Month: November 2022

Christmas Memories

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From Cheryl on December 27, 2021:

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.

Carpe Diem and save the memories as best you can.

Black Friday

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This is a term associated with the Friday after Thanksgiving Day. (2022) We had been at Anna’s house. Anna hosted. Almost everyone was there. Cheryl sat at the end of the table near Anna. Anna read a wonderful prayer. I sat at the other end of the table near Scott and Gavin. A great meal surrounded by family was enjoyed by everyone.

Today – black Friday – Cheryl was a little down this morning after breakfast. She talked about not understanding what was going on about her yesterday.

She did not remember that she had forgotten being there last night as we went to bed and I talked about the meal and conversation at Anna’s house. — Last night as she was crawling into bed she asked about going to Anna’s house for Thanksgiving dinner. Without thinking I responded with we were there all afternoon. Do you not remember having dinner at Anna’s? Luke had really long hair. She became upset. She could not find that memory and it seemed that for a moment it terrified her. (I knew immediately I had made a terrible mistake of assuming she knew.)

She talked about “losing her mind” this morning. She talked about her granddaughters who were sitting all around her not understanding the surroundings. We had another moment were we sat for a minute to recognize the changes in her memory and cognition. (I am losing her more and more and she recognizes that and it makes us both sad.)

Thank you Lord for the moments we both still have. Even if we cannot remember.

Carpe Diem.

Thanks

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Surrounded by Friends full of grace

In the Autumn of 2021, I found out through no fault of my own that we are surrounded by good friends willing to step up and help out with Cheryl’s care. I wrote this note of thank-you sometime ago but on this Thanksgiving Day of 2022 I am revisiting these thoughts of gratitude for all that you have done for Cheryl and me.

I appreciate everyone’s help whether it is a small thing or a big thing. Sometimes it is a phone call. Sometimes it is merely joining us for dinner after church or “Pizza Tuesday”. Sometimes it is taking the roll of care partner for a couple hours. Sometimes it is staying with mom while dad goes somewhere for an hour or a week. Sometimes it is merely holding the door for Grandma. I love you all. Thanks so much for helping.

Cindy

Cheryl’s cousin’s wife Cindy began coming over to sit with Cheryl or take her to one of her exercise classes once a week for a couple hours. I am free to do whatever. (Thanks, Cindy.) These days in the warm summer Ohio air, I often go ride my bike somewhere. Cindy surprised me in Autumn a year ago by asking me what I did for exercise after a discussion about Cheryl’s exercise classes. One of Cheryl’s instructors was a friend of Cindy’s. Cindy spontaneously offered to come and be with Cheryl while I did something else other than care give. It took me several weeks to figure out what to do with my new found freedom and now I look forward to it.

Cindy often comes over on Thursday which works best for her and her work schedule. This week of course Thursday is Thanksgiving day so she said she can come tomorrow. She is a gift to me that I find hard to put into words.

Jane

Our next door neighbor, Jane, comes on Mondays typically to sit with Cheryl for a bit while I go ride my bike around somewhere or merely grocery shop. Cheryl sometimes walks across the hallway to visit with Jane. She is a good friend and close. Often Jane goes with us on “anything goes pizza Tuesday”. She reacts to Cheryl’s discussion much like Nancy does. Over the years Jane has had issues with her health and Cheryl’s first thought is to see how Jane is doing. Jane has pointed out things to me that she notices about Cheryl and has suggested solutions for those without any judgement. (Thanks, Jane.)

Jane is celebrating today with her family in north central Ohio. Safe travels, Jane. You are a blessing to me.

Linda

My cousin’s widow, Linda sits with Cheryl while I go do something else. Last May I signed myself up for a caregiver’s class to find out about other services that were available. Linda came over fairly early in the morning so that I could attend this class. I found the class itself very useful. It was primarily oriented towards care partner health and well-being. (Thanks, Linda.)

She has encountered some tragedy in her life. Her sister Diana recently pasted from this life but today she is spending her Thanksgiving with her daughter, warm, in California. Safe travels, Linda.

Mary Jo

A few months back Mary Jo sent an email to me to remind Cheryl (and me) of a commitment she had made during a chance meeting at our parish first Lenten fish fry since the Covid pandemonium closed the world. Mary Jo indicated that she would like to come and visit with Cheryl occasionally. She comes on the third Wednesday of the month to visit. (See Jane’s organization below.)

Mary Jo’s visit seems simple and innocuous but social interaction no matter how small is helpful to Cheryl. Each time Mary Jo visits she is a new acquaintance to Cheryl. Cheryl shows her pictures to Mary Jo and tells her about our children and grandchildren. Thanks, Mary Jo, for sitting and listening to Cheryl’s remembrances.

Nancy

Last evening we had dinner with Cheryl’s sister Nancy. We have been doing this more and more. It is helpful to me in a couple ways that Nancy might not think about. Nancy, firstly, is not dealing with any dementia. Her conversation goes in a straight line. That fact by itself often provides relief to me. Over the course of my working career I traveled to other countries and many of these did not have English as their base language. It was always a great relief to hear American English from the people around you waiting for an airplane back to the states. Cheryl’s mingled conversation is much like trying to make sense of a foreign language with little preparation.

The second thing is that when Nancy talks to Cheryl she is accepting of whatever Cheryl might say. Cheryl tells her about the children in our house, their sister Janice and other thoughts as they occur. Nancy does not correct or suggest anything different. Sometimes she will ask for clarification if Cheryl has mixed up names or dates. Cheryl recognizes that she does mix things up but she does not have the stress of keeping the story straight when conversing with Nancy. That is stressful to her, saying the right thing; giving the right answer; not offending anyone. She learned those from her mother and they are deeply ingrained in her personality. When talking to Nancy she relaxes. Thanks, Nancy.

Nancy has a new person in her life, Gene. Cheryl and I a grateful that she has his companionship.

Family – Sons and Daughter

My son David and his wife Melissa have a wonderful patio and a big green backyard. Many times with little warning over the summer, I have asked to come visit for a bit with Cheryl. Cheryl likes to visit her children and see how they are doing. Sitting on their patio in the sun brightens her mood. It gets us out of our little condo and does not require a lot of preparation by me. It is a sort of little day trip for her and I can chat with my son who is a fellow engineer.

They have always responded with yes. (One time they were out of town on a spontaneous getaway weekend.) Thanks, David and Melissa. We are very grateful to you and Melissa for allowing us to intrude in your life.

My son Scott sits with his mom while I go to my stock-club meeting once a month. Thanks, Scott.

In 1984 several of us engineers decided to make ourselves rich by speculating in the stock market. We started meeting in March of that year. The markets have soared and ebbed. We languished through “black Friday”. We bought gold mining companies. We sold gold mining companies. We drank a lot of beer discussing and criticizing corporate management. We have won big (ABBV) and lost big (F). Good friends and lots of beer with dinner in the back room of the bar makes for a fun evening. Thanks again, Scott. We are grateful to you and Mavis for letting us intrude in your lives. I have also parked Cheryl at Scott and Mavis’s house near us so that I could ride my new ebike around our old neighborhood. Cheryl could see Zachary – the newest grandchild – run around while I was riding. Thanks, Zachary.

My daughter Anna visits with her mom and in the summertime when her high school is on break takes her mom to exercise class. Last year Anna stayed with her mom for a week while I went to visit my sister on the west coast and Joyce and I attended my nephew’s wedding. Jeff and Stephanie have a new baby girl. Thanks, Anna.

Anna also calls her Mom randomly just to see how Cheryl is doing. (Anna you cannot see how your mom’s face lights up when I tell her it is you on the phone.) These are really simple things that your mom and I appreciate. We are grateful to have you as our daughter and Eric as our son-in-law.

Anna is cooking Thanksgiving dinner this year. She sent out her list of what everyone else is bringing. My job is rolls or bread. I broke my forty-year-old dough hook yesterday starting these rolls. Today I kneaded dough by hand. I have not done that for awhile but I am thankful that I had the opportunity. Thanks Anna and Eric for hosting the great collection of family today. It will be crowded and fun.

Allison

Allison comes once every six weeks or so to trim and shape Cheryl’s hair. Before she started coming to our condo I took Cheryl to the Salon Named Desire every few weeks to have her hair cut. The salon is located on the second floor of an old building in the business district of the suburb of Pleasant Ridge.

Overtime it became harder and harder for Cheryl to negotiate the stairs. When Cheryl had foot surgery I asked her through the salon if she would be willing to come to our condo to cut Cheryl’s hair. She did and as I discussed it with her she said she had several clients that she visited at home.

Cheryl’s foot healed and we went back to me driving her to the salon but eventually it became an issue. We adapted and so did Allison. When she leaves I vacuum the large bathroom floor. Thanks, Allison.

Natalie

Natalie comes every other week to clean our little condo more thoroughly than I would. And this visit usually aligns with Allison’s hair visit. She is our niece and has developed her own little cleaning service. She is a godsend. She sees and cleans and dusts and vacuums. When she leaves everything is shinny and clean. The appliances have no splats and splashes and dribbles and fingerprints. We usually go out to a local diner/bar for dinner when she comes to preserve the clean for just a couple more hours.

Yesterday the furnace guy came to do his yearly tune-up. He remarked as he took out the filter to blow it out and clean it, “You guys keep this place awfully clean. There’s no dust on this.” Thanks, Natalie. I am pretty sure this is all you.

This week one of her kiddos is ill. Get well soon, Charlotte.

Jane’s Organization

Cheryl has a wonderful bunch of friends with whom she used to play bridge, decorate church and other activities. Our neighbor and long-time friend Jane has organized several of these women to come visit Cheryl on a regular basis. On various Wednesdays of the month Cathy or Kathy or Marg will appear for a visit. On the third Thursday Carren and Nancy (different Nancy) come to visit. Barb has come on the last Thursday to take Cheryl to lunch. Thanks to all of you for spending time with Cheryl.

Cheryl needs social interaction more and more as we travel this Parkinson road.

Clementines

This group of women went to grade school together (St. Clement hence the Clementines) and have kept in touch throughout their lives. Kathy, Jeri, Kathy, Anne, Mary, Barb, Mary Pat, Marilyn, (I missed someone) you are a great group of friends she has had since grade school and she really enjoys your company. Thanks to all of you for being part of Cheryl’s life.

Thanks specially to Kathy and Marilyn for talking to Cheryl over the phone when she her confused mind has decided there is a Clementines emergency.

These are really just a few of the things, people and experiences that I am thankful for today. Cheryl has told me several times over the past week that Easter is next week. Last night she did not believe that Thanksgiving was tomorrow. This morning she seems unsure of our activity and remarked that it will be a busy day. Somewhere in her confusion she knows today is special. To all of you who help us no matter how small, thank you for all you do and have done.

Time to shape the rolls.

Carpe Diem.

Full On Baking Mode

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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.

Carpe Diem

Conversational Receptiveness and Dementia

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Communicative processes used to discover what is needed or desired by others in business or other walks of life work well with loved ones experiencing dementia and related memory issues. And while the single most important concept to remember is that short term memory loss affects every conversation, short term memory loss greatly affects attention span. Keep it short, keep it kind and keep it simple.

Here are some tips from an article in Psychology Today’ website:

  1. Consider the timing and mood of your recipient.
  2. Check your own emotional level.
  3. Be responsible for delivering clear communication.
  4. Consider using I-messages to avoid blaming or putting others on the defensive.
  5. Be a good listener (attentive) when receiving a communication.

And here are more from the Social Care Institute for Excellence website in UK:

Their focus is providing professional care to Alzheimer’s patients and those dealing with other sources of dementia. Their techniques are good to understand for non-professional care givers. I use this list to think about and discern how better to help Cheryl.

  • Minimize background noise
  • Relax
  • Think about how the person may be feeling
  • Always introduce yourself
  • Greetings or ‘verbal handshake’
  • Physical approach
  • Be aware of emotions and touch
  • Identify the emotional state of the response
  • Don’t be shy from tears or laughter
  • Say what you think the other feels
  • Keep it simple
  • Use the person’s name often
  • Use visual aids and prompts
  • Confirm understanding

Minimize background noise – I have noticed that Cheryl is easily distracted by almost anything that passes into her line of sight. I have noticed that Cheryl is unable to do two things simultaneously such as talk to someone and keep walking. I have noticed that Cheryl is unable to follow a conversation if two people talk animatedly about some topic in rapid succession or over the top of each other. I have noticed that Cheryl is unable to interpret words spoken with a different lilt or accent other than Midwest Cincinnati. I have noticed that she no longer watches any of her favorite shows on TV. With all of this considered if I want to gain her full attention, I remove all distractions.

Relax – I struggle with relaxing and letting go for a bit if she is out of my sight. As her disease progresses and I see her falter with balance issues, stumbling gait and postural difficulties, my anxiety about her future (and mine) often comes through in my voice. I may say things or express opinions that can easily interpreted as rude, pedantic and egotistical. For those times I apologize to her and you.

Think about how the person may be feeling – I do not do this enough. It is easy from the outside to forget that the person is not the disease. Parkinson seems to make this harder because in one moment she will be “fine” and in the next she will be “off” – not necessarily physically off, mentally off and physically fine. I find this confusing and my default is not “she’s confused – help her”. My default tends toward preachy pedantic lecture.

Always introduce yourself – Most of the time I do not need to do this. I can understand that it may be important for a professional to do this. Occasionally Cheryl is unsure of who I am. Mostly this occurs in the evening if she experiencing a bit of Sundowning. (Sometimes I am “that guy who brings the pills”) Sometimes I tell who I am if I think she will accept it. Sometimes I leave it alone. The important thing is to not be insistent that she is wrong about who I am.

Physical approach – I have noticed that Cheryl startles much more easily than she did before Parkinson (bP). This comes in many forms visually and audibly but the important thing is to not surprise her. Surprises often lead to backing up and falling down which is her usual method of falling. She will move away suddenly from the perceived surprise.

Be aware of emotions and touch; identify the emotional state of the response; do not be shy of tears or laughter – I think these fit together as emotional response to conversation. Sometimes to me it is surprising that she will have tears about telling you that Laurencia is going to Ohio State University. I can understand that talking about her deceased mother will cause tears. Nevertheless it is important to understand that a person suffering with Parkinson may have her emotions very close to the surface. Try to remain calm but it is okay to “have a moment” and be with her. One memory often elicits another more tender memory and things tumble downhill quickly.

Keep it simple; use the person’s name often or the other person’s name if telling a story; use visual aids and prompts – pictures of children; confirm understanding – I have noticed that Cheryl may lose the thread of any story or conversation easily. She will not indicate in any way that she has lost track of what you are telling her. You may detect that she has lost it by some response that she makes. Simply reiterate some part of the story to help her recall. Do not get bogged down in correcting her mistaken thinking. Do not raise your voice to emphasize the correct story, time of day, holidays coming up, time of the year or who is coming to dinner. She will not remember but she will think that you are frustrated, angry or disappointed and respond with – I’m sorry.

Finishing– Just as you prepared to start a visit and conversation, so you must think about how you will bring it to a close. I do this many times a day. (For visits) When you are leaving the our home, make sure you say goodbye. Cheryl may think that you are still here, perhaps in another room. This may cause confusion or anxiety later. Ensure you have her attention, smile, and let her know you enjoyed your time together and the conversation. Shaking her hand or hugging her is a common gesture which gives her a strong clue you are leaving. Leave her reassured and let her know you look forward to talking again.

https://www.scie.org.uk/dementia/after-diagnosis/communication/conversation.asp

https://www.psychologytoday.com/us/blog/healing-sexual-trauma/202008/5-essential-strategies-effective-communication

I spend a lot of time reading articles and searching for useful ideas to help Cheryl. This post is a sort of summary of two of those and how I think I can better communicate with her.

I am still not good at that.

Carpe Diem.

Christmas Trees tell a Story

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As do most things in our lives, Christmas trees and other holiday decorations tell a story of good times past. Some are sad times past but they are stories of our life.

I gave in yesterday as it slowly dawned on me that the tree decoration activity was becoming an overwhelming task for Cheryl. It was her idea and has been for a couple of weeks. “We have to get the Christmas tree up, Easter will be here next week” she told me one day. I had resisted but I thought – who cares? I got the boxed tree out of the garage and put it up. I got the tubs of decorations out and parked them on the dining room table for the next couple weeks. We maneuvered around them. Once in a while she would put up a ornament or two. Many of these are one the dining room ceiling fixture because it was near to the tub on the table.

I have to admit it makes me smile.

Yesterday I had little to do while I was waiting for the laundry to get finished, so, I put up the rest of the tree decorations on the tree. I put the empty tub back in the garage with a small sigh. And the last glass ornament on the ceiling fixture over the table. Our house says Christmas now.

Carpe Diem.

Yesterday Friends Came

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Yesterday several of Cheryl’s friends came to visit. It started out as a low key thing. Our friend and neighbor, Jane, organized many of Cheryl’s friends and old card playing buddies to visit on a regular basis and allow me to escape for a bit. Cathy sent a text message to me a couple days ago.  She was supposed to come last week but got too close to a child and was still recovering from whatever disease virus that kid was carrying. This week she is coming to visit. The text asked if I was okay with her coming. Sure said I.

A day or so later I got a text from Mary Jo. Was it okay if she came to visit. Sure said I. Cathy was coming that day also. Hmmm said she. I thought it was my day. Time to par-tay.

On the heels of those women, Maxine, Cheryl’s old boss and good friend called and said that she was coming. Maxine is older so she came with special requests. For a while there were two women with mobility issues in our house. Friends are great but they need to deal with their own issues themselves. That sounds a bit callous but I have one focus that consumes me.

Nevertheless all went well for a time and I snuck out to the barber for a long delayed haircut. I was starting to favor the gray haired Boris Johnson look.

Today more friends came. Nancy and Carren came over for a visit.

Most of these visits were in response to our friend and neighbor Jane’s idea of a network of friends to help with Cheryl and give me a bit of respite.

I may have to spend some time in discernment. Cheryl was very tired and confused into the evening after they left.

Carpe Diem.

More on Decorating

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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.

Carpe Diem.

The Decorations Continue…

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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

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(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.