confusion

It is the Little Things

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Glasses piling up on the counter

Most little things are not important to care about.  Our niece, Natalie, who cleans for us once said you are neat people in response to a comment from Cheryl about how quick and efficient she is at cleaning our place.  She is right about that Cheryl and I are neat people generally.  Clutter of newspapers and magazines will appear during the week but by weekend they are in the recycle bin.  I get up and make the bed every day.  While I am cooking dinner which is something I find myself doing more and more often these days, I put things in the dishwasher as I complete a task. We put the dishes in the dishwasher right after using them. 

I’m not big on dusting  which is why I hired Natalie to do that for me but since she has been dusting and cleaning every couple weeks, I have spent time spiffing up my office.  Lately I have noticed a slight changes here and there with Cheryl’s behavior about neatness.  It seems to be another sign of the degradation of mind caused by the Parkinson’s disease.  Something else for the caregiver to do.

The inconsistency of PD is often confusing to me and always frustrating for Cheryl.  I have mentioned this before.  Paul McCartney  has a new album out and on it a song titled “Seize the Day”.  Absolutely one should seize the day but often with a parkie one must seize the moment.  Her day might be disconnected from reality one moment and acutely aware twenty minutes later.

Mail… junk mail

As one gets older the junk mail increases. At least that is my perception. Cheryl used to be able to discriminate junk mail advertising and new credit card offers without opening the envelope. These days each envelope is opened and ruminated over. I think that’s how the Readers Digest started to get delivered. She may have asked me in a weak moment – Do you like Readers Digest? The subscription has been renewed until 2025 or so. Oh well. It was cheap.

Perpetual Christmas card list

Finally it is the end of an excruciating three weeks of getting the Christmas card list in order and sending them out. Cheryl has been looking at printing out and re-looking at the list of addresses she has from 2018, 2019 and edits from this year. This is all made so much harder by the fact that the original list of addresses is kept in an Access database which makes little sense to me. The list itself is a couple names short of 100. Both Aunt Alberta the last of my father’s core family and Aunt Ruth the last of my mother’s core family have passed away in the past twelve or thirteen months. Cheryl’s sister Janice is also gone, as is my brother Bill. Things need to be adjusted.

This exercise is more than just making sure that the address list is accurate.  It is a time to think about those folks. Maybe a letter is needed for the card.  Maybe a phone call is needed to get current.  To me it’s about the list. To Cheryl it is more than that. The sewing machine becomes desk to finish off the last 30 or so cards that require extra thought. Lots of distractions jump in the way of sorting through these last cards.

Is this one of those “Aha” moments that a Facebook friend talks about? Aha! She is not able to focus her thoughts long enough to ask for help. When she asks for aid, it is very hard to understand when I must not push back when she wants to do it differently. I was not able to accept micromanagement in my working career either. This is frustrating. There are four more addresses to go.

We wrote a generic message to those who were left to go. We did this in the car riding to visit my son yesterday. Today when I asked her for the notes she took so I could write it up, she did not know what I was talking about. I had to be very specific in my discussion. But we got there. This is the note:

I have written this short note to everyone on my Christmas card list. My Parkinson’s disease is making typing and writing more difficult as time progresses. So, even though I would like to write a longer note, I cannot do it. I do want to find out how everyone is doing this year, so, if you are interested please send a text message to 5——–0 or email to me@Gmail.com and Paul will set up a Zoom meeting to keep in touch.

Thanks to you all and have a very Merry Christmas!

Cheryl

printed 6 to a page

I probably spend too much time trying to understand why I am angry (at myself) and frustrated (with myself) about a stupid list of addresses. I printed the labels – weeks ago. I just went in to check on the last four. She is handwriting an address for a fifth one to someone not on the list at all. Carpe Diem…

Questions

In a Facebook Parkinson’s disease caregiver’s group – a person asked in a posting if anyone else got driven crazy with questions.  I am not.  I wish I was.  Occasionally she will wander down a rabbit hole and come out the other side anxious about loosing a piece of information, email draft, telephone number or address.

What day is this? Is Scott going with us? What do you think Jan wants on her pizza? Are we staying here or can we go home? Did that guy bring my pills yet? … I do get these sorts of questions.

There is very little straight line activity in Cheryl’s world. Her world has many distractions along the way.

I have read and re-read this several times. I am whining but there it is – a couple weeks in the life of a PD caregiver. It certainly is an odd disease. And it sucks!

This particular image has nothing whatever to do with anything I have written here but amusement parks used to have photo booths in them. Remember photo booths?

Two Young People in Love OR We had Dark Hair Then

There is no value to looking backward in time. It is, however, enjoyable to reminisce about days gone by.

Some More Conversation

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This morning she says to me, “Are we ever going home?” … in an angry tone.

It is kind of an odd conversation but more common conversation to have in the morning. Because she seems to be in a different place in her head, even though she can see all of her possessions and her earrings and her clothes et cetera nearby.

It’s just really, really interesting and disturbing. I am unsure of how to react sometimes and what to do about it. This morning I did pretty much nothing and told her that we were in fact home. This is where we slept last night.

Then I asked her if she needed my help find a shirt or anything like that to put on and that seemed to deflect her mind. AHA – so maybe in the future. What I will do is look for those opportunities to answer her question and then move on to a new topic because she doesn’t seem to get lost when I change direction. She doesn’t insist on talking about where we live and why we are there and etc. Poof! She looks for a shirt.

In the past few weeks we have had conversations about dreams, Jan and furniture. She has a different reality – which is probably the wrong way to say it – sometimes in the evening, sometimes in the morning. It is difficult for me to ignore the fact that she perceives something different than I do. My natural tendency is to correct her perception. (What can I say – I am male. It is built into my jeans. Yep – purposeful use of the homonym.)

I guess we are creeping toward the non-benign form of Parkinson’s disease. Sadly.

I have told her many times that I will stay close by to help guide. She seems to understand for now.

Some days it is hard to find any humor. We use to tease each other. Now she does not understand and thinks I am being mean.

On the Importance of Sleep

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Chronic illness and sleep

As we travel this Parkinson’s journey the engineer in me is hunting for a fix for various things that arise. Lately the sometimes appearance of “Sundowner Syndrome” (SS) has me hunting for information and hoping for a solution. This Web MD article has some useful tips about how combat Lewy body dementia which can be a late stage Parkinson symptom. We do many of the suggested things such as, physical exercise, increased lighting and redirecting. Some actually seem to help.

Many if not most PD patients have trouble sleeping. I think Cheryl may be in the “most” category. These are just perceptions on my part but it seems she has about a three day cycle. On the third day she sleeps well at night. Poor sleep seems to contribute to SS.

Caregiver and sleep

The role of caregiver is a tiring one. One can spend much of the day assessing mood, movement, confusion and cognition. In the background of my thoughts is a constant “what am I missing” anxiety. In most cases it is a misplaced anxiety because I have become very good at ignoring my own needs and thinking ahead for Cheryl. — Oh, wait… maybe I forgot my own needs?

Stolen from the WWW – I like it!

Recently I began to think seriously about what I need to stay healthy both physically and mentally. In the summer and warm months I enjoy riding my bicycle around. It is a love left over from my childhood. When the kids where teenage I took it up again for a few years. About three years ago I did it once again. It allows me to empty my head. I listen to a book or podcast while riding and pretty soon a couple hours are gone and I have given no thought to Cheryl and PD. That is until this year, the year of the pandemic and the year of fear and misinformation.

It has not happened for a some time but approximately 3 years ago and about two years ago Cheryl had a bad episode with fatigue and meds. I took her to the hospital the first time and the fire department took her to the hospital the second time. Both cases where less than satisfactory experiences. Hospitals are not set up to deal with Parkinson’s patients. PD patients have very special medication needs. They have very specific medication needs. This year of pandemic quarantine and isolation and the free flowing misinformation and social media idiocy, whenever I rode my bike around my favorite path I was often worried about Cheryl. I was unable to let go and empty my head. I kept track of time. It was exercise and not relaxation. I became totally focused on keeping her out of any sort of hospital setting and as a result I was unable to dissociate from that thought train.

Even caregivers need proper sleep. On those days previous that I had ridden my favorite route without any thought of Cheryl and her well-being, I slept well. That total relaxation and refresh seems missing to me. I have asked my niece and friends if they would be willing to sit with Cheryl while I disappear for a bit of time. Time that I have come to think of as do-nothing time. I am developing a network of care for her and me.

Mindfulness and resting conscience

It is not sleep but a relaxation technique. Many folks are able to meditate and pray and give their conscience state to something else.

When I was a kid I attended a Roman Catholic school. There was a book called the Baltimore Catechism that we all spent time with. In it or may be with it us kids learned how to pray. This is from Wikipedia — Prayer is an invocation or act that seeks to activate a rapport with an object of worship through deliberate communication. In the narrow sense, the term refers to an act of supplication or intercession directed towards a deity (a god), or a deified ancestor. More generally, prayer can also have the purpose of thanksgiving or praise, and in comparative religion is closely associated with more abstract forms of meditation and with charms or spells. On social media and SMS messaging people tend to add little icons of hands pointing up — in the sense of “praying for you”.

None of those prayers written in the Baltimore Catechism do it for me nor do hands pointing up icons give me peace of mind. I empty my head as best I can and think about good times past and try to not dwell on those and long for their return. I try to empty my head of distracting thoughts about the future which tend to go toward death and wondering what that is like. I try to listen to my heartbeat and let go of anxiety about Cheryl’s care and stay in the present for her — not dwell on what unknowns may be brought by the future.

When I am able to do this the day looks fine.

Foggy or bright? — each morning I get up and attempt to discover how Cheryl is doing that day. Last evening for example we had dinner with our friend Jane who joined us for spaghetti and conversation. Towards the end Cheryl felt like she had to lay down and rest. Jane helped me clean up the dishes and she returned to her home across the hallway. When Cheryl returned her view of reality was confused. She wanted to know if we were ever going to return to “that other place.” We had a long conversation about where we live. It is as though she perceives two realities. She knows where we live but she wonders why we do not ever go home.

Foggy day

We later played Scrabble for a diversion and she went to bed. In the morning she seemed to have no memory of any of that confusion from the previous evening.

I get anxious when she ignores things that I want her to do so that she can get a good night’s sleep. And then I remember that I may not know all the answers. I take a deep breath and try to help her move slowly toward the bedroom at night.

The sun-downers thing that seems to be developing is different at each presentation. Sometimes it manifests as an urgent need to complete some task and mentally she is unable to finish – which makes her anxious – which makes her try harder – which makes her anxious – which makes her frustrated – and so on with a mental state that is almost manic. This may keep going even if I manage to direct her into bed. Her mind does not easily let go of the circular task/completion anxiety loop.

It made me think of Randy Newman’s song from Toy Story. I recently heard it on some news program.

You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy, you’ve got a friend in me
Yeah, you’ve got a friend in me

You’ve got a friend in me
You’ve got a friend in me
You got troubles, and I got ’em too
There isn’t anything I wouldn’t do for you
We stick together and we see it through
‘Cause you’ve got a friend in me
You’ve got a friend in me

Some other folks might be a little bit smarter than I am
Bigger and stronger too, maybe
But none of them will ever love you the way I do
It’s me and you, boy

And as the years go by
Our friendship will never die
You’re gonna see it’s our destiny
You’ve got a friend in me
You’ve got a friend in me
You’ve got a friend in me

– Randy Newman, Toy Story

She will always be my friend. I just want to be hers and give her a smooth path.

This is my prayer and lament.

A Different Reality

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Where is this?

Cheryl awakens in a different place each day.  She thinks that multiple people bring her morning meds to her.  She sees multiple copies of her things. Why do we have so many bathrooms?, she asked me.

It takes a bit of time and a bit of routine for her to get a grip  on reality.  I promised to not tease her and always tell the truth. Sometimes her grip on the actual world around her is tenuous.

It makes me sad. This behaviour is presenting more lately. Mostly in the morning but sometimes we have talked about it at other times as she works through her perceptions.

Pick yourself up, dust yourself off and carry on.

I Got Really Angry Tonight

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Luke’s Sunset

Angry with her confused state late in the day,

Angry with her actions during it,

Angry with my reaction to her actions,

Angry with the disease and what it has taken from her,

Angry that I let my emotions show,

Angry that I directed some of my anger at her.

Angry that I trod on her heart.

Just angry with my inability to fix things.

Parkinson’s disease sucks and it makes me angry. And scared.

Scared for what the future holds.

Nostalgic for our past experience.

Disappointed in my inability to be present.

Totally and honestly present and

Mindful of the beauty of this day.

Unconcerned with the morrow or the past.

Accepting of new relationships and hopeful for new connections.

Searching for clues to doing better.

Hoping for some glimmer of light of

a new dawn.

Night Time Conversations

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Elevators and pills?

It is an odd conversation. Made more odd because it was quarter after six and I was in the middle emptying my old bladder for the second time that morning. Standing over the commode about halfway there, the door pops open and Cheryl looks at me for a moment then backs away and closes the door most of the way. I finished up and flushed the toilet.

As I came out of the bathroom, she asked me – you will have to show me how that works sometime. I replied – do you mean the toilet? No, she said. That elevator thing that you came out of. You will have to show me how to work it. Where does it go?

It just comes up from the pill area, I replied. Good! Can you get my pills for me? I’ll take them but I have to go first. She passed me and closed the door to the bathroom.

I got the morning meds from the kitchen. It was not too early. This was the day after the “fall back” idiosy that we have perpetrated on ourselves to get more golf daylight after work. Parkies have a problem with the shift. It is easier in the Autumn but it is still there.

The next day

It had been our usual (for these days) night. She headed to bed at 10PM after taking her night time meds. She laid for a while with an icepack on her head and eventually gave me the icepack to return to the freezer after several trips to the bathroom.

Over night she got up to go once or twice but returned to bed with out any confusing conversation until about 5AM. — some of this is fuzzy to me — She went into the bathroom for a bit and seemed to be having a conversation with someone. (Not unusual – she talks to the spiders before executing them.) She came back out and told me there was a woman in a pink bathrobe that needed to use the bathroom first. I got up and went into the bathroom and removed her pink bathrobe from the door where it was hanging into the closet and closed the door to the closet. I returned to the bathroom and said – she is done now. It is all yours.

She used the toilet, brushed her teeth and returned to bed. I asked about the teeth brushing and she said her mouth did not taste very good. Now her breath was minty fresh. I told her so and she replied with – I love you.

About two hours later at 7AM the incredibly loud and annoying alarm clock brightened itself and loudly pronounced – Time For Medicine! I got up to fetch her morning meds. She got up and went to the bathroom after I set her medicine on the bathroom counter and helped her out of bed which is another normal routine these days.

Afterward she did not come back to bed. Often we lay in bed until she starts to gently snore and I get up quietly as possible and let her nap for a bit or she gets up after about thirty minutes to return to the bathroom. This time she stayed up. I asked – are you coming back to bed? She replied – no, I think I will put some clothes on. I did not probe any further but should have done so.

I got up and fetched the paper, made coffee and settled into the chair I cannot decide about keeping. I turned on the TV to catch up with the boring political news of the day. This is election day. The TV news is like the pre-game show from hell. … it is a nice day outside but the lines are long at the polling places… reports the guy standing outside a poll in New York City down the street from a boarded up Macy’s. Cheryl came out of the bedroom dressed up to go to church or some other gathering requiring an upgraded look.

Do you know who is picking me up?, she asked. I replied – no one yet. You should have some cereal for breakfast. (I was hoping that she would wake up.) She ate a bowl of cereal.

Afterward she went back to the bathroom, I thought, for a second time. As she came back out she said again, I don’t know when they are picking me up. I replied that no one was picking her up to go anywhere. This, of course, did not register as she was convinced that someone was picking her up to go somewhere. When I asked for that detail – where she was going – she replied, I don’t know but they will when they pick me up. She remained agitated and got her keys and went out into the front hall. (I thought she was checking for mail at 8AM.)

She returned and said, there’s no one out there. Do you know when they are coming? I coaxed her over to her chair (The Chair) and got her to sit down. I moved the rocker over so I could sit and look straight at her. And then I explained again that she was probably dreaming when she heard someone tell her that she would get picked up soon to go (wherever). I repeated this message and the one that we where going to her exercise class at noon today and, oh by the way, this is pizza Tuesday. Some of that sunk in through the fog of confusion because she asked again. I’m not going anywhere? No, not yet I replied. To your fitness class around noon, I continued. I look pretty good don’t I, she said. Yes you do. You look very nice, I replied.

I brought her some tea. We watched some more of the pre-game election news madness. She remarked that her watch agreed with the clock on the mantle but the news person had reported a different time. I told her that we were watching a recorded program – a benefit of cable – and we were watching it on a delay of about forty minutes. Oh, she replied and I could tell she understood. She was slowly becoming present.

At 9:30 AM she announced she was going to put on jeans and rest for a bit. I took her the ten o’clock meds at ten. She went to the bathroom and returned to bed and slept for about thirty minutes.

… 11:09 AM — she is back! But tired. She ate some yogurt and drank a little 7-Up.

Changing time zones is one of the more moronic ideas of the twentieth century carried into the twenty-first. China has only one time zone. Think about it and look on a map.

Cyptoquips and Word Jumbles and Sudoku

Her favorite games in the newspaper are these. Even though she may have episodes of confusion, she still works these. They require both logical and expanded thinking – references to puns, etc.

Parkinson’s disease is puzzling and it sucks.