Month: October 2022

When She Says Thanks

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When she says thank you, I respond with you are welcome.

When she tells me, I’m sorry, I respond with you do not have to be sorry.

We have these conversations all day long. I started this blog post after reading and responding to the Facebook post shown here. I suppose I have not thought of this before but politeness and kindness are very basic to the whole care giving, care partnering thing.

For many months earlier when she was dealing her dementia and before we monkeyed with her meds and bought a new bed so we can sleep better, there was a lot of tension between us at night and this sort of conversation did not happen.

This disease is a displeasing feeling in one’s posterior. Injecting calm and kindness makes the day go easier. (And the night.)

Tonight she is following three different cookie recipes to make something that she is going to use tomorrow. So far I see butter and eggs in the bowl with some sugar. Earlier I was thinking of forcing my help on her. In mid-force I decided what the hell. I can throw away the butter and two eggs tomorrow. Pretty cheap solution to calmness in the household.

Carpe Diem

I get Lots of Newsletters

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This one – The Criminal Intent of Parkinson’s jumped into my email from parkinsonsdisease.net. The writer Dan Glass makes a great point. The premise of Parkinson’s will not kill you but you will die with it – is the perfect example of a distinction without a difference. He uses funnier tongue-in-cheek language than me.

Falls are Scary

Falls can occur anywhere and for any reason to anyone but parkies struggle with balancing; those tiny muscle motions that keep our center of gravity over our feet and heels. Parkies with dementia struggle to remember and use the techniques taught by the physical therapists.

For me as care partner, I am guilty of getting overly upset and excited when I watch Cheryl move around without her walker in our condo. We have a standard looking walking frame for use inside our house. She is using it more but learning is individual and until she wants to do it exclusively or feels wobbly enough, it is not habit and I will have to gently nudge and remind her. Her retort is often, you are always telling me what to do. I guess I am. I fear for her safety. We have a U Step walker for when we leave and go anywhere else. She is used to having it with her but sometimes she will walk around it to get to the garage and into the car. I give her a reminder nudge.

She fell two times this week. I hope this is not a omen. Both in the bedroom doing various activities associated with daily living. The first time our niece Natalie was here cleaning and I was in the bedroom collecting towels for the Wednesday laundry towel load. My perception is that Cheryl was backing away from the dresser after getting something from a drawer. She passed behind me and landed on the floor to my right. As I watched she bent her knees and collapsed on the floor.

I showed Natalie how to help her up by getting a wooden chair to place near her and hold on to stabilize the chair. Cheryl knows how to get up. She maneuvers to get her strong side (right) under her and then pulls on the chair. Sometimes she sits on the chair for a bit to rest.

The second fall happened while she was folding shirts on the bed a couple days later. I had dumped the laundry basket onto the bed and she became interested in folding the laundry. Fortuitously she fell onto the bed sort of face first and did not bend her glasses.

Pneumonia

Aspirational pneumonia is something that I worry about with Cheryl but her cough reflex seems strong for now. I listen to her when she coughs. It does not seem deep or struggled. She does seem to be drooling more.

Angst

Coming from the care partner point of view raising tension between cared for person and care partner person seems at best counter productive. Sometimes saying, “Let me know if I can help” is more calming and useful than barging in to take over the situation. When I think about events that have occurred along the path of this journey with parkinson I tell myself that over and over. Many times I listen to myself. It is easy to carpe the angst of some situation and slip into know-it-all pedantic care giver mode. (Lately i have been catching myself and stopping mid-lecture.)

And doing the best you can to continue with a life not driven by Parkinson is hard work. There is extra laundry. There is extra equipment. There is extra travel time. There is extra time associated with any social event. There is disrupted sleep associated with any specific morning time event. There is menu confusion. There is mental confusion. There is resistance to help sometimes. Nevertheless, as much as you are able to do it, live life.

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.

The Saddest News

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Or what woman, if she had ten drachma coins, if she lost one drachma coin, wouldn’t light a lamp, sweep the house, and seek diligently until she found it? When she has found it, she calls together her friends and neighbors, saying, ‘Rejoice with me, for I have found the drachma which I had lost.’

Luke 15:8-10

In December of last year I purchased a chain of gold for Cheryl to put her 25 year wedding band and her engagement ring onto and wear as a necklace. She had complained for months that her rings were falling off her fingers. She wanted a chain to put them on.

The woman who waited on us at Effler’s Jewelers smiled when I told her what we wanted. I told her to think high school and a senior ring on a chain. (The memory makes me smile. Cheryl is my high school sweetheart, my prom date, where I am home.) She tried it on and pronounced it good, maybe perfect. After a week or so she determined that the clasp was a bit too tiny for her numb and shaking hands to manipulate when getting it on and off her neck. We returned and the jeweler was able to attach a larger clasp. Later she discovered that she was able to ease it up over her head without unclasping it.

She unconsciously would touch her rings and put her fingers through the rings while the chain was around her neck. It would occasionally become tangled and knotted. With another trip to the jeweler I was trained to unknot delicate gold chains. (wooden tooth picks work great) The occasional dissension broke out about wearing it to bed at night. Eventually it was carefully placed in the special box that came from the jeweler originally. The placing in the box became a nightly ritual.

As time went on she added a couple other special rings that she had in her jewelry box. For the past couple of months she has been wearing it with four rings.

In October of this year they are lost. A few days ago as we were traveling somewhere, I noticed that she was putting on a different necklace and I asked her where her ring necklace was and she said, “It’s in my pocket.” I now suspect it was not but at the time I thought nothing of it.

I know that I should not feel guilty about the disappearance of the necklace but I do. I suppose it is the care partner, the 50 years of marriage partner, the help mate, the one who panics most when she falls, the one who is not losing their memory – in me. I feel like I have let her down. I have made it my job to keep track of her stuff and mine.

Tony! Don’t be a phony. Help us out her. THE NECKLACE IS GONE.

Carpe the St. Anthony Diem.

the necklace is BACK!

Update: The necklace is back. It was recovered from the chair she is sitting on. Moral of the story – Don’t make the disease harder than it is. Sometimes stuff just falls in the crack between the cushion and the arm of a chair. (Sorry Tony. You are not a phony.)

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.

Unraveling the Mystery

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… Math, science, history. Unraveling the mystery. It all started with a big bang.

words to the opening theme song of BBT

These words from the theme song of the TV show, “Big Bang Theory” jumped into my head this morning without warning. Cheryl and used to watch this show and occasionally we still watch reruns of the old shows.

I have a little cartoon I made up where I quote from and old Joe Walsh song – “Searching for clues at the scene of the crime.” Both of these carry the same sentiment to me. It is the human search for meaning of our existence and perhaps even the search for God in our own lives.

In our case it is the search for the best day we can find on our journey.

A Facebook friend who also is dealing with a wife who has Parkinson says this. Gordy is more of a biblical scholar than I and has a different sense of God than I do. Here are his words from a couple days ago.

… Everyone – that is, EVERYONE, has a God. A god is that “supreme or ultimate reality;” that thing, entity, power, wealth, object, person, or principality (mindset) on which our life is focused, absorbs our time, energy and finances, and demands our attention and loyalty.
In the realm of the spirit – the supernatural, that “supreme or ultimate reality” is, for the Christian, the God (Yahweh) of the Hebrew-Christian faith. Another god is Allah of the Moslem faith with Mohammed as its prophet, or Buddha, or Hare Krishna, or Vishnu, or a host of other gods or goddesses of other religions in the world. These people all believe in their God and that their God is “the supreme and ultimate reality” for them.
But what about those who don’t believe in the existence of some supernatural being, but choose to believe only in the natural? If everyone does have a god, who might their god be? … As for me and my household, I choose THAT “supreme and ultimate reality.” I choose THAT God! I choose life!

— Gordy Cannon from a Facebook Post on October 15,2022

Gordy has found his God. The only thing I would add is that I think Allah is that same god just merely 800 or so more years down the road of divine philosophy and thought. I will always wonder where the Judaeo-Christian went awry and Mohammed was able to persuade folks that he had the right idea or Joseph Smith and his group or Martin Luther and his followers. (Let’s not bother with Henry VIII). Gordy makes a strong case for his search for meaning in his and his wife’s journey with Parkinson.

The other day when I read his post on Facebook I realized how important it is to find meaning in life… whatever that means to you.

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.

Dementia and Daily life

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No matter how slight in the daylight hours her dementia which is characterized by memory loss, confusion, inability to understand implied ideas (The garbage is getting full vs. Take out the garbage.), following instructions (recipes), calendar time even when displayed (Monday, October 10, 2022 at the top of the newspaper) and random association of objects (old birthday cards paper clipped to new magazines), it seems to affect every minute of every waking moment of her life. I struggle to keep her informed about what is happening or going to happen soon. It is stressful to remember my stuff and her stuff too.

Today’s topic which started at 4:20 AM this morning was a problem with the computer. Which computer I do not know but I assume it is the on in her office. It was stuck working on some background process and that was clogging up the workflow. If I had to guess it was some Norton Defender thing going on tying up resources. She has a Windows 7 operating system and takes very little to befuddle the processor. None of this happened by the way. It was all a dream that popped her out of bed at 4:20 AM. It popped me out of bed too.

After a little discussion and a trip to the toilet, I got her back to bed and I made a pseudo-check on the computer and reported to her that it would be okay in the morning. It was running a background cleanup process. She should get some more sleep and wait.

When these episodes happen in the middle of the night, I worry about her vivid dreams. She called it a nightmare probably because in her dream she had to get something done quickly. The computer was not cooperating. Lately she has had several discussions about work projects for the church and as memories about her working career. Navigating the discussion is tricky when I point out that she no longer works beyond our little condo. What few little officey jobs she did for the parish evaporated with the do over of the parish hierarchy when the Catholic Church in our area discovered they had too many buildings and not enough people.

A lot of old files and booklets still exist in her office. Lately I have been closing the door to her office at night and reporting to her that it will keep the kiddos out of her area overnight. She usually says, “Good. Thanks.”

I did not speak about the computer although I did point out that she was sleeping pretty soundly when I woke her at 9 AM and she remarked that yes she did not get up at all overnight. (She truly was dreaming when I talked to her at 4:20 AM.) I affirmed her comment and helped her get up. I did not mention 4:20 AM. (Am I harping on 4:20 AM? Yep.)

After she ate her cereal and as I was passing through the coffee pot one more time, she remarked that she hoped the computer was okay. I did not expound on that but suggested she should check later when she had a chance. She did and reported all was well.

Carpe 4:20 AM Diem. (I could not resist.)

Post Furniture Arrangement

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Oct 9 & 10 2022

I worry more and more about Cheryl’s odd evening behaviors. Quite often afterwards she “wants to go home”. It breaks my heart that she doesn’t know who I am in the evening. It breaks my heart that I cannot find a solution to helping her get out of those behaviors.

I think I have my own anxieties about helping her at home. I did in the Spring when she seemed to be “off on some cloud” about something in the evening. The dementia experts will tell you to confirm and acknowledge the weirdness. That can be really really hard to do. They do not use the word weirdness that is my word for it. I mentioned to my sister-in-law that I am too much of a linear thinker to simply acknowledge and acquiesce this behavior. Maybe I have too much background anxiety about what is next?

The term used for this evening behavior is sundowning(er) syndrome. The Mayo Clinic has this to say. And the National Institute for Health offers these tips to combat it.

It is great that healthcare providers and institutions recognize it as a thing and give it a name. It still gives me anxiety.

Tonight which is pizza Tuesday, it seems to be easing but whether it is or is not will not be known until an hour from now.

Carpe Diem.

It is an hour or so later and it is looking good.

4:20 AM update – 🙂 – there was a problem with the computer that drove her awake. (There was not.) It took a bit of convincing and me doing a pseudo-visit to the computer, she settled back down to sleep.

Furniture Rearranging

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It is possible that my thought about how to better utilize our space will cause me great heartache. I asked my son and grandson over to do a bit of furniture rearrangement. We do not seem to be as focused on the television as we once were in an earlier part of the journey with Parkinson. Stimulus money from two different administrations left us with new furniture and extra sleeping facilities. The living room remained focused on the television like some early 1980’s sitcom living room. I wanted to change that look. I read mostly but there are a couple shows I like to watch. Cheryl rarely sits for more that 20 minutes to watch anything. She seems to struggle with any story line in any show. So the television is no longer a focal point.

I turned the whole room 90 degrees with the help of my son and grandson. We moved the dining area around a bit also and now the walkways are a little wider to allow for walkers and mobility aids. I have made one slight adjustment. Her recliner is electric and I put it closer to the wall to hide the cord. I have since moved her recliner to the other side of the end table (away from the wall) and hide the wires under my chair and the end table (side table). Her chair is now approximately in the same position as it was previously just turned about 90 degrees. She is comfortable with that position.

She asked me if we need to notify anyone of our new address and she wants to know if she will need a new key. Moving the furniture around makes her think that we have moved to a new condo. I told her that I had the locks keyed like the old ones so no new keys were necessary. I also dutifully instructed the kids and neighbors of our new/not new address.

Dementia is amazing in its scope. In Cheryl’s case location in time and space are intertwined. If I knew the phone number for heaven I could help her call her mom. Sometimes she wants to do that.

Heaven’s phone bank – Hello Heaven. Gabriel speaking. How may I direct your call?

Carpe Diem.