Make Time & Wellness v. Forced Time & Illness

Last night I found my clothes and Other conversations

The day that we had these conversations, generally speaking, Cheryl was having a pretty good day. When she is in this “pretty good day” mode she remembers many of the funny little conversations we have had in the middle of the night if I ask about them. It is as though she can step away and talk about what she was seeing or thought she was seeing . Her cognizant brain is able to view her in-cognizant brain’s thoughts and interpret them as not quite right or even odd.

We were walking on our 1-ish mile loop

We were walking on our favorite one mile (not quite but close) loop near Mill Creek. She tells me – you know when I get up at night and some times I go into that closet by the bathroom where my pads are and get a new one because it seems like I leaked a little? I have pads in there. Do you know where I mean? Me – yes. The closet by the bath tub you mean? (I am not sure where this is going.) Her – yes. That’s the one. Well, I saw a lot of clothes in there that looked like mine. How did those get there? I don’t remember putting those in there but I’m pretty sure they are mine. At least they look like clothes that I have. (Insert a puzzled loving face here. Most emojis do not work.)

… Patience, wisdom or empathy — which one of those is necessary now? I just go with the flow most times because I am unsure if she is standing outside her thoughts or reliving them. I said to her that we put our clothes in that closet when we moved into our condo. And when I do the laundry I hang your shirts and pants in there if they need hanging so maybe I put them in there when you were not looking.

a foggy day

She responded with – I have no memory of moving. (Oh, poop.) She goes on to tell me – I remember looking at the condo but I really don’t have much memory of the day we moved. She phrased that in a fashion that indicated to me that she knew we had moved to a smaller place about 4 years ago but was simply fuzzy about the details. Four years ago she did not seem to be struggling mentally. I could have not noticed at that time because her mother was still alive and she was making a daily trip to Bridgeway Pointe where her mom was staying. Our life was busier then. Her main complaint was her knees which in my mind was the main reason we moved. Our condo is a flat one floor two bed-roomed affair with a small den that I have taken over for my man-space. There are no steps in or out.

She continued with – If you are looking for my clothes there’s some in there. At least they look like my clothes. Me – yes, I think they are. There are some in a tub too. Those are your winter things that are saved away for the season. Her – yes there are. Now at this point I am thinking she is coming to believe that her clothes are hanging in the closet. But then she says – I am not sure where your clothes are. Me – that’s okay I will look for them when we get home. They might be in my armoire. I will look. She seemed satisfied with that and we walked on talking about other things that were sky and weather related.

Which clock?

our bedroom clock

Early one morning the clock in our bedroom which is electronic and looks like the image above did not alarm at 7AM as it usually does. I woke up anyway at about a quarter after 7 and went to get Cheryl’s meds for 7 that day. I helped her up to the bathroom and after she took her meds and was heading back to bed for a bit she said – I don’t understand how do you know what clock to use. Me – I use that one to get up for your seven o’clock meds. It’s a little off. (I was thinking of the wind-up in the living area which bongs out the hour all day long.) Her – is it eastern time? Me – yes it is.

It was my mistake thinking she was comparing the clock’s displayed time to the gongs from the living room clock. No such thing. What she was really telling me is that this clock is confusing to her. About now it displayed 7:22AM or so because the alarm did not sound at 7AM. She did not recognize that the first dose of meds were a little late but she did recognize that the time was wrong. She could not make that connection.

Admittedly when I bought the clock I thought it would help her understand the time of day. In the picture above it displays “Morning”. it also says things like early morning, evening, afternoon, late afternoon and so on. I turned these messages off because at first she would say – what does that mean? Early morning? It is dark out. It seemed to be too much information so I turned it off. I said to her – yes it is eastern time. The whole daylight savings thing is confusing to her and an unimportant imposition by the deep state agency called NOAA. (smiley face.) It occurs to me that I could “spring ahead” or “fall back” at 2AM. I am often up about then for a potty break about then. I do not think the time police get up until about 6AM.

For the rest of this morning she was tired. And the same throughout the day. It is as though the whole discussion about time wore her out somehow.

Everyday comments

Who is eating with us? Sometimes phrased as – Is (name) here too to eat? Or similar. Is everyone eating? — she will ask when I get her out of her office to eat the dinner I have prepared.

While she is working on her birthday card list or Christmas card list the people that she is thinking about become real to her. Occasionally she will talk to them. She will ask questions and talk about what she is doing.

With the pandemic pandemonium we have had many Zoom meetings – She will ask; Where will they all sit? Do we need more chairs?

Carpe diem – I attempted sourdough bread today … a bust on the first experiment. I guess I was hoping the starter would react like real yeast in a jar. Nope!

Maybe in a week after I can find a better name for the starter other than “Larry the Loser”. Maybe “Jack it Up” or “Spring Forward.” (another smiley face)

Perhaps this is one of those “aha” moments.

Funny Thing happened on the way to Church

Saturday as we were pulling into the parking lot of church for the 4:30 service, Cheryl looked at me and said – you can just leave me off and I’ll get a ride home. Not knowing where that had come from I asked – why would I not stay with you?

She responded with – since you are angry you don’t have to stay. Me – I’m not angry. Why do you think that? Her – you were mad about the water.

She is right! I am angry about the water bottle I forgot. I try to take a bottle of water with us when we go somewhere. Occasionally she needs it. Most times not but I want the option. This time I had failed and angry with myself.

I had commented that we forgot water. I may have said simply – there’s no water. We drove church in silence as I was thinking about if there was enough time to stop somewhere and buy a bottle of water. I was mad at myself, not her. It showed in my voice. She thought I was angry with but didn’t say that until we got to church.

She thought I was angry with her. It was much of my conversation with her eating afterwards. We used to go to dinner somewhere after church before the covid thing. Covid-19 stopped that but on Saturday we were starting again.

It’s a small delusion. She interpreted my silence as being angry with her. I will try to watch for it next time and hopefully not beat myself up for missing it.

Caregiver Stress 101

A Morning Conversation

Yesterday was an interesting day. (Also known as Monday, bloody Monday except that it was Tuesday.) It may have been the first glimpse of the future difficulties that Cheryl and I will have to deal with going forward in our Parkinson’s disease life.


As a retired engineer I tend to think of things in a chronology, this then that then this and so on.

I have written some of these thought postings this way. This one is that way simply because I think in my mind I am unsure of the exact sequence of things. And remembering the sequence helps me to recall the conversational exchange and my emotions. I regret that I am not that great at pulling the sequence out of my head but when I do the rest of the story follows.

Jan and kids in bathroom

At about a quarter after six in the early twilight of morning my bladder insists that I get up to empty it. I find as I get to my seventy-first loop around the sun that my bladder seems to be on a three hour cycle. It is amusing to discover that I have kept a tally in the back of my head and can retrieve that at will. On this morning I got out of bed as quietly as possible because I could hear Cheryl gently snoring on her side facing away from me. I came back to bed and as gently as I could settled back into the warm comfort of pillow and blanket thinking to myself that the dammed alarm would go off in a half hour but maybe, just maybe, ten or fifteen minutes of unconsciousness still lurked in my future.

Cheryl sat up about halfway and said – Jan? Are Jan and the others gone? We have had similar conversations in the early morning twilight. I have become part of her dream and she does not always remember them. So, I responded – Yes, I think Jan went home. (Janice is deceased. She passed away about two weeks ago. She is very much on Cheryl’s mind.) Cheryl responded with – What about the others? Me – What others? Cheryl – Those little girls that were with her. Are they gone? Me – Yes they left too. They had to go home. It was getting late. Cheryl – Okay. Good.

She gingerly got out of bed making little moaning noises along the way. Her arms and legs often hurt her in the morning. Sometimes she complains of cramps. Sometimes she reports that they merely hurt. On this night it seemed to me that she had not spent much of the night twitching her arms and hands with dyskinesia, so I cannot associate her movement with muscle cramping and ache. She went into the bathroom and turned on the light after closing the door behind her.

A few minutes later she returned. She had left the door open a bit and the lights on. This is a new behavior, so I asked – Why did you leave the light on? Cheryl – Jan and those kids are in there and they need some light. Me – Oh. (as I rolled over to face away from the radiance of ten LED lights on ten percent power. They are amazingly bright in the early morning.) Are you coming back to bed? Cheryl – No. It will be time for me to take pills in a little bit. (A surprisingly lucid comment from someone who was just talking to her dead sister moments before.) Me – Okay. I’m going to lay here for a bit. She shuffled out of the bedroom.

I got up to disable the seven o’clock alarm and turn of the bathroom lights returning the bedroom to a natural twilight gray cast. I realized that the illusory idea of ten to fifteen more minutes of blissful slumber was lost so I got up too.

Our kitchen in our condo has no natural lighting, no windows. In an effort to counteract the dark I had installed two bright LED fixtures in place of the hanging fixture that I was always crashing into and the tiny ceiling fan above the front of the range that was merely annoying and never on. Cheryl turned on the lights and was rummaging around for her breakfast. She had taken her morning dose of pills. I made coffee for me and poured orange juice for her as she put dried fruit on her cereal. I found some cereal for me and went to collect the papers from the hallway.

Why are we here?

I opened the papers – the local paper that is now part of the USA Today network for her. She still reads the obituaries. She has done this for our entire married life. And she enjoys the comics. She reads them all and works many of the puzzles in the same section. The Wall Street Journal for me. I still enjoy the business stories and cling to the hope of becoming rich in the markets. I may have started too late to achieve this but I am an optimist who is often disappointed by market outcomes.

We are both eating breakfast unusually early. Over time our get up time has kept later and later until eight am is pretty typical. Most mornings now I get up at seven am with the alarm and get Cheryl’s first dose of the day. She takes them and goes back to bed for a bit. Today our breakfast discussion started with —

  • Cheryl – Why are we here? When did we come here?
  • Me – (uh, oh) We live here we moved here about four years ago. Do you not remember?
  • Cheryl – No. Not really.
  • Me – Does this not look like our house?
  • Cheryl – Yes, I guess so. We live here? We’re not going home?

My eyes well up here when I recall this conversation. It has been a few weeks but we have had it before. I am talking to a different person. She knows who I am but her anchor in reality is gone at this moment. Later her reality will be switched back on, I hope, but for now it is up to me to help her find her way back. It is the scariest thing that I have to do and I am at a loss as to how to help her. No amount of debate helps. Denial of her understanding merely makes her anxious and upset. Imagine that what you believe is upside down is right side up according to the person you trust most to tell you the truth. Are you loosing your mind?

A long discussion ensued. Within this discussion I gently tried to persuade her that this was our place and we did live here. For an hour or so it seemed that she believed me but was skeptical. Eventually she announced that she was tired and was going to lay down for a nap.

I awakened her at 10AM for that dose of pills. I did not want her to get out of sync with her medications today. This is a Tuesday. She goes to a physical exercise class designed specifically for parkies. As I helped her to sit up to take her medication, I talked about this fact. I usually do to assure her that if she wants to rest before class we have plenty of time for that.

I helped her to the window seat where she usually sits to put on her clothes. I must have looked as though I was going to leave again – I was, to take the water glass back to the kitchen – and she said to me – Don’t leave me with these people. And is David gone? He was right here in this chair.

Perhaps, the Parkinson’s motion causes a lack of sleep. The lack of sleep causes all these other symptoms. This will be a hot topic next time we see the medical folks.

I took the water glass back to the kitchen and talked loudly to her while I was away out of the bedroom. I came back and sat in the chair where David had been sitting so she could see me and not David. We talked for a bit and she said that she knew David was not there but she could see him. I asked if he was still here and she replied, no he was gone.

Sitting here now, recounting this episode, it occurs to me that it can be and probably is terrifying to someone to realize that they can no longer rely on their senses. That what you see may not be what you see must be disturbing.

She did get through putting on clothing and we collected all the paraphernalia for her class. Water bottle, pills, bag of Covid-19 safe exercise equipment, my tablet to read during the activity, cane, masks, purse, wallet, car keys, ad infinitum.

In the garage the car made a noise like ruh, ruh, ruh, and then click, click, silence. Car’s battery died. No class for today.

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. 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 to grow through, messages from above for us to share and empathy so that I can step into her 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 her 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. (like a car battery) Fill me with wisdom so that when we walk this journey together we don’t get lost along the way. And please, please, please make this battery thing easy today. — make it be so, make it be so.

Carpe Diem!

Cheryl said, call Dan (her brother). So I did. We did not go to her Parkinson’s Foundations class. It is a series of exercises and movement with her behind firmly planted in a chair mostly so that her balance is not an issue. The occasional exercises that she stands for are behind the chair so that she has a firm anchor to grab. She enjoys these and the activity benefits her. It is as though she has had an extra dose of meds. Her mood is different. Her movement is better for a few hours. We often stop somewhere for lunch afterwards.

We sat out by the garage and waited for Dan to come. I got my bike out and replaced the saddle with the new one I had recently purchased. (For those of you who ride a bicycle for exercise know the importance of a good saddle.) I made various adjustments and rode it around the parking lot. We talked for a bit sitting in the shade of the building. (Carpe Diem.) She did not seem confused about where we were or why we were there or what we were doing. She seems to be back to reality.

Dan came with his magic car starter kit. Left me with his car and he took my car back to his shop to replace the battery. Good news! It was still under warranty. The new one was obtained with no payment necessary.

After Dan left we went into our home. The day was heating up and the A/C felt good. Left to our own devices we both puttered away the afternoon. This is Tuesday – Pizza Tuesday! Cheryl went into her office to get some things done. She has formed a team to help raise money for Parkinson’s research and likes to keep track of how the team donations are going. (The computer has become more and more confusing to her so often I find myself helping her find the right screen to look at.) There is nothing that she has to do with this information yet but eventually it is her intention to send thank you cards to everyone. The thank you card is also a remembrance of our golden wedding anniversary this year.

I took some of this Carpe Diem time to poke a bit at this posting and get my ideas and chronology down. After an hour or so I decided to check on her and see if she was stuck on any computer screens. In addition to being confusing, occasionally her jittery motion with the mouse will cause mystery screens to open or she will fling some file into the background making recovery difficult.

I went into her office and she told me – Nancy is mad at me. I could tell when she drove by. Me – When did you see Nancy? Cheryl – Just now. Me – where were you? Cheryl – I was in my office when she went by. Me – She was in her car? Cheryl – Yes. She does have a window in her office but it faces the forest in the lot next door. There is no view of the street at all. And Nancy lives miles from us, not a long way, but it is unlikely she drove through our back garden.

… Alrighty then, the reality quotient dipped a bit into the red. But it is later into the afternoon and this is Pizza Tuesday. Our next door neighbor and friend Jane will be here to share. Cheryl always has animated and friendly conversation with Jane around. Jane is a godsend and very kind to us. After her 4PM meds, Cheryl went to lay down some more.

We had pizza. Discussion caused or, at least, helped with recovery of reality.

Jane is so encouraging. She could tell Cheryl was struggling a bit. She kept the conversation to pizza and the grandchildren. And at the end of our dinner and conversation it seemed that Cheryl was back again.

This was a particularly bad day for Cheryl wandering in and out of reality with a little bit of hallucination and delusional behavior. Up until now she has not presented all of these together.

As I finish this up a couple days later and reflect a bit, Cheryl does much better with a good night of rest. When we visit with the doctor in a few weeks I will steer the conversation toward this. Perhaps there is a helper med that will allow her to rest peacefully at night. (But not put her out so much that she misses the potty call we all have in the middle of the night.)

Parkinson’s pretty much sucks for the caregiver but especially for the caregivee. Carpe Diem, dude! Carpe the damn diem.

Grab it now or it will be forever lost.


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

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.

Tiny Changes, Creeping Anxiety

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

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.


An Unexpected Slow day

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.