Author: AdjunctWizard

A Sense of Loss and Weary from the Journey

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Whooopadiddee!

I will forever treasure this picture. Last year in Cincinnati, Janice (seated) came to help Cheryl with a fund raiser for Parkinson’s disease called The Sunflower REV it up for Parkinson’s. In this particular picture — once in a while I get a good one — they both have their smiles on. The single most disappointing thing about Parkies is often-times they loose their smile. They look stiff and glum.

Janice passed away early this morning. She had contracted Covid-19 from somewhere and the combination of diabetes, Parkinson’s disease, Myethenia Gravis, maybe a little COPD did not allow her to recover from the infection. We will miss her greatly.

She and her husband chased jobs to Florida many years ago. Next year they would have celebrated 50 years of marriage together. When the covid pandemic turned off our plans for a Golden wedding anniversary celebration this summer, they were quickly modified into a joint celebration next year, when, hopefully it would be safer. Alas, it is not to be.

Covid-19 is a peculiar virus. It is a predator that seems to be culling the society of the weakest and most vulnerable.

It is all part of His plan, but, today I am disappointed in Him and any plan that He has. Mere humans cannot understand God’s plan for us all. I cannot find solace and comfort. Not yet. It is too soon. First my Brother and now Cheryl’s sister. It is too soon. The loss is too strong. Perhaps later.

Visit in October of 2019

In the fall last year Cheryl and I visited my brother who was recovering from illness and one day we drove across the state to have lunch with Jan and Bill, their son Justin and Cheryl’s cousin Mary Kay and her husband Jay. This picture is from some Friday’s somewhere in Florida.

The trip was taxing to Cheryl. We drove. It was my choice to do travel that way. It allowed us more flexibility. I felt that I could abandon our plans at any time based on Cheryl’s mood, physical well-being or whatever came up. We stopped often and spent no more that six hours on the road each day.

McDonald’s respite

In a previous life I used McDonald’s as rest stops. Even if I was not traveling on an Interstate highway, their restrooms are generally pretty clean and the staff is generally friendly. Their corporate policing of properties, even franchise properties, is their reputation. They lose business if it is not up-to-snuff.

Today, after the news of Janice’s passing, I was elated that we had taken the opportunity to go and visit. We had not done so previously. I am saddened by the fact that we had not done so previously. It would have been easier pre-Parkinson’s. Life, employment and other unimportant things got in the way, so, we did not visit until last October.

I am gladdened by the memories. An animated lunch conversation and a visit to see Justin’s blow up decorations for Halloween were the highlights of that day.

Booowooohaha – scary all hallo’s eve – not so scary with the sun out.

Our house is sad today. Janice is with her mom and dad. There is a gap in the family that cannot be filled yet. It will take time and love to fill that gap.

When my brother passed away a couple months ago, I felt this same gap. I have been calling my sister more. There is only the two of us left from our original family.

Since Cheryl’s mother passed away two years ago her family started random gatherings of the siblings for birthday celebrations. The baby is now sixty years old. Cheryl has taken upon her mother’s activity of sending a card to children, grand children, cousins, nieces and nephews for birthdays and anniversaries or simply to say congratulations. She is a valuable resource as to what to celebrate. This is a good thing that they have started before any of them has passed away due to illness. Now the first one has died. Even though covid makes it dangerous for some to gather, perhaps it is time wear our masks and celebrate Jan’s life.

I am glad that I knew her. She was a wonderful loving mother to Eric, Kevin and Justin. A loving wife and caregiver to Bill her husband. A generous and loving sister to Cheryl, Nancy, Debbie, Dan and Ken. She was a loving and generous grandmother to Brandon and Olivia.

Our house is sad today.

Covid Weariness Wariness

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Us before Parkinson’s
Zzzzzz.

As I started this post I mis-typed weariness as wariness and realized that although this Covid-19 business makes us both weary, wary is also an apt feeling. The news about it has become another weather report but the constant update of numbers and deaths and governmental tug-of-war has made us wary of going out to do necessary errands.

I have become adept at ordering things online and as carryout from local restaurants. All the while wondering if something that can only be viewed with an electron microscope is lurking on a surface waiting to kill me.

In a way Dealing with Parkinson’s disease has been good training for Covid-stay-at-home. We are weary of it all. Everyone has to die of something. My father years ago expressed the thought that he was not too worried about dying but he was interested in if it would hurt. The doctor replied, we have good stuff for that.

The nightly covid-19 weather report corrupts my interest in the evening news programs.

Cheryl’s sister is laying face down in a ICU bed in a hospital in Florida. The prone position is used to increase oxygenation in the lungs. It is better when laying face down.

The ventilator tube has been reintroduced into her trachea to help her breath for the second time in as many weeks. She is deathly ill with covid-19 and the extra complications of Parkinson’s disease, myethenia gravis and diabetes. The machine is breathing for her according to my brother-in-law and the machine is giving her pure oxygen. It makes us wary of answering the phone.

Over the past 10-15 days Jan was in the hospital, out of the hospital, in a different hospital, back in the first hospital, tested positive for covid, a wearying experience for her I have no doubt. A wearying experience for her husband who is in the position of caring for their autistic son on his own and providing comfort to a boy who is not sure of the world around him. And unable to visit, care for, provide comfort to his very ill wife. She is sedated. The rest of the family, three sisters and two brothers, wait. Wary of answering the phone. Wishing we could be in Florida. Staffing shifts in the hospital. Sitting with Jan and Bill.

Somehow prayer only seems to enhance the stress. But it is all the family has.

A good news thing is no other member of the Florida bunch has covid-19. Only Jan picked it up from somewhere.

As soon as one feels down about their own situation and how miserable it is, boom-chukka-lucka, someone with a worse situation appears to humble one’s outlook.

Parkinson’s disease can make you crazy but often other folks get deathly ill.

… successfully ended on a down note.

Tiny Changes, Creeping Anxiety

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Tea or no tea today? A morning cup of tea after the bowl of cereal breakfast and taking time to work on the puzzles in the newspaper was/is her favorite morning wake up. This is changing. It is more random less routine.

Get ready for church on the wrong day – this past Sunday after three tries, we made it. We did not get up at 2AM to get ready for church at 10AM. On Saturday we visited our son and his family. That activity left Cheryl exhausted and ready to sleep when we arrived home. Perhaps the moral of the story is a good nights rest and my assurances that she had plenty of time to take her pills rest and take the 10AM dose slightly early allowed sleep without anxiety?

Blank stares at the computer screen… The screen that used to be second nature is now often befuddling.

Old messages on the cellphone – seem confusing because dates are confused and not meaningful. A year ago I had the brilliant idea to get Cheryl a smart phone so that her brothers and sisters who seemed to  communicate often by group chat could read their messages directly.  She has long been a email communicator.  Initially she adapted well.  As time went on I realized that not only was she reading old emails as though she had just received them but she was doing the same with old text messages. Sometimes emergency responses were sent back to a five month old text.

Her sisters have adopted the use of several emoji hieroglyphics that are meaningless to Cheryl.  This particular one — 🤷‍♀️ — a little girl with her hands up at her shoulders which could be used for “dunno” or “whatever” or a woman shrugging her shoulders in frustration is particularly meaningless to Cheryl while it is particularly meaningful to her sister.

Cute little whatever girl.

I think of the new smart phone now as “almost a good idea” and recognize that I made a mistake. Her sister has either wisely or unconsciously returned to the practice of sending the messages on the chat about another sister in Florida who is very ill with the Covid-19 virus to me. I interpret those to Cheryl. Cheryl seems comfortable with that. I leave out all the emoji icons that seem to clutter up the chat line and frankly mean little to me either.

Poor sleep patterns produce a late morning and long naps. It is a situation that feeds on itself. Sleeping late produces poor sleep at night which causes napping which produces poor sleep at night and on.

And the morning question, Where are we? worries me the most. When Cheryl describes this it is an out of body experience.  She knows that the furniture and decorations are much like hers but cannot make the connection that she is home. It too seems to occur after poor sleep that she has awakened early from. In the morning twilight her brain is confused. Two days age she asked, Can you tell me were we are? (Tears came to my eyes before I could stop it.)

She forgets the why or who of things on the bulletin board. Below is information about our grandson showing an amazing growth spurt over 24 months. Seven months or so ago when this was posted on the bulletin board we talked about it extensively.  We talked with the parents, with the neighbors, with friends. On this day seven months later she asked, what is this for?

Forgetfulness is more prevalent than merely that which accompanies old age. It explains many new behaviors.  The information about our grandson above is just one of them.

Parkinson’s is physically annoying and then you forget about it.

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.

She fell on Sunday

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A car door, a bush, a rock decoration, the walkway, splat… A literal wandering into the weeds caused her to trip over a rock decoration at the end of my daughter’s driveway and fall face first on the concrete walkway at the front of their property.

Poop!

Daily Schedule

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Daily and weekly routine is comforting to parkies. It is comforting to caregivers of parkies. I suspect it is comforting to all of us.

Breaking routine opens new doors to mental fitness. And sometimes, if unexpected, creates unease and imbalance in the day.

Monday – Wash the sheets! In our third week of — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — I have come to realize this is routine now. This is Monday too, so, I am thinking, when she gets up I will strip the bed wash the sheets.

I used to wash the sheets on Sunday. A few weeks ago I changed that to Monday for no particular reason. Often we visit the kids and their families on Sunday but the washer runs unattended, as does the dryer. I did not need to change because of interference with anything. I changed for the sake of change. It is one of the basics tenets of Buddhism, everything changes.

If the kiddos would visit us, they might find grandpa putting the bed back together.

Tuesday – Exercise and Pizza! More — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — It is Parkinson’s Community Fitness Day! (smiley face) Shouting that here sounds in my head like the Mickey Mouse Club of old. Nevertheless on Tuesday Cheryl has an exercise and fitness class at PCF. This organization grew out of a recognized need for some structured fitness routines oriented specifically toward Parkinson’s patients.

It works wonders. Physical exercise seems to have the same if not better affect to her mobility as the meds. She is often tired afterward but her spirits are brighter and for a few hours she seems to move better. For Cheryl, having a specific time and a class of similar folks, seems to work better. She is able to but uninterested in doing these same exercises at home. The community atmosphere is encouraging to her.

Do not forget the pizza. Tuesday became our go out for pizza day perhaps seven or eight years ago. We bounced around on different days of the week for a time until we settled on Tuesday, at the same time, same pizza store and after awhile, same waitress. It has been enjoyable through the years. Our next door neighbor and good friend, Jane, joined us the past couple years. Good conversation over good pizza. Enjoyable. Indigestion to come later but not remembered next Tuesday.

Wednesday – wash the towels and house keeping chores, Paul cooks. — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — The towels do not always happen. Cheryl has kept this activity for herself and I have left it that way. When she has collected the towels she does a clean up in both bathrooms. The real cleaning happens every other week on Wednesday by our niece who operates her own cleaning service.

I have been cooking on and off through our marriage. I prefer to not cook and merely eat but I have discovered that there are some comfort foods that I have become good at cooking and I like my cooking. As Cheryl’s disease has progressed and the whole Covid-19 pandemonium has caused us to stay home even more, I cook more often. Sometimes she eats what I cook. Sometimes she eats little. Things that I think taste good have little taste to her. Parkinson’s has robbed her of her sense of smell.

On a good day, when she cooks, she will ask, Does it smell good? I reply yes it smells wonderful. She smiles wistfully at a memory of that smell and takes a bite of blandness.

Thursday – exercise and go out for dinner. — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — A second fitness class this week occurs on Thursday. A third class would work better for her but Tu-Th is what we have for now.

The class is very different with the Covid-19 restrictions and social separation but PCF is doing their best to support their clients and keep the doors open.

Social distance between the clients

Eventually there will be a vaccine. Often on Thursday we would pick another restaurant to go to for dinner or occasionally a late lunch and dessert for dinner. Covid-19 has often made us cook at home.

Friday – laundry day, Paul cooks again. — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — I took over the laundry duty as time progressed. At first Cheryl was concerned that I would wash her delicate items with the Levi’s. I was able to convince her that I would not do that.

It is my second or third day to cook.

Saturday – coffee cake day — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — Many years ago we would stop at a local donut shop on the way home from church on Sunday.

The donut shop was forced to move by the landlord which was a larger slightly competing store. Not a small bakery but they sold donuts. Sad but it is capitalism at its best. I followed the donut shop to its new location but it took a bit for them to get their store going and it gave me the opportunity to spend more time with baking.

Making coffee cake or sweet rolls or other pastry has become a Saturday routine for me. On Sunday we enjoy it.

Sunday – church and eat the coffee cake — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — In addition to a priest shortage in the Roman Catholic Church, the Covid-19 plandemic (as my conspiracy theory friends tend to call it) has turned this activity on its head.

Church used to be 9AM mass. Afterward we queued up at the donut shop to get some sugary carbohydrates to snack on while we watched the prerecorded CBS Sunday Morning program when we returned home. Tea for her and coffee for me rounds out the rest of a pleasant relaxing Sunday morning that started by walking to church and back. It is a memory now but we used to get a little exercise, get religion, get breakfast, and get rejuvenated all in one trip. Sadly those days are gone.

Parkinson’s is a progressive disease and over time it became easier to go to the 4:30PM Saturday mass when the 9AM Sunday mass became too hard. There are many contributory factors to this change; poor sleep patterns, reaction to meds, creeping PDD, to name the most important. Nevertheless for a few months our routine became 4:30PM Saturday mass and afterward we would go to a cafe or small restaurant for dinner. Often our friend Jane would join us. On one occasion the pastor joined us. He has Parkinson’s too.

Then boom-chuck-a-lucka. Covid-19, no masses, later no pastor, blending of two parishes, no mass except 10AM Sunday, streaming mass on the internet – not the same thing, going to church anywhere else is not the same. Mass and church is community. Mass anywhere else or on line is not. The church is its people. Its people are the community. The gathering of those in a common rite is comforting and routine. Any other collection of people is something to get through, hence, the thirty-minute mass.

We still enjoy the coffee cake and ponder the safety of going to church prior to a vaccine.

Repeat: Monday – wash the sheets.

I started this story on Monday as I realized that I knew with certainty what activities I would do during the week and I was reading a snippet of a news item somewhere that indicated planners, the paper kind, where of growing interest to the younger generation. Wow, I thought, I really do not need a planner. My daily activities are routine. Maybe even narrow. Perhaps I need to expand and try new things and make them routine.

Parkinson’s disease has a sameness to it. It plods along and then, BOOM-CHUCK-A-LUCKA, it is different.

You are being a Nag

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You have gone from someone who reminds me to do something to being a nag!, she told me today.

She is right about that. My remark about her eating a big lunch at 2:45 in the afternoon did sound a little whiney. I was thinking about what to thaw out for dinner at 5:30PM.

Perhaps Creamy Whip for dinner.

An Unexpected Slow day

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In this second week of me getting up to bring Cheryl her 7AM meds and get her settled back in bed, there are new things to consider.

As a caregiver it is easy to develop a narrow focus;

As we travel farther down the Parkinson’s road I as caregiver have slowly given over to the idea that little matters if it does not directly enable Cheryl to live a more comfortable life. The idea of this taints any thought, opinion or reading that may occur during the day. It colors the glasses through which I view the world. I love her. She is my world.

As a caregiver it is easy to ignore your own needs;

I like to read. I like to write this little journal blog. I like to ponder things such as the etymology of blog. And why do celebrities make air quotes while talking and for that matter what makes celebrity. I like to tease and poke fun at family and friends on Facebook. The whole concept of Facebook can be both focus narrowing and needy. I like to ride my bike in the heat. It is not bad. There is a breeze. I like to drink coffee. I like to cook for Cheryl but sometimes I like to take her out to dinner. I like to make coffee cake and other bakery treats.

As a caregiver it is hard to give yourself permission to;

Read, journal, ponder, tease on Facebook, ride my bike, drink coffee, make coffee cake — when Cheryl’s needs come first and change from day to day, sometimes hour to hour. Priorities are what I have made them. A niggly little guilt arises in the back of my head whenever I give myself permission to do some things. Things that might take me out of the house for a couple hours, things that might be a benefit to my mental well-being generate a background feeling of ill-ease. It is a sense of what am I missing? what could go wrong?

As a caregiver it is hard to be open to a wider perspective;

The opinions and ideas of others tend to be pushed into the background as you, as caregiver, become certain that you know best. It is creeping arrogance, misplaced righteousness and unfounded expertise that brings you here. Resist that idea. Push back on other’s unsolicited advice but do not resist the ideas of the person you giving care to. You cannot know her innermost fears.

As a caregiver it is hard to be open to help;

I think I have never been open to unsolicited help from anyone about anything. Cheryl’s PD adds a new twist to this. I am open to education and perspective. I seek help when I feel that I have exhausted all resources and have painted myself into a corner or have gotten trapped in a cul-de-sac. But unsolicited expertise from unvetted sources is easily rejected by my thought process. Much like Joe Friday in Drag Net, only the facts, Ma’am, only the facts.

As a caregiver it is tiring to keep educating oneself;

It is, however, the most important activity to do. Keep learning. New therapies and drugs appear. Which are helpful? Which are not?

As a caregiver it is tiring to watch the slow progression;

It is, however, important to be vigilant. The two steps forward with one back or sideways progress of PD is exhausting.

As a caregiver it is hard to breakout of the negativity;

Encouraging entreaties are not readily forthcoming. Parkinson’s disease gets in the way of so many trivial tasks. As the mental component creeps into daily life, it is difficult to see an upside.

As a caregiver it is hard to stay in the moment;

Often the moments are fleeting. The moments are getting fewer. …and the negativity comes back. Parkinson’s truly does suck.

Same Old, Same Old

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Once in a while I am stunned by how much our world changes and how much it stays the same. E.B. White of Charlotte’s Web fame wrote many essays for the New Yorker during the early to late 20th Century. This is a good one from 1948:

Expediency — 1/31/48

WE HAVE OFTEN WONDERED how journalism schools go about preparing young men and women for newspaperdom and magazineland. An answer came just the other day, in a surprising form. It came from California, via Editor Publisher. We quote:

San Francisco—Public opinion polls are scientific tools which should be used by newspapers to prevent editorial errors of judgment, Dr. Chilton Bush, head of the Division of Journalism at Stanford University, believes.“A publisher is smart to take a poll before he gets his neck out too far,” he said. “Polls provide a better idea of acceptance of newspaper policies.”

We have read this statement half a dozen times, probably in the faint hope that Editor & Publisher might be misquoting Dr. Bush or that we had failed to understand him. But there it stands—a clear guide to the life of expediency, a simple formula for journalism by acceptance, a short essay on how to run a newspaper by saying only the words the public wants to hear said. It seems to us that Dr. Bush hands his students not a sword but a weather vane. Under such conditions, the fourth estate becomes a mere parody of the human intelligence, and had best be turned over to bright birds with split tongues or to monkeys who can make change.

E.B. White – “Writings from the New Yorker 1026 – 1976”

It seems this is still true today. The challenge is to think and listen even if you do not want to hear the message.

E.B. White’s essay in January of 1948 is directed towards journalism and the fourth estate, however, it applies to other situations as well.

Parkinson’s caregivers, be aware of all of the aspects of this annoying disease. Learn everything you can from all sources. Do not accept a future that is bleak and pessimistic. Accept the day as it comes. Be helpful and encouraging. Be aware of your own emotions.

Be well yourself.

Early Morning Conversation

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Where is this place? I don’t know where I am. This, a conversation from two days ago, sticks in the front of my thoughts as I write this. Where is her Parkinson’s taking her?

A few weeks ago, Cheryl slept late. After I had been up for an hour I went in to check on her. She was sitting on the edge of the bed waiting for someone to come get her. She thought other people were here. I had been watching TV news.

I dismissed it as early morning muddled mind.

On this morning I was able to get her up to take her meds shortly after the alarm went off. I did this yesterday and she slept for another couple of hours as she had not slept well during the night. She did well after that. I patted myself on the back for getting through a new behavior of sleeping late.

This morning afterward she wanted to sit down on the edge of the bed and I assumed she was going to decide sleep some more or get dressed. My assumption was a bad one. She needed me to stay with her and help her. Later she came out of the bedroom angry with me for not getting her up for church. After a deep breath to swallow an equally angry response I assured her that today is not Sunday and the church service is on Sunday at 10.

On this third day I changed tactics a bit. I brought her meds, helped her to the bathroom and back to bed. I laid with her for a bit until she started snoring gently. I got up.

Checking on her later I found her sleeping on what is usually my side of the bed. I do wish I could see inside her mind to take part in her experience. Her sister and she slept in the same double bed as children. Often in her dreams when her vocalizations are understandable she is talking to her sister. Sometimes she has told me in the dark as her surrogate sister to stay on my side of the bed and quit hogging the covers. (I’m smiling here.)

Her sister is in her thoughts. Jan has spent the last several days in two different hospitals in Florida with blood clots inhibiting breathing. There is no Covid-19 according to the testing but deep vein thrombosis is suspected. She is home now with doctor appointments and physical therapists coming and going. The whole family is worried for her health but especially her childhood bed mate.

Writing this over a period of several days I have come to understand the agonizingly slow progression and the painfully irritating non-linearity of that progress.

In the late afternoon and evening her questions and conversation indicates that she senses others in the room or nearby. These ethereal presences are often young children. Tonight she looked to see who else was joining us for dinner. Later in her office she was talking someone about markers and where they could be found if they needed them to color with.

Her doctor says, if these become troublesome, drugs can be prescribed to combat the symptom. Troublesome how? Miragic little people are rarely trip hazards. I suppose if she trips over things that she cannot see because of the hallucinogenic little people, that would qualify as troublesome.

Sundowners syndrome. It is a thing. https://www.parkinsonsresource.org/news/articles/what-is-sundowning-what-causes-it-and-how-does-it-impact-the-caregiver/