exercise

Apathy and Living

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Has she apathy? As we move forward it seems to me that she cares less about day to day activities. She seems to recede into her own thoughts but not as a prevailing occupation. I think of it as apathy-not-quite. When she gets in this mode it’s often temporary.  She is tired from some activity.

Specifically activities like taking a shower,  getting cleaned up,   physical therapy sessions or exercise classes are obviously tiring for a PD sufferer. Something as easy as thinking about what is next seems to tire her out also. It like a temporary apathy.  Procrastination?

It starts with, ” I don’t think I can go to… exercise class, church, physical therapy…” Admittedly it takes a lot for anyone to be motivated to exercise. It was not a big part of our lives when we were younger. Neither of us were sports buffs. My main sport riding my bike. There is a solitude to doing that which I am unwilling to give up or share. As her care partner, it is frustrating for me that she cannot observe how much she is helped by exercise and her PT sessions. She seems to not remember. It seems like she is going merely because I am taking her there.

When Cheryl gets in this mode (mood?), I turn the corner to something else. I am resistant to letting her go on and isolate herself in her little office area thinking, punding and organizing. I take her out. Anywhere works as long as it is out of our condo.

Yesterday I took her one of our local county parks that we have not visited for a long time. Afterward we went for ice cream at a nearby Dairy Queen. I had planned to make dinner at home but she suggested we find barbecue somewhere. This being an odd suggestion because it seems to upset her stomach often and she says never again later in the evening. We did not find the barbecue place to be amenable to folks with mobility issues so we landed at one of our old favorites and ordered something different than we usually get so the newness was preserved. On the way home she thanked me for taking her to Lake Erie and she told me a story about when she was very young.

In the early days of her father running his own gas station which was a life long dream of his, he rarely took any vacation time. It seems one of his friends had a vacation cabin up near Lake Erie and not far from Port Clinton. There is a park nearby called East Harbor State Park. Our walk by the shore of a much smaller lake in the park much closer than Lake Erie must have taken her mentally back to her childhood and a very fond memory. We visited the same area a few years ago and visited East Harbor. She talked at length about the trip with her mom and dad. She thanked me for getting her there and back in the same day.

I started this writing and contemplating apathy, but maybe it’s projective (mine) apathy? Or predictive apathy? Or apathy is the wrong word? (indifference? passivity?) Or is it poor sleeping patterns? This morning she got up at quarter til ten which means that she was in bed for about eleven hours. She awakened this morning from the same position she fell into when she got in bed. On the previous evening she went to bed very late after midnight and slept very little. (As a result I slept little also.)

Is apathy and memory related? I wonder about ideas like this. Perhaps she cannot remember that she seemed to enjoy herself the last time we went there? Wherever there is.

When I finally teased Cheryl awake this morning, she opened her eyes and asked, “Is Mary Pat here?” An amusing opening question about the day. I smiled and told her, ” No Mary Pat is not here. I think you were dreaming about her.” I have no idea where the Mary Pat (a childhood and current) friend thought came from but she has talked to her a couple times over the past few weeks.

I encourage her to talk to her friends when she gets excited about some memory or misconceived thought. Many of them have had strange conversations with her about things. I used to be embarrassed for her and, at first, discouraged these phone calls which she often decides to do later in the evening. But as I thought about it I decided that it was not my place to absorb or accept or become embarrassed for her. Her friends know her state of mind. They are wonderful people and she is blessed to have them as life long friends.

Focus, cognitive abilities, caring, likes and dislikes are all related to memory issues. Staying active no matter how small that activity is helps.

Carpe Diem.

Let’s Clean!

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It is easy to tell when Cheryl is feeling good. She will start cleaning.

My go-to cleaning person is my niece, Natalie. She comes over for a couple hours every other week and dusts everything, mops floors, runs the vacuum.

I tease her about touching all my pictures and stuff. I do not watch her every move. I pick up all the towels and throw them in the washer.

But at other times, when Cheryl is feeling good she cleans for awhile. I suppose it makes her feel useful. When we were younger and she was without parkinson she would clean at random intervals. I think it was a calming mindless activity to her then and is a familiar activity now.

Carpe Diem.

PT Goals

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Ten meter walk – How fast does it take to go 10 meters? (36 sec) The metric system is everywhere except in American society.

This U-Step is  a great walker. Why don’t you use it inside? It is a great question from the physical therapist. When I first brought it into the condo it merely sat next to the dining room table until we went somewhere but in Cheryl’s defense there are a lot of close by things, chairs, tables, half walls, door handles and grab bars that she ignores the walkers during the day unless she is feeling very unsteady. We have had a standard looking walker for quite some time. She worries about bumping into things.

We do use it when we go anywhere away from home. The wheels track in what ever they got pushed through elsewhere. I do not care about that. It is old carpet on the floor. It cleans up good when the carpet cleaner folks show up. It is just another maintenance item for the budget. I can encourage her but usually it sits by the dining room table. – This goal is use the walker more for safety.

Sit to stand – scooch forward, lean forward… like a rocket ship… push up off the arms of the chair. Stand to sit – lean forward and reach back, hold the chair and sit. The PT person provided this as a recipe for standing up. I have helped her with this at home but when we start it from a sitting position I can she her become anxious about making a mistake and “getting up wrong.” I am unsure about how to help her past this feeling.

Balance 7/56 — I took this note but I am unsure of its meaning now. I think it is intended to mean that of several tests for balance (56) Cheryl has a poopy score for balance. She has to think about balance. In most of us it is an autonomous function.

Difficulties with balance and walking are linked to the brain changes that take place with PD. For people who don’t have PD, balance is automatic, a reflex. But Parkinson’s affects the basal ganglia (a part of the brain essential to balance). To compensate, the brain assigns another brain area — an area used for thinking — to take over. The thinking part of the brain, mainly the frontal cortex, can’t control balance automatically. The result: for many people with PD, balance becomes less automatic.

https://www.parkinson.org/blog/research/Walking-with-Parkinsons-Freezing-Balance-and-Falls

more exercises

Stretch – lay like a T shape raised knees over to one side back to middle – one side then the other.

Sit on a chair – Reach up open the chest – bring arms to horizontal – twist trunk to one side and then the other with arms outstretched.

Carpe Diem and many trips to the PT experts. Next up – Occupational Therapy.

How Many Things Change

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It occurred to me this morning as I was reaching for the Cheerios that lots of tiny things have changed in our life together. Not all of them are Parkinson changes. All can seem associated with Parkinson. I will stop using the possessive and leave Parkinson by itself.

Starting with Cheerios, Cheryl rarely ate Cheerios until recently. The why of that thought is unknown. It may or may not be a parkinson. Before Cheerios she was a huge fan of Life cereal. So much so that I was buying Life cereal in the four box collection from Boxed Up online. For several months perhaps a year and a half it was Life cereal, some dried cherries on top and orange juice. Then it suddenly switched to Frosted Mini-Wheat cereal but only for a couple weeks. Sticking with the heart healthy ideas I bought some Cheerios for myself on day as I passed through IGA shopping for the other things on my list. They were quickly adopted by Cheryl as a breakfast option. Cheerios is the current choice virtually every morning now.

A Partial List of Changes:

  • cars
  • house
  • travel
  • motivation
  • dementia and support
  • bicycles
  • relationships
  • Morning routine
  • Sleeping routine
  • Sleeping
  • Memory
  • Intimacy
  • Me and tea
  • showering and hygiene
  • keeping track of meds
  • adjusting meds
  • Exercise
  • Daily chore responsibility
  • Plumbing
  • handholds around the house
  • Emotional response to songs
  • Financial maintenance
  • Falling and fainting
  • Writing
  • and on and on…

As these changes occurred in our life together I did not take notice of them, I merely rolled with it at the time. I admit to being initially annoyed and sad to see something change away from what it was. Old people like to keep things as they are. The past tense is disappointing but the Beatles broke up in 1970. People move on.

Parkinson symptoms are treated with powerful mind altering chemicals. It is the doctor’s call as to what will help. It is the care partner’s call to observe and listen and respect and help with those drugs. The doctor is global and strategic. Day to day caring is tactical, down-to-earth and immediate.

Carpe tactical Diem.

Observations of Lack of Sleep

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Scott was here last night to be with Cheryl while I visited my stock club meeting. The fourth Monday of every month is the meeting of our little stock club. We started this little club in 1984. Over time we swelled to 20 members but the past few years attrition and death has shrunk our number to eight. And over the past few years the meetings are more social than business. Where else can eight old men get together and trade war stories about getting old, fortunes missed, grand children achievements, the proper temperature of beer for drinking, Parkinson’s disease, prostate problems, cataracts and hearing issues, but in the backroom of a local watering hole near a railroad track? It is always fun and over the years I have rarely missed it.

Before I left for the meeting Cheryl’s stomach was bugging her a bit as happens occasionally after her 4 pm meds. When I returned I asked her if she had eaten anything. She said yes but behind her Scott shook his head no. She answered my question how she thought I wanted her to answer it.

Eventually about 11:20 pm we went to bed. Over night she was fidgety and got up at 2:30 a.m. to make a list so she would not forget something. I sat her at the kitchen table with subdued lighting and with paper and pencil she worked on her list.

Her list is a business memory. I sat with her and about 3 a.m. she decided to sleep some more and finish later on. Buzzing around in her mind these days is the thought of creating a database of birthdays for the people in her family. Many times and in many instances she has started this task. Just like engineers this thinking starts with a pad and paper. Often sketches are made to indicate data flow and information input. Just like an engineer Cheryl’s notes switch back and forth from cursive to printing. And although she had an urgency about this activity in the very early morning hours, she had no ideas about what it was or what it was for in the daylight hours.

She seems so fragile to me in the morning lately. She is still working on the remnants of some dream as she awakens. This morning she got up and went into the bathroom. I got up also and put clothes on, got some coffee for myself and turned on the CBS news to see if any new wars developed or any movie stars got divorced overnight. About 20 minutes later I went back to check and see if any help was needed or if there were any special breakfast requests. She was seated on the closed toilet waiting for someone to bring more toilet paper. I showed her where the extra rolls were and asked if she wanted cereal for breakfast. Yes was her reply. I returned to the living area.

About ten minutes later I went to check again and she told me she was still waiting for someone to bring toilet paper. The thirty minutes of database design time in the middle of the night messed up her waking pattern.

More and more she seems to have a slow switch from early morning confusion to present. I have not found a solution to any of this confusion and delusion. I listen to her conversation and make a lot of rapid decisions about how to respond. If it seems like she is getting ramped up about someone coming (that I know is not) I try to gently steer her toward the correct thinking. If she is getting fired up about having a family gathering I merely agree with her plans.

On this particular morning she was concerned about whether David was going to show up any minute to cook the Thanksgiving turkey. It took several repeated conversations about date and time but eventually she seemed okay that Thanksgiving day was not today. Over several hours she came to the conclusion that she should take a shower and get ready for her exercise class. Over those same several hours I planted various seeds of the idea about taking a shower and looking for exercise clothes to wear.

Me and how I feel – It is wearying for the care partner to both console and encourage and direct and deflect her delusions and my own background anger (too strong a word – disappointment?; discouragement?; vexation?) with her brain and how it is operating with PD. My question – Why can’t she have the movement issues without the mental disability? (God are you listening? Why her? She has always been a sweet person. Why did you dump this crap on her?)

Observations about my reaction to her needs – (Shit! Not again. This is the same conversation we had 15 minutes ago. whiskey tango foxtrot.) How can I help dear? Cheryl – you can’t help. Perhaps not but let me hold your purse for you while you get out of the car.

Is this genuine love? … To have and to hold from this day forward, for better or for worse… Those where part of the original agreement. Too late to back out now. She looks so sad and distraught when she realizes that she needs me to help her up from the chair because her scoocher is busted. It is heartbreaking.

Carpe Diem.

More AHA Moments – Boats

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Cheryl told me she is scared to be on her brother’s boat.

Recently Cheryl’s youngest brother invited her and the rest of her living clan and clan-in-laws for an evening ride on his pontoon boat that he moors in a small man made lake near his home in southern Indiana. I am always on the hunt for things to do with her that let her socialize a bit out of and away from our little condominium living situation.

Since Ken’s text message came to me on the family text chat, I told her what he proposed. Cheryl responded with, “I will think about it.” This is a phrase that she learned from her mother as a small child and she has used throughout our fifty years of marriage and many times during our child rearing years. Roughly translated it means “NO” or “no thank you.” But being the polite person that she is, she does not want to hurt anyone’s feelings, she rarely says no directly. (She also learned this from her mom.)

Cheryl has a lot of her mother’s traits. She does not want to put anyone out. She does not want to offend anyone. She can be angry with me as could her mother when she thinks that is appropriate, as when I am being pushy. She does not want anyone to stifle their good time by worrying about her welfare. She is okay with isolating herself to (her perception) benefit others. She enjoys the presence of small children even if the small children are unsatisfied and complaining about it. She enjoys the presence of big children and wants to be a part of their life even if the big children are uninterested in letting her in. She likes big family gatherings.

Most recently she has a new special Parkinson’s patient walker to help her move around with steadiness. After her appointment with her MDS neurologist on her birthday several days ago, I ordered this for her. In the picture is her new U-Step. I should have gained my AHA here since I just ordered this over the phone three days ago. (I am buying her a stabilized walker and suggesting we go on a boat that will wobble every time someone moves.)

U-Step walkers are designed specifically for folks with PD to give them a strong base to walk with and against

But, getting back on track, she said to me that she is scared to be on Ken’s boat. That is the first time she has ever expressed that to me.

AHA MOMENT – Occasionally these pop up and I cannot always understand her needs. Prescience is not a strong trait of mine. But imagine for a minute, here is a person with balance issues and I am promoting going on to a less stable surface than she is used to. She can lose her balance and fall backwards when changing positions in our living room. Our building is built on a slab. It is hard to get a more stable surface. AHA (you moron).

Ken caught on pretty quick and proposed dinner tonight on the deck at Willie’s restaurant next to the puddle (his term for the man made lake.) Tonight is anything goes pizza Tuesday. Willie’s fits into the anything goes part of pizza Tuesday.

We will go tonight and take the new walker for practice and hopefully greater stability.

Carpe Diem.

Once in a while the road seems straight even when it is not.

…

Fast

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There is absolutely nothing that goes fast in our life anymore. Do I miss it? My immediate reaction is NOT.

Max throwing his fast ball

I like how the young people emphasize comments by using ALL CAPS. That enables their fast comments about most anything that strikes them.

FAST however is gone from our life with Parkinson. Planning and thoughtfulness and SLOW are the current buzz words in our life.

I have noticed as I get older (I am Old) and drive my wife with PD to various exercise or other social activities that many drivers – not necessarily young drivers – move through traffic fast. What is their hurry?

Even when I am feeling as though I am late for something, I ponder what will be the result if I am later than I expected to the destination – mass, restaurant, exercise, whatever. The end result is similar to removing one’s arm from a bucket of water.

Nothing. Maybe a couple drips on the floor.

Carpe Diem – FAST

Kardia Mobile

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This company wants me to buy a device that pretty much tells me I am not dead yet. I already know that. I run to the store and run to the library and run to the doctor fairly often. I am pretty sure I am still running okay and not dead.

Many people, probably most, spend a great deal of time running here and there. It is ingrained in us. We chide each other if we are not active. But instead of running what if we took a deep breath and stopped to look around at God’s wonder of Spring and the renewal of life. It happens every year. It is truly amazing.

Breathe and notice the world. Run for exercise and health but do it outside where He can show you His wonder.

Run: Carpe Diem.

April Fool’s Day and other Thoughts

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(image from Microsoft teams)

This morning after a remarkably good sleep, Cheryl got up and took a shower. She spent a lot of time getting cleaned up. She finally came into the kitchen looking for breakfast about 10am just as her alarm went off signalling the next dose. I asked her if she wanted cereal or something else to eat. She asked, Are there any donuts? (I have to start making some and experimenting with freezing them so they are readily available for breakfast.)

UDF donuts

I got donuts from the UDF store about a mile away. She likes their “kettle danish.” Two have been enough in times past so I purchased two. She is generous with food and offered the second on to me but I did not accept it.

I signed her up her April PCF classes and noticed the hands class teacher is back from Florida. She wants to go to “hands” class. This class has been on line while the instructor has been in Florida for several weeks. That style class really does not work for Cheryl.

Where does “April Fool” come from? I like this explanation I stole from India.com. It is not hard for me, a catholic, to believe some past pope guy started this nonsense.

It is believed that Pope Gregory XIII was the one to be blamed. He ruled the new calendar to start from January 1, instead of the previous celebration of the new year at the end of March or April 1. Though, the change in the annual calendar was brought into practice by France. But across Europe, the people continued to follow the Julian calendar. And those who failed to register the use of a new date and ended up celebrating New Year in April have been marked as ‘Fools’. Hence, a particular day for fools came into being.

india.com

Happy April 1st! Eat more donuts!

Carpe diem.

So many times in the evening

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She asks me if we are staying here tonight. It is a repetitive theme in her thinking and confusion. Not knowing any better I try to answer her honestly and without any teasing (which she does not understand anyway). Looking at my old notebooks and blog posts it seems that this particular confusion and some others, who I am, for example, have a cyclic appearance.

That was last night. This morning she wants to pack a suitcase for college. The idea that she needs to get ready to go off to college is totally new. The college she wants to go to happens to be the one I am a graduate of and our grandson has been accepted into for the Fall semester. These facts are probably all tumbled up in her head and sort of explain her confusion.

Another interesting nuance is conversing with me as though I am an acquaintance, someone she has not spoken with for some time. We are catching up. We spent most the of the day talking in the third person as though acquaintances. It was a warm late winter early spring sunny day so we took a walk in the park. We talked about many things. We talked about the weather of course. We talked about how far you used to be able to see across the little creek we were walking next to. On the other side of the creek is a concrete and asphalt reclamation business with mountains of paving to crush and recycle. It once was a smaller pile of refuse.

We talked about children. She told me about hers and asked me about mine. She was amazed and intrigued by the fact that our children had the same names. It seemed that the only difference was that her children were in their teens and twenties and my children were middle aged. (smiley face here) It was unimportant to her that these teenagers had children which were her grand children. These conversations were hard to follow but I was able to ask questions and find out more like any good friend would. Most of the time I was able to keep the tears out of my eyes as we created a memory of a good day for her.

She suddenly switched topics and talked about what to do about Thanksgiving dinner. I gently pointed out that it was barely March and Thanksgiving day plans were several months away. Undaunted she replied that it would be here quicker than you think. There is a lot of truth to that last comment. I have noticed as I get older the year goes by quicker.

I promised to get right onto organization of who does what. I fired off a text message to our family text-party line and got positive responses from everyone. Our daughter volunteered to host.

Carpe Diem