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Directness

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Direct speech cuts through the fog of PD but if it is done without thought it can sound hurtful to the parkie.

As Cheryl and I move farther down this road of Parkinson’s disease, it becomes more and more important for me to speak a little bit slower and more distinctly. Two things I have noticed recently tell me that Cheryl has a harder and harder time following conversation. The first thing I noticed is that more often after I have related a story to her, she will ask a question to clarify it that indicates she did not understand what I was talking about from the beginning but was too polite to interrupt and get a better understanding from the beginning. The second thing I have noticed is similar in that she is certain that she understands the story and at the end comments that the person – someone different than who I was talking about – etc.

To counteract that, I hereby resolve to take a deep breath more often and allow her to jump in if she has a question. The other aspect of that is that she has a difficult time following group conversations. Zoom meeting conversations seem specially difficult.

It will be tricky though. She perceives that I am angry when the expression on my face reveals that I am disappointed that she did not understand my comments. (Maybe I am because I realize I have gone on and on without letting myself detect whether she was with me or not. Or maybe I want to believe that.) I do try to not be angry. I do also miss the fact that we used to have animated discussions about a wide range of topics – political, religious, emotional, parenting. There are a lot of those in fifty years of a marriage. We cannot do that any longer, she cannot always follow my thought progression. And Cheryl, oft times, completely looses the thread that she was trying to explain and will give up mid-sentence.

I have learned to not ask questions while she is laying out her thoughts about something. I do not always do it. We have been married too long and she is one of the most intelligent people I know. I love her too much. We used to challenge each other in our thought processes. It takes little commentary from me to knock her thought train off the track. And when I do that she perceives that she is “being made fun of”. It saddens me and no amount of apology can remove my internal guilt for being a dumb ass and forgetting about her current situation. I should have kept my mouth shut so she could get her though out.

I suppose that a caregiver spouse is doomed to the fire of dumb-assedness occasionally and maybe even often.

A Small Prayer

Lord, help me to understand that I do not know all the answers, that only she knows how and what she is feeling.
Teach me to be supportive when necessary, to be the explainer when asked, or to be the leader if called upon by her to do so, but instill in me the patience, wisdom and empathy to determine which of those is called for this time.
Please lift me up when I am down, show me the humor in awkward situations and nudge me when I lack understanding. (Do not make your nudges subtle for I am male.)
Send me “Aha” moments for us (but specially me) to grow through, messages from above for us to share and empathy so that I can step into her shoes and readjust my attitude.
These are selfish asks and I have asked for a lot Lord, but the most important is my request for forgiveness when, in human error, I tread upon her heart.

I added words to a prayer written by another caregiver Facebook friend that she wrote from a wife’s perspective. On my computer home page I simply call the file “ReadThisEveryDay.pdf”. I read it almost every day but not often enough during the day to remind me of transgressions.

… be still my heart.

Very different day to day and from day to night

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This is written over a period of several days. A series of notes about odd behaviors that seem to occur late afternoon into the evening.

Exhibiting oddly meaningless compulsive behaviors, she arranges and rearranges various papers. Talks about another topic while waving around an email printout of a hair appointment.

Talking to the kids in the room shining a red light in her eyes. “Just leave me alone until I get this done.” — woke me from the depths of my novel to find out to whom she was talking.

Stacking and restacking paper.

That was last night. This evening she exhibited similar strange behavior.

Reading and re-reading various things she has printed from email.

Anna to the rescue. I sent a text message to my daughter and asked her to call her mother. Sometimes that bumps Cheryl out of her circular confusion. And then she magically came out of it.

We played Scrabble. This is a game that Cheryl dearly loves. Even with the Parkinson’s she is still good at it. I also turned on every light to make it brighter in our condo. She was in the midst of beating me when our daughter called. Reprieve!

In the morning we had a small conversation about when we were going home. We were home. I pointed that out and asked how she slept. She replied – not very well. This place does look like our condo though. Are any of the kids here? Me: No. Only us here today. Cheryl: That’s good. I’m tired I think I will lay down for a while. She went back to bed and slept for a couple hours.

I am starting to think that her meds may be screwing with her sleep patterns. Her devotion to her office and email in the evening she defends by saying – it is the only time I can get anything done.

I guess I am trying to work out how to explain these behaviors so that the doctor can make sense of it. He and the nurse practitioner do listen to me. I am grateful for that.

Every day is a winding road. – Sheryl Crowe … truer words were never sung.

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.

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!

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/

Sleepless Nights, Urgent Wanderings

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2AM: I hear the shower running. I felt her get up and realize she is not merely washing her hands. Cheryl does not know what time it is. Or, probably more correctly, she does not have a good sense of – when should I start preparation for church this morning. Church is at 10AM. I get her to turn off the shower and come bad to bed reminding her that it is eight hours away, so, no hurry.

5:30AM: Can I lay down here for a bit? She awakens me and asks permission to lay back down. Sure, I say. Let me help. Did you take a shower?, I ask. She is no longer wearing pajamas. She is in her bathrobe and damp. Yes but I need to lay down for a bit before we go. I help her back into bed and ignore the conversation about what time it is. I’m a little peeved at myself for not detecting her getting up again or hearing the shower run.

6:30AM: She gets up. Most parkie’s have lost their skoocher so in Cheryl’s case when she gets out of bed it is like trying to sleep through an earthquake – magnitude 9-ish. I am still wondering how I slept through her getting up at 5AM.

7AM: I hear the TV come on to the morning news and I relax a bit. I think that she has taken her morning meds and is sitting for a bit watching the news. I relax enough that I fall asleep.

8AM: I get up to see how she is and discover her asleep in her lounge chair. I get some coffee and reheat it in the microwave. I look and find that she has not taken her meds. I get them for her and some water and apple sauce for the sticky ones. She announces that she does not think she can go to church.

8:30AM: She goes back to bed for a nap.

10:15AM: She is up again. We have coffee cake and tea for her , coffee for me.

The days begins again. Parkinson’s disease sucks but there is no reason to loose sleep over it. The loosing sleep part will occur naturally.