Jan? Jan? (me – what?) Do the doctors know if this Cesarean is scheduled or not? (me- I don’t know. I’m sure they will do what’s necessary. Try to get some sleep.) Okay. Wake me when it’s done.
Early morning as well as late evening conversations can be odd sometimes. This one from last night as she was falling asleep stuck with me.
The image is from Forbes.
Carpe Diem
Cheryl really enjoys these classes when I can get her moving quickly enough to get there. Joelle leads a cardio (seated) that involves a lot of dance moves (shoop, shoop) and alternately boxing moves in time to the music.
Unfortunately I had the sound off when I made this video the other day. The rest of the staff joined in as background dancers.
Parkinson Community Fitness – check it out if you are in Cincinnati, Ohio.
One of our regular social gatherings is Pizza Tuesday. (Yes, I know it is supposed to be taco Tuesday.) Most times it is just a few of us, maybe 3 or 4. Occasionally Cheryl’s brothers and sister show up. Last evening in a moment of serendipity her cousin and many of his family showed up to celebrate their father’s birthday. Cheryl got a hug from her cousin that she really has not talked to for years.
Bob’s second wife died about a year ago and I took her to the funeral mass. We did not stay for the gathering after because Cheryl was not doing well that day.
Cheryl did not talk much to Bob. For one thing he was there to celebrate with his family in the big front room. For another although he may know of Cheryl’s on going battle with parkinson and dementia, he may not know how long it takes for her to get a thought out. Sometimes her thought is gone before she can vocalize it. I have been watching this for years. At home I merely wait.
Others have a hard time waiting so they want to guess what she is trying to say. Forming thoughts and then assembling complete sentences, keeping track of any names that need insertion is a hard task for Cheryl these days. I only help when I am very sure of who or what she is talking about and even then I can be wrong. Parkies can change topics in a heartbeat.
Last evening, however, was special and when we got home she wanted to do two things. Get Bob’s telephone number so she could call him and talk. And sit outside for awhile and watch the clouds go by to expose the moon and the planets. Venus is very bright and the moon is several days past its crescent phase. Watching the night sky lately seems peaceful for her.
I asked her siblings for Bob’s phone number. She now has his phone number for when she wants to call him.
As we left the restaurant her brother, as he often does, said to me thank you for taking care of my sister. My inner thought to him is I love her dearly and we made a vow to each other fifty years ago. What I say to him is “you’re welcome” and that bothers me sometimes. Some day I will pour my heart out to him. He is a good and kind man.
Carpe pizza Tuesday Diem
Cheryl only likes pepperoni on her pizza but last night was a bruschetta night.
Cheryl delights in getting phone calls from people. It is a simple way for people to talk to each other on a direct basis. It is not a public conversation like so many on Facebook. Cheryl does not understand Facebook. You say to yourself- what is there to understand. Exactly. Now you know where her mind is.
About a year ago I wrote a long letter to her brothers and sisters in the hope of one or several of them would occasionally call Cheryl on the phone. Perhaps it was too subtle of me to suggest that they could do that in amongst a long list of other things that could and would help her to stay connected. They are not as communicative as I had hoped.
Cheryl, however, is always hopeful. When we return from anywhere – literally anywhere – she always wants to check for messages. She does this even though she is unable to remember how to do that. We still have a “landline” although it is no longer connected to the land. I keep it to give the robocallers something to do. Sometime this nice man in India (or Pakistan) who claims to be Mike with Medicare calls. He rarely leaves a message but once in awhile a real person does like my brother-in-law in Florida or a friend of Cheryl’s who does not understand her plight and still calls on the sort of landline. I can check for messages on my computer by logging into my Spectrum account. I suppose that is too much technology but I like it.
I think I miss the days when the phone was a phone. I think I miss phone books too. It was easier to track down folks that you had not talked to for some time. A method to reconnect was in the phone book. People who did not need connection had their phones unlisted. The roboes did not call as much then.
We used to have dumb phones. Now the phones that everyone carries around are small hand held computers that people rarely talk on. Many seem afraid that we will miss something. My sister-in-law walks around with a single inexpensive earbud in her ear that looks like a cicada in case someone calls. Maybe she is a secret telemarketer like Mike from Medicare.
When I was still working as an engineer, if I was talking to someone in my office, I did not answer the phone on my desk. Once one of the technicians and I were discussing a problem we were having with a machine and the phone rang – with an actual bell. I ignored it and he said – aren’t you going to answer that? My response was – not right now. You and I are working. If it is important they will leave a message or call back. He seemed bemused that I did not answer it right away. Others I knew would and if I needed to talk I called them on the phone even if they were in the next cubicle.
Many broadcast messages on Facebook and twitter and tiktok etc. I think that is like trying to find information in a noisy pub. It takes time to narrow down the source and then details may not be initially forthcoming. You might have to shout your question in a pub – you might have to ask your question in public on social media. It is possible to get an answer from a totally disinterested party. Who needs that?
Call Cheryl on the phone. She really enjoys conversing even though she is not good at it anymore. Be patient. She may really have a hard time finding words. Keeping connected with others is important to parkies and care partners. It gets lonely sometimes on the road. Conversation is crucial to good mental health.
Carpe (the land line) Diem
Sparingly. Although it does amuse me. Mostly. My immediate life is not driven by my need to read social media posts. I am old I guess. It is much more fun to sit with friends and family, have a beer or soft drink and chat. Face to face. Mano a mano. In close proximity. Body language is part of communication. Social media has managed to strip away everything other than the words.
Words have nuance.
On the third Monday evening of each month we gather at the Parkinson Community Fitness facility for our support group meeting. Support groups are not for everyone. I would probably not go if it was left up to me. (I am smiling.) As this disease has taken over I realize that sometimes I just want to listen to other people’s stories. I want to hear what they are interested in. I want to let them tell me what their concerns are. I have to resist telling them how to fix it long enough to discover how they solved that problem or overcame that obstacle. It is part of my personality to jump in with a solution. If I resist the temptation long enough, I learn things. Dad said to me a long time ago that you need to listen to the other guy even if you think he is a jerk because he might have a good idea. I took that to heart and remember it. It was during my early working career. Do not let personalities get in the way of good ideas.
Do not let personalities get in the way of conversation. Little snippets of intimate knowledge and deep personal beliefs and fears emerge in between comments. Listen carefully. Many people are not very guarded in their speech. Many will become comfortable and reveal small but important details that might not be spoken out loud in another venue.
Our group always starts with a list conversation starters. We are not that good. There are plenty of support group resource materials. We always select too many and often use few or none. For our Monday meeting we used these seven.
Our group is a joint group. Some have Parkinson. Some are care partners. Last evening one of the group members needed to talk about her recent experience as caregiver to her husband of many years. They recently changed doctors. (It is important to find a doctor that you trust in.) During the doctor’s initial evaluation, the great ones do not accept what is written in previous records from others, which was supposed to last for two hours, her husband experienced some odd symptoms which extended the visit by several hours. Tests were done. After a team evaluation it was determined that his meds and dosage were incorrect. These were changed and in her words, he is like the man I married again. In a support group environment let the members speak about their concerns at the present regardless of the list of conversation starters that was sent prior to the meeting.
The second topic – fun ideas – produced a long list of activities. We can save the rest for later. Sometimes it is necessary to simply talk to a group that empathizes with your situation in life.
Carpe Diem.
As we progress down the sad road of Parkinson and intermingled dementia I am always looking for ways to help Cheryl or get help for her and me. This web blog by Cheryl Hughes is and has been a source and an inspiration to me.
For the past few days as Cheryl has struggled through various mental clouds I have begun to ask about and look for trusted home health services. She is coming off of a UTI which I am getting pretty good at recognizing just by behavior. Some sort of mild sleep disturbing cough (thankfully not Covid related) has messed with sleep cycles for her and me. All of that is easing as the antibiotics have been used up. We are slowly drifting into our weekly sameness.
The past week of April has been beautiful in Ohio. On Tuesday I road my Rad City bike out of our drive onto the public roads. This is something that I have spent the winter gathering the courage to do. I rode around late morning to early afternoon on residential streets near me so that I did not have to deal with rush hour frantic antics. I greatly enjoyed my ride and although it was not long I realized that I was relaxed when I returned. My cousin-in-law was sitting in the kitchen with Cheryl having lunch and I was pleasantly fatigued.
It is time for me to get some consistent considerate help. It will cost money but there is that story about camels and needles that reminds me of my real responsibilities. Financially rich is not a good description of us but I am acutely aware that Cheryl’s care will cost more as time goes on. I may be too concerned about that but it is something I think about often.
Cheryl Hughes has pointed me to DailyCaring.com which is now sending me email newsletters. This website may prove invaluable as I try to learn more about helping Cheryl. Other friends have pointed me to a home care group that I will contact in the coming week to get established.
Carpe Diem
What are 5 everyday things that bring you happiness?
Coffee freshly brewed. Bread freshly baked. Wordle solved. Quordle solved. Love of my life slept through the night peacefully.
Late in the evening when I am able to sit quietly and think about where we are with this parkinson thing I start to realize how it is affecting me. I ponder and think about how it is affecting her. Self -doubt pursues me everywhere.
As Cheryl’s confusion and memory lost develop into her dementia, I wonder if she is aware of her disability. I wonder if she knows about what is going on around her. I wonder is if she is scared. I know it scares me. She has always been self reliant. She often resists help. She makes me feel intrusive and yet I know her mind is awash in confusion. (Do I actually know that? Is that a misconception?)
Yesterday we had lunch with our daughter and talked about their family’s planned trip to Florida. We talked about the logistics of getting six differing schedules aligned for a family vacation. I thought it might be nice to go to there with them. I held Cheryl’s hand and asked her if she would like to do that. She was reluctant but interested in visiting with other family. (If we went along would we be a burden to Anna’s family and their time off vacationing together?)
My daughter pointed out to me that I keep track of Cheryl’s health like a hawk. She asked if I was keeping track of my own health. I think I am. But when I drift into deep discernment, meditation, prayer and thought, I am unsure. I think back to times when Cheryl and I went off together somewhere sometimes for a week or so, sometimes with friends we met up with, sometimes for a weekend alone with just us to entertain each other. Once Cheryl planned a special surprise for my birthday, all the kids and grandkids showed up – it was a well kept secret. These are all wonderful memories and it makes me long for those times. I makes me attracted to the idea of vacationing.
I think Anna was trying to tell me that a vacation would be good. I agree with that thought and in this part of my life and our marriage it would be useful if I was able to get away from the day to day care for Cheryl. Maybe it is time to give that away and return to simply being a husband.
A vacation from caring seems attractive.
As I write this and think about that aspect it lifts my heart. Worry and anxiety are easier to bear if there is occasional relief. I think I need to work on that sort of relief.
It is late in the morning now and she is gently snoring in the bedroom. This is one of those days when the day just seems to be slipping away. I begin to worry that she may not sleep tonight. I wonder how a professional caregiver would respond. I talked to her earlier when I put her meds in the bathroom for later. As I sat on the edge of the bed and comforted her a bit she fell asleep, so, I got up and left her to rest some more.
I am not surprised that she is sleeping late. Although she did not disturb me overnight I think she slept fitfully. I slept my normal get up to go to the bathroom every 2-3 hours. Occasionally she was whispering a list of people out loud as she thought through the planning of a family reunion style gathering that our sister-in-law has taken over but Cheryl cannot let go of in her mind. No amount of “Tari is handling that” relieves her from thinking about logistics. I often hope that Tari will spontaneously call and talk about it but I recognize that she probably will not. (I sent her a text message and requested her to call Cheryl. I will wait and see if she does.)
I mentioned – return to simply being a husband. I big part of that idea is not doing Cheryl’s things for her.
Many things wander through my thoughts as I checked on Cheryl again and got cleaned up, brushed my teeth (now the coffee tastes funny) and put on clothes for the day. I can hear my mother’s voice as she told me years ago, “I do some of my best sleeping in the morning.” When Mom was still alive if I visited her before noon, she might be just barely awake. Once or twice I made her breakfast and sat with her for awhile. I start seeing that happen with my wife. (I suppose I do not want that for us. I want us to be young and vibrant or, at least, think we are.)
I know that she wants to go to church services tonight. It is just before Easter. Easter is a big deal for Cheryl. She has been talking about coloring eggs for several weeks. I have extra eggs in case I cannot get out of doing that. It is getting late, so, as a husband I will get her up and listen to the complaint while I do that.
She is up now at 11 AM. I made her favorite breakfast of scrambled eggs and bacon with grape jelly toast. She told me that after she was done with breakfast she wanted to lie down again.
Carpe Diem.
A few minutes ago she asked me, “Are you alright?” She is having a really slow day.
She did not sleep well. Stayed up “reading” until 12:30 – 12:45 AM. Jumped back out of bed at 3 AM after having soaked the bed in an incontinence episode that has not happened for quite awhile. After changing everything and everyone we got back to bed. I woke up at 7 AM or so. It is not an unfamiliar episode.
I got her up about 9:30 AM. We had planned to go out to lunch with a friend of hers but her friend is not feeling well and canceled.
By 10:30 AM Cheryl was no longer in a hurry to get dressed and moving. She took a shower. And the world slowed down.
I listened to a podcast called – “When Life Gives You Parkinson’s.” Now I want to find a chemical manufacturer and kick his ass. Or maybe a dry cleaner and do the same thing. Idiopathic my ass. Crap on a crutch. What are we doing to ourselves?
So, at 1 PM after I had gotten her a snack and her glasses and after she was telling me about some apparitional animal outside the back window and I was staring off into space with my thoughts about our future and my worry about getting more care for her she became suddenly lucid and asked, “Are you alright?” I replied, “yes, I am fine.”
That was a baldfaced lie. Pretty soon today I will take her to an ENT doctor to be sure that her hearing problems of late are not simply due to wax or some other problem.
No I am not okay. I worry more and more about how I can care for her. I have a call in to a social worker associated with her neurologist group.I need to talk about this to someone who might give me some guidance.
My heart is broken right now and I am tired. And just maybe I need a good night’s sleep. Little small steps are in the offing. It is scary.
Carpe Diem.
Adjunct_Wizard 