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.)

Nighttime Conversations

She was still awake when I came to bed after reading for awhile. This conversation ensued.

C. – Dan is that you?

me – No it is me Paul.

C. – Oh. You’re here now?

me – Yes. Is that okay?

C. – Where are Jan and the rest of the kids?

me – Gone now I guess. They must have gone home.

C. – Okay. Are you staying here?

me. – Yes. Try to get some sleep. I’ll stay here with you.


In the morning as I got her awake. I had checked on her a few times earlier but at quarter ’til ten I gently urged her awake. She said, “There were a lot of people around here last night.” I replied, “Who did you see?” She replied, ” I didn’t see anybody but I could hear them.”

When she sees people they are very real to her. Before going to bed we had tried to play Scrabble for a bit. Scrabble was her favorite game for many years. We had not played it for about a year and a half. I thought I made a cool discovery. I tripped over a Merriam website called scrabble.merriam.com that helps to find words with certain letters at the beginning, end or containing them. I told her about it and showed her how to search on the website look up page on the laptop. It was too much for her.

She became tired and put on pajamas and got ready for bed. As i helped her take her bedtime meds, she asked me something about her sister Jan. She wanted to save some information for her about the upcoming Sunflower Rev it up for Parkinson’s fund raiser. She then asked me for Jan’s phone number.

It is hard for me to get a grip on conversations like this. I start first by asking if she knows where Jan is. Sometimes she remembers Jan is deceased. When she remembers this I tell her to merely close her eyes and talk to her. This time however she did not remember that Jan was no longer here. I reminded her that Jan was in heaven to which she replied, “Yes, she is talking to mom about it. Do you think you can find a number?” I told her I would look for it in the morning.

It is morning and she has not asked me for the telephone number yet. But there were a lot of people here last night in her head.

Carpe Diem.

Apathy and Living

Has she apathy? As we move forward it seems to me that she cares less about day to day activities. She seems to recede into her own thoughts but not as a prevailing occupation. I think of it as apathy-not-quite. When she gets in this mode it’s often temporary.  She is tired from some activity.

Specifically activities like taking a shower,  getting cleaned up,   physical therapy sessions or exercise classes are obviously tiring for a PD sufferer. Something as easy as thinking about what is next seems to tire her out also. It like a temporary apathy.  Procrastination?

It starts with, ” I don’t think I can go to… exercise class, church, physical therapy…” Admittedly it takes a lot for anyone to be motivated to exercise. It was not a big part of our lives when we were younger. Neither of us were sports buffs. My main sport riding my bike. There is a solitude to doing that which I am unwilling to give up or share. As her care partner, it is frustrating for me that she cannot observe how much she is helped by exercise and her PT sessions. She seems to not remember. It seems like she is going merely because I am taking her there.

When Cheryl gets in this mode (mood?), I turn the corner to something else. I am resistant to letting her go on and isolate herself in her little office area thinking, punding and organizing. I take her out. Anywhere works as long as it is out of our condo.

Yesterday I took her one of our local county parks that we have not visited for a long time. Afterward we went for ice cream at a nearby Dairy Queen. I had planned to make dinner at home but she suggested we find barbecue somewhere. This being an odd suggestion because it seems to upset her stomach often and she says never again later in the evening. We did not find the barbecue place to be amenable to folks with mobility issues so we landed at one of our old favorites and ordered something different than we usually get so the newness was preserved. On the way home she thanked me for taking her to Lake Erie and she told me a story about when she was very young.

In the early days of her father running his own gas station which was a life long dream of his, he rarely took any vacation time. It seems one of his friends had a vacation cabin up near Lake Erie and not far from Port Clinton. There is a park nearby called East Harbor State Park. Our walk by the shore of a much smaller lake in the park much closer than Lake Erie must have taken her mentally back to her childhood and a very fond memory. We visited the same area a few years ago and visited East Harbor. She talked at length about the trip with her mom and dad. She thanked me for getting her there and back in the same day.

I started this writing and contemplating apathy, but maybe it’s projective (mine) apathy? Or predictive apathy? Or apathy is the wrong word? (indifference? passivity?) Or is it poor sleeping patterns? This morning she got up at quarter til ten which means that she was in bed for about eleven hours. She awakened this morning from the same position she fell into when she got in bed. On the previous evening she went to bed very late after midnight and slept very little. (As a result I slept little also.)

Is apathy and memory related? I wonder about ideas like this. Perhaps she cannot remember that she seemed to enjoy herself the last time we went there? Wherever there is.

When I finally teased Cheryl awake this morning, she opened her eyes and asked, “Is Mary Pat here?” An amusing opening question about the day. I smiled and told her, ” No Mary Pat is not here. I think you were dreaming about her.” I have no idea where the Mary Pat (a childhood and current) friend thought came from but she has talked to her a couple times over the past few weeks.

I encourage her to talk to her friends when she gets excited about some memory or misconceived thought. Many of them have had strange conversations with her about things. I used to be embarrassed for her and, at first, discouraged these phone calls which she often decides to do later in the evening. But as I thought about it I decided that it was not my place to absorb or accept or become embarrassed for her. Her friends know her state of mind. They are wonderful people and she is blessed to have them as life long friends.

Focus, cognitive abilities, caring, likes and dislikes are all related to memory issues. Staying active no matter how small that activity is helps.

Carpe Diem.

I Want to go Home

A recurring theme in Cheryl’s head is “when are we going home?” I try at first to answer this by saying that’s good because we are already there. This rarely works. Sometimes it merely makes her angry with me.

The conversation is confusing when we reach this point. I can say to her, okay put on some clothes and we will get some lunch and come home. So, how would you find clothes for you in a place where you did not live? This is the first confusion but she accepts the fact that she has all her clothes here without accepting the truth of “home”. Even I am confused.

Later today, she is dressing now, we will go find some lunch somewhere and come home again.

Physical therapy is on the schedule for later this afternoon. Hopefully she will be tired after this activity.

Carpe Diem.

Who am I?

Last night was a peaceful night. Cheryl laid down in the big new bed at 10:30 or so. I finished up a couple things and joined her at a quarter ’til 11. It was a restful night. I awakened to go to the toilet at 6:30 am and so did she. Cheryl laid down again but I got up.

At about eight I went to check on her. She was awake laying in bed. The creaky door had startled her. I apologized for wakening her from her dreamy state. As I closed the door to return to the living room this conversation ensued;

Cheryl – Who am I?

Me – You are Cheryl.

Cheryl – And who are you?

Me – I am Paul. We’ve been married for about 50 years.

Cheryl – Well, happy anniversary!

I do not know what to make of this conversation. As I left the room she added, I love you.

I can understand that in the early morning hours she is a little more confused than normal. She is still tired. I do not know how well she slept. I can report that the couple of times I got up overnight she was in the same position. She moves little when she sleeps during the night. At about 5 am she was having a conversation with someone in her sleep but she often has these conversations. I do not always hear them.

We will see what the day brings. So far, my youngest son has invited us to dinner on Father’s Day which is Sunday.

Carpe Diem.

God Makes a Way Out of No Way

Sen. Warnock from Georgia and pastor of Ebenezer Baptist Church in Atlanta says this often when he preaches. He found inspiration from his father who told him every day, get your clothes on, put on your shoes! His dad’s point was only you can do it. No one can do it for you. It is up to you and your attitude.

He is a pastor of southern Baptist convention. I am not a Baptist but the lesson is not lost no matter your faith or lack there of. It is up to you to make a difference in your own life and the lives of those around you. No one can do it for you nor should expect for someone else to do it.

We have to start with ourselves. Let God in. He will make a way if you let Him.

Today is a good day to start.

Carpe Diem

History of Overnight

It occurs to me this morning after another overnight of strange behavior that discussing her actions overnight has no useful purpose. So, I have not this morning. I will wait and see if I need to discuss it with someone else.

Part of Carpe Diem is to stay in the present. The past is the past and while it gives me a hint as to what is coming, it is a very dim view with poor illumination.

Carpe Diem.

Observations of Lack of Sleep

Scott was here last night to be with Cheryl while I visited my stock club meeting. The fourth Monday of every month is the meeting of our little stock club. We started this little club in 1984. Over time we swelled to 20 members but the past few years attrition and death has shrunk our number to eight. And over the past few years the meetings are more social than business. Where else can eight old men get together and trade war stories about getting old, fortunes missed, grand children achievements, the proper temperature of beer for drinking, Parkinson’s disease, prostate problems, cataracts and hearing issues, but in the backroom of a local watering hole near a railroad track? It is always fun and over the years I have rarely missed it.

Before I left for the meeting Cheryl’s stomach was bugging her a bit as happens occasionally after her 4 pm meds. When I returned I asked her if she had eaten anything. She said yes but behind her Scott shook his head no. She answered my question how she thought I wanted her to answer it.

Eventually about 11:20 pm we went to bed. Over night she was fidgety and got up at 2:30 a.m. to make a list so she would not forget something. I sat her at the kitchen table with subdued lighting and with paper and pencil she worked on her list.

Her list is a business memory. I sat with her and about 3 a.m. she decided to sleep some more and finish later on. Buzzing around in her mind these days is the thought of creating a database of birthdays for the people in her family. Many times and in many instances she has started this task. Just like engineers this thinking starts with a pad and paper. Often sketches are made to indicate data flow and information input. Just like an engineer Cheryl’s notes switch back and forth from cursive to printing. And although she had an urgency about this activity in the very early morning hours, she had no ideas about what it was or what it was for in the daylight hours.

She seems so fragile to me in the morning lately. She is still working on the remnants of some dream as she awakens. This morning she got up and went into the bathroom. I got up also and put clothes on, got some coffee for myself and turned on the CBS news to see if any new wars developed or any movie stars got divorced overnight. About 20 minutes later I went back to check and see if any help was needed or if there were any special breakfast requests. She was seated on the closed toilet waiting for someone to bring more toilet paper. I showed her where the extra rolls were and asked if she wanted cereal for breakfast. Yes was her reply. I returned to the living area.

About ten minutes later I went to check again and she told me she was still waiting for someone to bring toilet paper. The thirty minutes of database design time in the middle of the night messed up her waking pattern.

More and more she seems to have a slow switch from early morning confusion to present. I have not found a solution to any of this confusion and delusion. I listen to her conversation and make a lot of rapid decisions about how to respond. If it seems like she is getting ramped up about someone coming (that I know is not) I try to gently steer her toward the correct thinking. If she is getting fired up about having a family gathering I merely agree with her plans.

On this particular morning she was concerned about whether David was going to show up any minute to cook the Thanksgiving turkey. It took several repeated conversations about date and time but eventually she seemed okay that Thanksgiving day was not today. Over several hours she came to the conclusion that she should take a shower and get ready for her exercise class. Over those same several hours I planted various seeds of the idea about taking a shower and looking for exercise clothes to wear.

Me and how I feel – It is wearying for the care partner to both console and encourage and direct and deflect her delusions and my own background anger (too strong a word – disappointment?; discouragement?; vexation?) with her brain and how it is operating with PD. My question – Why can’t she have the movement issues without the mental disability? (God are you listening? Why her? She has always been a sweet person. Why did you dump this crap on her?)

Observations about my reaction to her needs – (Shit! Not again. This is the same conversation we had 15 minutes ago. whiskey tango foxtrot.) How can I help dear? Cheryl – you can’t help. Perhaps not but let me hold your purse for you while you get out of the car.

Is this genuine love? … To have and to hold from this day forward, for better or for worse… Those where part of the original agreement. Too late to back out now. She looks so sad and distraught when she realizes that she needs me to help her up from the chair because her scoocher is busted. It is heartbreaking.

Carpe Diem.

I Have to get the Article Written

With that thought she got up at 1:30-ish in the early morning. It has come to me that when her dreams become real, I have to just go with the flow. I tell myself that our experience has shown that this episode will last about two hours, so be patient and helpful during that time. Some might to this as a prayer but I think of it as description of what I need to do to help her get through this nuanced dream she is experiencing right now. (And Carpe The Damn Early Morning Diem. 🙂 ) I suggested that she should have something to eat and she would be more alert, her mind would work better while she was writing the article. She agreed with that and asked what we had.

I suggested cereal with a banana cut up on top and some o.j. She took her vitamins. Later after she decided a piece of coffee cake from yesterday morning would be good also, we discussed how she could get started. She looked at the two-day old paper on the kitchen table for I bit. Maybe she was thinking about what to write? She did not tell me.

I suggested we watch TV for a bit while her thoughts gelled. We watched a couple TV shows that were previously recorded. After a few minutes as was our previous experience she became tired again and we returned to bed at 3 am.

The alarm went off at 7 am and I fetched her morning meds and we returned to bed for a little longer as we usually do. Twenty to thirty minutes is usually enough for her to get moving. I fell asleep a little more soundly than ordinary.

I woke up and realized I could not hear her. I got up and put some clothes on. I searched the condo and could not find her anywhere inside. The front door was unlocked. This morning when she got up, she left the house.

Did the rapture happen? It scared me. It is my greatest fear, not the rapture, the fact that she had wandered off looking for something she could only see in her mind. Fortunately she was just outside the front door to our building and it was not raining.

Later as she was laying down to rest she told me, she was looking for anyone awake. She was scared that no one was here. She had decided to go look in the next building for anyone. She asked me if that woman who runs things here was around – whoever that may be. I left, “What are you thinking about?”, unsaid and suggested we go out and get some sun. Take a walk. Maybe we could have lunch.

I felt bad that I fell asleep again.

Carpe Diem.