Caregiver diversions

Notes are Great

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(This picture of a fossil track called a mortichnia heads an article in Omni Magazine.)

But impressions are better. They are more general. I was thinking about this early this morning while writing in my little log where I make notes about Cheryl’s day to day.

I note sleep patterns. I write when she goes toward and eventually gets into bed. I know this intimate detail because I have been helping her get her pajamas on and positioned in bed. Most nights she stays. Sometimes she has gotten back up and we will sit for a bit while I get finished with whatever I am doing before going to bed. Many times that is writing this little blog or my “Hitchhiker’s Guide” to care giving. (I am collecting stories and thoughts in a book.)

We have been speaking untruthfully to therapists when they ask, Do you need help with getting dressed? I usually respond with sometimes but mostly not. Cheryl mentions her numb feeling fingers which get in the way of snaps and buttons. None of these are on her pajamas but late at night it is confusing to her.

I note conversation in the evening which lately is confusing. I have thought it might be interesting to capture it and transcribe it. It suffices to say that it is very odd and non-linear.

It is better to stay in the moment. It is better to reflect on those moments and write my impressions later.

Carpe Diem.

Word of the Day – Dumfungled

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Word of the Day – Dumfungled
By Kath November 9, 2022 Word of the Day

Dumfungled (verb) (Scots)

dum-fun-gld

  1. mentally and physically worn out.
  2. done for, wasted
  3. Some beer would be good. Perhaps a nice single malt.

Example sentences: “Leave me be, hen. I’m feeling dumfungled at the week I’ve had.”

My sentences: Dumfungle the competition and take over their area. | Dumfungling takes a lot of time but it is so restful afterward. | AND | My wife has Parkinson’s disease, so, she is dumfungled in the evening.

Oft times as a care partner I find little diversions to take me away from our daily existence. Reading, language, words, word usage and humor are mainstays of my diversions. This word-of-the-day from a site in the UK captured my interest today. Thank you Kath – whoever you may be.

Carpe Diem.

7AM and a Funeral

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In an amazing amount of support for our dear friend Linda, Cheryl was able to fall asleep and stay asleep over night. She slept well and this morning she awakened to the 7AM alarm put out by the loud and annoying alarm clock. The past few weeks she has trained herself to ignore it.

Diana, Linda’s sister and very special best friend, left us last week. Visitation for friends and family happened yesterday evening in the afternoon. I thought that would be enough for Cheryl. On the way home from the funeral home we stopped for a bit to eat. Between mouthfuls of hamburger and a review of the dessert menu she told me that she wanted to go to the funeral tomorrow. I reiterated the fact that the funeral mass was across town and at 10AM meant that we would be leaving the house at 9AM. No matter she said she wanted to go.

I told Cheryl she would have to trust me that I would get her up and moving in time to make it. It is very important that you sleep well overnight, I told her. She said she would and she did.

This day is to remember Diana Sehlhorst. Diana came to our condo a couple times. Once after her husband Dan passed away Linda was having a conversation with her about moving to a smaller place. Linda did that after my cousin Frank died many years ago. Linda bought a condo as part of an old home overlooking the Ohio river. Ours is a newer building overlooking the trees in the back and a great view of the sunset across the valley from our parking lot in the front. Diana was looking at options. What she eventually selected was way different than both of those.

I wrote the event on our calendar and posted it on the morning erasable board. I got Cheryl up, helped her to toilet, found her comb and glasses. I went off to get Frosted Mini-Wheats as requested. I asked again if she wanted to go to the funeral mass. Cheryl insisted that she still wanted to go. We left in good time and Google maps guided us to the back of the church property because that was the swiftest way there (allegedly). I navigated my way around the block to the front of church.

Sitting in church waiting for the start of the ceremony I noticed that even at a sad event as a funeral some folks naturally smile. Even with despondency, tiredness and family sadness smiles appear. Little children make older folks smile. Diana had many grandchildren. Not everyone is capable of smiling at somber events. I think that I am not. Even in death there is rejoicing. The comment, “She’s in a better place.” is a tribute to death as a state to aspire to. Funerals sadden me.

We arrived in good time about twenty minutes ahead of the scheduled start. As the ceremony got started and Diana came by in the casket, Cheryl needed the restroom. As Diana came in we headed out to the restroom in back. And we forgot the purse.

At communion Cheryl told me she did not want to go up for communion. After the restroom we sat in one of the rear pews. St. Lawrence church is a long narrow building constructed in the old form of shaped like a cross. It would be a long walk. I went to communion , collected the purse on the way by our previous pew and returned with host. I broke it in two and gave her half. She said, amen.

Diana’s son at the end of mass delivered a small discussion of a lesson he learned from his mother in his impressionable early teen years; If everyone gives 100 percent it’s easier to meet in the middle. Words to live by, I think.

We came home and Cheryl had ice cream for lunch.

Carpe Diem.

In the Morning

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In the morning after she has had her meds and has had something to eat and has been up for a little bit, she seems like her old self for awhile. It’s different on different days but this day she is like her old self for an hour or two.

It is interesting and calming to me when it happens. We have little teasers in the morning. I ask her if she wants coffee. She says no. I don’t drink coffee. She used to drink tea but she has not for several months, maybe a couple years. But I always ask her still.

When we were still working for someone else it is how we started our day. She never drank coffee in any form. It was how I got through college and everyday since. I stopped using sugar in about 1974 or so as a protest against the sugar industry. I am able to remember when sugar was ten cents for a five pound bag. I have not seen five pound bags in our little IGA for some time.

Cheryl always drank tea. I have some year-old tea bags in the pantry. Occasionally I will drink tea. Iced tea in the summer is pretty good. Dad used to drink iced tea. I think that I drink iced tea in his memory.

These days Cheryl drinks orange juice with breakfast whatever breakfast may be. Nothing else is satisfactory for breakfast. No milk, no coffee, no tea only orange juice satisfies.

In the evening and on this particular evening she wants to go home. She seems to understand that she is home and somehow not home as I explain why all her pictures, papers and clothes are here. She will say, yes but I want to go home. My heart sinks when she says this. It used to make me panicky. There is no answer. I explain that we are home already and we will sleep here. If she wants we can go home tomorrow. That is okay with her but sometimes we have to call her sister to tell her where we are overnight.

In the morning she had been so much like her old self. In the evening she is different, unsure of where we are, uncertain of who I am, and wants to go home. The ups and downs and general upheaval in the same twelve hours or so of wakefulness is remarkable. Parkinson is scary stuff. (Some would say “shit” but I will not.)

…And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.

– Desiderata by Max Ehrmann

I am not convinced, Max.

Carpe Diem.

Too Little Too Late

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Sad words of defeat and disappointment

Disgusting words of skeptical cynicism

Throwing in the towel in defeatist mysticism

Certain that you are beaten

But wait something did change

A small difference, a tiny deflection, a glimmer of light

A sliver of hope, a glimpse of a dawning

A view of the next phase is within range

It may have been too little too late

To do nothing is neither a little or late

Doing nothing is an abatement, acceptance of defeat

Sad words indeed

Too little too late

These thoughts jumped into my head the other day when I was reading a comment from Cheryl’s cousin. It is often used as an epithet. The follow up question of “what would you do?” often merely raises tension instead of being treated as a valid entreaty for knowledge.

Life is complicated and rarely in sharp contrast.

Carpe Diem.

Christmas and Parkinson

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Cheryl has it in her head that Christmas is any minute now. The calendar fact that Halloween is next week does not dissuade her vision of the immediate future. Often when she makes comments almost daily now about cards, cookies, toys and generally shopping for the grand kiddos, I correct her and point out that we have about eight weeks to go before we need to worry.

We have only one grand child under the age of fifteen. My secret grand plan was to give every kid money and let them go find something that they covet. Zachary is only five so shopping for him takes us back to when the parents were that small. Good memories and fun times were had by all and I admit I like to shop for little people. (Maybe I should tell my soon to be fifty year old daughter that her mom is getting her a Raggedy Ann for Christmas. Be surprised and delighted. Is Raggedy Ann still around?)

So why are men so obstinate? Why am I stuck on correcting her delusion about the calendar time? I am not going to let her miss anything. She seems to not be disappointed when she indicates Christmas is next week and I say, no it is the week after or some such other baloney to satisfy her that the perceived need is not urgent. She wants to put up some Christmasy decorations. Why not? What is the harm if it satisfies her that all is in readiness?

Cookies

Two days ago like many days previous she wanted to make cookies for Christmas. Yesterday early in the day I put together the dough in preparation. It was our intention to make the cookies after we came home from dinner last evening. It did not happen as we became distracted with watching a couple PBS shows that are our favorites. I promised today after exercise class we would make cookies.

After a little lunch we got started on the cookies. In my maleness I sort of bossed her out of the way to start the process. Why I did that I am still discerning. Maybe in another life I will know why or not. She wanted to make the dough balls for the snicker doodles. I reluctantly backed off shifted into check-on-her mode.

Music

I once worked for a small company that had a six hour loop tape of Christmas music that played on the hold line of the office phone. One of the partners had read a book about how office workers liked to hear and were more efficient with music playing. He piped the hold music into the overhead speakers. It was like working in an elevator that was stuck on the wrong floor. It was agony.

She said to me, “Get your music machine out and turn on Christmas music.” She means Alexa. I cringed when she told to do that. I think I grumped a little too and then I went to get the hockey puck I move around to listen to music. A Christmas song or two in among others is okay. WARM 98’s idea of solid Christmas music, old, new, good, bad, chipmunks, Benedictine monks, rock and roll, country-western, some group of nuns, Bing Crosby, etc. a few years ago lost me as a listener. That was not a big deal to them since I rarely listened to their station. Five weeks of Christmas music is agony to my ear. I feared the worst was going to happen – Christmas carols from Halloween to Christmas. There would be no “Monster Mash”. I said loudly, “Alexa, play Christmas music!”

Christmas music always makes Cheryl nostalgic. She remembers the olden days when she was a child. Nostalgia makes people tear up. Cheryl is no different. With her version of Parkinson, her emotions are on her sleeve. “I’m Dreaming of a White Christmas” started coming from Alexa. Bing was doing he usual great job. Cheryl was five when this movie became a favorite in the post war ‘50s. In the middle of scooping cookie dough into one inch balls she started to cry. There is nothing I can say to assuage her nostalgia and longing for her childhood. Those are most of the only clear memories that she has. A runny nose and drippy eyes are not useful for rolling cookie dough into balls for snicker-doodles so I eased her out of the way into a chair while I finished rolling the cookies.

I suppose we will do cards another day. Why are men so obstinate?

Carpe Diem.

Parkinson Hacks

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When did the term hack get substituted for coping strategy? This is an unimportant question that jumped into my head watching the morning newsy show. The gentleman was talking about traveling and airfare and airline scheduling nuances to guarantee getting there on time and not have any trouble. He shared his ideas for traveling early on Thanksgiving day and traveling home Friday. Getting back in time to watch football for the rest of the weekend. He could have FaceTimed his family that he did not want to visit for long. It could have saved a lot of time and money. (That is a hack.)

Wouldn’t it be great to make a list of hacks for Parkinson and his damned disease? He found it. Why did he not write a manual? Even written in the flowery English of the 1800’s it may be of use today. Nevertheless if he published other than his observances to the medical community (The Shaking Palsy – An Essay), I missed it. Parkinson describes a shaking motion. Today his name is associated with a wide range of symptoms, behaviors both movement and cognitive.

In our support group meeting on of the topics posed was “Share one piece of information, a coping strategy (hack), a motivational thought you wish someone had shared with you when Parkinson disease first made an appearance.” I have several and it has taken me a long time to learn them.

Cognitive

Often but not always a person dealing with Parkinson will have cognitive issues in addition to movement issues. These can come in many forms; hallucinations, sensing others, detecting others presence, odd beliefs with little knowledge, delusions, lack of time sense, lack of calendar sense (day), short term memory loss, aphasia, to describe a few. When you detect this happening in the person whom you are helping – Don’t argue. It is very easy to fall into the trap of trying to correct things. Remember with memory loss everyday is a new day.

For me this is an ongoing learning experience. I do use argument (not quite the right term – dissension? – justification?) as a method of attaining her focus because when she is mad at me she is completely focused on what I am saying to her. Often that is when I am attempting to prevent a fall or a near fall. She wants to continue doing something that is to my mind unsatisfactory, bordering on dangerous with her worsening movement control.

I do not do this often because the side effect of having her angry with me can last until bedtime. Sleep I have found is refreshing to her in a way unlike nothing else.

Meds

As a care partner it is extremely important to control meds, medication timing and to observe any issues or effects of the meds. Is this new behavior due to her worsening Parkinson or due to the new med or aging in the old med? It involves lots of reading and observation.

Whenever a change is ordered or a new med is added, the care partner must become observer and research assistant.

Checking activities

Check, check, check on things. A task that might take ten minutes for a non-Parkinson could easily take three times as long. Allow for that when planning activities no matter how small or how large. Parkinson time is different that regular clock time. Many diversions can creep in. In fact scope creep has to be tamped down continuously. (A trip to the toilet can easily morph into putting on a whole new outfit.)

Providing Help

Interfere and help. She may not want your help. Help anyway. Apologize later for helping. Do not help before it becomes apparent that she is truly and hopelessly stuck. Mentally she might think that there is hope yet and she does not need your help. It is also possible that she will not remember you helped. Just help.

Social

Generate social activities for yourself and your partner. Go out to lunch. Go out to dinner. Visit friends and family. Take walks in the park. As much as your are able look for or create on your own opportunities to be outside and exercise. Seek out exercise venues that cater to people with movement issues. (Physical therapy is one to one. There is very little social interaction.) Specialized exercise classes are far more social.

Socializing in general stretches the brain and often requires dual activity such as eating and talking. Walking and talking in a park is an excellent form of this socialization and has a third benefit of giving the body a chance to make vitamin D. Multitasking is hard for the Parkinson brain.

Caring

You have to create a network of care. You may think you can do it alone. You cannot.

Attitude

Don’t give up. Choose to be happy. And seize the moment.

Don’t be shy – lower your expectations of people

Ask for direct help. Rarely do people when asked for help say no. Usually they say that they cannot right now. Follow up and ask when they can. This can be difficult.

Carpe Diem.

Poetry and Other Prayer

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i carry your heart with me

By E. E. Cummings Copied from the Poetry Foundation

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
                                                      i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

A couple people help me occasionally with Cheryl when I need to do other things. Today I had planned to go visit our lab area at a nearby community college but that changed early this morning. I sent a text to Linda and told that the situation changed but she was still welcome to come visit for a bit. She came and we talked about her sister who is struggling with cancer and other things going on in her life.

In a different discussion Linda revealed that Frank (My cousin, her husband who passed out of this world a decade and a half or so ago.) kept a book by E. E. Cummings on his desk in addition to books by Robert Fulghum (It was on fire when I laid down on it, and others.). I vaguely recalled that Cummings was a poet but I was not sure so I looked him up on the world wide wait. I was proven correct and I went to a poetry website that I occasionally visit. Searching for some of his work this was the first poem displayed. (I think Frank was talking to me.)

Thanks Linda and Frank. I have found another poet who speaks to me. And thank you Poetry Foundation for being there when I need words to guide my heart.

Carpe Diem.

We Got There!

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When she is running on parkie time and I manage to get her to her exercise class on time without arguments, mostly none, I get a feeling of pride of accomplishment. Seek accomplishment in the small things of life and bigger things will follow. Or I think that they will.

There are lots of life plans and platitudes similar in sentiment. Keep track of the pennies and the dollars will take care of themselves- is one from the business world. Manage the little things and big things will come your way. Yadda Yadda Yadda.

She seems to be enjoying class. It consists of a group of boxing like motions while seated. A similar class uses dancing moves. The constant motions raises the heart rate.

Friday is always a bit tricky since the class that she likes is at 11 am. All other classes are at 12 pm and later. Generally her best time of day is 10 am until about 7 pm.

Carpe Diem

Part of a Study

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Pfizer is conducting further trial testing of a mRNA style flu vaccine. Their ad popped up on Facebook a few weeks ago and I answered it.

The first visit about 3 1/2 hours long was taken up with health history and all the normal blood related questions. After the initial interview an official doctor, he had a stethoscope draped on his neck, came in to ask many of the same questions. Good cop, Bad cop? I think that we were waiting for the vaccine to melt. A third person came in to train me on how to label nasal swabs that I needed to do if I felt like I caught the influenza virus from somewhere. Eventually another came to a blood draw. And another came to inoculate me with the double blind test substance. Every day in the evening for 7 days I have to report any and all symptoms on an app. I waited 30 minutes after the jab to make sure death evaded me.

I returned home to the cookie mess. Cheryl had decided to make more Christmas trees but had run out of gas, strength, linear thinking and wherewithal to complete the cookie dough. I guessed there was not enough butter and no flour in the mix. I saved the cookie dough but put them in the oven for too long. Probably should have been 10 minutes not the 13 that I had selected because I thought it was 15. The cookie expert (Cheryl) always says, set the oven for a couple minutes short and look at them. (The recipe words were nowhere to be found.) Oh well, I like crunchy cookies. She likes soft cookies which I think are under done.

Afterward Cheryl recognized that she could no longer make cookies on her own. Or she at least expressed it that way to me. Today she probably does not remember that at all.

Carpe Diem