end of life

Breathe!

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Is what I have written to myself here and there on my remarks (eulogy) that I intend to give at Cheryl’s funeral mass on Monday. I have read them over and over and out loud. I think I do not need the paper but I will take it with me. I have read it to Cheryl. Here and there she rolls her eyes at me. (“Do you really want to say that?) Here and there I simply dissolve into tears and my voice catches (stops actually).

Breathe! (in a larger font and bold) is printed or written in hand on the page where I choke up. There are many of these.

… I love you Cheryl

BREATHE!

You will always be with me. I carry your heart in my heart.

BREATHE!! BREATHE AGAIN!

I will remember your smile.

Carpe Diem (Eulogies are hard to read.)

I am Still Learning

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It is possible to keep learning as one ages. I have found over the past few years that as I learned prayerful and careful concepts by taking care of Cheryl, I learned much about myself and my own motivations and along with that my own emotions. Today a new inner desire, perhaps need, has come to me.

Two days ago I received a copy of my collage of photos that I had printed on glass. I remember sitting up late two weeks ago searching for online special printing folks. Cheryl was still alive then. Why it became urgent to get that made at 12:30 AM is not important now. At the time it was an urgency for me. The following Monday morning she was gone.

In anxiety about not having it in time I found Northside Printing a local specialty printing business that specializes in specialty printing. I took my collage to them to have it printed on a big format to display at Cheryl’s service on Monday.

The more that I look at this collection of smile photos, photos of good times and family, I notice that the image of her in ill health and death fades from my memory. It is still there but what I think of first is her wonderful smile. It lights up my heart and helps me move past the Parkinson and dementia.

Often when someone dies, close friends and relatives create a memorial shrine. They do this to help them with the loss. I did not understand the importance of this action when I would see flowers and a cross along side the road but many years ago I found myself near the site of the Oklahoma City bombing and a fence filled with small stuffed animals left as a memorial to all the children killed in that tragedy. It saddened me at the time.

This morning I found myself hunting for the perfect place to assemble my thinking space to remember the good times and Cheryl’s smile.

I have started to do this on the left mirror of her dresser. That is the spot she would often stand to brush and comb her hair. She would pick up her hair spray and shake it a little. That would be my cue to get out of the room so that I did not smell like hair spray. The last step was to spray a little Chantilly into the air and walk through it. My grand daughter Virginia now has the leftover Chantilly. Cheryl likes that fact. She just told me while I was typing this story.

Carpe Diem. And carpe all of the special moments in your life. Later you will savor them as I am now.

Godspeed Cheryl.

A Week Later

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It is a week later after Cheryl left the world. It still hurts. It is the next part of this life for me.

I cannot find any words but I know Cheryl is at peace now.

My anchor in life is severed from the chain.

It seems not so long ago that we first met.

Our time together was long and yet so very short. The emptiness is vast.

Carpe Vita – nam vita brevis

They are in a Better Place

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I did not appreciate the truth in that comment until the last couple of days.

On Monday as I entered Cheryl’s room at Bridgeway Pointe, I was stricken immediately with a deep grief. Simultaneously with that emotion I was immediately relieved that she was released from her struggle with Parkinson’s and the dementia she experienced in her last years here.

I wanted her to be alive and with me. But not merely alive, I wanted her to be healthy.

I really miss her today. Today we plan her church memorial service. Today I will want to ask her opinion about various things, music, readings. I will close my eyes and ask and listen to her thoughts.

Stay with me today, Cheryl. We can get through it.

Carpe the love Diem.

Stream of Conscious – Touch

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Two days ago when I sat with Cheryl in the common area of where she is staying, I noted in my journal that she seems to need touch. I think I do too. On these occasions when she does not seem to be in the present, somewhere in her head she needs to feel, manipulate and touch.

It seems to me that these days Cheryl has to have more touch. That is just my thought in my observations when I see her. I am just sitting with her and seeing how she’s doing. But that is what I see and think. I think also that I need the same kind of touch. I sit there and turn the chair so that I can we can be side by side and I can hold her hand. Doing that action is important to me. I observed that about myself today. Today for awhile, about an hour or so, we sat holding both hands. She was holding my left hand with her left hand and I was holding her her right hand with my right hand and we sat that way for a long time.

I am writing this using an app that I downloaded that transcribes spoken words into printed words. I will see how that goes. It looks like I can write in a crude fashion. I can just send this text to myself via email and then paste it into a document and then spend some time trying to figure out exactly what I am trying to say.

It is hard to describe. What I see and and I mean as I think about what I am internalizing when I’m touching her or feeling as I am feeling her knee. Cheryl has gotten very skeletal over the past few weeks.

Even as she looked around at things in the room and told me some story that I could barely hear because her voice is so soft. There is a lot of ambient noise; television in the main room, television in one or two side rooms, Bluetooth music and the occasional phone call, she would simply just sit holding my hands. She was okay to sit that way. Every now and then I had to move my hand and scratch my nose or whatever and every now and then she would let go and you know touch something else or scratch her nose or whatever. It is fascinating to me as this goes on how much it is important for the both of us to touch each other.

The whole thing about touch is sort of interesting to me. I think we have always had that throughout our married life but as I as we get further in this Parkinson’s journey, the sense of touch is is important to me and I think I really do think it’s important to Cheryl. We are communicating our presence to each other through touch.

She does not resist it. She does resist things that that bother or sometimes hurt her. Her sense of pain can be strong. I am sure she feels pain because every now and then she says stop doing that, it hurts me or something like that, or maybe she’s having a cramp in her leg or whatever the deal is, but simple touch is very different. She will also grimace if something causes pain.

I have been exploring the nuances of touch in my head and I don’t really know how to describe differences of instance. It is interesting to me that it is important to her and me at the same time.

Now if she is sleeping or she’s very tired or trying to doze or she does not feel quite right or she is hungry or she needs to go to the toilet or needs to move, then touching gets in the way. When she was still home here with me, it seemed like we would fight (not the right word) when I was helping her with one of these activities. She would be dissatisfied with any any help that I would give her.

I sometimes just reached over to touch her leg to see whether or not there is anything left there. And I realize that I am holding on to her thigh bone, for example without hardly any any any meat. She used to be a much bigger woman. She used to be a lot fluffier. Just a year ago, I would have had a very hard time picking her up and holding her up and helping her into and out of bed. These days, in some book somewhere, I read somebody describe somebody as a bag of bones, that is a pretty good description of Cheryl. She still has a lot of muscle strength when she decides to squeeze and grab something, but she really doesn’t have a lot of mass. There is little subcutaneous fat left on her body and that too makes me want to touch her just simply so that I know in my own mind that she’s still there and she’s still alive. Without touching her she still in my heart. I think about her all the time but somehow there is a physicality that happens when when I actually touch her.

She is very skinny. Touching helps me to understand.

Carpe Diem.

January 6th and End of Life

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Yesterday I put away the few Christmas decorations that I had spotted around. The very last thing was the door decoration that I had carried over to Cheryl at the Harbor. Later I realized I was a day early. Cheryl always did that on January 6th or the weekend afterward. I left a little carved camel and a note “Off to find the star…” in the place where I had set up a small creche that had been my mother’s.

I went out to retrieve the snail mail to today and noticed my note to mostly myself but able to be viewed by my neighbors. In the mail was an envelope from my sister that contained the signature page of her advance directive document should someone need to speak up for her at the end of her life. She has saddled that task on her lifelong friend Phyllis. I am her first alternate.

I visited Cheryl earlier today. She was sleeping very soundly so after sitting with her for a bit and sending her picture to her brothers and sisters, I kissed her good-bye. She did not stir so I left to find lunch at home.

Off to find the star… is a metaphor to me for life and where Cheryl and I are. I am very glad that she is well cared for at all hours of the day and night. Once in awhile I have this overwhelming sadness and grief that sneaks up on me at odd times. This morning it was during the simple activity of making the bed. It is funny how certain chores are taken over by various participants in a loving marriage. Cheryl always did this until a few years ago. Even a few weeks ago as I was making the bed I might be talking to her and encouraging her to select a certain shirt or “why don’t you wear your red jeans today?” Even though I was doing the bed, we would banter back and forth.

I miss that. The star dims with time.

My granddaughter is participating in a dance competition today. Soon my daughter will pick me up to go with her to watch the competition. Cheryl is safe and calm and perhaps asleep. I am off to find the star by myself.

Carpe Diem.

Christmas Season 2023

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(A beginning of a new life and the ending of an old one.)

This holiday season marks the beginning of a new phase in our life. “We’re in this love together” popped up on the Spotify playlist as I started to write my thoughts. Cheryl and I are in this love together and forever.

For the past few weeks I have been organizing, sorting and cleaning our living space. I have gotten rid of multiple copies of old emails and address lists. I have meticulously gone through rubber banded stacks of old Christmas cards and retrieved pictures, snapshots and photographs. The work has been tiring and emotionally draining. Old photos bring back fond memories and nostalgic remembrances of good times. And some old photos do not. Those photographs distract me into detective mode. (Who is that person? Why were we there?) Even with those questions hovering in the background of my mind I think, look how young we were once. How did we get here?

This year has been a tumultuous one with both love and mental chaos, physical challenges, extra equipment and extra medical help as Cheryl’s Parkinson and dementia seemed to overwhelm her and me. Her good days became fewer. Now, today, Thursday, December 28th, my sister Laura’s birthday, Cheryl is staying in the Harbor memory care section of Bridgeway Pointe. How we got here is a story about the agonizingly slow progression of Parkinson’s disease and the mental toll it takes on many of its victims. It is also a story of how it slowly came to me that although I thought my love could conquer all, there is strong evidence that extra hands and expertise were needed. It is a story for another day.

This holiday period is very different. About two weeks before the Thanksgiving Day holiday Cheryl moved into the Harbor. A week and a half later as I took her to David’s house for Thanksgiving dinner, she was resistant to getting out of Bridgeway Pointe to go to David’s house. After that experience I told the kids and extended family that any more celebrations we had to take to Cheryl. We should not expect her to go to them. (It is too hard for her and for her husband.) Cheryl had settled into Bridgeway Pointe in a fashion that I had not expected.

The rest of the holiday dinners and celebrations I attended without Cheryl by my side. I visit Cheryl every day. The kids visit on many days. Her brothers and sisters and friends visit when they can. It is different. I do not know what I was expecting or what I want it to be, all that I know is, that it is different. There is something missing for me at the celebrations. I think that something is Cheryl’s spirit, her smile, her glee watching the kids open presents, catching up on family or simply delight in the moment. “Don’t it always seem to go that you don’t know what you got ‘til it’s gone?” – these words are from an old song.

From here at this moment in time we begin anew. I do not know what our new life will bring but it will be better for us.

Carpe Diem.

Diachrony

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Change happening over a period in time. This is the word of the day from Anu Garg who has been publishing “A Word A Day” since 1990-something. He started in college.

I wrote the following story almost two years ago. I found it back looking for something else. It tickled me then when I wrote it then but reading this and thinking about Cheryl’s current state has dramatic contrast. It makes me wonder how much longer? Diachrony makes no reference to how long the period.

Black Underwear

In my new life as caregiver, I have developed several routines. Friday is laundry day. In the “delicate” load was a pair of black panties and a black brazier. And then my mind wandered off into the weeds.

When we were much younger and it was early in our marriage, I let slip to her that black underwear was for me a big turn-on. Through out our younger lives she kept this in her heart. She would let it be known through certain hints, glimpses in the mirror or direct conversation that this was a good night for what she referred to as intimate time.

On various date nights or other occasions the clue phrase was “I am wearing black tonight”. Somehow the wine in the restaurant tasted better. The conversation was closer. I quit seeing the surrounding tables. I quit hearing the surrounding conversation. I guess pheromones intermingled with testosterone does that.

Sometimes I would initiate the contact. Is this a black night? No, she responded, I thought red would be more appropriate. Well it was! It is hard to go slow and stay with your partner when she is wearing black underwear. Much more so when she is wearing red. Holy cow, I miss those days.

I guess she does too. A couple days ago, I do not recall where we were off to, but I was pecking away at this computer and she, after finishing her shower, stood in the doorway of my home office wearing only the two items that were now in the load of laundry I am folding to put away. “I’m wearing these today”, she announced. My brain went spiraling off into the weeds. Holy cow I miss those days. Sorry. I am repeating myself.

Even now I am distracted by those thoughts. Our intimacies in many ways are much closer now even though less sexual in nature. Love is a lot of things. Only a small part is sexual.

It is hard to express how much closer this journey has made us. It is hard to express how this illness has opened my eyes to things in her that I did not notice before. I am more aware that my words can hinder her. I am more aware that my words can hurt her.

This is an eye-opening experience for me as well as her. I have taken on many of the domestic day-to-day tasks – laundry, cooking and others. We have hired out the cleaning to my niece who has her own cleaning service going. We moved into a condo situation so that lawn care and building maintenance is contracted. I am amused by the fact that I have become somewhat protective of my own methods and how easily I become annoyed when she or anyone else critiques my method.

She takes care of me as much as I take care of her. I miss the younger us. I miss the crazy running around chasing kids sporting events. I miss the, “I’m wearing black tonight.” And the opportunity to make more kids. But I really love her in this moment. I just hope I am able keep caring for her and I as fear for the worst outcome, and cannot fathom why my feeble brain goes there, I realize how deeply I love her.

The black underwear still looks good.

That was written in January of 2021. These days she can barely stand much less lean seductively in the doorway in her underwear.

Our love is still strong.

Carpe Diem

Blessed By Cheryl

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… and help us to get to the end of our journey. And help Paul get home.

She added this to the end of the meal blessing spontaneously. I was surprised. Lately she has been struggling with a few delusions about her deceased sister Janice. (Her conversation will start, “I talked to Jan when she was here…”) I resist telling her Jan died in some of the early covid deaths. She was very close to Jan in their childhood years. They slept in the same double bed right up until we were married. Sometimes she calls me “Jan” in the middle of the night as I make my way to the toilet.

This blessing did precede another discussion about Janice. To Cheryl, Jan is not gone. Perhaps that is a good thing. We live on in those who remember us. (A quote from someone else not me.) Cheryl’s mother lives on in conversation with Cheryl too.

When she pronounced this blessing at the end of the standard, bless us oh Lord and these thy gifts – it surprised me. Perhaps in her lucidity and presence for a minute I was transported to our younger lives when occasionally extra prayers were added. Her brother always adds … may the souls of the faithful departed rest in peace.

I did not ask what she meant by her prayer. Those thoughts are private to her and if she wants she will tell me. Throughout her continuing decline with dementia these small nuggets of situational awareness bubble up to the surface for me to ponder.

Help us to get to the end of our journey… (and your thoughts here).

God, I love her.

Carpe Diem

At Peace

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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.