The Art of Marriage and Care Partnering

An empathetic and caring atmosphere for your partner with Parkinson and dementia, like a good marriage, must be created. In the art of marriage the little things are the big things. The same is true for care partnering. Small things are meaningful to both.

It is never being too old to hold hands. Physical touch is a comfort. Holding hands and helping someone you love up a step or into the car or into a chair at the restaurant is a sign of love. Doing those things without complaint and without request is a sign of grace. Look for grace in your life.

Remembering to say, “I love you” at least once each day to a spouse who is also graced with a chronic disease is reassuring. She did not ask for this disease. Reassure her that she is not an annoyance to you by saying this often. As a care partner there will be times when you do not feel that way in that moment, breathe deep and remember how it was and use those thoughts to see her as she is now.

Never go to sleep angry. Anger is available every day. It has no place in the bedroom at night. (This may be the hardest lesson to learn.) Just remember that everything seems worse at night. Sleep later into the morning hours. There is always light after the darkness.

Discussing and having a mutual sense of values and common objectives that are important to the partner who is burdened with Parkinson is essential for helping her to manage the disease. Occasionally anxiety creeps into my thoughts and voice. When that happens I become a naggy care pusher and not a helpful encouraging care partner. If you can, resist becoming a naggy care pusher.

We are standing together facing the world. This is a joint effort. (A platitude – many hands make for light work.) Care partnering is forming a circle of love that gathers in the whole family. It gathers in your circle of friends. It affects the person with Parkinson directly both physically and sometimes mentally. Parkinson is a change. Parkinson is not a purgatory.

Care partnering is speaking words of appreciation and demonstrating gratitude in thoughtful ways. These words are exchanged in both directions. These words are not expected. These words are freely given.

Care-giving has the capacity to forgive and forget. Give each other an atmosphere in which each can grow. Share your thoughts and ideas with each other.

Find room for the things of the spirit. And when the spirit moves, search for the good and the beautiful. Keep on the lookout for those “Aha” moments to learn from.

As it is with marriage, care-giving is not only partnering with the right helpmate. It is being the right partner. Parkinson’s sucks is the phrase Michael J. Fox uses. By helping each other PD sucks less.

Carpe Diem.

MMXXII and Enjoy the Moment

Tim Scott has a new book. It has just been published so he is making the rounds promoting his new effort. Perhaps merely because he is intelligent and half of the Senate representation from South Carolina but probably also because he is black and Republican, the CBS Morning newsies cannot resist asking questions that have little to do with his book.

To a question about whether he was considering a run for the Presidency of the U. S. he responded, “… You shouldn’t worry what’s next if you haven’t finished what’s now.” He gets my new life philosophy.

Carpe Diem. Latin for seize the day. I use it to end my little posts about various issues Cheryl is dealing with but it is also a reminder to me to stay in the present. Do not linger in lamentation over perceived losses. Stay focused on the now. But do not get so narrow minded that everything has to be “just so.” It can be good enough. (An engineer would add – for who it’s for.)

Do not become anxious about the future unless you are making a list of stuff to take care of before leaving on an extended trip. Worrying about what is to come is of no useful purpose. Plan and if God laughs at you, laugh with Him.

Carpe Diem to me also means stay in the moment. Enjoy this moment. Take a selfie if you want to have a remembrance in some future time. I personally do not understand the selfie thing. Most of the selfies I see on Facebook do not give one a sense of where one is. Occasionally there is a glimpse of beach or Mickey Mouse ears but often the background is some drinking establishment which could be anywhere in the world. I have also noticed that the camera aficionados in my family point the camera away from themselves. Me included.

Cheryl found this image of my youngest sister, Laura and her husband Jeff. They look very happy. Laura looks radiant. They are enjoying the moment. I maintain it is impossible to look this happy and not be happy in your soul.

This picture was made pre-smart phone. It is therefore not a selfie. Many years ago I visited with my west coast sister in Seattle. I was working on a job farther north in Vancouver BC. Walking down Market St. I was nearly clothes-lined by some woman with her selfie stick. It was the first time I had seen a selfie stick. (Oh, I have wandered off into the weeds.)

Carpe Diem.

Carpe Diem

I invited Cheryl and me to David’s house this afternoon. It is the first sunny one in a week or so. The following group of text messages ensued.

I concur. This is gonna be good.

Carpe sunny day Diem.

An August Evening

Rainy days in August have produced sundowner’s confusion and dementia. On this particular day it seems a bit worse.

Cheryl has had a particularly busy week. Two physical therapy visits and an exercise class happened this week. On Monday evening our HOA board had a meeting to discuss maintenance schedules and what new projects we could take on with the money on hand. Jane came across the hall and sat with Cheryl on our back porch while I attended. (Jane is a wonderful neighbor.)

On anything goes pizza Tuesday we had dinner with our neighbor Jane as usual and in addition our new upstairs neighbor Joe joined us. Joe moved into the front condo over the garage spaces. Much of getting to know you conversation happened. Cheryl knew of a woman which she attended high school with who had the same last name. Her name was Kathy. As it turned out she was Joe’s younger sister. Jane’s husband used to play in several bands when he was still alive many years ago and Joe’s last name was familiar to her also. As the story developed it became apparent that her husband John had played in a band with Joe’s father.

It was a great getting-to-know-the-neighbor conversation. There were lots of memories for Joe and from Jane and Cheryl. When we got home Cheryl was exhausted.

Wednesday, I had arranged for my cousin-in-law, Linda, to come and take Cheryl to her physical therapy appointment. I went to visit the lab of a local community college program that I am still involved with. That facility is twenty minutes or so down the highway and I was gone for about two hours. We later met back up in a local diner for lunch.

Thursday it was my intention to attend a exercise-for-care-partners class at Parkinson Community Fitness after Cheryl’s twelve pm exercise class. I had previously arranged for my daughter to pick up her mom so that Cheryl would not have to stay. I found out my class was canceled at the last minute so when Anna showed up we all went to lunch. Our grandson Max was with his mom and he showed off his new laptop he purchased for college. He will start in a couple weeks.

I had hoped to ride my bike for a bit so Anna and Max remained with Cheryl. Alas, the weather did not cooperate. As I entered our condo Anna was helping her mom sort coins. These had been residing on the dining room table for several days but the project was several weeks old. Cheryl found them back in her office a few days ago. Cheryl told her daughter that when they were finished they would give the coins to her dad. She used to help her dad roll coins from his gas station business many years ago.

Max was frustrated with his new laptop. The camera no longer worked. What ensued afterward was a chat via the internet with some Microsoft expert and ultimately a complete reload of the operating system. That seemed extreme to me but I am an old retired electrical guy whose been fooling around with systems, software and computers for fifty years or so. We are living in a new age now. Ultimately it was discovered that Lenovo had placed a privacy slider to cover the camera on the upper edge of the case. It was a mechanical failure or an operational one depending on who is characterizing the action.

On Friday I was still hoping to ride my bike and the weather was still not cooperating. Cindy came anyway And I went to get a haircut and run a few other errands. I returned about an hour later.

This whole week was generally gray and overcast. It was not gloomy like the wintertime but gray and rainy nevertheless. It is still rainy and poopy outside as I write this.

The rest of the day was filled with visions and stories of her family. She was looking for Scott. Later in the evening she told me a story about Easter eggs, coloring them and Mavis. She eventually called our daughter-in-law Mavis to ask about what her objection was to coloring Easter eggs.

Earlier in the evening she asked, “Where is Ken?” I told her that Ken was probably home but I was not sure. She should call him and talk to him. She did not take that suggestion.

It was a frustrating afternoon and evening for me. Later I realized after she had exhausted herself with a very busy sundowner episode that for the first time this week only I was here with her and she could relax and let all that out.

As she laid in the bed she asked me to make sure the kids all got home okay. This morning she slept until 10 am.

Carpe Diem.

EEEEke, Get Outta Here!

House centipedes occasionally wander into the house. This morning one went to its demise after scouting for prey in our kitchen. If you read the link to family handyman at the beginning it tells you that you probably should not kill them. Cheryl did not read that article.

Watching that activity, I thought about it from the bug’s point of view…

bug – “doddy-oat doe” Humming to itself. This looks like a good place to hunt as it moves into lighted part of the kitchen floor.

Cheryl – “Eeeeke! Get outta here you!” Lot’s of thumps and bumps while she tries to get up.

bug – “Holy cow there must be some kinda earthquake going on.”, it thinks. It freezes to check its surroundings.

Paul – “What’s happening in there?”

Cheryl – “There’s one of those thousand leggers.” As I come into the kitchen she says, “There it is!”, pointing to the insect hiding under the base cabinet front. I grabbed the fly swatter hanging on the pantry door and handed it to her as Mr. Centipede scampered out of harm’s way under the refrigerator.

Paul – “Here use this it will work better.”

The centipede stayed under the fridge for a few minutes searching for prey and weighing options for escape. Soon the cry erupted, “There you are!” WHACK. WHACK WHACK.

bug – “Damn. Crazy woman. What is up with you? I’m outta here.” It retreated back under the fridge and Cheryl shoved the fly swatter under the front of the refrigerator in an effort to chase the bug out from underneath. It reappeared to the left when Cheryl was probing to the right. She whacked at it some more as it attempted to scurry away.

bug – ” Ow, ow ow. OUCH. That hurts. Why are y…” Centipedes are delicate creatures and tend to disintegrate with a direct hit. This one did just that.

Gone to centipede heaven as dust.

Cheryl – “Got it!”

There is a rule in our house. No bug of any type may live there. No benefit may ameliorate the absoluteness of none.

I laugh now. It is entertaining to watch. I used to worry because of Cheryl’s balance issues. I worried that she would fall down chasing a bug across the floor. And then I realized that often her Parkinson disappeared for a bit. The necessity to cause death to all bugs overrode any Parkinson. In fact she is pretty good at mashing ants with the tip of her cane or the tip of a walker leg. The only thing that needs improvement is her reaction time.

Bug whacking is also pretty good exercise. She will come right out of the chair to bush whack a bug.

Carpe Diem.

Donut Day

It was going to be doughnut day and I forgot. Alas. Woe is me.

Going down this sometimes bumpy, sometimes smooth road of Parkinson, I hunt for ways to make memories. Happy memories. You have to see how Cheryl’s face lights up when there are doughnuts for breakfast. You will know then why getting up early to go find doughnuts is a special memory. Cheerios will not go nearly as far to creation of happiness.

Skeptics will report that doughnuts are not good food. Some will even report that doughnuts are bad for you. Others will discuss yogurt and oat bran and report their studied benefits to those I say malarkey, nonsense and bovine feces. Nothing, absolutely nothing compares to a lightly textured butter enhanced wheat dough gently lofted by yeast plants straining for full growth finished in deep oil at the proper temperature and upon proper cooling, coated with a just-right glaze of sugary vanilla. (I know you can taste it. That is because I am eating one while writing. Darn, sugar on the keyboard.)

I offer only condolences to those with celiac disease. Gluten free donuts are a sad replacement. I offer condolences to those who are lactose intolerant also for they are doomed to enjoy margarine and vegetable oil.

Nevertheless as we returned home from our dinner at a diner and a walk around the park last night, Cheryl expressed an interest in having doughnuts for breakfast. I agreed but at 8 PM those are hard to find and when you do there is little selection. I said I would get up early and go find some. Alas, this morning that thought had not remained with me overnight.

Cheryl got up a little after 8 with no help from me. I heard her stirring in the bathroom and went to be an annoying helicopter care partner. All was well. I asked her what she wanted for breakfast to which she replied, doughnuts! I was initially crestfallen as I had forgotten our discussion. I put on clothing and went to our local IGA to see what was still available in their Busken Bakery cabinet. Fortunately for me the selection still contained kettle danish which is a favorite of hers. I will eat any combination of sugar and wheat dough. No favorites for me, although, my grandson once brought me a maple iced long john which a strip of bacon on top. Yummy. (When you are in Chicago next time find some “fried dough” — fattening but exquisite.)

The day was saved. The crisis was averted. Dip-able things appeared next to my coffee. Perhaps I will make a new pot.

Carpe Diem.

It is August

Cheryl asked me – When is Thanksgiving? I told her the last week in November.  We moved from there to me explaining it was still four months away. We were on the way to two appointments yesterday. It was earlier than I would typically schedule anything for Cheryl but in a weak moment on the phone with a scheduler who was trying to consolidate trips, I gave in.

Today she is part of a research study. The MOCA assessment is part of the study.  There are many other instruments used. Some of these are poorly designed but in a way that is part of the assessment overall.

Physical assessment involves weak side motion testing. Resting tremors in different positions. The neurologist researcher wanted to test her walking but she was unable to do that unaided. After all of this Cheryl donated a blood sample and a urine sample.

We went from there to a scheduled visit with the nurse practitioner who works with her movement specialist. Maureen says that physically Cheryl assesses the same as when she last saw her in January.

She complained of tiredness afterward so we went home instead of to lunch somewhere. Cheryl thanked me for taking her to all her appointments and making sure she did not miss any.

Carpe stabilized Diem.