Love and Life

7AM and a Funeral

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

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

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

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

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

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

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

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

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

We came home and Cheryl had ice cream for lunch.

Carpe Diem.

In the Morning

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

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

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

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

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

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

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

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

– Desiderata by Max Ehrmann

I am not convinced, Max.

Carpe Diem.

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.

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.

Grace

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Recently a classmate and friend of Cheryl passed away. Sister Mary Claire Hausfeld was not in Cheryl’s ICA class. Cheryl went to grade school with her and Mary Claire went to OLA high school. She found her vocation after high school. But that is not what I want to tell you about.

In a wonderful and well written obituary about Mary Claire and her life of service S. Delouise Menges writes about grace in Mary Claire’s life and how to recognize grace in our lives.

This poem by Marilyn Chandler McEntyre that Mary Claire used in prayer is a beautiful and touching meditation.

How to recognize grace

It takes you by surprise

It comes in odd packages

It sometimes looks like loss

Or mistakes

It acts like rain

Or like a seed

It’s both reliable and unpredictable

It’s not what you were aiming at

Or what you thought you deserved

It supplies what you need

Not necessarily what you want

It reminds you, you’re not in control

And that not being in control is a form of freedom

I have read this over several times and the line that strikes me most is “And that not being in control is a form of freedom”.

This life of Parkinson gives that statement new perspective. Little of our life is able to be controlled and I for one would like life to at least be predictable. It is not predictable either and that can be a form of freedom if you let it.

Carpe Diem.

October 2, 2022

One More Thing

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There is always one more thing to do, one more chore to accomplish, just one more job. The unpaid but highly rewarding job of care partner is filled with unrelenting detail and a never ending series of little jobs. The list is long. New things are added often.

Take some time to reflect. Cheryl’s creeping dementia does not allow her learn new things or compensating techniques easily. And she may not learn them at all. She might learn the reverse. Always be encouraging even as you as care partner become discouraged.

Carpe Diem

Enjoy the rest of it.

Whatever it may be.

Help where you can. Sometimes she will refuse the help. Help anyway.

Double Carpe Diem.

I Found Words from Dad

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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.

It was a Good Breakfast, Dear.

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It is important to try making it into a nice day. A few weeks ago another Cheryl wrote on her blog – just let it go – or words to that effect. As we move further down this road of Parkinson I find ways to simply make life more enjoyable.

Cheryl likes egg bread. It is a memory from her childhood. My mother always called it french toast. I do not know what the French call it which sent me on a quest for knowledge from the internet of all knowledge. They call it pain perdu and that translates into lost bread. French toast (pain perdu) is always better if it is made with stale bread. It is better in my opinion if it is made from stale sourdough bread.

This morning I coaxed her awake with the thought of french toast with blue berries and a little whipped cream. This is a picture of mine. She was already eating hers when I decided to take this picture. She had slept late today but it is a good day.

French toast (aka eggbread)

“It was a good breakfast, dear”, she said to me as I was loading my plate into the dishwasher. We have no real plans for today. Perhaps I will take her for ice cream later in the afternoon. Perhaps not. We will just go with the flow today.

Carpe Diem

A Never Ending Search

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Breakfast

In my never ending search for a good day for Cheryl, this morning I went to a little donut shop near us and bought a dozen from Maggie. I had not purchased donuts from Maggie for some time.

Linda was coming over today to sit with Cheryl. I was intending to ride my bike around Lunken and the Ohio river trail. I asked Linda what kind of donuts she liked last night. The chocolate iced ones are hers. I sent this picture to her in a text this morning. She appeared early.

The donuts were only hours old. Ron makes them overnight.

Donuts used to be $11 a dozen with coffee. Today they were $14 a dozen without coffee. That is twenty-seven per cent more for you math weenies out there. It might be more considering the coffee. Inflationary pressure has finally come to donuts. Gasoline prices are down. Donuts are up. Darn.

I went to ride my bike. When I had returned Natalie was almost finished cleaning our little condo.

I made chicken Parmesan for dinner. We went to a little ice cream shop for dessert.

It was another good day.

Carpe Diem.

More Things I have Learned

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After a sleepless night and an early rising at 5:30 am I begin to doubt my great idea of buying a new bed so we could sleep better. The last couple of nights have been a build up to last night’s insomnia.

After that experience I notice a couple of things. We are both on edge. She is upset that I am angry that she could not sleep and wants to offer an explanation. I am only-one-cup-of-coffee cranky and unwilling to accept any explanation made up out of whole cloth. As the day continues we will ease up and move on as we recognize that we both are very tired.

Most nights the big new bed has made a huge difference in our sleep. Lately I have been letting her sleep in a bit because it seemed to me that she was very tired in the morning. The LOUD AND ANNOYING clock did not wake her up. I think that will change.

I Have Learned

  • Kindness returns after 2 mugs of black coffee
  • Cheeriness requires more coffee
  • Grumpy can last all day if you allow it to.
  • Maybe listen to the explanation while getting more coffee
  • Get her to take 7am meds and get breakfast
  • If she wants to make Christmas cookies, let her.
  • Her conversations will wander all over the place when she has slept poorly.

Carpe Diem.