Uncategorized

Religion and Spirituality

Posted by

1

Men create religion. Spirituality comes from within.

Men make religion. Why is that? Religion of sport. Religion of work. Religion of God. Religion of politic. Religion of drink. Religion of food. Religion of country. A conscientious effort to pursue a topic to the penultimate.

Edie is a Facebook contributer to group directed towards caregivers supporting people who are dealing with Parkinson’s disease. She posted this prayer to the group a few days ago.

A Wife’s Prayer (in the life of a Caregiver) By:Edie Kynard 02/22/20

Lord, as we face this day together, please help me to handle each moment with strength. 

May my attitude be positive, my hands gentle when administering help and my heart full of  compassion.

Please lift me up when I am down, show me the humor in awkward situations and nudge me when I lack understanding.

Send me aha moments for us to grow through, messages  from above for us to share and empathy so that I can step into his shoes and readjust my attitude.

I’ve asked for a lot Lord, but the most important  is my request for forgiveness when, in human error, I tread upon his heart. 

So please …keep my feet planted in solid faith so that I can sow seeds of kindness and not weeds of grumbling toward the many tasks at hand.

Fill me with wisdom so that when we walk this journey together we don’t get lost along the way.

In Your holy name, Amen.

I don’t know where I’m going from here, but I am taking the spirit of this prayer with me. Many tasks. Easy to get lost. Helping Cheryl to deal with Parkinson’s forces me to look inside and reflect. And I wonder what purpose this disease has.

Perhaps a discovery of what love is and what it is not?

Chocolate for Breakfast

Posted by

0

All of us have particular likes and dislikes. Certain comfort foods are associate with meals at certain times of day.

What about chocolate for breakfast?

And sometimes you have to cry. Sometimes you have to tease. Sometimes you grieve for a past life. You may remember it differently from what actually was but the nostalgia is real.

Or you could have chocolate for breakfast.

In the now in the present you keep pushing. Sometimes you laugh. There is joy if you look for it. You can look away to the past.

Or you could have chocolate for breakfast.

Favorite things, favorite foods, favorite places attract you to the old times. Do not disparage the old times. Do not despair of the present times. New things are new favorite things.

Like you could have chocolate for breakfast.

With love all things are possible or so it is said. Chronic disease in a loved one is an opportunity for a deeper love. A deeper truer attachment to one’s own self and the one you love.

It may turn out that you love chocolate for breakfast.

Good times are not all in the past. Good times are now. Merely time is required for the nostalgic longings. Can the circular thoughts coming with age and dreary-ness cause a view of one’s own rear?

And destroy the idea of chocolate for breakfast?

Or is the idea of chocolate for breakfast a metaphor for youth and vigor? Count Chocula a satisfactory conclusion? Or a new beginning. Of something precious. Of someone precocious

Enough to try chocolate for breakfast?

Sewing Camp

Posted by

0

I truly do not want to learn how to sew, be a seamstress, or do other related crafts. I am male and in my 70’s. I do not need that. And yet I must.

That is silly attitude. When you have spent 50 years with someone occasionally you will disagree with her. When you love someone so deeply that you are willing to turn away from your own self-interest to take care of her during a chronic illness it is possible to smother her in the care-giving.

Learn how to sew. Just do it. Do not arrogantly display your new found skill set. You are the helper. You are the holder of pins. You are the threader of bobbins. You are the crimper of snaps. You know where to find interfacing in the fabric store. Be proud that you know what interfacing is! Do not imagine you are in charge of project scheduling. The illness’s symptoms will set the schedule. Relax. Enjoy the moment.

Lord have mercy! It is easy to have a fight when your lover, wife, partner, mother of your children, your rock, the person who shares your vision, the center of your universe is gifted with a chronic illness. Parkinson’s disease is not always debilitating but it can be and it can be so for the one who has it and the one is helping the one who has it. It can be exhausting.

In the morning she is way off. Movement is hard. Fingers are numb. She has finally fallen asleep after a restless night, when I get her up so she is not way off her medication schedule, she is angry with me and with herself. As the day progresses she improves but I have not moved out of care-giving mode. To her it becomes smothering. An argument ensues over who will cook dinner.

I have to give in. She cooks dinner. It is like old times when we were younger. She is and always was a good cook. Comfort food. I am more experimental which occasionally turns disastrous. I really miss the old times occasionally. But it is also good to enjoy the present.

Perhaps, just perhaps, I need to enjoy the moment.

Family Connections Lost

Posted by

0

I have kept this card for several days now, most of a month. It is sad. Aunt Ruth passed from this world in March of 2019. She was the last of Joe and Adelaide Dwenger’s five children. Margaret, Virginia, Robert, Jean, Ruth was the last.

It is sad that Ruth died. I did not visit her during the last years of her life. Several times during the last years of Mom’s life I asked her if she wanted to talk to her sister. Ruth was in some sort assisted living arrangement in New Mexico at the time. Later she moved to Colorado near her daughter Susan. Mom was not interested. Not interested that day or ever — I am not sure what she meant when she said no.

Sad for a different reason. Some families scatter to the wind chasing jobs, ambitions, spouses and life. They lose touch with each other. There is in some cultures the thought that cousins and siblings have a built in friendship and closeness. Sadly this is not always true.

Some families have developed a disconnect, a nonchalant attitude toward connection. Some others developed a feeling akin to hatred early and split soon after. Some children lose connection with their parents and through that lose connection with their siblings. However it happens, they split and connection is gone.

Family ties are not as strong as many perceive. Perhaps if they were technology would not be as advanced as it is. Maybe there would be no Facebook, no Snapchat, no TicToc, no social media. Perhaps that would be a good thing. Or not.

Sometimes people are wonderful – Say Thanks!

Posted by

0

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.

Facts Do Not Matter

Posted by

0

What matters is how you feel [Scott Adams].

I suppose that is a fact. I tripped over this quote in a book I was reading. Writing this now it is amusing to me that the title of the book is not memorable. This quote is. The title and next line are the whole quote.

Feel has a double entendre here to me. Feel physically? What do you think about “it”? What are the facts? Why are they facts and not opinion? Such a conundrum.

Dream and Sleep

Posted by

0

Cheryl: Those women are all putting on their bathing suits. I’m not going to do that. Mine doesn’t fit anymore. I’m coming back to bed.

Me: Okay. You’re probably right. You’ve lost a lot of weight. I don’t think your bathing suit fits anymore.

Early morning conversations can often be odd with a parkie (PD patient).

Even Harder to Accept

Posted by

0

God has a plan. This concept is a tenet of the major monotheist religions, I think. And based on that everything that happens has been preordained by God to happen.

It matters not whether we understand God’s reasoning. It matters not whether we like the outcome. It matters not that a disaster has occurred in our lives. It matters not whether a great benefit has occurred in our life. It matters not whether we achieve and others do not. It matters not that others receive something that we believe is ours. The plan exists and it is good because God is good, all-powerful, all-seeing, all-knowing, all-everything. It matters not if there is a belief in God.

All the bad stuff and all the good stuff is part of the plan. God’s plan. His plan. Even Parkinson’s disease is part of the plan. This part of the plan sucks. Acceptance of this part of his plan is heart breaking.

High order cognitive function impairment: She has changed. The changes are very subtle and if you have not lived with her for fifty years you might not notice the changes. I do not know if I can describe them well.

Cheryl has always been a strong and independent woman, now, she is often unsure of herself. From my perspective, this first appeared suddenly as she worked on a task she has performed through our entire married life. Suddenly after fifty years she was unable to balance the checkbook. But maybe, probably, this has been creeping up on her for a while.

That ability – to remember to jot down spendings, note the withdrawal of cash, perform the addition and subtractions – was suddenly confusing. Her notes made no sense or not as much sense to her. She panicked at first and spent long hours in her home office on the hunt for small amounts of money. She was scared.

So, we compromised. I matched the notes she made to the actual transactions that the bank recorded. I made no commentary about what things were for, just that they were there. Two transactions were recorded twice. One transaction not at all. The error was found.

Two evenings of confusion and lost sleep for $129.35. Parkinson’s sucks.

And now I’m in charge of the checkbook. Because I need to relieve the anxiety and worry that goes with once knowing and now not knowing. She is sleeping better most nights.

Logical procedures – Related to the whole checkbook fiasco are many other procedural tasks that are suddenly incomprehensible to Cheryl.

Cheryl spent a large part of her working career figuring out, manipulating, generating reports from, creating databases of various types. Our youngest son inherited the talent and makes his living at that type of work. This woman spent her early years in pursuit of a degree in mathematics. Raised our children and when they were out of the house taught school for a bit. Eventually became an independent contractor for law firms, labor unions, healthcare providers, and financial firms providing database design and support. Complicated tasks and procedures and precision coding where second nature.

And now, many of these are incomprehensible to her. This may be part of some incomprehensible plan but it is a maddeningly inane plan from this writers perspective.

Learning disabilities later in life — We all have them. “It is hard to teach an old dog new tricks.” We have heard this expression before. With Parkinson’s it is hard for an old dog to produce the same tricks. Maddeningly so.

Higher order thinking and organizational thought: The high order brain function does not recognize that lower order functions are disabled or incomplete. No longer can you trust implicitly what you perceive, see, hear and feel.

Anxiety about loss of function: This is mostly from me. Cheryl can sometimes detect that she is losing some cognitive function but she often refuses to believe it. On the other hand I have noticed some diminished capacity in her performance of some tasks but I am never confident in “helping” which can be interpreted as overbearance and interference. I want to do neither but I do want to help her get past her conundrum.

My part in all of this: Its my job to be there and be there with strength. Sometimes an overwhelming sadness appears and I tear up.  Sometimes I feel real anger.  I hate to be pushed into doing things or being responsible for things that are not my idea.  I suppose that makes me human.

Taking care of Cheryl is my task but I had hoped we would be more companions rather than care-giver/receiver in our later years.

As I write this post and review and reflect on my thoughts and fears, I read a great deal. Perhaps too much. Recently I tripped over this quote from Scott Adams, the author of Dilbert, he wrote, “Facts don’t matter. What matters is how you feel.”

Holy Cow – Does It Work That Way?

Posted by

0

Where does one derive a belief system? In others separate from this writer, beliefs seem to arise from perceptions of authority and knowledge of a particular body of science.

For example, a doctor or doctors generally are accepted as having a greater knowledge of human bodily functions. They do , of course, but this perception can be tainted or dismissed by specialization. You may not wish to be seen by an OB-GYN for a problem with your sinuses. So, how do belief systems develop?

Marketing? Personal service? Religion? Advertising?

All of these in some way seem to be used to influence, introduce and develop belief systems within us.

Cheryl has been diagnosed with Parkinson’s disease. It is not a death sentence. It is, however, an annoying extra to be dealt with during daily life. In addition to the manifest reality of the slow deterioration of her nervous system, the drug treatment regimen can be complicated in the extreme.

At six distinct and critical times of each twenty-four hour period, several different chemical compounds must be ingested to combat the effects of Parkinson’s. And after they are ingested the associated side affects must be dealt with.

The initial side effect is nausea. This is dealt with initially by carbidopa which is added to the levodopa to relieve the reaction of the stomach to expel unwanted chemical content. Two saltine crackers also help and enough water to dilute the whole mess and get it to the small bowel where it can work its magic.

Because magic it is when the levodopa works. Levodopa is a dopamine precursor the human body turns it into dopamine which is a chemical the brain and nervous system needs to function. Dopamine deficiency is the proximate cause of Parkinson’s.

Dopamine (chemically – 3,4-dihydroxyphenethylamine) is a neurotransmitter and when you do not have enough of it your neuros (neurons) cannot transmit. Dopamine deficiency is linked to a whole host of crappy life problems.

This is from Wikipedia — In popular culture and media, dopamine is often seen as the main chemical of pleasure, but the current opinion in pharmacology is that dopamine instead confers motivational salience;[3][4][5] in other words, dopamine signals the perceived motivational prominence (i.e., the desirability or aversiveness) of an outcome, which in turn propels the organism’s behavior toward or away from achieving that outcome.[5][6]

Wow! The treatment for PD is a chemical that can push the brain around. An oversimplification but one that can help to understand the side effects of Sinemet and other commercial versions of Carbidopa/Levodopa compounds.

As one can imagine, hallucination, confusion, misconception, delusion and false perception can accompany ingestion of this substance. The lack of dopamine in the inner brain can cause some of the same. It is a delicate balance.

Recently, she had problems with the perception of urinary incontinence at night. Perception is used here because we base our belief structure on our perception of our surroundings by our senses. Touch, smell, sight, auditory, kinesthetic tell us where we are, too hot, too cold, too bright, too dark, not loud enough, too loud, is my arm up?; is it down?; is this wet?; or not. When that perception of the world based on one’s bodily sensors breaks down an anxiety can set in.

The caregiver was unable to convince her that she was not incontinent. No odor. No wetness. No evidence.

Not an expert. Not believable.

We recently went to visit with a urologist to check out that specific problem of urinary incontinence.

According to the expert, all is well. A part of the belief structure is still intact. The young urologist is also an excellent marketer and persuasive in her knowledge and bedside manner.

The first night afterward she slept comfortably all night. One or two get-ups to urinate but blissful sleep after returning to bed. A second night in a row was achieved.

The third night she slept straight through for seven hours.

A streak!

Huh? Can it be that easy? All that is necessary is to find the correct expert that can persuade the belief structure that the hallucination is not real? The one that can give the cognizant mind – still there even with PD – the ability to overcome the sensory mis-perception?

Parkinson’s sucks AND its a lot of work.