wisdom

Longing for a Life

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Some days when I look at family pictures I find myself longing for a different life. I long for a life without Parkinson. Often it is a deep deep longing on those days when Cheryl is struggling and I understand she is struggling and I have no ability to help without making her feel helpless. Her dementia pattern seems to inhibit her from asking for any assistance or realizing that she needs assistance whether it is me holding her up so that she can steady herself or simply handing her a tissue to blow her nose or blot her mouth when the drool comes.

Care partners run out of gas too. On most days her memory seems to work for about 10 minutes. ( That may be a sarcastic quip.) On others the loss of the discussion is much shorter than that. On those days I become frustrated which manifests as a louder whiny voice and sounds like anger. It sounds like anger even to me. Cheryl responds with anger and I suddenly remember where her mind is. It is very easy to forget she is still Cheryl. Repetition helps her know what to do or where to go or what she thinks she needs to do. Nevertheless it can be frustrating.

I started writing this short essay a couple days ago when I was feeling down? lost? tired of it all? – defeated? – maybe all of these. Sometimes I just wonder what if?

I doubt that anyone dealing with a partner in life that has a chronic disease wishes for their current existence. Endurance and strength to get through it all is all I ever hope for.

Looking back on the past few years, the covid shutdown, the covid start-back-up, the lifestyle/work style changes to society, the meanness of social media politics, I realize that Cheryl and I do not have it so bad. I wish her dementia to be gone but it is not – except for the few moments early after she awakens. She will look at me with tired eyes and smile. It lifts my heart and soul when that happens.

I still wonder “what if?” I just do not let it control me.

Breathe in, breathe out, move on. — Jimmy Buffet

GULF SHORES, AL – JULY 11: Musician Jimmy Buffett performs onstage at Jimmy Buffett & Friends: Live from the Gulf Coast, a concert presented by CMT at on the beach on July 11, 2010 in Gulf Shores, Alabama. (Photo by Rick Diamond/Getty Images for CMT)

Picture stolen from NPR.

Carpe Diem.

Doctors Week is Tiring

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This week for lack of a better description was doctors’ week. We saw both our personal care physician and Cheryl’s neurologist a movement disorders specialist. He made some minor adjustments in her meds schedule and added one new one to help with anxiety and perhaps some depression he detected by interviewing Cheryl.

Prior to these visits over the past couple days Cheryl slept poorly. This morning she is sleeping in. She was relieved last night when I helped to bed with the fact that we had nowhere to go today. We had no doctor visits. She did not have to be on her toes to answer questions about how she feels that could make her feel sad. I think she is very aware that she can cry easily and is unable to control that response. Her neurologist is very gentle and recognizes her disease’s progression in her body.

It was very hard to maintain her showtime persona yesterday and the day before. I am gladdened by the fact that it is over for a few months.

I helped her up out of bed and into the kitchen for breakfast but I was premature. She kept her eyes closed in the kitchen. She seemed uninterested in breakfast after all. I asked her if she wanted to sit in the lounge chair and doze for a bit. She did.

I talked to the physical therapy folk to schedule the PT recommended by her neurologist. Eventually she awakened as I put a pillow under her left side because she was drooping that way in the lounger.

I rolled her back to breakfast. She ate and looked at the paper. She did not work the puzzles.

I talked to my Portland sister. She often makes me rethink things. The doctor has diagnosed Cheryl with some mild anxiety and perhaps depression. The brain floats in a sea of proteins and chemicals. Parkinson messes with that. I do not always recognize my own needs as a care partner.

The next phase begins.

Carpe Diem.

An Anagram for Heart

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I am happy to learn things wherever they come from. This morning working on the Wordle from the NYT I happily learned that heart is an anagram for earth. It makes me think.

I have often thought that I might have a touch of dyslexia. I have thought this ever since I learned what dyslexia is probably sixty years ago.

Early in our married life I would say that I have date dyslexia. By this I meant that although I knew exactly when Cheryl’s birthday is, I felt no urgency to react to the fact that my wife’s birthday was coming up in a few days. That is probably not the best example but it is one that I used often.

Maybe it is just numbers that somehow fascinate me. Even though they are in order I do not look ahead on the line.

Riding my bike today I stopped to take a picture of a plant that I did not know. A friend told me about “Seek” which is an app that identifies flora and fauna that you take a picture of. It works great when the fauna sit still.

Flora are easier. I found an American Black Elderberry. A quick search of Wikipedia revealed that The fruits can be used to make wine and jelly. I think there is a song that mentions elderberry wine.

One never knows where a snippet of knowledge will come from. The unripe fruit contains cyanogenic compounds but less so than apples. The Iroquois used the inner bark to treat toothache.

Enjoy the Earth around you.

Carpe Diem.

The Meaning of it All

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This morning after Tony Decouple told us that they were following news of what could become news later today, I turned him off. Perhaps in the future Ronald and Donald will fight it out in the abortion war staged for prime time but how will that solve the debt crisis? A cacophony of unimportant drivel assails one’s ears on the commercial news broadcasts.

Social media is no more informative.

“That is ….. on so many different levels” – How does one interpret that omment? Tony knowingly nods his head and Nate agrees. Buy this thing through our Deals and keep miscellaneous stuff from falling in the crack between the console and the seat. Try not getting it out while the car is moving at fifty miles an hour. Why is there a crack? Remember bench seats? Romantic.

As humans we interpret what we hear against our education and prior knowledge. What is important to us may not be important to others. Unless we can construct a way to make it important to others.

Guns are bad. Guns are good. Mental health is bad. Mental health is good. Take this drug and remove fat. Take this drug to make type two diabetes to go away. Take this drug to combat the effects of taking that drug. Take this drug and be stronger, stiffer and last longer; this one is not advertised. Men just know about it. Take this drug and live nine months longer even though you will die anyway. There is a thought. We are all going to die. No one gets out of here alive.

Bent carrot disease has a patron. His name is Peyronie. Cancer has Hodgkin. Dementia has both Lewey and Alzheimer. Movement has Parkinson.

It is going to warm up to 80 degrees today but tomorrow it going to be much colder, only 72 degrees. Much colder is a modifier I probably would not have used but Tara, the weather interpreter, has to be heard above the other unimportant noise. Why have television stations devoted so much money and technology to something that is essentially a PowerPoint presentation?

I wonder how many people change their drive to work based on the traffic report? That used to come via a reporter in a helicopter who was barely able to talk over the top of the engine noise and the wop-wop of the blades. The internet has made so many things safer. No more flying in the fog. I am so glad Al invented the internet.

What does it all mean? A fusillade of information unimportant for living daily life bombards us all day long.

Is it meaningless?

Carpe Diem.

Making it Through

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About 6 or 7 o’clock in the evening is prime anxiety time for me. I start to carefully assess Cheryl and look for things for us to do together to use up the evening. I spend too much time obsessing about what might come. I could wait and see instead of obsess and fret.

Last evening after Cheryl’s rough day I started to think this way again. As I wrote the paragraph above I thought to myself – you know what? – que sera sera, dude! Foohhget about it! Let’s just see where this all goes.

Later we went to bed like normal. I read for awhile. She was still awake when I came to bed. I helped her roll over. Ultimately she fell asleep.

Huh?

We got through it.

Perhaps it is time for me to let God do his thing.

Carpe Diem.

Inspiration in Song and Poetry

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I often find hope and inspiration in song and poetry. Today while reading blogs of others I tripped over this from Filosofa’s Word. Kermit and his rainbow song.

To me and I suppose many, poetry and song are the same thing. A song with a melody that is catchy enables a poor poem to live. A sweet expressive poem often needs no accompaniment. Sometimes the music is first and inspires the poem. Sometimes the poem is first and inspires the melody.

A favorite poem Desiderata sort of sums up life. It has no metre. It follows a prose format. I find it to be calming to my heart. I have not read it for a while but reading Jill’s blog page about caused me to do that today.

Carpe Diem and keep connected to everyone around you.

More on Parkie Time

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There is lots of discussion about apathy and Parkinson. This morning I decided that Parkinson merely enabled Cheryl’s brain with a different sense of urgency or importance. Perhaps I needed to embrace that.

Last night as I coaxed her to bed her impostor syndrome was strong. We drove around for a few minutes and looked at the Christmas decorations while we “drove home”. It usually works and she thinks she is home. It did not work completely that night but she seemed to accept the fact that she was very tired and needed to rest. She went to bed with pajamas on the bottom and her normal daytime shirt on the top (just in case).

In the morning she slept late. When I woke her and got her going I pointed out that she had about two hours until her exercise class started, so she had to move it along unless she did not want to go. She refused to be speeded up and responded that I have been late before. She thinks exercise is important and wants to do it and enjoys it once she gets started. I know that it helps her too. But my sense of urgency and lateness is much different than hers.

I shifted my schedule to agree with her parkie time. My urgency evaporated along with my stress associated with getting her moving.

Small adjustments reduce stress

Carpe late Diem.

Sometimes people are wonderful – Say Thanks!

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Sometimes people you know do things for you purely from love and kindness and empathy. Say thanks to them. Often.

Dear Nancy,

Your gift of these words,

“ YOUR CROSS – The everlasting God has in His wisdom foreseen from eternity the cross that He now presents to you as a gift from His inmost Heart. This cross He now sends you He has considered with His all-knowing eyes, understood with His Divine mind, tested with His wise justice, warmed with loving arms and weighed with His own hands to see that it be not one inch too large and not one ounce too heavy for you. He has blessed it with His Holy Name, anointed it with His grace, perfumed it with His consolation, taken one last glance at you and your courage, and then sent it to you from heaven, a special greeting from God to you, an alms of the all-merciful love of God.”

from St. Francis de Sales mean more to me than you can ever know. I read this over and over several times.

This journey that appeared in front of Cheryl and me – Parkinson’s disease – occasionally tears my heart to shreds. At first, in the early years, she was the same as the girl I married many years ago. Recently, over the last two to three years I can detect a combination of mental deteriorations that often sadden me to the point where I get a powerful feeling of overwhelming dread. Lately I am greatly concerned that it will be beyond my ability to care for her in the not-so-distant future.

“… not one inch too large and not one ounce too heavy for you.” Believe me sincerely when I say that I wish I had your deep unbridled faith in something beyond you. And thank you for believing that I have that same faith.

I experience a wide range of emotional feelings mostly centered around caring for Cheryl. Sometimes it borders on depression. Sometimes I feel genuine rage and anger. Sometimes I envy others’ perceived good health. Sometimes I am deeply disappointed that Cheryl and I cannot do many of the things we used to greatly enjoy – she and I used to hike long distances in the woods, for example. And then sometimes I will read a story, essay or prayer such as the one you sent me which calms my heart. The essay or prayer will bring me back to earth and re-establish life’s meaning.

There’s a little story in your downstairs bathroom about foot prints in the sand. I am thinking of that now as I have re-read your card for the umpteenth time today and I listen to Cheryl talk to herself in the next room while she works on a sewing project for the grandsons for Christmas. (Her good periods are short and come and go quickly.)

I have come to believe that my purpose in being is to care for Cheryl and to fend off those who would take advantage of her weakened mind and frail physical condition. I probably take on too much responsibility for success or failure in that regard. I have not opened my heart completely someone beyond me to help with that. I admire your ability to find strength in your faith. I have not found that yet. Perhaps one day, but, for now I am still working on it.

Thanks once again for thinking of me and pointing out that He never gives one too much to bear.

Paul

Giving thanks to someone is humbling. And, though, I do not often use the phrase – I am blessed – My sister-in-law, Nancy, is there to remind me that I am in fact blessed but then she has been though a similar experience. She has the wisdom of hind sight and has chosen to look forward.