caregiving

It is Strange

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Yesterday I looked at my notebook and realized I had written little in my journal for several days. I pondered the fact that things seem to smooth out for a bit. Usually it is a long enough bit that one can be lulled into the idea that things are changing. Things are changing for the better.

And then,

Stuff that lost your attention falls in the dumpster.

Last night after Cheryl’s previous night of reasonably good sleep stayed awake all night.

Today will be a long one. She will be tired all day. So will I.

Carpe Diem, dammit!

Remarkably Quiet

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The past couple weeks have been remarkably quiet.

I am either becoming used to the odd late night behaviors and reacting to them in a calm sane fashion or they are simply unremarkable to me and seem commonplace.

At the very least I should be thankful to the Almighty that we are in a place that does not drive me to my blog to write about and discern my own feelings and emotions.

At various points in our lives I imagine many of us feel this way. As summer approaches it is time to slow down and enjoy the world’s awakening.

One grand daughter is graduated from university and is on a long awaited tour of England, France and Italy. Cheryl’s sister is off to Italy with her gentleman friend Gene. Another grand daughter graduates from high school in a few days. Our daughter’s family is enjoying their new boat on this bright sunny May Sunday afternoon. Cheryl’s brother is on his boat. He posted a picture this morning on Facebook.

Cheryl seemed to have slept well. I made her current favorite breakfast of scrambled eggs and bacon with grape jelly toast. She seems to be getting up later as time goes on.

Today we will take a walk somewhere in the sunshine.

Carpe Diem.

Happy Birthday, Cheryl

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Today is Cheryl’s birthday. She is not sure how old she is and that is a good thing in many aspects. When I remind her, her answer is, “Really?”

Tonight we will go to dinner to celebrate. It was a spontaneous decision on my part. Some of her family will come too. With parkie’s many decisions are spontaneous. One has to determine how the day is going.

Her sister Nancy sent her some spontaneous flowers. Our niece, Natalie, brought them with her when she came to clean our condo today.

Spontaneity is the spice of life and living in the moment is something we all need to do more often.

Carpe Diem!

And Happy Birthday!

Sibs Dinner

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Cheryl and I gathered last night at a place on a little river nearby with most of her brothers and sisters to celebrate nothing in particular. They just wanted to be together for a bit and share dinner.

The conversation swirled around Cheryl and a small child in the next room was testing her lungs on the building acoustical characteristics by screaming. She was probably about three years old and comfortable in her own skin. No one was scolding her.

Tari had her bluetooth cicada stuck in her ear in case there was an emergency and drank a very white pina colada. (I always saw them as yellow sometimes pink if they had a maraschino cherry garnish.) I put my cheap cellphone on the table in anticipation of Cheryl’s 7PM medication but forgot to check if the alarm was set. Nancy has gotten Gene to drink amaretto sours which is the only thing she will drink other than water. Gene usually drinks only water. Cheryl had a Pepsi because they did not have Coca Cola. Ken ordered a Captain and Sprite which I suppose is another Pepsi product. Jill drank water no ice. I had a dark colored Budweiser tasting beer (beir) on tap brewed locally by some mystery brewer specially for this restaurant. It was okay bier.

The food was excellent. The Deutsche themed restaurant offered schnitzel which I have not had for some time. Kartopfelpfannkuchen came with it. I ordered that. It was perfect. Cheryl ordered chicken tenders with the signature bourbon barbecue sauce, broccoli and apple sauce. She ate most of it which meant she both liked it and she was hungry. Barbecue chicken of some sort was the majority dish for the rest of the table. Others had a rib-eye steak and chicken cordon bleu. Those decisions made the conversation continued loudly. Cheryl had her parkie voice on which is very quiet.

The room was decorated with models of tanks and other weapons of war. Above the two marines in the front window there hung a bazooka the nemesis of tank warfare. It did not appear loaded. The current Abrams (M1) tank did not have a model present as did not the Bradley fighting vehicle. I think there was a Patton on display.

This is the sort of gathering that Cheryl’s mother Elaine would have enjoyed and as we were driving away it became apparent that Elaine had been there. She began to worry that her mom would not get home. That was our job most of the time when her mom was still alive. I assured her that her mom was where she lived now and would not need a ride. Cheryl reminded herself that her mom had passed onto another plane.

When we got home we watched TV for a bit and as it got closer to bedtime and she was more tired, she was also more confused. We talked some more about Elaine and as she remembered that her mom was in heaven, she asked, “Was there a funeral?” I replied, yes. Do you not remember? No, I do not she told me. So I started down the road of jogging her memory. Nancy got up and read a wonderful eulogy about your mom. Do you remember? Oh yes I remember that now. She talked about Bob and Mom. (Nancy did not but did a very respectable job of eulogizing her mom.) It is hard to keep calm and composed when your parkie wife wanders off into the memorial weeds. I merely acknowledged that and reminded her that we had a little luncheon in St. Clement’s lunch area. She remembered that pretty well.

She calmed down and called our son Scott with the news that we were home downstairs of grandma. After she finished her call with Scott she asked, “Is grandma not upstairs?” Her thoughts will bounce around for awhile after a big group gathering. She eventually remembered that her grandmother had passed away but became anxious for a bit that she could not remember any of it. Her grandmother’s funeral was early in our married years. I could not help her remember but we did settle on her calling her cousin Barb to find out what happened to grandma Moeller. (Today as I write this I notice that any and all of that anxiety is gone.)

Trying to keep up with conversation with her siblings is exhausting for her. They are catching up and joking around. This activity takes her back to her childhood and young adulthood. The small child screaming at random intervals seemed to add a nuance of grandchild. Her mom was there too. She was in the house on Phillips Avenue and we went home downstairs to where Aunt Jean lived. These were confusing thought patterns.

And eventually we both went to sleep.

Today after I took her to exercise class, Cheryl ate the leftovers that she brought home for lunch . She suggested that we go back there for dinner or lunch again. We will. They have food that Cheryl likes. Suggesting that we go back is a big endorsement from Cheryl.

I might get a different bier though.

Sadly this room was decorated with weapons of war or krieg as the Germans would say. All in all a good family visit.

Carpe the schnitzel Diem.

Seated Cardio Classes

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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.

Serendipity

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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

Photo by Kasumi Loffler on Pexels.com

Cheryl only likes pepperoni on her pizza but last night was a bruschetta night.

Let Conversation Flow

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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.

  1. A UC Health article shows in a new trial, led by Dr. Espay, says that drugs delivered continuously through a pump was more effective at controlling symptoms of Parkinson’s disease without causing dyskinesia. Also, over a three month trial period, patients receiving ND0612 had 1.73 more hours of daily “On Time”. Does anyone have additional information about this?
  1. What are some fun activities for Parkinson’s Patients?
  1. What are some positive coping mechanisms for managing Parkinson’s Disease?
  1. What are some important goals for caregivers to have in caring for a Parkinson’s Patient?
  1. Can you name any other ways to improve the quality of life of a Parkinson’s Patient?
  1. How can a person with Parkinson’s Disease cope with depression and/or anxiety?
  1. Have you, as a Parkinson’s disease patient, made any adaptations to your diet that have helped you in any way physically and/or mentally?

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.

Inspiration, Thoughts and Ideas

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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

Sometimes In The Evening

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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.

So Much is Repetitive

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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.