Sleep Therapy

Dear Cheryl

Posted by

0

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

Dear Cheryl,

Posted by

1

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

Dance Competition

Posted by

0

A small gymnasium with loud music and time to wait, the pre-dance show is boring. I am glad that I have a book. I am writing facetious nonsense.There is no pre-dance show. It is loud music, unnecessarily so, in a small gymnasium.

The girls on all the teams are enthusiastic and passionate about their routines. As a biased grandfather watching these kids perform I think my granddaughter did the best but two concepts interfere with that assessment, familial relationship and ignorance of the judgment criteria. A rubric would be helpful with the latter. There is no help for the former.

I did enjoy the afternoon with my daughter’s family. Earlier in the day Cheryl had been sleeping soundly in her recliner. I sat with her for a time. She did stir when I talked to her. She did not stir when I kissed her cheek. She did not stir when pulled the blanket from beneath her head and covered her with it. She did not stir when I kissed her good-bye and left to have some lunch before the ride to the competition.

Jazz Dance

Cheryl was safe and taken care of. I went to watch the dancers without concerns for her wellbeing. I thought about how she would have liked to have been there. I made a video to show her later.

Cheer

Carpet Diem

Yesterday was Long

Posted by

0

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

Sleeping

Posted by

0

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.

At Peace

Posted by

4

One evening this week our three children came over to discuss what is best for their mom. It is a hard discussion. Cheryl was part of it. As we came to understand and accept the few decisions about Cheryl’s future care, I sensed a peace, a calmness descend upon my soul. Cheryl needs more help than I can give her consistently. I do not function well with little sleep.

That meeting took place a couple days ago. It may be my imagination but I sense that Cheryl is slipping away. She slept unwell overnight which in and of itself is not unusual but today she is sleeping the day away.

Carpe the next Diem. This one appears to be lost.

Maybe my night is lost also.

Writing that last line has put me in mind of controlling the things I can and letting go of trying to control the things that I cannot.

Carpe tomorrow.

A Quiet Monday

Posted by

0

My mother always hated Monday. Even after she was long retired from her working career she would refer to Monday as Bloody Monday. I never understood that attitude.

This Monday morning Cheryl is sleeping in the other room. Quiet after she had been up concerned about strange thoughts just before midnight. She was worried about when Jan and Nancy were going to pick her up. Jan has passed away. Her thoughts are often very jumbled up these days.

Yesterday evening she was very anxious about our nephew Mark and his girl friend Jill. This was brought on by us driving past the FedEx terminal near where we live and Cheryl asking about Max working at FedEx. I responded with the fact that Mark, our nephew, worked for FedEx. I asked if she meant him. She said yes, I think so. And this launched her into several hours of on and off conversation about him and his girlfriend Jill (I quit correcting her ideas) and birthdays and presents and on and on.

After awhile it is very hard to deal with random nonsensical conversation.

I convinced her we should practice her voice exercises. We shouted MAY, ME, MY, MOW, MOO for several minutes. And tried to make AH last for ten seconds. Parkies do not breathe deep. In Cheryl’s case she often has very little air behind her vocal chords.

We rounded out the evening by watching 60 Minutes on CBS and then the movie “80 for Brady” (for the 53rd time).

I am starting to wonder where she has gone in her mind. She has exhibited several unusual behaviors over the past couple weeks but I disregarded them to simple tiredness from her current PT schedule. Physically she seems to be moving worse so none of this seems to me to be helping her.

A few days ago she sat in the rocker in our living room and stared out the window at the bushes in the overgrown lot behind us for two and a half hours without moving. She did not speak during any of this time.

She puts together random collections of pieces of paper and photographs. Some of these I have taken out surreptitiously of her circulation and put them on my desk to look inside her mind. I think it may be scrambled but occasionally I find little gems.

These pictures of Dad were attached to one of Cheryl’s lists of stuff: Moeller; Dr. & Mrs. Fred Kraus; Jeane Krause; Mr & Mrs.; Barb Kalb; Find Barb’s Christmas card; when I find the list compare the list to current addresses for all; Lists <-> Krause, Torbeck, Driscoll, Weisgerber, Welch; Make a list – Cheryl Torbeck, Cheryl’s friends… None of this has anything to do with these pictures which were probably collected for my father’s funeral in 2007. I am glad I found them.

Maybe one day I can find her mind for her and give it back to her.

Carpe Diem.

Palliative Care

Posted by

2

Today we saw the doctor whose clinic is concerned with palliative care. After a long discussion about drugs, symptoms and what the palliative care clinic does the conversation turned to what we hoped to achieve from it. My hope is for better existence for Cheryl. She has trouble vocalizing her hope.

From the National Institute on Aging — (NIOA) — the next couple paragraphs are useful general information. The doctor’s question hit me spiritually, what are we expecting? It is a good one — What are we expecting? A cure? Return of mental acuity? A better attitude about living with one’s plight? More mobility? A stronger core muscle strength? — A flood of thoughts entered my mind.

What is palliative care?

Palliative care is specialized medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.

Who can benefit from palliative care?

Palliative care is a resource for anyone living with a serious illness, such as heart failure, chronic obstructive pulmonary disease, cancer, dementia, Parkinson’s disease, and many others. Palliative care can be helpful at any stage of illness and is best provided soon after a person is diagnosed.

In addition to improving quality of life and helping with symptoms, palliative care can help patients understand their choices for medical treatment. The organized services available through palliative care may be helpful to any older person having a lot of general discomfort and disability very late in life.

Who makes up the palliative care team?

A palliative care team is made up of multiple different professionals that work with the patient, family, and the patient’s other doctors to provide medical, social, emotional, and practical support. The team is comprised of palliative care specialist doctors and nurses, and includes others such as social workers, nutritionists, and chaplains. A person’s team may vary based on their needs and level of care. To begin palliative care, a person’s health care provider may refer him or her to a palliative care specialist. If he or she doesn’t suggest it, the person can ask a health care provider for a referral.

Why (a conversation with myself, often) is palliative care necessary and useful? What benefit will come from this method of viewing Cheryl’s worsening Parkinson and her associated dementia issues? These are my thoughts.

Since the beginning of this road all I have wanted is for Cheryl to be safe, comfortable, mobile, and as independent as she is capable. Seven years ago, just before we purchased this condo that we live in now we lived in a neat old five bedroom, two story house with a basement. It was a hundred plus year old house with much space and character. Cheryl’s main complaint was her knees. At first I moved her office area downstairs to the front bedroom. We called it the guest bedroom and sometimes “your Mom’s bedroom.” I rearranged the use of the other extra bedrooms upstairs. I remodeled one and took over Cheryl’s old office upstairs as my own. The upstairs bathroom was accessed through the office. The home office was moved to the guest bedroom downstairs as was the rest of her equipment – sewing machine, computer things, printer, etc. but Cheryl had adopted the upstairs bathroom as her own and regardless of where she was maintaining a presence during the day she went upstairs if she required the facilities. (The hallway to our big bedroom in our condo she now refers to as upstairs or downstairs as her Parkinson and memory issues worsen.) She complained about her knees everyday until we moved to our flat single floor living arrangement.

During the seven year process of moving, adapting, adjusting I put her needs first not thinking about or recognizing what those adjustments would do to my emotional and physical health. Not once did I think about how my life would change when Cheryl gave up driving voluntarily when she could not remember where she was or where she was going. Nor did I realize that she was starting into her creeping memory issues. A couple months later when she became terribly upset and anxious one evening because she could not find $1.89 mistake in the check register that she was still computing by paper and pencil, I did not realize that she was struggling with cognitive issues in addition to memory issues. Her math and logical sequencing was gone or mostly so. She did not admit it to herself or to me and I did not recognize it. (notice – cognition in recognize) It was perhaps two years later that she was unable to follow recipe instructions or sewing pattern instructions. (I found myself reading how to reverse an item so that the seam allowance was hidden.) In retrospect she was probably terrified that she could no longer do those things. She was in fear of losing her mind and it caused anxiety.

My hope or expectation is that she will achieve some level of relief from her anxiety. My hope is that she will sleep more comfortably. My hope is that she will accept her disabilities that inhibit what she wants to do and she will ask for and accept help freely offered by her spouse (me).

My hope is that I will be more comfortable with letting her do for herself as much as she can while she can do it. Whatever it may be. My hope is that I will find the strength and the financial means to provide for her future care. My hope is that I will plan activities and be cognizant of the fact that plans will change without warning and I will not rage out loud when it does not go my way.

My hope is to be able to let go once in awhile for my own mental well being. I hope that this group of clinicians can help with living and life. But mostly I hope to get a good night’s sleep most nights.

Carpe Diem.

Longing

Posted by

0

Last night when I came to bed Cheryl was still awake. I asked like I always do if all was well. She replied that yes she was okay. She said, “I was thinking about Mom.”

“What were you you thinking?”, I asked.

” I miss talking to her.”

It was an incredibly lucid moment of which there are fewer and fewer. We talked for a bit about our mothers. She missed Elaine in that moment but she was not sad. She was thoughtful. Elaine is very present to her. Most days Cheryl wants to call her and tell her about what is going on. When we go somewhere, Cheryl wants to make sure someone is attending to her mom’s needs.

Day Three

I suppose that time for relaxation and thinking and memories of her childhood and past good times bubble up in her thoughts when she lets go of control for a bit. Last night was one of those. She was not upset. If anything she was relaxed and pleasantly fatigued from the day’s activities.

Lately I have been giving her a chance to talk about her thoughts as she goes to bed. If I read for awhile before coming to bed and she is still awake I encourage her to tell me what she is thinking about. Sometimes many anxieties are jumbled up in her head. Sometimes, like last night, she is thinking pleasant thoughts. Sometimes she longs for Auld Angsine. (Sp?)

The crabcakes were good and it was breezy on the pier. The shore birds where grabbing any of the small bait fish that they could find.

Today is a new day.

Carpe Diem.

Arrival Azure

Posted by

2

Cheryl and I have come to Florida rarely. My brother who was several years older than me chased his job to Florida in the 1970’s. We had been to visit with him and his family three times in all those years. The last time was not even a year before he passed from the Earth.

There are times when I think about Bill. Occasionally I hear his voice when I talk but occasionally I hear my father’s voice also. We came from the same germ so that’s bound to happen. Dad’s intonation and cadence is in our speech.

This place is in the panhandle almost Alabama part of Florida. Driving around today using up time before we could claim our condo for ourselves I noticed how busy this place is. It seems many are packing as many experiences as possible into the week that they have here.

The water seems to be a different color than the Atlantic coast around Myrtle Beach where we took the kids for many years. I could be wrong about that. It has been many years since we have been there. Memories fade over time.

The pine trees in southern Alabama look to be same species as those in South Carolina and Georgia.

Cheryl seems very tired. It is understandable. It has been a long ride for her and me. The view is very different from our veranda. It is certainly not Ohio.

The surf is very loud.

Cheryl seems concerned that she is not attending to some things that need attention. She is unclear about what those things are. I have assured her many times over that I have made sure that nothing will be missed because of this trip.

If she sleeps well tonight it will be great on the morrow.

Carpe Diem.