Parkinson’s

I Remember

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Cheryl and I met at a picnic. It was a blue moon in August of 1966 specifically, but that’s not really the story. The story is what we have been together since.

High school friends of mine put together a picnic with friends of hers. Cheryl went because they invited her. I went because my friends invited me.

I found myself sitting alongside of her at a picnic table in a dark picnic area in Winton Woods. Both of us were wondering how these guys were going to get the hot dogs and stuff off of the grill when they hadn’t brought any tools. So I kind of jumped into the breach to fix the problem and scooped the hot dogs up with a couple of paper plates. Cheryl later told me that she thought that action was really clever.

But that is not the important thing that I wanted to tell you about that night. Our meeting was a totally random event in both of our lives then and since that night (58 years ago) we have been together.

It’s sort of amazing when you think about it. I mean in high school, of course when she went back to ICA in Indiana, I dated a couple of other girls, but I didn’t really get serious or even interested in anybody else except for her. Four years almost to the day after we met on that picnic, we got married. I finished up school at Miami. We had kids. She supported me at Miami. I supported her at U. C. The kids grew up. We supported them and they moved out. We had a few years in there when we sort of enjoyed (you know) empty nesting, a few trips, just enjoying life and living. We had two fairly well paying careers and enjoyed a little bit of travel and some other things like that. It’s been a really good life. It’s been a really good life and she is gone mentally and I don’t know where to put that. I do not know where to put that in my heart. I don’t know where to put that in my head. I don’t know what to do about that period. I struggle with that pretty much every day.

She is physically still here but mentally not so much in the last few weeks. Probably not very far from now in a few weeks she will physically be gone, too.

I just don’t know how to think about all this. I ponder this all the time.

I do not know what is next but I do so wish there was a manual. She is still here, but she is not here.

At first it made me feel a little bit guilty, moving her to memory care but I’ve come to realize that if she was still home with me, I would really not have a good handle on being able to help her and keep her clean and and feed her and all those other things that go along with the situation that she’s in at Bridgeway Pointe.

I don’t have guilt feelings anymore. I tell myself this but maybe those feelings are still with me. At first I had sort of thought that it felt like I was giving up or giving in or throwing our life away or whatever you want to say. I but I don’t really quite know how to express that emotion, but we have lived together for so long. It did not and still does not feel right. Perhaps it never will.

And it’s so hard to see her go. I just don’t know what to do about it. I just don’t know what to do about my emotions. I can’t really put them in my pocket. I mean, I can for a while but then they just sort of spontaneously come out every now and then. I don’t worry about that. I just sort of stop for a minute when I get all choked up and I just simply can’t talk, but I’m getting better at it passing by that that deep sense of loss. I don’t know how else to say that. It is just a really deep deep sense of loss.

I love her and she will always be part of me. I have and we have lots and lots of good memories. I am not sure that she has any memory, sometimes it’s hard to tell.

It is very hard to tell where and what she remembers especially towards the end of this past year. She seemed to regress more and more into her childhood. And I don’t know how else to say that. In the middle of the night when I would get up and go to the bathroom, she would wake up a little bit and say, “Jan where are you going?” Sometimes she would say, “Dan?” (you know? )

These past few years have been a trial. I will not remember her this way.

I will remember the trips to the Cincinnatian Hotel.

I will remember Sunday matinees at the Playhouse in the Park.

I will remember the cruise trips.

I will remember the hiking trips in various parks and the looks on the boy scouts’ faces when we encountered each other five miles from the trail head in Green Bow State Park in Kentucky. And how great lunch tasted when we got back to the lodge after our hike.

I will remember pancakes with fresh maple syrup in the morning looking for the ladies room in Hocking Hills.

I will remember the joy on her face when she graduated college.

I will remember the tired joy on her face after the birth of each child.

I will remember the trips to Myrtle Beach and during those to Charleston.

I will remember a Christmas Eve a long time ago when she insisted that I open her gift to me and all I wanted to do was go to bed and sleep. She had made me a shirt. She was a wonderful seamstress and proud of it.

I will remember the trips with friends to Door County and the Grand Canyon.

I will remember walking to the neighborhood pub after work to enjoy dinner she did not cook and a glass of wine.

I will remember her herding the kids to church on Sunday morning.

I will remember cold weekend mornings alongside soccer fields.

I will remember her excitement when Anna announced that our first grandchild was coming.

I will remember how she cared for me and our family through life.

I will remember many things but I will not dwell on the last few weeks of her time here.

I love you Cheryl. You will always be with me. I carry your heart in my heart. I will remember your smile.

Parkinson’s disease sucks. (Today I do not feel much like carpe-ing the damn diem.) She is slipping from me and I feel sad.

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.

Pizza Tuesday

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Sometimes You Can Be Surprised

There are special people in your life that unbeknownst to you are looking out for your welfare.

A wonderful thing happened to me last evening. A friend – I thought Cheryl’s friend – asked me in a text message if I was still going to a favorite pizza place on Tuesday evenings. I am not.

This was something that Cheryl and I started many years ago as a reason to have some time out of the house and enjoy each other’s company without the distraction of other things. We started the pizza tradition on a Friday night twenty or so years ago. Her Parkinson was non-existent. Our favorite pizza store at the time became very crowded on Friday and over time we tried different days until we landed on Tuesday for no other reason than it was not crowded on Tuesday. “Anything goes Pizza Tuesday” was born.

It is amusing as to how little family traditions are born. Our pizza Tuesday was born this way. On some Tuesdays we would try a different pizza store but it was always pizza. Sometimes Cheryl wanted a calzone. On those occasions I would get a hoagie sandwich. But Tuesday was sacrosanct and pepperoni was king. If it did not have pepperoni on it, it did not count as a pizza. It was merely flatbread with stuff on it.

As Cheryl’s disease progressed I kept up our outings for pizza. I invited our good friend and neighbor to come with us. I invited other friends and family. Some nights we had a crowd. Some nights it was Cheryl and me. During the pandemic pandemonium I carried out from our favorite pizza store and we ate around our dining table with our neighbors.

I kept this going for longer than was probably necessary. The last few times we went on a Tuesday evening Cheryl had little mobility and I would push her around in her transfer chair.

But I have digressed a bit. When Mary Jo texted me and asked about pizza Tuesday, I asked her what did she have in mind. After a few exchanges we settled on a time and she and her husband would pick me up. Two days ago, Cheryl had been mostly sleeping away the day as a result of all her activity on Monday. After our chat with Dr. Y she had three visitors in succession. That sort of thing tires her out. Sundowner Syndrome is annoying to deal with in winter but Showtime which she is still able to muster up for an hour or so just plain wipes her out. So on Tuesday she mainly slept. And on Tuesday I went to the bar with Gary and Mary Jo.

Help from Many Others

Two women have been a great deal of help to me over the past couple of years are Cindy and Linda. Both are cousins-in-law. Cindy is married to Cheryl’s cousin. Linda was married to my cousin Frank. Frank is gone from this Earth. Both asked how they could help me spontaneously without me asking for them to help. Men are not good at asking for help of any kind, especially me. Cindy recognized that first and volunteered to come and sit with Cheryl for a couple hours once a week while I went to ride my bike and got some exercise. Linda did a similar thing. I was able to twist her arm to get her to sit with Cheryl while I attended a seminar on caregiving a couple years ago. They will always be front and center in my mind when I think of people who have helped me the most as Cheryl’s cognition deteriorated.

If I look with different eyes I find myself surrounded by caring and kind people just like Cheryl is surrounded by caring and kind people at Bridgeway Pointe. Sometimes you just do not know who will step in to help.

Carpe Diem.

When She Tries To Eat Her Fidget Beads

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When she tried to eat her fidget beads
I reacted not with excitement but love
When she poured her water in her lap
I came to her aid with love and caring
When she talks so soft I cannot hear
I ask her to use her outside voice
And yell with all her might

She replied I am.
I took her fidget beads with me today
I realized the meaning of out of sight, 
out of mind in her case totally
I got a towel to dry her pants and sleeve
I asked her if I could help her change clothes
No, she said. I did not push.
And I am learning to read lips.

Today she tried to eat her fidget beads
To her these resemble candy.
Touch is more important than being right
Gentle touch and just being

Dance Competition

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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

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.

With Dementia

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With dementia, though I know she has it, I want her to be like she was before.

With her dementia, it is hard to separate what I want to do from what she is capable of doing.

With her dementia, I want her to be organized like she was before.

With her dementia, I want her to wake up and be ready for the day.

With her dementia, I want her to go with me and walk in the sunshine and enjoy the day.

With her dementia, I want her to comb her hair as she likes it to be. Men are not good at hair.

Even with her dementia, I want her to be aware of her surroundings.

With dementia I want her to be with me in the present.

Though she has dementia I want her to help plan our future.

But with her dementia and her associated Parkinson mobility issues little of that is possible. I do not know what is possible anymore and that frustrates me.

If that sounds like a lament to you then I have accomplished my goal.

Whoopadiddee

Carpe Diem.

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

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.

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)