that I could suggest could be improved it would be weekend staffing. The world in general revolves around folks not working weekends without some sort of extra incentive which is often money. Rewarding altruism and empathetic caring for folks who cannot care for themselves is hard work for the administration and work life balance is strained when the work and life are similar. Conjuring useful rewards for weekend work like appealing to their sense of altruism is probably tough.

I notice the changes when the shift ends. The next group comes in. It is generally a smooth transition.

I hear the little discussions between the staff – what’s important to them.

I also find that if I am not the full time care partner I was when Cheryl was home with me I am able to have opinions about how others do the same task. I wonder about how I might do it differently. I keep those thoughts to myself. Juggling the needs of a dozen people at different stages of Alzheimer’s, Lewy body, Parkinson’s and other forms of dementia is more complicated than I had to deal with at home. My personal dilemma was remaining kind and thoughtful with lack of sleep but a lot of love. Love is sometimes hard to find if you are Mr. Lack-of-sleep-cranky-pants.

All of this wandered though my thoughts today as I visited with Cheryl and sat with her while she dozed in her chair. She was slightly awake but sitting with her eyes closed. She was uninterested in having company. I just held her hand for a bit and it seemed like she relaxed and fell into a nap. I miss her daily company.

Carpe Diem. ( Carpe Somnum when it is time.)