caring

Sunday Awake Day

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My cheesy grin

Today is Sunday. When I was here earlier Cheryl was dozing. She had taken her meds earlier and ate a little breakfast. Often when I come over on Sunday afternoon she is alert and  active and talking to someone else who is invisible to me. This day is no exception.

She let me sit with her and hold her hands for a few minutes. Now she has rediscovered a knitted fidget that has beads, a pocket, a loop and buttons. Cheryl discovered this shortly after she moved to Bridgeway Pointe and it seems to keep her interest for long periods. She is struggling with the loop to hook it over the bead and button.

The loop is the most fascinating thing. She loves to loop it around her fingers.

I take every opportunity to hold her hand.

Carpe hand holding Diem.

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

I Expect Too Much

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I do.

I expect Cheryl to do things that she is incapable of and respond with anger when she cannot. My anger is better described as frustration. As I leave her thinking she is headed in the right direction, when I check on her later, I find that she has wandered off in some new direction. Instead of washing her face, she is cleaning the sink.

I expect others or hope that others will see our dilemma and voluntarily help in some way. Those people who do are very few in number. They are a joy to be around.

I do not expect anything from strangers but they open doors or hold the door or jump up to open the door. It is a small thing but useful.

Friends and family are all helpful in their own way. They all have lives. They all have other interests. It is self centered of me to expect them to think about us.

As we travel this road of Parkinson and related dementia changing expectations is necessary. If you do not make adjustments all that can be found is perpetual disappointment.

Perpetual disappointment leads to cynicism. Conversation becomes sarcastic. The sarcasm is wasted on dementia patients. They will only detect the underlying anger.

Cheryl uses her left side successfully only when she concentrates. Perhaps specific marching encouragement will help – left foot, right foot, left foot, and on.

If I change my expectation for her walking, perhaps I can help her improve.

If I change my expectations of family and friends perhaps I can find more happiness and less disappointment.

Perhaps I need to change my expectations.

Carpe Diem.

Heart and Hater

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This morning after I finished my old people chair yoga and relaxed for a bit in the morning quiet with the daily Wordle, I found that four of the five letters were contained in my search for vowel words. Those four letters led me to guess heart which contains all the letters but in the wrong order. The correct answer is hater.

It stuck me as sad that hater is an anagram of heart. These are two very different emotions.

In other news stories over the weekend a gentleman expressed chagrin at the failure of smaller local newspapers. His point was that lack of local fourth estate oversight allows corruption to creep into local government and institutions. The national news organizations will fill the gap but never tell the local story. National issues, although real, affect little in our local lives but tend to polarize our conversation. There is support for this in my home town of Cincinnati.

Indeed the last of the local newspapers, the Enquirer, is a sort of ghost paper. It is part of the USA Today paper equivalent of cable news. The sports section is often more pages than the rest of the paper. Whether it it is causation or merely correlation is probably unknown without more study. Nevertheless three city council folks fell prey to the lure of really fine campaign donations by developers vying for attention. It is sad really. And no doubt these folks thought that they were helping the community. No local news hounds were asking those embarrassing questions that make public figures think about issues in a different light.

Heart versus hater.

The combination of Parkinson and Lewey body dementia some times combines to embarrass Cheryl in the most private of ways. I hate the diseases and what has been taken from her. My heart goes out to her and wishes to save her from any embarrassing moments. Often I fail. No amount of planning for contingencies can prevent every disaster. Incontinence issues can be a disaster or a merely a learning experience. I can be a disease hater and take heart as I help her through it. I have learned to not hate myself for missing things that in retrospect seem obvious should have been planned for things. React and respond.

As Cheryl often reminds me, it’s an adventure. It is! I can hope that she will give me a hint that she needs extra help sometimes but I realize that it is not part of her persona to do so. She was raised to not be a burden and no amount for talking from me will convince her that to me she is not burden. I gave her my heart almost sixty years ago and she is still very private. I feel intrusive when I help her probably because I do it without her permission. I can not stand to watch her struggle. We are too close. I am too much in love with her to do otherwise. Occasionally it causes conflict.

I often write Carpe Diem.  More importantly seize every opportunity to learn and grow.

Our little trip to Florida provides many of those. It is an adventure. It is an opportunity to grow. It swells your heart. I feel any hateful feelings for the disease dissipate for now.

Onward. Carpe Diem.

Sometimes Tears Just Come

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There are many good people doing unselfish things all the time. Their day is not occupied with imposing their unwanted advice on others. They accept others where they are and go to help if possible and if the help is wanted. Stories of these caregivers are prevalent on the TV news lately as the Covid-19 pandemonium rages on.

The stories are numerous and I find tears in my eyes as I listen to them. The God of love dwells in these people. The God of love dwells in us all if we let Him.

This morning there was a story about a football player working in a long term care facility. He plays football for the Kansas City team that recently won the Superbowl. Notoriety of that achievement is certainly why the story made the CBS news this Saturday morning but the story is an excellent one about a young man that has found a calling greater that himself.

During his time as a player for KC, he was able to complete his studies to become a doctor. Sitting at home, his post-superbowl vacation cut short by a world pandemic, he looked for ways to help. He consulted with his team and coach whose wife happened to be a graduate of the same medical school he attended in the off season while playing for KC. Although he has not been able to do a residency and therefore cannot work in a hospital, he has found a position as a nurse/doctor/aide/janitor (his term) at a long term care facility in Montreal were he lives. He spoke about his caring for the patients in the facility and its humbling affect on his day to day experience.

Tears came to my eyes as I realized how his heart had overridden his passion for football and he struggled to keep his young family safe and healthy while providing care for the people in long term care. Truly love is in his heart. He will sit out the 2020 season to provide help and care to those in need.

In another short piece, a restaurateur is running a food pantry for his neighborhood in New York. There have been many of these. I do not work in the restaurant business and never did but my old company made kitchen equipment and although I have never cooked commercially, those who do have a passion that oozes into their conversation and it is hard to ignore. The complicated activity of getting a new small restaurant up and running is brought to a screeching halt by health concerns of the pandemic.

It seems that many small trendy restaurants in NY have converted themselves into a form of food pantry and, now that the social scene is carefully opening in that state, a food pantry / socially distanced restaurant. Their clientele are supporting that love of community.

Closer to home, my daughter is a teacher doing her best entertain and teach science to her students this new school year in Wilmington, OH. Teachers are a dedicated bunch that give of themselves to their students without questions about what will come from the pandemonium. Schools can be pandemonium without any input from a pandemic.

Late in life I pursued a change in career into teaching. It is very hard work. Hard in the sense that if you taught math and science as I did, you ponder why is that easy for me and why do the students not get it? A lot of time spent in self analysis and then chasing different clever ways of lighting a passion in your students for your subject consume many off hours.

Many teachers are very good at creating interest and even passion in their students. We have all had one or two special ones in our lives. Truly love is in their hearts when they are helping the kiddos and adults to learn and grow.

Just simply wearing a mask to protect others shows love in one’s heart. As the pandemic appears to have no end in sight the medical folks have come to the belief that for now slowing the spread of the virus in our open society is up to us. Through the noise of politics, the message is coming clearer, wearing a mask indoors in public spaces is not a perfect solution but does affect the spread of virus particles.

Initially it became a political football and somehow became associated with anti-patriotism. Puzzling to many. A pariah to others who are certain their rights are being violated. Most people wear clothing in public. Love is in the heart of those wearing a mask without complaint and those who wear one with complaint.

Advocating for loved ones in hospital is difficult without a pandemic. New protocols within hospitals that are coping as best they can have inhibited patient’s families from gaining access and advocating for their loved one. In these difficult times the avocation is physically distanced over a phone line. Love is in the heart of those who accept the reality that doctors and nurses in hospital facilities are doing their best to keep families informed of progress or not of their loved ones.

It is a tragic even when someone passes from the onslaught of this previously unknown virus. Perhaps we as a society could have responded better than we have. Perhaps not. We all can find love in our hearts to be with those who are suffering and with those who help them through the physical suffering.

My sister-in-law is caring for small children so parents can work. She has done this throughout her life. First with her own children and friends children and then grandchildren, nieces and nephews, her love in her heart for these little ones shines brightly.

It is a calling and a ministry. She would probably not view it this way but that is how I view it from afar. She has love for the children and it shows.

I spend much of my day giving comfort and care to the Parkinson’s sufferer that lives with me. Cheryl’s disease progressed very slowly for a decade or so. Lately the changes are still small and subtle but somehow more intense.

She feels an anxiety about losing touch with friends and family as her brain feels the effects of Lewy bodies. Her sister is in hospital in Florida suffering from the Covid-19 virus. Her sister who shares her PD and other complications of myasthenia gravis along with diabetes has complications that require use of a ventilator. The whole family is worried. Cheryl recently started talking to her sister Jan at night. Cheryl occasionally sees her sister Jan here with us fleetingly and she asks me where did she go?

As children they were close. Close in age. Close in that they shared the same double bed for years. Close now because she is worried about her health.

Last year Cheryl pursued in a big way the Sunflower Rev It Up for Parkinson’s fundraising event. Jan came to town to walk with her and be a part of the event. As sisters they are close and yet over the years, distance and time has separated them somewhat as happens in families. Now it seems she feels her love in her heart for her sister more somehow.

Love is all around us. Take the time to feel it.