Today I got to ride my new bike for the second time
I almost forgot how much I enjoy this activity.
Carpe Diem
A Bike Ride
Month: May 2022
For the First Time Early this Morning
Cheryl went to lunch again with a friend yesterday. Barb had arranged a luncheon with another member of the church decorating committee. (See my previous post)
They were gone for a long time about five hours. When Cheryl got home we talked for a bit and she went to lay down. I think she actually fell asleep for about thirty minutes. Or, at least, she was very still for a while when I went to check on her about an hour later.
In the evening she declared herself tired a about 10 PM and she went to bed. After a few preliminaries she was laying down at about 10:20. I remained up to read as I usually do before retiring. When I came to bed about thirty minutes later she was still when I laid down.
At 1:30 AM or so she was restless and awake. To the bathroom she went. I helped her a little with the toilet because she has confusion and balance issues in the middle of the night. She lamented that she really needed to sleep but she was fidgety and agitated. Nothing I could do seemed to help. I began to think that my presence was disturbing her. She couldn’t get comfortable.
She stayed in our bed. I got up and opened our sofa bed in the living area. I had never slept on it before. It was a new purchase we made with the mad money that we got from the federales during the height of the pandemonium. After a couple false starts and finding a blanket and my pillow from our bed. I fell asleep from 2:30 until about 5:32 AM when my bladder reported fullness to my brain. That is a much longer span than laying with Cheryl fidgeting her way back to sleep. The sofa sleeper itself while not perfect was quite comfortable to sleep on.
I will have to study the living room area floor plan and think about things some more. I had to rearrange furniture in the early morning hours to open the sofa sleeper. That was a little inconvenient in the dark.
Perhaps we are at the stage of her disease and our lives when we will need different sleeping arrangements.
Alas and Carpe Diem
Another Lunch with Friends
A good friend of Cheryl’s from church organized another luncheon with her and another mutual friend today.
Back in the bygone days of younger kiddos and the everyday working world, Cheryl was part of the group of women (mostly) who decorated the church for various holy days or other events in the church calendar. Often Cheryl’s job was to clean and press and arrange the alter cloths just so. The group would spend an evening or Saturday decorating the church for the occasion.
These days are gone for her and the decorating committee and St. Ann’s sodality has thinned over the years. Today however Cheryl and Barb are hooking up with Diana, the team leader, who has moved to a retirement community with her husband on the other side of town.
It gave me time to experiment with banana bread and fool around with other things. Maybe even blog a little.
Carpe Diem.
Worsening Dementia
The dementia aspect that can occur with Parkinson’s disease seems to be worsening each day. Some of that can be combated with a good night’s sleep. Lately we have not been getting the eight or nine recommended by the experts.
Last evening – actually early morning – was tough.
Carpe Diem.
More AHA Moments – Boats
Cheryl told me she is scared to be on her brother’s boat.
Recently Cheryl’s youngest brother invited her and the rest of her living clan and clan-in-laws for an evening ride on his pontoon boat that he moors in a small man made lake near his home in southern Indiana. I am always on the hunt for things to do with her that let her socialize a bit out of and away from our little condominium living situation.
Since Ken’s text message came to me on the family text chat, I told her what he proposed. Cheryl responded with, “I will think about it.” This is a phrase that she learned from her mother as a small child and she has used throughout our fifty years of marriage and many times during our child rearing years. Roughly translated it means “NO” or “no thank you.” But being the polite person that she is, she does not want to hurt anyone’s feelings, she rarely says no directly. (She also learned this from her mom.)
Cheryl has a lot of her mother’s traits. She does not want to put anyone out. She does not want to offend anyone. She can be angry with me as could her mother when she thinks that is appropriate, as when I am being pushy. She does not want anyone to stifle their good time by worrying about her welfare. She is okay with isolating herself to (her perception) benefit others. She enjoys the presence of small children even if the small children are unsatisfied and complaining about it. She enjoys the presence of big children and wants to be a part of their life even if the big children are uninterested in letting her in. She likes big family gatherings.
Most recently she has a new special Parkinson’s patient walker to help her move around with steadiness. After her appointment with her MDS neurologist on her birthday several days ago, I ordered this for her. In the picture is her new U-Step. I should have gained my AHA here since I just ordered this over the phone three days ago. (I am buying her a stabilized walker and suggesting we go on a boat that will wobble every time someone moves.)
But, getting back on track, she said to me that she is scared to be on Ken’s boat. That is the first time she has ever expressed that to me.
AHA MOMENT – Occasionally these pop up and I cannot always understand her needs. Prescience is not a strong trait of mine. But imagine for a minute, here is a person with balance issues and I am promoting going on to a less stable surface than she is used to. She can lose her balance and fall backwards when changing positions in our living room. Our building is built on a slab. It is hard to get a more stable surface. AHA (you moron).
Ken caught on pretty quick and proposed dinner tonight on the deck at Willie’s restaurant next to the puddle (his term for the man made lake.) Tonight is anything goes pizza Tuesday. Willie’s fits into the anything goes part of pizza Tuesday.
We will go tonight and take the new walker for practice and hopefully greater stability.
Carpe Diem.
…
Friday the Thirteenth
Friday the 13th comes on Friday this month. It is a little joke I have. An old boss of mine during my working career who is also a good friend used to make that comment when it was appropriate. It seemed to him that mystery problems would appear on Friday the 13th. Engineers love and hate mysteries.
A friend of Cheryl’s came to take her to lunch today.
I am waiting to see how it turns out. Barb is aware of Cheryl’s issues but we often only see her at church. Cheryl will have a chance to practice her “showtime” persona.
The lunch was great. Cheryl had a great time with a good friend and she brought home leftovers that she may or may not want to eat. The went to a Asian restaurant called the Blue Gibbon. Typically when we go to a Chinese or Asian restaurant she will order egg rolls. Nothing else for her, she only wants egg rolls which the restaurant people want to bring as an appetizer. No amount of english, american english, spoken to a person whose first language is not English can convey the meaning of “bring as her meal”.
The last time we went out to dinner at a Chinese restaurant (Uncle Yip’s) I ordered her egg rolls, some spring rolls for me and another dish that I like and I thought she would like. We had tea. The waiter brought the the egg rolls,spring rolls and asked if we needed more tea. Later he brought our shared dish. It worked out just fine. She was not embarrassed to eat ahead of me and she did eat a little of what I had ordered to share. The smart waiter brought us extra plates.
Uncle Yip’s, by the way, is the closest thing to actual Chinese cuisine that I have found so far. I visited China about ten years ago for business. And the owner’s and wait staff’s first language is not English.
Carpe Diem.
Sideways Conversations
Cheryl will start to tell a story about an incident that occurred earlier to me as though I am someone else. In the story she will refer to me in the third person as “your dad.” I think that she thinks I am one of our children but I could merely be a nice someone with her because sometimes she refers to me as “Paul.”
I used to resist this a bit and point out that I was me. Lately I quit doing that. I quit doing it because it aids me in finding where she is in her head and it serves no useful purpose other than to make me right and her wrong.
Typically it is a late afternoon discussion as we head somewhere for dinner. In the car she will start with, ” you know your dad and I …” After she gets her thought out I can respond with, “No kidding, I didn’t know that” or some other suitably benign response. If there is more to the story she will go on.
There is so much to learn on this road of Parkinson. If you have not tried it, take a deep breath, enjoy the ride, the scenery and the stories along the way. You cannot be sure of the weather, road conditions or the vistas ahead. Be one with the journey.
Carpe Diem.
More about Dementia
We Danced Last Night
Last evening after dinner we danced for a bit.
Cheryl was going through a bit of confusion as I put dinner on the table. She kept getting up to look for her deceased sister Janice. (She called her Janice instead of “Jan.”) Eventually she was satisfied that Jan was not here to eat with us. She became interested in food and ate what I had cooked. (Chicken, noodles, green beans and broccoli)
I had put some music on the radio to play quietly while we were eating. Jimmy Buffet and “Margaritaville” came on when we were finished with the meal. I asked her if she wanted to dance. She said yes. We did.
For a few minutes we were young at a dance with Jimmy Buffet. Our dancing these days is more of a swaying-in-place but it is fun anyway.
Carpe Diem.
For the First Time
For the first time today I started researching and thinking about palliative care for Cheryl.
Her mind seems to be disintegrating right before my eyes. I hope I am wrong but I also do not want her to suffer in confusion. It is a strange time in our lives.
I suppose my heart is broken. I am very worried for our future.
Perhaps all she needs is a meds adjustment.
We see her neurologist today.
This picture of two people in silhouette I use to show a life’s journey. These two are looking into the sunset as are we.
Adjunct_Wizard 