memories

Embrace It

Posted by

0

In her blog, Cheryl Hughes, writes that many times it is better to “just let go”. She spent many years as care partner for her husband.

I have decided to do that in many ways. If I decide that we are having salad for dinner,  I buy a bag of salad. Salad kits are available.  It is way easier than chopping stuff. And there is enough for four typically so if you want lunch the next day you are good.

It can cost a little more but what is the harm in embracing the changes as a care partner. My Cheryl believes that Christmas is any minute now. Until a week or so ago I was resistant and felt the need to correct her thinking. What ever for? Why generate artificial stress? She will not remember being incorrect, she only remember that I think her to be wrong when she is certain that she is correct. I could embrace the fact that Christmas is next week and we should put up the decorations.

We got a catalog from Amazon which is unusual by itself but it has kid’s toys in it. I cynically remarked sometime ago about getting Raggedy Ann for our daughter and Anna chided me with – I am totally okay with Raggedy Ann! It could be fun. Between decorating actions my Cheryl searches through several cookie options in the Cheryl’s cookies catalog (too many Cheryl’s in this story) and looks for the perfect Christmas cards in the Printery catalog. Sometimes she is telling me about cards, sometimes cookies. What could be the best one or two? Of each?

The Christmas elf is sitting in the chair ready to help Santa. HO HO HO is on the front door. The little wooden Santa is falling off the closet door. Knitted Santa is on the clock. The inside of the front and side doors are decorated so that Santa cannot get in without being noticed. The decorations are moving along nicely.

Eddie bear always gets booted from his seat next to the telephone. He lost his telephone long ago. He seems to be okay with the rocker and he has a place to hang his elf hat.

Anna makes me smile as I think about it and she is right.  It could be fun to shop for gifts for the kids and grandkids. Perhaps I should embrace it. What difference is it if Christmas is a months long event? So I told myself a few days ago that we would go for it.

Now that the decision is made, we should be shopping for the kids.

We need to find sizes or which toys suit which kid best. Laurencia likes puzzles and building things. Virginia is crafty and plays trumpet. Vinny likes Lego kits. Gavin is into online gaming. Regan is off to college next year. Audrey is a dancer. Ellie? Dillon? Luke delivers pizza but his passion is photographic art. Lots to think about. Have I forgot anyone? I have got to find Raggedy Ann for Anna. Yep, lots to think about.

Cheryl has powerful childhood memories about the holiday season. There were many good times, parties, family gatherings and fun. Perhaps it is time to make some new ones.

Carpe Diem.

7AM and a Funeral

Posted by

0

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.

Christmas and Parkinson

Posted by

2

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.

Ought, Cough, Bough

Posted by

0

Wordle is a game that makes me happy. I found that thought in my head after finding the wordle answer a couple days ago. It matters not that I needed one guess or five guesses. There is no competition. (And yet there is someone on the World Wide Wait that needs to explain to me why it is popular.) It is a personal challenge. It is the first thing I open on my tablet in the morning, well, almost. Sometimes the book I was reading the night before opens itself and I read that for a little bit.

Cheryl is semi-sleeping now. I checked on her. She is “trying to decide” about getting up. We have no scheduled activities or she does not. Actually I do.

Early in the morning while she is in this mode, I have time to look at other things, check email, see what folks are whining about on Facebook. Facebook has a strange way of posting things on my “news feed”. Calendar time seems to have little to do with it, maybe, nothing to do with it. It must be a complicated algorithm. Ho Hum. After determining that there are no email, Facebook or other emergencies, I move on. It amuses me to notice how many folks will post something on a group page which might better be solved by picking up the phone, I look at WordPress to think and gain some inspiration to add to this blog of mine.

The statistics page is often of interest since much of the display intrigues me. Today this little display in the corner seems to report that someone in Thailand looked at my blog.

That in itself is not strange. Type a random thing into Google and it returns all sorts of unrelated finds. But all seven views were of an old post I entitled “Things that make you Happy” and I reread it this morning. I found inspiration in my own words.

Over the past weekend we visited with my cousin Bettie and her husband Herb. It is always a great time with family and friends that we do not see that often. Bettie’s house is perhaps forty-five miles away south and east. It is a pleasant drive through the northern Kentucky countryside and for Cheryl it is a far away destination. On this particular weekend the hurricane that crossed Florida and came ashore at Georgetown, South Carolina had spread its cloud deck inland to eastern Ohio and Kentucky.

On the start of our trek it was bright and sunny. I aimed the car south and east towards Bettie and Herb’s place and drove under the cloud deck. Watching to sun go down from their front porch and side deck was magnificent. My son remarked to me that he had not seen a rainbow before. I do not know whether he meant ever or as brilliant as this one was. It was perfect timing for a follow up question but I did not ask him. Carpe the missed diem.

Like most things I have taken pictures of with the smartphone’s camera, the pictures do not capture the magnificent colors that were produced by nature. The rainbow produced by the narrow view the sun had of the under side of the cloud deck and upper misty air was brilliant and exceedingly bright. The pictures simply do not do it justice. But being there with family and friends and watching a unique sunset made me happy.

Happy to be alive and happy I was able to share the moment with Cheryl.

Carpe Diem

A Wonderful Weekend

Posted by

0

This was a wonderful spontaneous weekend.

We went to visit one of Cheryl’s good friends and former classmates Rosie. Rosie is Sister of St. Francis in Oldenburg Indiana. I always learn things about religion, spirituality and altruism from S. Rosie. She probably does not know that she is doing it. She is so very gentle and kind with Cheryl when we visit her. Cheryl and she were close in school.

Many years ago S. Rosie had a very severe illness which put her in a coma for a bit and ultimately she had a near death experience. She strongly believes that she is able to see and interact with the spirit world. This conversation developed as Cheryl shared that she sees her sister and her mother often. Both are recently deceased. I can attest to this connection Cheryl has with Janice and Elaine. I am guilty of reminding her where one or the other of them is when she bursts from her office and wonders aloud where they went or needs to call one of them on the phone. My answer is to point out that I do not have the number for heaven if she wants to call but if she closes her eyes she will be able to see and talk to them. Little did I know that that is a good idea. I was merely scrambling to help through her current anxiety of location and place.

When Cheryl was describing the experience to S. Rosie, Cheryl with gentle probing from Rosie admitted that she was worried about “going crazy” and that fact is disturbing. Rosie suggested that she embrace the vision as real and told a story her a story about one of her encounters with a spirit that had twirled her around while Rosie was walking with another friend. Her friend asked what happened to her and Rosie described her encounter. Her friend responded with exactly, I saw your side of it. We talked a little about whether Cheryl’s disease had detuned (my word not Rosie’s) her logical, reasoning side of her brain and allowed the intuitive, spiritual connecting brain to emerge. Occasionally I wonder if that occurs to many of us naturally and those who have that insightful perception are ridiculed as crazy or crackpots so they keep their vision to themselves. (What happened at Fatima?)

All of us talk to people that may no longer be in this world but we were close to in some fashion before they passed into the next world. My sister and I tease about things that Mom would say to us. Every time I carry an Amazon box out to the recycle bin I hear Mom say, “Don’t throw away that box. That’s a good box!” I think she told me that in the flesh a week or so before she passed away. It may sound unrealistic but I can actually hear her voice in my head. My sister Joyce tells me that Mom tells her to, “Water that plant!” We both have different mother-child experiences.

The brain floats in a soup of proteins, hormones and other chemistry. The real world is not inside our brain but what is there is our perception of it. Some of Cheryl’s sensory systems are defunct. She has not had a strong sense of smell for about fifteen years. (Handy for the husband who does not feel like taking a shower that day.) She can still construct smells in her head from sight and texture and perhaps the saltiness or sweetness she can still detect with her tongue. Her brain reconstructs smells from experience and using different pathways of sensing its surroundings. What if the intuitive side jumps up and says, “I see something and it is …” The worldly side takes note and Janice appears.

Perhaps one should not be dismissive of hallucinations and visions. What happened at Fatima and other places where incredible things were see by those who could see and were not afraid to tell those who could not? My spiritual self tells me that there is a connection among all sentient beings in some way. Lovers of dogs, for example, are heartbroken when an old companion dies. (Cat lovers too.) I once had a guy who worked for me who wanted to claim funeral leave when his life long German Shepard companion, he was a young man, passed away. And I understood his grief but it did not fly with the HR crowd at that company.

What if Cheryl’s deterioration of her logical, mathematical, connected mind allows her to see with the other part of her brain that does not do math? Cheryl revealed to Rosie that she was not scared of the vision of the spiritual side but she was concerned with getting there (and at that point she began to weep.) Her mother and her sister are very real to her when they appear. She talks to them about what is happening in her life.

She sees others in our little condo area. There is “that person who is in charge” of the school. There is a group of women who hang out occasionally in our window seat in our bedroom. (I started wearing pajamas to bed instead of just underwear or nothing.) Shortly after one of our residents in the next building passed away in July she saw a gray haired woman with a short hair style charging down the back hallway as we were leaving to go somewhere. The woman was vivid enough that Cheryl asked me if I had seen her. It could have been Marty. Cheryl’s description of the woman at the time put me in mind of Marty. A couple of weeks previous I held Marty’s arm to help her step over a curb stone during a meeting with our landscaping company to discuss a new plants installation near her front door.

Those visions do worry her. She seems to understand seeing her mom and her sister but seeing others who are not family is worrisome to her.

But what if she merely has a view to some other elsewhere some other existence? What if?

Carpe Diem.

Farther down the road go we.

I Found Words from Dad

Posted by

0

I found this old letter in among other pictures from my mother. I have a couple plastic tubs of “Mom and misc.” Recently I was looking through these looking for something else.

For awhile I thought about Dad and our relationship. I found in my memory stories that I have about him.

When you think about people who have died, they are alive again. At least for a little while they are here with us.

Carpe Diem.

Where have Handwritten Notes Gone?

Posted by

2

I have saved a lot of old crap. Like most people I suppose have saved from the earlier part of their lives. Always with the intent of “doing something” with that letter, that picture, that article, that thing.

A few months ago I found a bag of that kind of stuff in my armoire crammed in the back of a bunch of other memorabilia. My diplomas and certificates and other ATTAboys are stuffed into the same place near socks and pajamas. My sister refers to these as little treasures.

In this particular bag left over from Waldenbooks (remember them?) I found a collection of old letters written by Cheryl to me in high school. These are not love letters. She is merely writing to tell me about her day. In the example I show here she has continued her letter on the next day, so, it is two letters.

Six pages of handwritten conversation as though I was there or at least on the telephone with her show several concepts of interest. The first thing to note is that her cursive when she was seventeen is written as though it is on lined paper even though there are no guidelines on the stationary. The second thing I noticed as I re-read her note was how she must have taken to heart practicing her craft in grade school and high school. The letter is dated and located and each page is numbered so the reader is not confused.

Not as much emphasis is placed on American standard cursive as it once was when we were children. Many of the MEME-ers on Meta believe this is appalling. I think it merely shows progress in education.

These days Parkinson has stolen her cursive from her as well as other things. Her ability to think in a straight line is gone. Cursive writing is just another item greatly diminished in our new life. And handwritten notes seem to be a thing of the past as we leap into the SMS message days. I have been chided by others for not responding to text messages rapidly. I notice that my smartphone service does not always provide a little chirp when a message appears and I am okay with that.

That last thought sent off to contemplate the idea that voice phone calls except from Mumbai are mostly none existent.

Carpe Diem.

Dressing the Bed

Posted by

2

When I make the bed in the morning, lots thoughts run through my mind.  I imagine that everyone does this or at least everyone who makes the bed consistently. I recognize that not everyone dresses the bed in the morning before work or other chores. These days it is often a necessity.

I once remarked to my sister-in-law as we traveled to our pizza Tuesday destination or some other dinner destination and she asked Cheryl, “Is this a good day?” that it is a good day. There is no extra laundry. As this disease moves on occasionally there is extra laundry.  That there is none does not equate to a good day so it was just a stupid comment. Uncalled for as I looked back on it this morning while getting the extra laundry in the mixed load started.

Laundry is one of those chores I never did before this disease. It crept into my life four or five years ago. Now I am defensive about my methods and organization of it.

But what started me down this meditative road this morning was not laundry, it was the thought of a good day.

A week or so ago on the family chat text session, Ken remarked that he could get pizza delivered to his slip where he docked his pontoon boat at the lake he lives near. I texted him late in the evening to ask if he was up for pizza Tuesday and early in the morning he said he was. Her face lit up when I told her that Ken was coming for pizza Tuesday.

A few days ago I asked her brothers and sisters to spend more time with Cheryl or simply call on the phone to chat. It is something she really enjoys. It is also something that is difficult for her to do on her own with her current diminished cognitive ability. Tonight her brother is coming to share pizza.

She probably will not remember he is coming until she sees him.

And Ken being Ken was already there when we got to the restaurant from the occupational therapy session this afternoon. Her face lit up again. He slipped into the back of the booth we selected across from Cheryl. They talked about family. Cheryl occasionally struggled to find a word or a name. Ken waited. They talked more about old times that had occurred in this very restaurant when it had a different name.

It was a great visit. Cheryl thanked me for the great evening. I thank Ken for his patience and gracious support and understanding of his sister’s struggles.

It was a good day.

Carpe Diem.

Memory Loss

Posted by

0

Lately i have been reading Gwendy’s Final Task by Richard Chizmar and Stephen King. I became tired of violent crime novels and this book claims to be the final volume of a trilogy. Perfect I thought. Stephen can be wordy although I think he is a good story teller. And Maine is apparently a mess, Castle Rock anyway.

Gwendy the main character is losing her memory and is very aware of it. She maybe dealing with beginning Alzheimer’s or something like it. It is disturbing to her. I wonder if it is realistic to think that folks like Gwendy or Cheryl or others dealing with a chronic illness that destroys one memory are aware of it happening. It is a scary thing to Gwendy in the novel. She talks of how names just disappear from her head and the struggle she has to get the thought back.

There is a lot more to the story but Gwendy is actively hiding her memory issues. Initially she forgets names and her neurologist and psychiatrist doctor has taught her a little memory association technique that helps her through most situations. And Stephen King has a device in his story that works even better. I wish there was such a device for Cheryl. I wish the device did not require the ending that Stephen has worked out for Gwendy.

More and more I hunt for memory tricks to help her. It may be too late for many of those to be useful. Getting out of the car I repeat, “One hand on the door and one hand on the chair and you are out of there.” I have little knowledge of whether that’s working but more and more she reaches for the car door inner handle and puts her left hand on the seat back to propel herself up to a standing position. She often does not need me to repeat it.

Maybe that is helpful. Repetition and repeated talking about what to do makes a new connection in her brain. I often repeat the ABC song in my head to find alphabetical order. The sing-song about the months never stuck with me. So, the connection does not always happen.

Memory loss is discouraging to the care partner. Memory loss is mostly unknown to the parkie that has it. It shows up constantly. — Who put these papers here? Why is someone messing with my papers? Those little girls are always playing with my papers. I better put my papers in my office and close the door. Substitute any valid noun for papers. She puts on two pairs of socks because she forgot to take one pair off before putting a clean pair on.

It (memory loss) destroys any planning skills. The holiday season is next week we better start making cookies. I don’t know why they keep moving the months around. When I see the doctor next week I want to talk about my medicines. (It is a December appointment.) Sometimes anger appears because people keep changing things around.

Fortunately not all parkies experience this memory thing.

Carpe Diem.

Happy Anniversary (52)

Posted by

4

I woke up this morning and there on my Facebook feed
Was this beautiful expression of love on our anniversary

It was made by my friend Edie down south
God spoke to her, we never talk by mouth

She has this exquisite talent she is sharing
she posted this on the day of our pairing

Edie, you did not know
that fifty two years ago

Cheryl and I were wed. Thanks for your art.
This day is special, thanks for the great start.
August 29, 1970

It was a seriously hot day. We were dressed to the nines. We were skinny. Life was in front of us.

Happy anniversary to us!

Carpe Diem. (I do not know why I wrote 53) 🙂