The Decorations Continue…

The tree went up today. Perhaps a bit early but hey, according to Cheryl Easter is in a couple days. We have to get ready. Some ornaments are placed in a special circumstance like a lamp or the chandelier that in the picture below. The twelve days of Christmas garland was placed on the china cabinet. That is a new position this year. Much like the trip to the shoe store it is an overwhelming task.

The dementia and associated cognitive decline keeps her from maintaining any focus for more than a few minutes. It also adds a twist of spontaneous creativity. We have had this floor lamp for years. today she said, How can I hang these on the pull chains?

Some ornaments were hung on it with care. The beaded garland went over the door to my hideout. There are more to come sometime. Late night punding has commingled with hanging ornaments. Sometimes the ornaments are viewed and reviewed and replaced in their storage container. So far the tree has captured about seven ornaments.

Not bad for three hours of activity. It can be dumfungling to her. (Use a new word often and it becomes yours.)

Carpe Diem

Notes are Great

(This picture of a fossil track called a mortichnia heads an article in Omni Magazine.)

But impressions are better. They are more general. I was thinking about this early this morning while writing in my little log where I make notes about Cheryl’s day to day.

I note sleep patterns. I write when she goes toward and eventually gets into bed. I know this intimate detail because I have been helping her get her pajamas on and positioned in bed. Most nights she stays. Sometimes she has gotten back up and we will sit for a bit while I get finished with whatever I am doing before going to bed. Many times that is writing this little blog or my “Hitchhiker’s Guide” to care giving. (I am collecting stories and thoughts in a book.)

We have been speaking untruthfully to therapists when they ask, Do you need help with getting dressed? I usually respond with sometimes but mostly not. Cheryl mentions her numb feeling fingers which get in the way of snaps and buttons. None of these are on her pajamas but late at night it is confusing to her.

I note conversation in the evening which lately is confusing. I have thought it might be interesting to capture it and transcribe it. It suffices to say that it is very odd and non-linear.

It is better to stay in the moment. It is better to reflect on those moments and write my impressions later.

Carpe Diem.

Foolish Man.

It was a less than brilliant idea of mine. We are backing into full on Christmas shopping mode. Today as we left her exercise class Cheryl asked, What should we have for lunch? Usually she is asking what sorts of leftover foods are in residence in our refrigerator. While I am stalling to think about what is in the fridge I asked her if she wanted to go to lunch in our favorite diner. She said yes.

Our neighbor works at this little lunch place in our little town. Carrie was working this day and we chatted and caught up for a bit. We had lunch and Cheryl mentioned that she thought there was something she needed to shop for but could not remember what it was. I was my helpful self and reminded her that she wanted to get some new slippers. I had bought her some Minetonka moccasins a couple years ago online and she had worn them enough that they were getting beat up. I suggested that we could find a shoe store and look for slippers. (FOOLISH MAN) I found the nearest Shoe Carnival and after checking online discovered that they had a couple varieties of lady’s slippers to choose from. (Why do I make suggestions and eventually order for her in a restaurant and never transfer that information to other similar situations. Why?)

I am taking her to a shoe store. (foolish man) Their slippers are in the back near the clearance racks. Foolish men think that they are going to zip in, get some slippers that fit, and slip out. That is why they are referred to as foolish ignorant men. Part of the X that men do not get at birth lies on the 27th chromosome near the end – SHOPPINGFORSHOES – the shopping sequence genome. The combination of the leather, vinyl, foam and cardboard pheromones commingle to trigger this gene sequence into action. It is remarkable that even a dopamine deficiency can be overwhelmed by this gene to enable the lame to walk with confidence. All balance issues disappear. A study should be made about this phenomenon.

I realized that I had taken her to a place that was significantly worse than a restaurant menu. I gave in and helped. We rejected with sadness all four-inch heels (although there was a woman my daughter’s age there shopping nearby that looked good in them.) Also rejected were those with pointy toe boxes on them. Too much toe repair to fit in that configuration any longer. Cheryl has walking shoes, some slippers and a couple pairs of Easy Spirit black flats. She has no lighter beige/tan/sand colored shoes if she is looking for “something different”. She wanted to think about and make a list of candidates for later. I suggested I could take pictures of the boxes to save for later. She replied that’s a good idea. After an hour and a half we left with pictures, notes and slippers.

Foolish man.

Carpe Diem.

Word of the Day – Dumfungled

Word of the Day – Dumfungled
By Kath November 9, 2022 Word of the Day

Dumfungled (verb) (Scots)

dum-fun-gld

  1. mentally and physically worn out.
  2. done for, wasted
  3. Some beer would be good. Perhaps a nice single malt.

Example sentences: “Leave me be, hen. I’m feeling dumfungled at the week I’ve had.”

My sentences: Dumfungle the competition and take over their area. | Dumfungling takes a lot of time but it is so restful afterward. | AND | My wife has Parkinson’s disease, so, she is dumfungled in the evening.

Oft times as a care partner I find little diversions to take me away from our daily existence. Reading, language, words, word usage and humor are mainstays of my diversions. This word-of-the-day from a site in the UK captured my interest today. Thank you Kath – whoever you may be.

Carpe Diem.

Embrace It

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

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

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.

Too Little Too Late

Sad words of defeat and disappointment

Disgusting words of skeptical cynicism

Throwing in the towel in defeatist mysticism

Certain that you are beaten

But wait something did change

A small difference, a tiny deflection, a glimmer of light

A sliver of hope, a glimpse of a dawning

A view of the next phase is within range

It may have been too little too late

To do nothing is neither a little or late

Doing nothing is an abatement, acceptance of defeat

Sad words indeed

Too little too late

These thoughts jumped into my head the other day when I was reading a comment from Cheryl’s cousin. It is often used as an epithet. The follow up question of “what would you do?” often merely raises tension instead of being treated as a valid entreaty for knowledge.

Life is complicated and rarely in sharp contrast.

Carpe Diem.

When She Says Thanks

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

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

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

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

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

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

Carpe Diem