mental-health

Thankful

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This time of year I think of the things, people and situations in my life for whom and which I am thankful. The positives outweigh the negatives. Do this for yourself and assess were you are. (I am rarely thankful for negatives.)

People: (Be careful here. It is easy to miss someone.)

  • Anna & Eric & the kiddos
  • David & Melissa & the kiddos
  • Scott & Mavis & the kiddos
  • My sister Joyce
  • Debbie Joy
  • My cousin Bob (also Tom)
  • All the Nancys
  • Sr. Carren
  • Sr. Janet
  • The stock club guys
  • Grief Share support
  • Bea, Bev, Marg, Peggy, John and Peg and the back pew support crew

I stop after this list because the people who have saved me is too great for me to remember and the people who are so very special to me crowd my thoughts. It is remarkable that Cheryl is talking to me in my head; “you forgot… and what about…“ After three rounds of Grief Share group support I can hear her voice with almost perfect clarity. So, I tell her, “okay maybe I shouldn’t try to list everyone. You are right someone I missed will be sad I did not list them and they will think I forgot what they did for me.” She just said, “I am (right)!” I laughed out loud at her.

Things:

  • A place to live
  • Bike paths and a car big enough to put my bike into for travel.
  • No mortgage or loan payments
  • Enough cash to last until the end of me
  • Enough food and the ability to prepare it
  • Pie and coffee cake
  • Blueberry sorbet (I am listing the truly important things now.)
  • Also pecan pie. Mavis sent me her pecan bars recipe with the note that the filling makes THE BEST pecan pie. I have made it twice now and she is ABSOLUTELY CORRECT.

I am thankful that in our society I think I will get by with the means at hand. I am pretty sure I will get to the end of my life before I get to the end of my money. We (Cheryl and I) have always been fiscally frugal.) Tricky to do raising three kids but they all turned out perfect and these days their families are perfect. (I am thankful for them too.) I think the little pile of money Cheryl and I put together will last until the end of me.

Situations:

  • Good health
  • Bike paths and the ability to ride on them
  • Loving family
  • Wonderful friends
  • I have decided and have started the process of complete retirement. I hope to have enough time to pursue my own interests and hobbies without interruption of commitment not of my own decision.
  • Mental relief of making that decision and starting the process.
  • Wearing pajamas until noon

One of the reasons for retirement – maybe one of the best – is wearing pajamas until noon. On baking days and writing days I do this. No one is here except me. I do not concern myself with good looks when no one else is about. Lately there have been fewer writing days. My school schedule has picked up. All of that changes at the end of 2025 and I look forward to it.

Carpe Diem

Experimentation

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I have been experimenting with many aspects of my life since Cheryl has gone.

Where am I going? Why am I experimenting? What do I mean by experimenting? Am I searching for life meaning? My life meaning?

Is this worth my effort?

Since I am still here and God has taken her, there must be some reason that the universal conscience has for me. Or that line of thought might just be ego talking. Some days I feel like I am waiting for God to hit me with the answer of what all this is for.

Today the time changes. Why did it change? Did we get more? What is time? Why do I have so many devices in my home to measure it? Why is my circadian rhythm dysrhythmic today?

How much sugar should I add to this? Should I use sugar or honey? Where is this thought going?

I had a strange dream yesterday as I was wakening in the last time zone. My neighbor was holding two tomatoes from our little garden plot and peering into my living room windows. She was waving them up and down in the latest “6-7” motion that the children do meaninglessly. My view in the dream was as though I was looking through a doll house window. She was a giant version of herself. I woke up suddenly with a little shiver. Where did that dreamy thought come from?

Is the One whose name may not be said merely trying to show me that purpose and being are two different ideas and are not correlated? Those just are?

The human mind (maybe just my mind) is just simply too busy. Minds are too busy concerning themselves with ideas like purpose and value. What if my mind could just be? And where is my mind?

Cheryl’s mind left her before her body left the Earth. Taking care of her in her mindless menagerie of demented memories and present existence was my purpose and value for many years.

These days I seem to be experimenting to find new purpose. But what if I merely remain present to what is now. What if?

It is almost 8AM and my mind is telling my body that it was almost 9AM yesterday. Presence to now is what I shout back in my mind. What is it now? Yesterday is no more.

Time only moves forward.

We are all time travelers. See what is now. The future is tomorrow and next month and next year.

I will get there in time.

What is the rush?

Carpe Diem.

Parkinson’s Help

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I had a long conversation with a member of our Parkinson’s support group today. She called mostly to talk about her husband who has Parkinson’s disease (PD). And the struggles she was having as a caregiver with Parkinson’s disease care management. We talked for a long, long time. Maybe half hour, 45 minutes she was on the phone. She was pretty forthcoming, with lots of things that she was dealing within her life, I was surprised by the call and I don’t know why but I am glad she reached out and I was able to give her an ear. Afterward it made me feel good. It made me feel sad for her.

It made me think…

Think a lot about Cheryl and how I dealt with helping her deal with her disease. She had a lot of the same issues Bev was talking about. Her stories were remarkably similar to my memories of that time in our life.
Bev is dealing with it (Parkinson’s in her husband) right now. With her husband her description is very, very similar to where Cheryl was maybe 2 years or so before the end of her life. The parallels are really striking. Bev was telling me that they moved into the condo that they are now living in about 5 years ago. (Same for us.) Mostly because it was getting harder and harder for her husband. He always, you know, mowed the lawn. And he did the maintenance kind of activities that you have with the house.

She went on and on to tell me lots of stories about things and I think I’ll have to think about them for a while. But the but the whole story line is so remarkably similar and so sad and well, maybe not sad, but but frustrating, you know, the disease just kind of consumes your whole relationship with with your spouse, they’ve been married a long time too.

They’ve been married about 35 years. They were together 3 or 4 years before that. Cheryl and I were married 53 years and we had been together for 4 years before that, it’s just incredible how similar the stories are.

Anyway, I needed to take time away from what I was doing here in my class management at the Mason campus of Sinclair College. I had to go have lunch somewhere where I could sit quietly and think about things and grade papers and take my mind off of that phone conversation and the memories it conjured. That was such a debilitating part of my life and Cheryl’s. It was so all-consuming. I think that’s what gets missed when people talk about care. Giving it is so all-consuming, slow moving, frustrating and then people will still say, “Well you’re blessed to have her or your blessed to have him. There’s no fucking blessed going on in that whole Parkinson’s/dementia thing.

Just.

Not.

Happening.

Bev did tell me one other useful thing. Her family doctor told her that she needs to go outside and take a walk everyday. No phones, no music, no nothing, you need to go out and listen to the birds, enjoy the sunshine. If there is no sunshine, enjoy the rain, if there is rain take an umbrella, but for 30 minutes a day, you got to just walk away from everything, get rid of the stress, let it go. That is absolutely the best advice I’ve ever heard anybody say to anybody else about this horrible disease of Parkinson’s. It truly is a horrible disease. I remarked to her that it was the best piece of advice I had ever heard. (I got away to ride my bike whenever I could.)

Not only does PD make it so that you can’t get around easily. It’s a brain disease, so lots of times the brain goes wacko. He or she becomes a whole different person. Bev was actually talking about that too.

She and I commiserated for a bit; they like us have been married a long time. All the early on things that they and we had. They had a really good life up until just a few years ago, when she thinks he really went downhill in a hurry. But that kind of story is just so common, and somehow doctors aren’t able to describe the signs to the care partner. It seems almost like you would need to have a psychiatric version of Parkinson’s doctor. PD is a movement disorder, so one seeks out a movement disorder specialist but probably one also needs a brain specialist or its psychiatric personality disorder specialist, in other words, a brain guy to to talk about some of these issues. The sad thing is the person with Parkinson’s disease doesn’t recognize what is actually going on. The person helping a person with a dementia issue, of course, is struggling to do the right thing to get the best care. Those around him or her (the family) without the lived experience, those that aren’t dealing with it on a day to day basis, they think that everything is generally okay, because the PD person the demented person is able to actually keep it together for an hour or 2 or whatever it takes to get through the party or the social activity, and so, those people, that part of the family who is not living there does not get to see the whole picture.

They think everything is fine or mostly fine.

Whoever it is, is obviously ill with PD and can’t move so good. Maybe they look old and got arthritis…

So many things are invisible. They cannot be seen. Or we choose to not see.

Carpe Diem

Too Busy Too Much

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Can life be too busy? Can it be too much?

At certain times in a time of creativity it is. Yes it can.

I have not been good at blocking throughout my life. I must learn that, the ability to block certain times for certain activities and to block out other thoughts while doing those activities, is helpful to following creative thought.

“Human life revolves around four big questions: What is the meaning of life? What is the ultimate source of right and wrong? How can we reduce the amount of suffering and injustice in the world? How can we understand the world without resorting to magic, using reason and evidence instead? – Jonathan Rauch.” I read this in David Brook’s column in the New York Times. What does that have to do with “too busy”? Throughout my life (and career as a controls designer) I found that when I was up against a particularly vexing problem – dilemma, conundrum – simply walking away mentally for awhile helped with finding a solution or at least a path towards one. Some would call this prayer. I think of prayer as a literal request, so, I do not. (Maybe I should think of prayer differently – a different topic.) Although I am not good at blocking, there are too many devices nearby, I am able to about-face my mind and focus entirely on something very different. Jonathan’s list groups some of the topics hovering in the background that jump into the foreground when I let my mind wander off the vexation.

These are all deep enduring thought exercises. If I truly want to abandon rational thought for awhile I ponder the meaning of Facebook, TikTok and X.

Writing these small blog posts help me to disengage for a bit.

Simply disabling the ringer on the mobile phone is remarkably satisfying.

Life is too busy.

I want to devote more time to writing. I want to devote more time to travel. I want to devote more time to service others. I want to do more me before there is less me to do it.

Carpe Diem

A New Month

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And Just Like That – August Was Over

Sometimes in life it seems like life goes by quickly. At other times of course life drags by slowly. What makes that difference? I am pondering that today.

The easy answer is that I am busy. The real answer is I am happy.

A couple days ago I went to a funeral. The event was not a happy event but I was happy that I was able to attend and support my friends. Because of other commitments I thought I would not be able to attend. In talking to the few old men that I knew there, I found that I was not dealing with a myriad of health issues that crop up when old men talk to each other. It made me smile inside a bit, because I am not dealing with nor had dealt with any of the issues discussed.

Admittedly that sounds a bit like bragging. It is not. I have aches and pains. My body reminds me sometimes about my age and my lack of preparation for various athletic activities but overall I am in pretty good health and I am happy for that fact.

I thanked Him for my good health and His graciously sparing me from the various old man issues I heard about at the funeral service.

When Cheryl died last year I was very sad for some time. I was unsure that I would be truly happy again. I was resigned to being alone for the rest of the time God gave me. I also was wondering what is my purpose. Prior to her death I had locked myself into the premise that I was here to help her. Life purpose is an idea that wanders in and out of my thoughts. I was wrong that my only life purpose was Cheryl. There must be more.

I read and re-read Max Ehrmann’s “Desiderata” poem. I read it like advisement and maybe a prayer. He writes “… strive to be happy.” He does not write – strive to be busy.

I have good friends and I have a wonderful woman in my life. For me it is hard to be unhappy. I have found that even though the most important person in my life has left this earthly existence, it is possible to develop a new and lasting relationship. Strive to be happy. Take a chance. Life is relationships.

All of those relationships mingle and make me happy to be here. I was happy when Cheryl was my focal point. I am happy with Debbie as my new focus. Connection with another and others creates purpose. It reveals the goodness and graciousness of our life force, the soul of our being, the beauty of the world and the breathtakingly joyful participation in it. These are happiness itself.

I am searching for some definitive purpose when life is it. I always knew this but I was caught in the conundrum of determining a specificity. Life is random. Be present for it to happen.

“And whether or not it is clear to you, no doubt the universe is unfolding as it should…. Strive to be happy.”

Carpe Diem.

On To…

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I originally wrote most of this in December of 2021. The lessons I learned and techniques I developed for communicating with my wife who was dealing with Parkinson disease and associated dementia are applicable today. The lessons of life are illusory and fade if not maintained.

I am learning things about myself from Debbie that I was only beginning to learn from Cheryl and taking care of her at the end of her life. Dementia is a misunderstanding between the brain and it surroundings and the sensors it uses to detect the environment. An oversimplification to say the least but a miscommunication certainly. Missed communication is at the heart of any conflict or dispute.

Lessons from making cookies

December, 2021: Cheryl’s Cookies (Not the Commercial Venture)…

Living with a parkie (person suffering from Parkinson’s disease) makes me alert to new information when it comes up. That being said I do not always recognize my new task nor do I always recognize the information as new. This is about becoming a master cookie maker on the fly. I was not completely inept. I make bread often.

Executive function and loss of it…

Dementia occurs in about 50% of Parkinson’s sufferers who have had it for some time. Mild cognitive impairment often shows up first, followed by hallucinations, delusions, misunderstanding, memory loss and inability to follow simple directions. It is disheartening. Some behaviors are side effects of medications. Some come with build up of unpronounceable proteins in the brain. No matter the source, the behavior can be disheartening and annoying from a care partner perspective because the person you once knew is physically there and mentally not completely there. From a care partner’s perspective it seems that the medical community does not forewarn anyone about this aspect of the disease.

I am a retired engineer and have an innate curiosity about everything around me. Cooking, baking, bread making and all things requiring an oven have a particular fascination. There is practical chemistry in cooking both with the ingredients and the people cooking them. To the question, why do it that way? Near the end, my wife’s reaction often was anger to some perceived slight or merely to the wording of it. (She is the parkie in this story but that may have little to do with it. I caulked most of these reactions to her PD and her mental state at the time.)

It is an engineer’s question. It starts with me. Words and question structure are important factors. Engineers always want to ask why something is done some way or simply is some way. Why often sounds like a challenge, even to other engineers, if it is not asked properly. Tenor is detected in tone of voice both in the sound we make with vocal chords and inside our own head. Cognitive impairment interferes with interpretation of subtleties of tenor and tone of voice.

How to do…

December, 2021: Our latest challenge to our marital bliss is Christmas cookies. Baking is a hobby and a passion to me. I like to think I have perfected my meager talent at making breads of various types and shapes. I am proud of that but lately I have pushing into cakes and pies. The pandemic pandemonium gets to us all in various ways.

My perception of making cookies is one of a trivial exercise in baking. That is an incorrect perspective but one that I have internalized. December is cookie making time. Cheryl is helping me or I am helping her that is unclear in this reminisce but her Parkinson is affecting her more and more. Two cooks in the kitchen is a recipe for a challenge to peaceful coexistence. Two bakers near an oven enables battle lines to be established and defended with vigor. Starting a question with why is akin to removing one’s glove and casting it upon the dueling ground. [Emoji (:-)] Cheryl has made perhaps a giga-dozen (I just made up that word) of cookies. I have made none. What can I say to redeem myself? Engineers ask why a lot and in this exercise I learn to find a more agreeable way to get her to tell me what she knows.

The lead-in; I do not understand, why do… seems to temper the why. Small children ask why a lot until finally the because-I-say-so comes out.

Where to start…

To a skilled cookie baker the recipe is merely a guide, a refresher, a list that says these get lemon zest. Interestingly, that is much like how I view a new bread recipe. I am on familiar territory. (He thought to himself with arrogance.)

Not so fast apprentice! Nearby there is a master cookie baker. Do not question the master’s skill at her craft with disdainful utterances such as, why and how come? All will be revealed. But also keep an eye on the recipe and make answers such as, yes, we have put that in the mix and suggestions, such as, shall I add the butter?

Sometimes with creeping dementia ingredients are forgotten. Sometimes without that factor ingredients are forgotten. Try to be kind and remember that no one got up in the morning thinking, how can I mess with his mind today? Most importantly, do not raise your voice two octaves, that is a dead giveaway to your ignorance.

How does one check for doneness? (It is common sense!) Look at them. (the “fool” is left unsaid.) They will look right. What is right? (and on and on and on…) Cooking is a process. It is learned by doing. Life is random. It is learned by experience.

The 3C method – Cut out the Crap in the Conversation…

To a person standing nearby this conversation sounds rude. It sounds like one person is giving another orders and it can be that way. If done with kindness in the communicator’s heart and with understanding that a Parkinson’s patient also may be dealing with confusion issues, it is neither rude nor demeaning in any way. Often a person experiencing Parkinson’s cannot or does not get the implication or inference. Be clear. Have kindness in your voice when speaking. No teasing.

When tasting the cookies later after they have cooled, do not say, “YOU FORGOT THE SALT!” Instead say “These seem off somehow. Did we forget an ingredient?” Gentle discussion allows for thoughtful assessment rather than confrontational reaction.

The onus is on the care partner not the parkie to be patient, kind and clear. Be aware, care partner, that this is hard to do because you remember how your partner/spouse/parent/friend was before. (Good natured teasing may be misinterpreted. Be certain that your partner is not confused.) You too can be unaware of how they are now. The Parkinson’s patient may become sad or angry. Be persistent if you as care partner are very concerned about safety. Add some love to the conversation if you think you are not getting through the confusion. Strive to not become frustrated and raise your voice (two octaves).

We did wind up with our first battle batch of cookies. Although they were a motley crew, they tasted fine.

This episode came to me as I was thinking about other experiences that have cropped up in my new relationship with Debbie and I am getting to know her family and friends. Patience, kindness and clearness are useful aspects of communication with anyone, especially someone you care for deeply. Debbie has told me several times that she does not always know when I am teasing her. Perhaps I should not do that at all. The ability to tease someone comes with trust and love and familiarity. Perhaps I should remember that I do not know what I do not know and err on the side of kindness and ease, not tease.

Everyday is a winding road. I get a little bit closer. – Sheryl Crow (Good poem/song – read the lyrics)

Carpe Diem.

Exercise, Personality and Riding

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I suspect that few reading this will care much but I will tell you about it anyway. In a short little piece this morning on CBS, Tony talked about exercise and matching exercise to your personality. The researchers thought is that if you match your exercise to your personality trait(s) you are more likely to continue it whatever it is. In the Telegraph article that Tony was citing, they used the Big 5 model, a psychological framework, to find participants’ dominant personality traits.

I have been interested in psychology and personality for a long time. That interest was rekindled when I went for my M Ed. A few years ago. Hanging with Debbie has rekindled my interest again.

The Big Five model further divides each of the 5 into two as follows:

1) Conscientiousness – industriousness (a self-disciplined and efficient attitude) and orderliness (tidiness and a routine-based lifestyle). I make the bed every morning.

2) Extroversion – enthusiasm (friendly, sociable outlook) and assertiveness (an ambitious and socially dominant attitude) I greet total strangers with a smile.

3) Agreeableness – compassion (caring for and about others) and politeness. I care about how my kids are doing and I like to open the car door for Debbie.

4) Openness to experience – intellect (competence and quickness to understand) and general openness (a creative, imaginative and reflective outlook) Debbie and I have been to many different restaurants and are exploring various soft serve ice cream stands. We call them field trips.

5) Neuroticism – withdrawal (feeling discouraged and self-conscious) and volatility of mood. Sometimes in the afternoon I take a nap. Naps are healthy.

Two qualities, enthusiasm and positive thinking, in other words, scoring low on the withdrawal aspect of neuroticism were the key factors for happiness. The traits most strongly linked to numerous measures of well being include; life satisfaction, self-acceptance, and a sense of mastery and direction in life.

What’s this have to do with exercise? The study sample size was small. Less than 200 participated. In addition, only 70% or so of the initial group completed the follow up survey at the end. So proof! Any meaningful data dissipated rapidly but Tony talked about it anyway. His graphic showed a bicycle rider. The picture reminded me that it is my favorite exercise. I wondered if it fit my personality traits.

I became interested in this so I found the Frontiers in Psychology website and started looking for the article itself. I couldn’t really find the article but it was a very small study. I found this reference to it in the Guardian. I misheard Tony. It was a University College of London study of 132 folks who were invited to join in a survey. The article is humorous.

I still like to ride on the bike trail by myself. Others like to ride in groups. I listen to music or a book or a podcast or the birds while I ride along. I prefer the aloneness of riding. When I was caring for Cheryl it took me away from the heartache of that activity. The summer after she died, it took my heart to a different place much like meditation. This summer it is hot but it has developed into a hobby and an interest that simply gets me outdoors.

I do not think I am neurotic. (I hope the Guardian link works.)

Carpe Diem.

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.