love

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.

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

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.)

Trust

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Trust and have faith that the right thing is going to come. This is not my line. Someone said it on TV a couple days ago.

I found myself staring at this thought and wondering where I was going and all the while thinking about St. Valentine’s day coming up. This by the way could allow me to wander down my own personal rabbit hole of date is dyslexia. But I will not do that. I ignored this prompt for a couple days until today.

We have a bulletin board on our hallway to the main bedroom. I made this for Cheryl a few years ago because she needed a place to hang THE CALENDAR. Since she is not home with me I did not bother to buy and hang up another calendar. I use the calendar on my desk in front of me. The board looks a little naked and I hang little tchotchkes that I find as I go through her collections of cards, photos and other memorabilia.

When I am stuck on something, a thought, a problem, a puzzle, my emotion, I leave it alone for awhile to see if my brain finds a solution. I have used this technique throughout my working career. This morning walking back to the bedroom to get dressed and start my day, I passed by a card that Cheryl had gotten for me some time ago. (I know that because her script is still readable.)

On the front: “Thank you for finding me, charming me, and loving me. Thank you for making me laugh, for being there for me in so many ways, and for always being the best friend I need.”

Inside: Dear Paul, (in here hand) “Thank you for making me feel like the luckiest person alive.” Love, Cheryl (in her hand)

These days since Cheryl has very little voice left these words mean a lot more to me than I care to admit to myself. I am not sure when she got this for me. In fact she may not have given it to me. Over the past couple years she would often write a card out and then put it away in one of her collections of stuff to take care of later. The great organizer of our family had lost her organization. When I found it a few weeks ago I put it on the bulletin board instead of the throwaway pile of 20 year old birthday cards and Christmas cards.

Happy Valentine’s Day, Cheryl. I love you! I hope that somewhere in your befuddled head you still understand that.

Carpe Diem.

Close  Friends

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Cheryl has been a close friend since 1966.  Often being a close friend is not considered when talking about a spouse. Why does that not come up? I think love binds friends together.  Good friends have mutual love. Acquaintances have attraction but not love. Maybe they express empathy but not love. It is different somehow.

Close means something near. The opposite of close is far. True for physical distance and feeling. Close also means dear. Close Friends are Dear Friends.

We were friends first and then spouses. This what I think, marriage of friends will last. I do not mean that one will never wonder what if but the what if is not a passion. The what if is merely a speculation.

Every day I have a feeling begins about 9:00 a.m. I feel the necessity to get moving and go visit Cheryl. At the same time, I am certain that she is going to be sleeping and not know that I am there. I am not certain of this but it happens more and more. Fear is, perhaps, a better word. When she is sleeping, it is personally a disappointment. However, I think the closeness that I feel for her is unsatisfied until I see her and touch her. Even if she is sleeping, I can feel my heart and mind calm – she is okay. I have not thought about this before our current situation with her disease.

Maybe this is what I felt when I was working and traveling for work. I especially felt a longing in my heart on the weekend should my travel last that long. It would be very important to get home. Is this homesickness? She was where I was home. During the week while away I could distract myself with work and maybe in the evening a little alcohol. But on the weekends I needed her. Fortunately most of my travel rarely was over the weekend. When I retired it was a comfort to have her nearby most of the time. I needed the closeness and doing things together.

I am thinking about all of this as I struggle with the idea that she is leaving me. And as I have written in an earlier post, I do not know where to put that. So, I am thinking about our trips. I am thinking about our children when they were small. I am thinking about our life. I am remembering the great times we had.

Carpe Memoriam

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.

A Sense of Cheryl

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Often when we went to see her neurologist and I talked to him about Cheryl seeing things or we saw the nurse practitioner and had similar conversations, he spoke of sensing a presence nearby. For the past few weeks that Cheryl has been away I have had that same sense of her nearby. It occurs mostly in the morning when I awaken. The sense of her is not always there but it is often there.

I admitted that to myself and others when we met for our support group meeting last night. The concept is hard to describe. There is something about being sensate to this world and being aware of our presence in it that implies to me an additional sense of soul. If there is a soul who is to say two souls cannot touch each other. They could become entangled and affect each other. Why not?

Yesterday I did not sense any of this presence of her. When I went to visit she was deeply asleep. No amount of talking or kissing of ears would awaken her. In the evening when I was home alone after my second visit I felt disconnected. Something was missing. I have no idea what but I felt or did not feel something. It was an emptiness and maybe a little anxiety because whatever it was, it was not there.

On this morning I felt her. I was certain she was awake and aware. When I went to visit, she looked at me and smiled. Maybe it is just fifty-three years of marriage. Maybe it is just a comfortable familiarity and an expectation that she will be with me in the morning. Perhaps it is just a pleasant dream of her that I am waking from. Perhaps it is what is referred to in the Star Wars movies as the force. I like to think there is an ethereal connection between us. We are eternally connected souls. Maybe a quantum connection exists.

Yesterday her end of the connection was off. Today it was not.

Carpe Diem. Carpe Nexum.