Caregiver Stress

Parkinson’s Help

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I had a long conversation with a member of our Parkinson’s support group today. She called mostly to talk about her husband who has Parkinson’s disease (PD). And the struggles she was having as a caregiver with Parkinson’s disease care management. We talked for a long, long time. Maybe half hour, 45 minutes she was on the phone. She was pretty forthcoming, with lots of things that she was dealing within her life, I was surprised by the call and I don’t know why but I am glad she reached out and I was able to give her an ear. Afterward it made me feel good. It made me feel sad for her.

It made me think…

Think a lot about Cheryl and how I dealt with helping her deal with her disease. She had a lot of the same issues Bev was talking about. Her stories were remarkably similar to my memories of that time in our life.
Bev is dealing with it (Parkinson’s in her husband) right now. With her husband her description is very, very similar to where Cheryl was maybe 2 years or so before the end of her life. The parallels are really striking. Bev was telling me that they moved into the condo that they are now living in about 5 years ago. (Same for us.) Mostly because it was getting harder and harder for her husband. He always, you know, mowed the lawn. And he did the maintenance kind of activities that you have with the house.

She went on and on to tell me lots of stories about things and I think I’ll have to think about them for a while. But the but the whole story line is so remarkably similar and so sad and well, maybe not sad, but but frustrating, you know, the disease just kind of consumes your whole relationship with with your spouse, they’ve been married a long time too.

They’ve been married about 35 years. They were together 3 or 4 years before that. Cheryl and I were married 53 years and we had been together for 4 years before that, it’s just incredible how similar the stories are.

Anyway, I needed to take time away from what I was doing here in my class management at the Mason campus of Sinclair College. I had to go have lunch somewhere where I could sit quietly and think about things and grade papers and take my mind off of that phone conversation and the memories it conjured. That was such a debilitating part of my life and Cheryl’s. It was so all-consuming. I think that’s what gets missed when people talk about care. Giving it is so all-consuming, slow moving, frustrating and then people will still say, “Well you’re blessed to have her or your blessed to have him. There’s no fucking blessed going on in that whole Parkinson’s/dementia thing.

Just.

Not.

Happening.

Bev did tell me one other useful thing. Her family doctor told her that she needs to go outside and take a walk everyday. No phones, no music, no nothing, you need to go out and listen to the birds, enjoy the sunshine. If there is no sunshine, enjoy the rain, if there is rain take an umbrella, but for 30 minutes a day, you got to just walk away from everything, get rid of the stress, let it go. That is absolutely the best advice I’ve ever heard anybody say to anybody else about this horrible disease of Parkinson’s. It truly is a horrible disease. I remarked to her that it was the best piece of advice I had ever heard. (I got away to ride my bike whenever I could.)

Not only does PD make it so that you can’t get around easily. It’s a brain disease, so lots of times the brain goes wacko. He or she becomes a whole different person. Bev was actually talking about that too.

She and I commiserated for a bit; they like us have been married a long time. All the early on things that they and we had. They had a really good life up until just a few years ago, when she thinks he really went downhill in a hurry. But that kind of story is just so common, and somehow doctors aren’t able to describe the signs to the care partner. It seems almost like you would need to have a psychiatric version of Parkinson’s doctor. PD is a movement disorder, so one seeks out a movement disorder specialist but probably one also needs a brain specialist or its psychiatric personality disorder specialist, in other words, a brain guy to to talk about some of these issues. The sad thing is the person with Parkinson’s disease doesn’t recognize what is actually going on. The person helping a person with a dementia issue, of course, is struggling to do the right thing to get the best care. Those around him or her (the family) without the lived experience, those that aren’t dealing with it on a day to day basis, they think that everything is generally okay, because the PD person the demented person is able to actually keep it together for an hour or 2 or whatever it takes to get through the party or the social activity, and so, those people, that part of the family who is not living there does not get to see the whole picture.

They think everything is fine or mostly fine.

Whoever it is, is obviously ill with PD and can’t move so good. Maybe they look old and got arthritis…

So many things are invisible. They cannot be seen. Or we choose to not see.

Carpe Diem

Music – Nostalgia and Healing

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Lately I have noticed how the residents at the Harbor at Bridgeway Pointe seem to perk up and take part in the music that gets played occasionally either as a part of Hospice care or BP’s effort to provide activities for them. Most residents have some physical inability to participate fully and yet they do their part. Music has this effect on everyone.

One day when I returned to my little condo I looked at our old stereo and drug the two plastic tubs of LPs that had made the cut to our new place from the old one. Once before Cheryl and had done this but it has been a few years now.

I have played several old albums during the past few evenings. We have quite a collection of stuff. She tended toward Johnny Mathias and the Four Tops. I tended toward the Iron Butterfly and the Doors but intermingled in the tubs with those are Carly Simon, Crosby Stills & Nash, Peter Paul & Mary and Linda Ronstadt (another parkie). Growing up in the late 60’s and married in the early 70’s, I was very tuned into the Vietnam War and the associated commotion that it stirred up in my generation. So, there are a lot of folk singers in the tubs.

Listening and not listening to Crosby, Stills and Nash this morning, Steven Stills started singing, ” Helplessly hoping her harlequin hovers nearby awaiting a word.” I quit working the quordle for a minute and listened carefully. The refrain, ” They are one person. They are two alone. They are three together. They are for each other.” made me cry and think about Cheryl.

“Wordlessly watching he waits by the window and wonders at the emptiness inside.” – Steven Stills. 1969 Gold Hill Music Inc.

I needed a bit of nostalgia. This song and these words have a different meaning to me today. I will spend some time thinking about this today. I think Cheryl is getting close to the end and it breaks my heart. It is hard to find good in any of this situation.

Carpe the damn Diem and keep looking.

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.

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

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

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.

Endless Days

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A dismasted ship in the old days was uncontrollable. It floundered in the wind. My week has been like that. Floundering in the wind.

My worst time is in the afternoon. There is no one to cook for, care for, talk to, argue with, pick up after. She is in another place even when I visit her in that place.

I feel dismasted.

Carpe Diem.