Caregiver Mental Health

Grief and Sharing

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I recently asked to be a part of and help with a ministry at our church called GriefShare. It is a support group for those of us dealing with the loss of a loved one. Mother, Father, Sister, Brother, Son, Daughter or Friend – Any or all of these losses in life. They are common and expected but not hoped for losses and we grieve.

I do not know what I am hoping to gain from this experience. For me, having spent a great part of the past few years caring for Cheryl, it may simply feel comfortable to help others.

The program itself which has a website and an abundance of videos and formal presentations seems to be aimed at guiding the participant toward some stable existence without whoever has left this existence. In many ways much of that journey occurred with me while Cheryl was struggling with her Parkinson and her accompanying dementia. I purposely try to remember things we did before her Parkinson. Sadly, perhaps because those are are farther in the past or perhaps because the Parkinson and dementia were so overwhelming during the past six years or so, this memory exercise is hard. I still make the effort.

It is not so much that I want to forget the past few years but it is very important for me to remember the fun we had for the few years prior. Those are the years when we hiked in parks and through the woods. Those are the years we out bid everyone for overnight hotel stays. Those where the years when we hopped in the car suddenly on a weekend and drove to Illinois because a grandson was coming. Those where the years we hopped in the car and drove to Indiana because a granddaughter was coming. Those are great memories. And when I purposely think about those times I do not see her deathly ill face.

Cheryl still lives in me and I do grieve for her but I think the long time we had with Parkinson and cognitive issues (I think) helped me to come to terms with her eventual death. She was very much not the wonderful person I spent fifty years of my life with during the last six or so years as she drifted deeper into dementia. I have written this before to myself but I am happy for her that she is gone. She is in fact not suffering anymore.

And with that thought I do wish for her to be here with me. Happy. Disease free. Without encumbrances. Without walkers and canes and wheelchairs. I wish she was her slightly overweight but curvy self wishing to lose a few pounds by doing water aerobics. I wish, I wish, I wish.

I have let her go but I still grieve for her and will always. How can I not?

GriefShare emphasizes that grief is a journey. Life is a journey too. I use a picture of us that my daughter took of us just a few years ago as we walked back to our spot after completing a fund raising walk for Parkinson research. I still use it and another version where Cheryl is ghosted. We are still journeying through life. She is still with me. I hear her admonish me for being a stinker because I am upset about something, usually a trivial something maybe yelling at another bozo driving along. She would tell me to calm down while she was still riding with me physically She is still traveling life with me even though she is not here. I still talk to her. I think of grief as a nuance to life’s journey.

Grief will always be there. My sister died in 2008 of MDS a form of blood cancer. My father died a few months before that in 2007 of colon cancer. My mother died in 2016 of old age. My brother died in 2020 of heart failure. Grief will always occur in life. It is one aspect of the journey.

At this stage of my life I search for purpose. A few years ago as Cheryl’s situation worsened I convinced myself that my purpose was to take care of her. That was true but I am beginning to think that there is more. I am wondering what that more is.

Carpe this Diem and all the more you are given.

A Budding Scientist

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One of the hidden benefits of my sister-in-law’s retirement from her lifelong private babysitting business is the fact that Zane her grandson often comes to help his mom spruce up my condo. Zane came yesterday and brought his rock collection. He is so proud of it.

I have many magnification devices and he had none, so, I gave him one of mine so that he could further explore his collection and expand his knowledge of his world. I also gave him a special Rubbermaid rock case to house his collection. He seemed satisfied with both

I snapped a few photos of the future STEM student. I am hoping that Zane will come to help his mom often. And I hope he will keep up his interest in geology.

It is unlikely that his interest in rocks will last throughout his lifetime but it might. Maybe many years from now when I am gone he will remember the good time he had yesterday examining his collect with the special magnifying glass Uncle Paul gave him.

He has such a great smile.

Carpe Diem.

Almost Losing My Head

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Falling down and injuring myself has captured my thoughts for the time being. Some lessons can only be learned from one’s own experience.

The first and maybe the most important one is pretty straightforward. I am older than my brain is willing to accept. Maybe I should be more careful about things. Not surprisingly I am much less athletic than I used to be when I was a younger man.

The second is no longer will I focus on strength training. Exercise focus will be endurance and balance based. If the particular exercise helps with those things I will include it. Biking and yoga are two exercise activities that I am drawn to in particular .

The third idea is perhaps I should seek out help to deal with ongoing grief.

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.

Stuff Occurs

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Says the doctor says I can go home. No surgery.

Just wear this neck brace for a while and after 8 weeks or so all will be well. Hopefully after 8 weeks or so my face won’t look like it does now. Ill be back to my clean shaven,  handsome self. Not looking like I went through the windshield of a car. Anyway It’s not too bad.

I still feel kind of dumb, but Oh well. Stuff happens.

Carpe diem

Florida Again

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After a few months, I find myself in Florida again without Cheryl. In June of 2023 when Cheryl and I came to the Florida panhandle with Anna and her family it was fun and it was exhausting. This time Cheryl is not with me. This time Joyce is often driving and I am able to watch the scenery. This time is different.

Last summer may have been our last trip together. This trip is not the first one without her that I was not going to work but this trip feels different. I cannot put my finger on what is different. Is it because Cheryl is not with me and it is the nation’s designated vacation spot? Surely that’s not it. I am visiting family with family. Is it because I am not worried or concerned about her care? As I was visiting with my sister in the previous October? I am still analyzing those thoughts.

Judy’s pool view

This trip started as an invitation to participate in an informational weekend about  the activities supported by the Southern Poverty Law Center  founded years ago by Julian Bond et al.

The weekend’s events culminated in jubilee commemoration of Bloody Sunday 59 years ago on the march from Selma to Montgomery Alabama.

Edmund Pettus Bridge

My impression of Selma is that it is remarkably poor. This impression is supported by empty and boarded up storefronts and the slow or non-existent recovery from the tornado that passed through a couple years ago. Whatever the vision is in the leadership of the great State of Alabama may be for the future it seems to have left the the small village of Selma behind. It is a pretty area. The few pictures I took of the river area show this fact and Selma has a grand boulevard in the center of it. There is a Walmart Super Center less than two miles from the town center. Big box stores tend to kill off the core of little towns. It seems to be happening here.

The bridge crossing happened on Sunday and after we walked across the bridge and completed wading through the crowd on the other side taking selfies and deciding what to do next and generally recrossing the bridge on the sidewalks back to the carnival atmosphere a block off the side of the boulevard, we found our bus back to Montgomery. That evening we went to a nice local restaurant for dinner. Fifty-nine years ago many of those bridge crossing folks spent the night in jail or the hospital somewhere. It is quite a contrast, then and now, but the poverty is still there.

The next day we were off to Port St. Joe, Florida to visit with our nephew Mark and his wife Leslie. Their little vacation home in Port St. Joe is set up perfectly no TV, no WIFI,  just conversation. Port St. Joe is a sleepy little town with the distinctive title of original capital city of the State of Florida. Leslie grew up there. Mark and his family took us to a raw bar. I later found out this is another name for a sea food restaurant.

As I conversed with Mark it struck me that he is very much like his father, my brother. In addition to resembling his father physically, his mannerisms, his focus, his jesters, I felt like I was talking to a younger version of my brother. I have not seen Mark since Mom’s funeral and we did not talk at length at the funeral.

Cheryl came flooding back into my mind. I looked around and in my head she told me that if she could have been there she would have sat near Leslie and the kids to talk and catch up. Family and conversation is very important to her. Sitting with Mark, my sister Joyce and his family, I realized how much I was missing Cheryl. She would have enjoyed this trip very much. And the additional aspect of lived history would have had her telling about this trip over many dinner conversations into the future.

The next day we continued on to visit with Mark’s mother, my sister-in-law, Judy. My brother left this Earth in May of 2020. Sadly, because of the COVID travel restrictions, Cheryl’s inability to travel easily and other factors, we were unable to attend services for my brother Bill. Judy showed Joyce and me a wonderful memory book put together by the funeral services company as well as the program for Bill’s celebration of life. I picked up the book and looking through it had to catch myself as I wanted to turn and show it to Cheryl. (I was missing Cheryl again.)

This was perfect; family, history, hiking, a beach nearby, Judy’s beautiful house at the end.

When I got home in the early evening my son Scott picked me up at the airport. As we rode along my only thought was to drive over and visit Cheryl. She was in bed already so I kissed her goodnight and returned home to eat something and consider various aspects of the trip, my relationship to my own family and enjoy sleeping in my own bed.

Carpe the road trip 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

A Letter

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Dear Cheryl,
Today I got up a little before 7AM. I had coffee, some toast and an orange while working through the Wordle and the Nerdle. I found a reference to Nerdle in an article in the WSJ. You get six chances to solve a math equation. (Something like: 12+35=47) It is my new challenge for the morning coffee experience.
I looked at the list for the day. I had purposely left my journal open to that “Each Day” list I told you about last evening after I watered all the plants. Our finances are okay for now. And some robocaller keeps calling my cellphone from a 651 area code. I did not answer. I also stopped some Amazon subscriptions that I had forgotten to stop when you moved to Bridgeway. I now have enough coffee to last until May, I think. Maybe June.
It is hard to remember to do something(s) when you consume so much of my thought process. I make various attempts to distract myself with other fun things. When I do that I often forget to do other chores that actually need doing.
Also this morning I got out some great northern beans to soak. I am going to make bean soup tonight or early tomorrow. I spent some time looking at various bean soup recipes on the world wide web but ultimately I will probably create my own. I know that you never cared for bean soup because you you were worried about farting. Now that you are there and I am here, I do not concern myself with that dilemma. And I probably will not worry over a specific recipe. Maybe just; the french trinity, a little olive oil, some garlic, the beans and some chicken broth. Season to taste with basil and other spices like cumin for that old sneaker background flavor. I know you are not going to eat any so I can suit my palate.
Some of this I am writing while Michael the hospice case nurse is examining the sore on your bottom and dressing it for you. The aides noted it on your chart info. And Mike is addressing it. If you wonder what he did, he rubbed an antibiotic ointment on the area and put the biggest band-aid on it I have ever seen. I looks like the sores that you rubbed on your butt while sitting on the toilet at home before I got the terry seat covers from Amazon. This sore is right at the end of your tail bone. If you could eat a little more, perhaps you would get more padding there and your tail bone would not be trying to wear through.
I went over to the small cafe that is in the Drake Center for lunch when it looked as though the staff was getting all of you ready for your lunch. I noticed that in the past if I sat with you for lunch or dinner that I would become anxious if you did not eat well. I would try to help my anxiety be helping you to eat and we might even fight if I anxiously awaited putting the next bite of food into your mouth. It was aggravating for you as you worried about disappointing me. It was aggravating to me because I realized that I had removed your last bit of independence. It is better that I feed myself somewhere else without annoying you.
Lunch was good. Something called a chicken club sandwich and some chunky steak fries to go with it. I also got a piece of pineapple upside down cake. I took that home with me for later. My eyes were bigger than my stomach. (I am eating it now while I write this letter to you.)
I paid cash for $9.67 lunch with a $20 bill and marveled as the attendant got out her iPhone to calculate what she owed me for change. I reminisced about teaching rudimentary math and GED topic areas at Southwestern College downtown. The same question popped into my head that popped at least once during every class I taught after the first one there – Why is this so easy for me and hard for other people? And then two things dawned on me – there is no CASH button for her to input how much money I gave to her; there are no numbers on her screen at all, she merely inputs what she sees in front of her (just like McDonald’s). I could tell her the answer but to me, that seemed both impolite and pedantic, so I waited politely.
Afterward we sat together for awhile when we were both finished with our lunches this afternoon. I really enjoyed that. Just sitting and holding hands reminds me of when we were much younger. Do you remember sitting in the March sunshine and holding hands in the woods when the Boy Scouts showed up in that park in Kentucky? That is a great memory of mine.
Know that I love you and I miss you here at home. I wish our situation was different but I also know that you are getting excellent care at BP.
Your loving husband,
Paul

In a Facebook group someone suggested that I write a letter to Cheryl each day. It could be cathartic, she said. Writing and journaling is cathartic. Writing a letter can and does channel ones thoughts. I am writing to her about my day as though she is far away and I want her to be here in my part of the world.

Carpe Diem

Words, Wordle and Anagrams

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An early morning wake-up activity for me is working my way through the Wordle, Quordle and Octordle, although I have little idea how to pronounce the last one. Being non-competitive does not mean that I do not enjoy intrinsic triumphs. I am a fan of crosswords, golf and trivia. All of these can have an externalized competitive setting but primarily these are the player versus the game itself. Nevertheless, words and word games are a fascination to me.

Occasionally working my way through these in the morning sparks other thoughts. An arbitrary word guess – because i am stuck and I have pecked in five letters to discover what my brain thinks about it – will turn into a valid word, often wrong, but valid. Campo was one of those. I am one of those who has several dictionaries and a couple bibles. I tend to look up bible citations and previously unknown words. “Campo” is a grassland plain in South America. (The Spanish and Portuguese got there first so they got to name things, I guess.)

In Octordle the object is to find all eight words in as few guesses as possible. My first two guesses are generally wasted while I hunt for vowels first. Once one of my vowel words showed all green but that was not my lowest score (low scores are best). Another internal fight I have with myself is to focus (or not) on a single word. Sometimes guesses are answers elsewhere. Those are just strategies. Today in one group all five letters where there after my third word entry (first guess). These were “r,a,t,e,h” sort of clumped in a corner grouping. EARTH or HEART are both good guesses here. I picked heart and I was incorrect. An anagram of both words is HATER which was the correct guess.

My brain whorled off into the ether. Heart versus hater. Light versus dark. Without a heart, one cannot live. Without hate not only can one live but life itself is brighter. An anagram is a simple rearrangement of the same letters. Perhaps we need more anagrams in our lives.

Carpe Diem or maybe Carpe Lucem!

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.