Caregiver diversions

EEEEke, Get Outta Here!

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House centipedes occasionally wander into the house. This morning one went to its demise after scouting for prey in our kitchen. If you read the link to family handyman at the beginning it tells you that you probably should not kill them. Cheryl did not read that article.

Watching that activity, I thought about it from the bug’s point of view…

bug – “doddy-oat doe” Humming to itself. This looks like a good place to hunt as it moves into lighted part of the kitchen floor.

Cheryl – “Eeeeke! Get outta here you!” Lot’s of thumps and bumps while she tries to get up.

bug – “Holy cow there must be some kinda earthquake going on.”, it thinks. It freezes to check its surroundings.

Paul – “What’s happening in there?”

Cheryl – “There’s one of those thousand leggers.” As I come into the kitchen she says, “There it is!”, pointing to the insect hiding under the base cabinet front. I grabbed the fly swatter hanging on the pantry door and handed it to her as Mr. Centipede scampered out of harm’s way under the refrigerator.

Paul – “Here use this it will work better.”

The centipede stayed under the fridge for a few minutes searching for prey and weighing options for escape. Soon the cry erupted, “There you are!” WHACK. WHACK WHACK.

bug – “Damn. Crazy woman. What is up with you? I’m outta here.” It retreated back under the fridge and Cheryl shoved the fly swatter under the front of the refrigerator in an effort to chase the bug out from underneath. It reappeared to the left when Cheryl was probing to the right. She whacked at it some more as it attempted to scurry away.

bug – ” Ow, ow ow. OUCH. That hurts. Why are y…” Centipedes are delicate creatures and tend to disintegrate with a direct hit. This one did just that.

Gone to centipede heaven as dust.

Cheryl – “Got it!”

There is a rule in our house. No bug of any type may live there. No benefit may ameliorate the absoluteness of none.

I laugh now. It is entertaining to watch. I used to worry because of Cheryl’s balance issues. I worried that she would fall down chasing a bug across the floor. And then I realized that often her Parkinson disappeared for a bit. The necessity to cause death to all bugs overrode any Parkinson. In fact she is pretty good at mashing ants with the tip of her cane or the tip of a walker leg. The only thing that needs improvement is her reaction time.

Bug whacking is also pretty good exercise. She will come right out of the chair to bush whack a bug.

Carpe Diem.

Old Married Couple

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It occurs to me that old married couples have heard each other’s stories many times. Idle pleasantries between acquaintances and friends usually lead into a story about some past experience. It is harder to do with old married couples. They have heard the stories. Often they both participated. Aging and PD memory loss have changed our conversation about trips, children, childhood, food, children’s sports, many things.

I am a pretender often. She may forget who I am as she is talking. She may forget I was there; an hour ago, a week ago, a decade ago. I might forget I was there a decade ago. She wants to remind me of someone else from her childhood, someone I should know.

I work on my small talk with her because she will find a story from her childhood and it is calming to her to tell me the story.

As I think past all of that and how I can help and respond to Cheryl I still worry when she says to me, ” I’m ready to go home now.” She does this near bed time.

Lately she seems to merely mean that she is tired and wants to go to bed and rest.

Carpe Diem.

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.

The Road of Caring for Another

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A couple of months ago I seriously doubted my ability to care for Cheryl on a long term basis and looked into memory care facilities around where we live. There are a lot of them.

Now, after having clicked on the wrong thing on the internet of all knowledge, I am deluged with calls from the marketing folks of all the facilities within a twenty mile radius. The world wide social media network – Facebook (aka Meta) – sends me two types of ads on every other post on my “news feed” advertisements about Parkinson stuff and memory care places.

I suppose I should be smarter about see more when I see it dimly printed at the end of some paragraph I started reading. I suppose I should be smarter about a lot of things but sometimes you want to just see more of the text. Sometimes you merely want to have one question answered up front, “how much?” Used car guys know enough to not answer that question directly. The trick is to keep ’em on the lot and find the lowest possible number where the client says, “I can do that.” It is the whole reason for, “For 50 cents a day, you can feed this orphan in some obscure country.” – ads on television early in the morning. The Shriner’s hospital ads are especially compelling. (Oops, I have digressed.)

I fell for it and probably always will.

On the heels of making that mistake, I did sign myself up for a care giving (care partnering) class that also produced a fount of valuable information without the “scam likely” phone calls coming to my cellphone while driving somewhere.

The class itself has given me new insight into how important it is for me to seek out help from others around me, take time for myself to do the things that I enjoy doing, and to give those things and myself priority in my (and our) life. I have at the same time become aware of not dumping on friends and family to “take care of Cheryl” for me. Most of the time in the daylight Cheryl can take care of herself.

I do not have Parkinson disease but Cheryl does. In order for me to stay healthy enough to care for her, I have to stay healthy both physically and emotionally. I thought to write mentally also but emotionally covers it. I use the term anger but that to me means -frustration, disappointment, anxiety, sadness mixed with a little collegiality and a lot of empathy and love. And maybe a little grief is there too.

I have written this before I truly hate this affliction and what it has taken from her but I have to be as upbeat as I can about things. Some days that is harder than others.

Carpe Diem.

Tonight it is Chicken Fried Rice

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I did not know that fried rice recipes are intended to use up left over rice from the previous day or two until I looked for recipes for (something) fried rice to make tonight for dinner.

Yesterday when Cheryl was making me nervous in the kitchen that is what she kept talking about, fried rice. So last night after I apologized profusely I told her tonight we would make fried rice together. We did. She did some of the chopping and egg scrambling. I did the frying over the hot part of the stove. It worked and it was pretty darn good.

In preparation last night I cooked some rice and put into the fridge. I took some frozen chicken out of the freezer and put it in the fridge to thaw. Tonight we chopped and fried and stirred and cooked.

The general activity:

  • 1 chicken breast – pounded, salt and peppered, chopped into thin strips
  • 3 large eggs – scrambled with a little water
  • 1 C. frozen mixed veggies, pick out the big green beans and chop them smaller. My package has peas, carrots, corn and green beans
  • 1 medium size yellow onion chopped
  • 1/2 tsp. of garlic pepper. I was out of garlic cloves. I usually have some. Use two if you have some.
  • 2-3 tsp. of sesame oil
  • 2-3 tsp of soy sauce (plain old LaChoy)
  • salt and pepper
  • vegetable oil for frying

I don’t own a wok. I used to own a wok. I am more familiar with a 12 inch cast iron skillet that I own. It works fine for this kind of stuff. We have had it for fifty years or so so it is well seasoned.

Fry the eggs after Cheryl turns them into scrambled mix. I add a little water to them like the Frugal Gourmet taught me years ago. (Remember him? Sad. He has some good recipes though. I kept his books.) Fry the eggs with about a tsp. of vegetable oil. remove them to a plate and chop them into pieces you will add them back later. After marinating the chicken chopped into thin strips for a bit in sesame oil and salt and pepper (I also pounded it out into a flat shape as though I was going to make chicken-fried-chicken ala Cracker Barrel) add a tablespoon or so of vegetable oil in the skillet and cook the chicken to golden brown. (Gently you can go too far.) Toss in the onion and garlic. Keep frying. Toss in the frozen veggies. (At some point you may feel the need to add more vegetable oil. Be careful.) Keep frying. Dump in the pre-cooked rice. Keep frying. Add a little sesame oil and taste it. Keep frying. when you are ready add the soy sauce. I guessed two tablespoons or so, but I do not measure at this point. I taste. It might need a little salt or more soy sauce. — Probably 30 minutes from beginning to the end and eating.

I should have taken a picture but we ate most of it before I thought to do that. I gotta get more Tik Tok. I rarely think to photograph foods that I am preparing unless I have impressed myself.

Carpe Diem.

Who am I?

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Last night was a peaceful night. Cheryl laid down in the big new bed at 10:30 or so. I finished up a couple things and joined her at a quarter ’til 11. It was a restful night. I awakened to go to the toilet at 6:30 am and so did she. Cheryl laid down again but I got up.

At about eight I went to check on her. She was awake laying in bed. The creaky door had startled her. I apologized for wakening her from her dreamy state. As I closed the door to return to the living room this conversation ensued;

Cheryl – Who am I?

Me – You are Cheryl.

Cheryl – And who are you?

Me – I am Paul. We’ve been married for about 50 years.

Cheryl – Well, happy anniversary!

I do not know what to make of this conversation. As I left the room she added, I love you.

I can understand that in the early morning hours she is a little more confused than normal. She is still tired. I do not know how well she slept. I can report that the couple of times I got up overnight she was in the same position. She moves little when she sleeps during the night. At about 5 am she was having a conversation with someone in her sleep but she often has these conversations. I do not always hear them.

We will see what the day brings. So far, my youngest son has invited us to dinner on Father’s Day which is Sunday.

Carpe Diem.

And Last Night was Bliss (Again)

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The ups and downs of this Parkinson thing do not seem to allow for planning, comfort and looking-forward-to-ishness. I imagine it is the biggest headache we care partners have to deal with day to day.

In addition to the fact that Cheryl can be great one moment and in the next she can be off in the weeds punding or hunting around for something that does not exist or merely worrying about something that is days into the future, she sleeps fine several days in a row and then one night is up. If one does not have Parkinson one can still have sleepless nights occasionally. Parkinson merely makes it more annoying. But, holy cow, it can be really annoying and not only for the Parkinson person.

The previous night was miserable. She did not sleep until about 3 am. Last night she laid down at 11 pm and did not move from that position until 7 am when the LOUD AND ANNOYING alarm clock went off to signal TIME FOR MEDICINE. That is what it displays in two inch high bright green letters after it raises its brightness level so that it is visible on the moon.

I got her the meds. She took them and laid back down for a bit to allow them to work. I put the Kleenex box in front of the message to the lunar astronauts. I felt rested.

I went to turn on the “news” and was shocked to learn that there were sexual hi-jinks going on within the Southern Baptist Convention. Hoping for more news about the Pirates of the Caribbean star Johnny Depp and getting instead the fact that Hunter Biden was, as a husband, a stinker as told in a new tell-all memoir by his ex-wife, I turned it off to do the Wordle. Ho hum.

She got up a little later and put the big new bed back together.

We are up at the regular time with no extra laundry today.

Life is good.

Carpe Diem.

Last Night was Peaceful

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Last night was the first dose of donepezil which may help with Cheryl’s confusion and dementia issues. It has two main side benefits (effects) in addition to the myriad of others that seem related to any drug regimen. The side effect I am most concerned with is insomnia. I will be watching for this closely over the next few nights as her body adapts to the medication. The drug literature suggests a two week or so adaptation period. I am hopeful today.

The dose in this series of pills is 5 mg. The intent is to discover the patient’s tolerance for it. The dose will be increased over time. If one eats a little bit of peanut butter each day when one is little, one will not develop an allergic reaction to peanuts. If you eat a little bit of dirt each day as a child you will develop a tolerance for a lot of things later in life but your parents will go through a really annoying diaper period.

Nevertheless last night was peaceful. One trip to the waterproof room and no extra laundry in the morning. Seven AM meds consumed on schedule. Breakfast of yogurt and Pillsbury refrigerator rolls rounded out the morning.

Exiting “news” today from the world’s largest advertising company Meta formerly know as Facebook, new tools are available for Instagram whatever that may be. (I am old.) All the major stock market indexes plunged (not fell) into bear market territory. The Fed is wondering out loud about where to set interest rates. Nervous investors are placing their bets. Bitcoin aficionados are moving their money so quickly the major exchange called a halt. (Think of all those computers mining bitcoin settling into stasis.) Ho hum. And it is going to be hot today on the east coast where all the news comes from. Stay hydrated!

Another day begins. Cheryl seems to be moving well. She can try out our new grab bar that was installed yesterday on the wall near the shower to help with getting in and out of the shower. I have no control over the things that CBS has decided is news today, so, although I am mildly interested, I do not spend much time on it. Cheryl is quietly watching the news after eating her Pillsbury refrigerator rolls and yogurt with OJ.

The Wordle today was easy. I got it on the first guess. Today life is good.

Carpe Diem.

Morning “News” Programs

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Yesterday we picked up one sister of Cheryl’s and went to visit another sister of Cheryl who lives about forty miles down the road. It was a very pleasant visit sitting on their great front porch perched up a hillside with a nice view of the Ohio river to the north. We had a great conversation while some extra kids and grandkids showed up to drive go-karts and minny bikes over the hills and around the property. Sometimes it seemed like having a conversation on the berm of a nearby highway. Nevertheless it was a good day and this morning Cheryl is sleeping in for a bit.

Which leaves me with my morning coffee and watching the morning news shows. It also leads me to think about what is news to me. The morning news shows, as they always seem, are interspersed with the latest political dilemma, complicated financial maneuvering that makes money less valuable but no less important, some actor/celebrity fall-out from marriage or their manager, the best guacamole recipe or another use for hot dogs, the expected weather for the next week (it is remarkable how this is always bad news), the latest book usually a tell-all memoir – today about growing up as a child of abusive news reporters in California, and other useless, to me, drivel. I suppose a breakthrough therapy for Parkinson would be of much more interest. Sometimes news is merely superfluous information and blather.

I turned it off because I noticed I was using it as background noise for working today’s Wordle and a couple other puzzles I have become fond of working.

I like crosswords. I suppose that is my father in me. He liked crosswords also. It probably sounds odd that I care little for Scrabble since it looks much like a crossword when completed. I think that has mostly to do with competition which I also care little for. I am not competitive except with myself. Crosswords and stroke-play golf fit into those self competition categories and maybe bowling.

Journaling and writing and blogging is also an interest. Today is also wash-the-sheets day and I am starting later because she is sleeping in.

Carpe Diem.

God Makes a Way Out of No Way

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Sen. Warnock from Georgia and pastor of Ebenezer Baptist Church in Atlanta says this often when he preaches. He found inspiration from his father who told him every day, get your clothes on, put on your shoes! His dad’s point was only you can do it. No one can do it for you. It is up to you and your attitude.

He is a pastor of southern Baptist convention. I am not a Baptist but the lesson is not lost no matter your faith or lack there of. It is up to you to make a difference in your own life and the lives of those around you. No one can do it for you nor should expect for someone else to do it.

We have to start with ourselves. Let God in. He will make a way if you let Him.

Today is a good day to start.

Carpe Diem