You Don’t Know

You do not know when you will learn something important. This seems especially true when care partnering with a dementia patient. Once in awhile I get a glimpse of how much Cheryl is struggling with her surroundings and may or may not understand what is happening around her.

Her friend Cathy came to visit her yesterday. They sat and talked about various topics. I left for a bit to do some grocery shopping and pick up a book from the library. When I returned we all chatted for a little bit as I finished cooking some goetta and packaging it for consumption later.

Cheryl experiences something called Capras syndrome. I only learned the name for what she seemed to be doing a few days ago. Knowing the name for something is not reassuring. My engineer head wants to know how to fix it.

A person with Capgras syndrome irrationally believes that someone they know has been replaced by an imposter. In some cases, they may also believe pets or even inanimate objects are imposters.

from Medical News Today – https://www.medicalnewstoday.com/articles/320042#symptoms

Usually this occurs late in the evening and she does not know who I am. Sometimes though she does not know where she is and has a strong sense of being in the wrong place. Yesterday when Cathy left she was unsure of the ending and as the afternoon went on she expressed the thought that she did not like staying in someone else’s house when they were not there. She thought we were at Cathy’s house. I did not catch on to her confusion until much later in the evening.

This site has information for professional care givers but I find their information useful. https://www.scie.org.uk/dementia/after-diagnosis/communication/conversation.asp The discussion about finishing a conversation is something I will pay more attention to when we have visitors.

Finishing– Just as you prepared to start a visit and conversation, so you must think about how you will bring it to a close. If you are leaving the person’s home, make sure you say goodbye. You should not leave the person thinking you are still in their home, perhaps in another room. This may cause confusion or anxiety.

Ensure you have their attention, smile, and let them know you enjoyed your time together and the conversation. Shaking their hand or touching them is a common gesture which gives them a strong clue you are leaving. Leave them reassured and let them know you look forward to talking again. If you are likely to be speaking to them very soon, for example later that day, say when you will return and leave a note close by indicating when the next visit will be.

from http://www.scie.org.uk

I do not do this as well as I probably should this many times a day. Sometimes she will come to look for me.

(For visits and visitors) 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. She may want to accompany you to the outside door in our lobby area and check for mail.

Touch someone. How simple of a gesture. How much she is reassured.

Carpe Diem.

Black Friday

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

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.

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.

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.

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.

Christmas and Parkinson

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.

The Saddest News

Or what woman, if she had ten drachma coins, if she lost one drachma coin, wouldn’t light a lamp, sweep the house, and seek diligently until she found it? When she has found it, she calls together her friends and neighbors, saying, ‘Rejoice with me, for I have found the drachma which I had lost.’

Luke 15:8-10

In December of last year I purchased a chain of gold for Cheryl to put her 25 year wedding band and her engagement ring onto and wear as a necklace. She had complained for months that her rings were falling off her fingers. She wanted a chain to put them on.

The woman who waited on us at Effler’s Jewelers smiled when I told her what we wanted. I told her to think high school and a senior ring on a chain. (The memory makes me smile. Cheryl is my high school sweetheart, my prom date, where I am home.) She tried it on and pronounced it good, maybe perfect. After a week or so she determined that the clasp was a bit too tiny for her numb and shaking hands to manipulate when getting it on and off her neck. We returned and the jeweler was able to attach a larger clasp. Later she discovered that she was able to ease it up over her head without unclasping it.

She unconsciously would touch her rings and put her fingers through the rings while the chain was around her neck. It would occasionally become tangled and knotted. With another trip to the jeweler I was trained to unknot delicate gold chains. (wooden tooth picks work great) The occasional dissension broke out about wearing it to bed at night. Eventually it was carefully placed in the special box that came from the jeweler originally. The placing in the box became a nightly ritual.

As time went on she added a couple other special rings that she had in her jewelry box. For the past couple of months she has been wearing it with four rings.

In October of this year they are lost. A few days ago as we were traveling somewhere, I noticed that she was putting on a different necklace and I asked her where her ring necklace was and she said, “It’s in my pocket.” I now suspect it was not but at the time I thought nothing of it.

I know that I should not feel guilty about the disappearance of the necklace but I do. I suppose it is the care partner, the 50 years of marriage partner, the help mate, the one who panics most when she falls, the one who is not losing their memory – in me. I feel like I have let her down. I have made it my job to keep track of her stuff and mine.

Tony! Don’t be a phony. Help us out her. THE NECKLACE IS GONE.

Carpe the St. Anthony Diem.

the necklace is BACK!

Update: The necklace is back. It was recovered from the chair she is sitting on. Moral of the story – Don’t make the disease harder than it is. Sometimes stuff just falls in the crack between the cushion and the arm of a chair. (Sorry Tony. You are not a phony.)

Carpe Diem.

Dementia and Daily life

No matter how slight in the daylight hours her dementia which is characterized by memory loss, confusion, inability to understand implied ideas (The garbage is getting full vs. Take out the garbage.), following instructions (recipes), calendar time even when displayed (Monday, October 10, 2022 at the top of the newspaper) and random association of objects (old birthday cards paper clipped to new magazines), it seems to affect every minute of every waking moment of her life. I struggle to keep her informed about what is happening or going to happen soon. It is stressful to remember my stuff and her stuff too.

Today’s topic which started at 4:20 AM this morning was a problem with the computer. Which computer I do not know but I assume it is the on in her office. It was stuck working on some background process and that was clogging up the workflow. If I had to guess it was some Norton Defender thing going on tying up resources. She has a Windows 7 operating system and takes very little to befuddle the processor. None of this happened by the way. It was all a dream that popped her out of bed at 4:20 AM. It popped me out of bed too.

After a little discussion and a trip to the toilet, I got her back to bed and I made a pseudo-check on the computer and reported to her that it would be okay in the morning. It was running a background cleanup process. She should get some more sleep and wait.

When these episodes happen in the middle of the night, I worry about her vivid dreams. She called it a nightmare probably because in her dream she had to get something done quickly. The computer was not cooperating. Lately she has had several discussions about work projects for the church and as memories about her working career. Navigating the discussion is tricky when I point out that she no longer works beyond our little condo. What few little officey jobs she did for the parish evaporated with the do over of the parish hierarchy when the Catholic Church in our area discovered they had too many buildings and not enough people.

A lot of old files and booklets still exist in her office. Lately I have been closing the door to her office at night and reporting to her that it will keep the kiddos out of her area overnight. She usually says, “Good. Thanks.”

I did not speak about the computer although I did point out that she was sleeping pretty soundly when I woke her at 9 AM and she remarked that yes she did not get up at all overnight. (She truly was dreaming when I talked to her at 4:20 AM.) I affirmed her comment and helped her get up. I did not mention 4:20 AM. (Am I harping on 4:20 AM? Yep.)

After she ate her cereal and as I was passing through the coffee pot one more time, she remarked that she hoped the computer was okay. I did not expound on that but suggested she should check later when she had a chance. She did and reported all was well.

Carpe 4:20 AM Diem. (I could not resist.)