We had a great visit from all the kids and many of the grandkids. On New Year’s Eve I spontaneously asked our children if they had anything special planned for New Year’s Day. I asked if not would they like to gather around our table for a meal in the afternoon. I suggested about 4-ish. They all said yes.
I stole this idea from Frank C. Church. Thank you, Frank for a spontaneously good time.
Who can tell? Maybe a new family tradition? Traditions have to start somewhere. They are kept up if everyone has a good time participating. Zachary certainly had a good time. He had not seen grandma’s marble race before so Mom and Gavin helped him put it together.
Most importantly Cheryl got to have everyone at her house. She smiled and laughed at the conversation and activity. It was simply wonderful to see her smile.
Her smile and laughter are less as we head on our journey of Parkinson. Yesterday was very special to her and to me.
In this season of happy and family and celebration, after I have gotten through all the wrapping and cookie making and other organizational tasks, I slow to take stock of the year. Good things happened and not so good things happened but mostly this year was. It is in the past now.
Throughout this year Facebook is a personal source of joy, amusement, interest, empathy and puzzlement. When some political whiny rant appears, I am puzzled by the things total strangers will say to others that they would not say in person. I am filled with joy at the pictures of children both young and old. I am amused by the various MEME cards that folks post, sometimes without thinking. I am interested in other care giver’s thoughts as they travel down their road of Parkinson. And I am empathetic to their particular struggles. In this collage of pictures selected in no particular sequence are pictures of things, people and MEMEs that appeared on Facebook during the past year and I downloaded to my tablet as I watched the TV news and waited for Cheryl to wake up.
The good things
The joy in Zachary’s face. He always makes me smile.
Luke’s artistic muses in photography
Max is off to Miami University — I am class of ’72
Laurencia is 21!
Mary Jo Horton
Parkinson Community Fitness
Jeff and Stephanie’s ELFie – Elizabeth Laura Fisher
Zane and Charlotte
Lydia (think songs from the Music man)
Anna’s 50th birthday (I love you)
trips and vacations
New people in our lives
Looking back and memories
Learning how to make cookies
Sr. Carren and Nancy Strapp
Visits from friends of Cheryl
Phone calls to Cheryl from her friends
small faces and their happiness
The class I took on being a good care partner (Linda stayed with Cheryl so I could go.)
A new found interest in cookies and muffins
Finding out that adjusting meds, schedules and eating has reduced Cheryl’s upset stomach to non-existent almost. (and the neurologist MDS says bravo.)
Lunch with Marilyn
The not so good things
Constant reminder of Parkinson
Anna’s Fiftieth birthday (wow, I am old.)
Cheryl’s lost memory
Learning how to make cookies (there have been disasters.)
Cheryl’s worsening confusion in the evening
dementia in all its forms – delusion, hallucination, Capgras, sundowner, showtime
frost on the window (I have never been a big fan of winter)
Cheryl wanting to talk (call) to her mother in the evening (which worries me – I think – unnecessarily.)
Late night punding in her office
These are both incomplete lists. However the good list is already way longer than the not so good list. (And a couple of those are tongue-in-cheek jokes.) I constantly try to turn away from letting Parkinson and dementia drive our life.
I will probably add to these lists during the holiday down time.
We went to one of our favorite places to eat dinner tonight. Friday night with my girlfriend, best friend, lover, mother of our children and life companion. It was a good time. Christmas decorations are everywhere. People are visiting and gathering for the holidays. Bacall’s Cafe was loud. It was full of us old people chatting and eating and drinking and gathering. We were all catching up with each other and the world.
It seems to me that the smaller local restaurants have better service. Those restaurants seem to provide employment to the youngsters in the neighborhood.
Friday night has a special atmosphere. It always has for us. When we were younger and still working full time for others, it marks the end of commitments for the week. Often Cheryl and I would meet for a quiet dinner somewhere. Just us and our conversation was a special time to relax and take stock of things. When the kids were small Friday was often chaos. But those years passed by too fast and it was just us again.
These days I think that it is important to stay with her in her remembrances. If she wants to talk about long ago I try to stay with it. But I also try to gently steer her to the present if she has strayed far off the road. As we were driving to the cafe she asked me where I wanted to celebrate my birthday next week. — Her deceased father’s birthday is next week and her brothers had been talking about meeting for dinner somewhere to commemorate that event.
I am still on a learning curve with this sort of conversation but I calmly reminded her who I am and reiterated the conversation about celebrating her dad’s birthday. I switched the conversation to where do you think we should go? She switched it back to I wonder where Dad would go if he was here. And we went down that road for a bit until we arrived at the cafe.
AHA: Preserve any routines you can. Embrace any memories she has. Calmly help her find her way back to the here and now. Emphasis on calmly and watch the pitch and tenor of your voice.
Date nights are not always for the young. We had a long wandering conversation about the place we were eating. We talked about other places we have been. We talked about family. She had a coke. Years ago it would have been a glass of rose or white zinfandel. I had a gin and tonic. Years ago it might have been a nice single malt scotch. As we have aged we both like sweeter things. It was a good time.
As we were getting into the car for the drive home, one of her old time friends, Donna, called my phone. I almost did not answer. Robo-calls are annoying. Donna had gotten my number from one of Cheryl’s friends that she had met in church. She called to get together for lunch one day after the holidays. A new conversation about Donna happened on the way home. We will have lunch somewhere in a couple weeks.
Gift wrap at a department store was free for purchases from that store. The malls often had a bunch of girl scouts or boy scouts wrapping boxes and raising money for their troop. If you did not want to get stuff wrapped boxes were available from the department store. (With their logo)
That slowly faded away over time. It was part of the season and might still be there but I have not shopped in a department store for several years. Parkinson disease interlaced with dementia does not enable that to occur with ease. I lament that fact.
This year we did spend some time shopping at J C Penney. Cheryl has always liked Penney’s store. It is one of the few department store chains still surviving after Federated Department Stores sucked up many of the littler ones and became Macy’s. A couple days ago a nice gentleman gave us a couple coupons on the way in the door at J C Penney and bid us well as we began our shopping experience. Later when we had a bunch of carefully selected gifts piled onto Cheryl’s walker and headed to the front to purchase them, he saw us coming and as the line to check out was long he asked the woman staffing the cosmetics counter who was idle to check us out. She smiled and said sure she would do that.
As we approached the counter to do that another frantic old woman who had just come in the door barged in front of us and asked the cosmetic counter staff if she could “pay her bill here” because the line was too long to stand in.
Two things I have not thought about perhaps ever in my life; driving to the actual department store to make a minimum payment on an invoice that was sent to me via USPS, something that can be done by return mail and manifesting surprise at the length of the checkout line at 1 PM on a Sunday afternoon two weeks before Christmas. Perhaps she could not afford a stamp or did not have a stamp and the bill was due on Monday. This woman decided to chat with me about those things while the woman behind the counter opened a different computer to access the billing records and accept the $35 minimum payment on her J C Penney account and applied it to the customer’s Visa account. It is easy to understand how cash strapped elderly women get over their head in debt. (Sorry, that was unkind.) I did not chat. I merely stood silent and waited while Cheryl stood there looking tired.
Eventually the nitwit was gone and the cosmetic woman picked up our purchases on her counter and said, I need to get some larger shopping bags. She was gone for about 20 seconds. She checked us out and I helped put the stuff in the bags because she had very little space on her cosmetics counter.
We completed our purchase and I thanked the woman for allowing us to check out with her. She smiled. Perhaps no one had thanked her for helping them that day.
As we left the store I noticed that the long line had dissipated. I remarked about that to the gentleman who was still staffing the door passing out coupons. He smiled and wished us a good afternoon.
It occurred to me this morning (early afternoon) as I was cleaning up the breakfast dishes that often we want our friends, lovers, significant others to be on our schedule. This is especially true if they rely on us for help. Cheryl has not been on my schedule for a long time. She is on parkie time.
Her dementia seems to have added a special aspect to her conception of time and place. Following instructions in a linear fashion is very hard for her to do. Even if you are not interested in doing what she has decided that she wants to do, it is simply easier to go along. It is actually able to steer the activity if you plan a little bit.
There are three things on Cheryl’s agenda for today; Christmas cards, snicker doodle cookies and a list of complaints for the doctor when we see him next week. For me it is merely laundry day. (But these are all things I will do in some part.)
I got up on my typical schedule at about 7:15 am or so. I figured out the Wordle but used up all of my guesses and got a “whew” for my effort. The morning news was not keeping my attention so I printed the address labels for the Christmas cards and placed them in a prominent spot on the dining room table. I made a boo-boo. More about this later.
At 9 am or so I finally encouraged Cheryl to get out of bed. She had gone to bed at 10 pm but I could hear her moving around while I was learning how to align the address information with the Avery labels that I had selected earlier in the day. I came to bed about 11:30 pm. She was up once after that.
Even though I was making every attempt I could think of without a direct command to get her interested in making the cookies, nothing happened. I gave in and finished the cookies.
The labels however was a businesslike activity and she selected that. All was well until she became confused. I had duplicated a page of the labels when I printed them. UGH! The silver-lining was that she recognized the error. She merely did not know how to react to it. (sad face here) In an earlier life she would have said, “Hey you duplicated a page we need to print the missing page.” (She might have added “dummy” as a tease.)
She discovered this just as I was leaving to take a walk and Cindy had come to sit with her. I took the offending page out of the rotation and suggested that she continue with the rest while I took my walk. While I was gone she just stopped. She was unable to continue. It did not occur to her that she could do the page of labels that was unduplicated. And my suggestion that she do that did not register in her mind.
Later in the afternoon I stayed nearby and repeatedly showed her what to do. She finished one more sheet of labels. We have only thirty to go. Last evening I wrote a small newsy letter to put inside of the cards. I had the cards and envelopes pre-printed with our names and return address.
Every time members of our family get together, we have lots of fun. We don’t need board games or card games. We remember lots of events, and those memories breed more memories. Most of the time, the memories are triggered by a long-lost photo that we find when getting out the Christmas decorations. For instance, there is a memory I have that I have told many times over the years– it’s a good memory. I was probably 4 years old and Jan was probably 2 years old, and she had curly blond hair. I had straight brown hair. Mom wanted me to have curly hair. It was Christmas eve. Jan and I were supposed to take a nap. Mom used some metal curlers to curl my hair for the occasion. Then she put Jan and me to bed in Mom and Dad’s bed. At the time, their bedroom was separated from the living room by a set of sliding pocket doors. So Jan and I were told to go to sleep. Jan went to sleep almost right away, while I tossed and turned…wide awake! In the pocket doors there were a couple of key holes that were just high enough in the doors for me to look through. So, of course I peeked in, and there, across from the door, was a doll-size table and chairs, with a babydoll sitting on each chair! I just stood there staring at my new toys. Then suddenly Mom opened the door right in front of me. Then Mom gently scolded me, and told me to get back in bed. She said that Santa was in the kitchen, and he wouldn’t be happy if he saw that I was awake. I went right back to bed and kept quiet until it was time for supper. This is one of my fondest Christmas memories.
Her short term memories are virtually gone and yet she can write these amazing stories from her childhood. This is from about a year ago. she sent it to me in an email. She has almost no use of her computer these days. She does not know how to turn it on.
I am embarking on a global search of stories like this from her.
Well Thanksgiving is tomorrow, Christmas is a couple days afterward and then Easter is the following week. Cheryl thinks that anyway, so, we are all decorated for Christmas (Soon to be Easter) Season.
Yesterday I made banana nut bread out of some soon to be brown bananas purchased specifically for that purpose. Here is the result.
Later today we will make the sugar cookie recipe that Cheryl remembers as a child and later on she made when our kiddos were small. As you can see the Mirro cookie press booklet has been though many cookie wars. (The cookie press itself has been replaced many times.) I am in the process of transcribing these recipes for posterity but I suppose if I look hard enough I could find them elsewhere on the internet of all knowledge. I am not very busy. One more thing is okay.
The cookie dough has been hanging out in the fridge overnight so it should be perfect today.
A new discussion popped into the conversation today, Cheryl is working her memory about where each ornament came from. There is a series of small flat wooden ornaments that she kept herself busy with when she was pregnant with our kids or they were very small around Christmas. They are painted flat pieces of plywood. She did these many years ago. At first they were always hung on the bottom of the tree so that little hands could touch and even remove them with no ill effect.
It is a memory lane thing. As the kids got older they would make ornaments for the tree. Some were made from wheat dough and cured in the oven and later varnished and painted. The last of these – a blue dog bone – is broken this year. (I may do my magic glue trick and resurrect it for display.) Some ornaments were purchased at a Christmas bazaar at the school our kiddos attended when they were growing up. Grand kids have made snow people with their names on them. Cheryl’s mother gave every one of her children a ornament from Macy’s commemorating some event each year when she was alive. All of the ornaments have a story that is remembered and spoken about as the tree is assembled ever so slowly.
The top row of pictures includes Sr. Laurencia’s bells and Grandma’s snowflakes. The oldest grand child, Laurencia, is named for Sr. Laurencia who had a very special relationship with Cheryl in her high school years and in our early married life. Grandma’s snowflakes was purchased by our daughter Anna and when Zachary came along I added a snowflake for him.
There are so many memories to share while putting the tree together.
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.)
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.