Unselfish Care

A Little Surpising and Harrowing

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Parkinson is full of surpises.

Many maybe all of these surprises are attached in some form to the various meds used to stave off the effects of the disease. Many of these surpises are not Parkinson at all.

Cheryl falls over upon occasion and those occasions seem to be increasing in frequency. She always falls backwards. Always is a strong adverb simply by being superlative. Every time I have witnessed her fall it has been backwards. When she gets up from a chair and I encourage her to lean forward to put her upper body weight over her toes (nose over toes) she will only do that for the first short motion of standing her next thought is to lean backwards while pushing on the chair. She is afraid to commit to the motion of standing. There is nothing I can do to help. I will ask her if I can help. her usual answer is “No I think I can do it.”

No-I-think-I-can-do-it often causes conflict. Two things tug against each other my unwillingness to allow her to suffer in silence is pitted against her unwillingness to recognize she needs help in some situations or her unwillingness to give in to the handicapping disease. That is one third of her physical surprises – balance issues.

The other two thirds are urinary and digestive issues. Urinary issues are mainly overnight incontinance and a constant fear of daytime incontinance. This last is exacerbated by the inability to easily stand from a chair and her unwillingness to ask for help when her bladder reports to her brain that it needs to be emptied immediately.

Digestive issues are both physical – constipation and indigestion and mental – as in making menu choices or answering “What would like for dinner, dear?”

Parkinson is a complicated disease and that is complicated by the many this-will-cure-you charlatans out there providing help to the parkies who need it and would desparately like to be cured. Many charlatans are not on-purpose charlatans (I am willing to give them the benefit of the doubt), they merely have strong beliefs in something that has worked for them. Parkinson is not hopeless by any sense but it is degenerative. It is complicated. It requires more than a PhD from the university of Google to solve.

Hopeful

Carpe Diem

Today is Odd

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But I am glad it is over with.

Cheryl woke up super early for her these days. She was awake a little after seven this morning. I have to admit that I was a little disappointed because she had been awakening at 9 am or so. I began to treasure those first couple of hours from about 6:30 am until 8:30 am or so. Those are mine to do whatever I want to. Do the Wordle, chair yoga for old people, Quordle, blog a bit or think about life and drink some coffee. It is my time. I would check her and listen for her gentle snoring from the living area while I read or watched the early morning news shows. It was my time so when she was awake when I came by her side of the bed, I was disappointed and also elated that she was awake.

Early after she had a bowl of cereal for breakfast she had a short bout of diarrhea. Not a serious issue and as she typically is constipated as are others with Parkinson in many ways it was a welcome change. Not the loose bowels but the relief coming with movement. It made me want to figure out what she had eaten the day before to occasionally fit that into her diet.

The whole episode which I handled badly, got both of us upset. There seems to be no gentle way to clean her backside while she is struggling with balance issues. She kept complaining I was hurting her while I intended to be thorough all the time I was thinking about UTI’s, so, I complained right back to her about holding still. I apologized profusely afterwards.

After this episode in the front bathroom she went to the big bathroom to get further cleaned up. I suggested that she take a shower to top off my handiwork. I should have kept my mouth shut. She might have showered if I had not mentioned it. But I did not keep my mouth shut. Alas.

I left her to do her thing unaided. She actually was moving pretty good and seemed fairly stable. I checked on her about an hour later and she was dressed.

When I came into the bedroom though she reported that there was a bird flying around the condo. She had been chasing around the room. I told her that whatever she did it must have worked because I did not see the bird anymore. (I may not have told her that in a calming voice. I get nervous and upset when she is seeing things.)

The rest of the day was filled with wandering demented conversation about nothing. Occasionally she spoke about her childhood memories. She wanted to talk to her Aunt Jean and at one point carried on a conversation out loud with her deceased sister Janice’s picture. She said she wanted to talk to her mom and I suggested that we visit the cemetery.

We left to visit the cemetery. During the ride to the graveyard a discussion of George Ward and where he is buried ensued. George is a friend that I went to college with 50 years ago and he passed away maybe 15 or 20 years ago. He married a friend of Cheryl’s who we still have lunch with every few weeks. There is no telling where that thought originated in her head. It just pops up as do many odd and off-the-wall thoughts.

Back home before we went out to eat, I asked her a question about food and she told me two people were talking (in her head) so she could not hear what I said to her.

As I backed away from the garage and lowered the door she told me that the little girls in the garage were upset to be left there in the dark. I lied and told her the light would stay on after the door was down. The girls would be safe there while we ate at the restaurant.

How do I feel?

Exhausted. Carpe Diem.

The Day You Are Born and The Day You find out Why

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The two most important days in your life are these two days.

I was watching a piece on the Sunday morning news magazine about a man who studies burrowing owls out west. He made the comment that I used for the title.

Makes one think. I have been thinking about it all day.

I have written many times before that I think my purpose for existing is to take care of Cheryl. I imagine that thought is prevalent in any long marriage relationship. We are partners. These days she needs a little more help than she did a year ago.

Many years ago I was the one who needed a little more help than I needed a year previous.

It is a partnership.

Carpe Diem.

Longing

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Last night when I came to bed Cheryl was still awake. I asked like I always do if all was well. She replied that yes she was okay. She said, “I was thinking about Mom.”

“What were you you thinking?”, I asked.

” I miss talking to her.”

It was an incredibly lucid moment of which there are fewer and fewer. We talked for a bit about our mothers. She missed Elaine in that moment but she was not sad. She was thoughtful. Elaine is very present to her. Most days Cheryl wants to call her and tell her about what is going on. When we go somewhere, Cheryl wants to make sure someone is attending to her mom’s needs.

Day Three

I suppose that time for relaxation and thinking and memories of her childhood and past good times bubble up in her thoughts when she lets go of control for a bit. Last night was one of those. She was not upset. If anything she was relaxed and pleasantly fatigued from the day’s activities.

Lately I have been giving her a chance to talk about her thoughts as she goes to bed. If I read for awhile before coming to bed and she is still awake I encourage her to tell me what she is thinking about. Sometimes many anxieties are jumbled up in her head. Sometimes, like last night, she is thinking pleasant thoughts. Sometimes she longs for Auld Angsine. (Sp?)

The crabcakes were good and it was breezy on the pier. The shore birds where grabbing any of the small bait fish that they could find.

Today is a new day.

Carpe Diem.

Heart and Hater

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This morning after I finished my old people chair yoga and relaxed for a bit in the morning quiet with the daily Wordle, I found that four of the five letters were contained in my search for vowel words. Those four letters led me to guess heart which contains all the letters but in the wrong order. The correct answer is hater.

It stuck me as sad that hater is an anagram of heart. These are two very different emotions.

In other news stories over the weekend a gentleman expressed chagrin at the failure of smaller local newspapers. His point was that lack of local fourth estate oversight allows corruption to creep into local government and institutions. The national news organizations will fill the gap but never tell the local story. National issues, although real, affect little in our local lives but tend to polarize our conversation. There is support for this in my home town of Cincinnati.

Indeed the last of the local newspapers, the Enquirer, is a sort of ghost paper. It is part of the USA Today paper equivalent of cable news. The sports section is often more pages than the rest of the paper. Whether it it is causation or merely correlation is probably unknown without more study. Nevertheless three city council folks fell prey to the lure of really fine campaign donations by developers vying for attention. It is sad really. And no doubt these folks thought that they were helping the community. No local news hounds were asking those embarrassing questions that make public figures think about issues in a different light.

Heart versus hater.

The combination of Parkinson and Lewey body dementia some times combines to embarrass Cheryl in the most private of ways. I hate the diseases and what has been taken from her. My heart goes out to her and wishes to save her from any embarrassing moments. Often I fail. No amount of planning for contingencies can prevent every disaster. Incontinence issues can be a disaster or a merely a learning experience. I can be a disease hater and take heart as I help her through it. I have learned to not hate myself for missing things that in retrospect seem obvious should have been planned for things. React and respond.

As Cheryl often reminds me, it’s an adventure. It is! I can hope that she will give me a hint that she needs extra help sometimes but I realize that it is not part of her persona to do so. She was raised to not be a burden and no amount for talking from me will convince her that to me she is not burden. I gave her my heart almost sixty years ago and she is still very private. I feel intrusive when I help her probably because I do it without her permission. I can not stand to watch her struggle. We are too close. I am too much in love with her to do otherwise. Occasionally it causes conflict.

I often write Carpe Diem.  More importantly seize every opportunity to learn and grow.

Our little trip to Florida provides many of those. It is an adventure. It is an opportunity to grow. It swells your heart. I feel any hateful feelings for the disease dissipate for now.

Onward. Carpe Diem.

Changes are So Slow

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Today as I encouraged Cheryl to wake up and get out of bed it occurs to me that the changes are very slow. This morning is very different. It is hard to recover from a night of little or no sleep.

Yesterday she was awake very early simply because she had not slept overnight. I was not awake overnight to observe her but I get up two or three times to use the toilet. I long for the days when my bladder could contain my overnight urine output until morning but alas those days are gone. (I have digressed.) Each time I made this trip she was awake and talking to me. As I attempted to fall asleep, she squirmed as she attempted sleep. Each time I woke up she was in a different position. It suffices to say she slept little overnight.

Yesterday she was delusional and hallucinal and those experiences went to talking to her mother, my mother, seeing our two sons around, seeing her deceased sister and our smallest grandchild, Zachary.

Yesterday evening was my regularly scheduled meeting with friends. We formed a stock club many years ago and we enjoy a few beers and talk about various get-rich-quick schemes as well as attempting to discover the next Walmart or Amazon. It is a satisfying evening for me and our son Scott comes over to hang with Mom for a couple hours.

We had a gift for our newest high school graduate so I enticed our son David to stop by and pick it up. As I was texting David and working out the details Cheryl wondered aloud if Scott was bringing Zachary with him. I texted Scott with that request.

Our daughter-in-law brought Zachary over after he had been fed at home. Scott came at the usual time to hang for awhile. And David came by for a few minutes to pick up the gift and chat with Cheryl for a few minutes. I left for my meeting.

She saw them all in reality instead of inside her head.

Afterward she went to bed and although she was awake when I returned from turning off the lights and reading for a bit she fell asleep shortly thereafter.

Today she really had a hard time getting started. I rolled her, she has a new transfer chair, to breakfast after getting her on and back off of the toilet. She ate scrammed eggs, toast, bacon and some orange juice. She has started reading the Wall Street Journal to which I subscribe. (Getting rich quick is still strong in me.) She likes the editorial pages. I rolled her back to the bedroom afterward and now I hear her moving around selecting her clothes for today.

Carpe Diem.

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

Dog, Cup, Rainbow

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Like many old retired folks we have a Medicare advantage plan. When I investigated these a few years age I came to the conclusion that the United Healthcare plans offered through AARP seemed to be appropriate for our needs. There have been several adjustments and realignments over the past several years and I am not in any way an insurance expert but so far the system has worked for us. United Healthcare has a feature that sends a nurse practitioner once a year to visit to check their clients if they want to participate. Participation is voluntary. Cynical me wonders what benefit the insurance company receives from visiting it clients but practical me says there is some benefit otherwise they would have no reason to pay a skilled NP to drive around the countryside to visit clients. There is no altruism in corporate america. I agreed to a visit by Whitney on Thursday of this week.

UHC Housecalls (Whitney) came to visit that day. We went through all the medications that Cheryl takes for Parkinson and my few meds for high cholesterol and too much eyeball pressure. There is a modified MOCA test – draw a clock, remember three words while drawing the clock. The normal blood pressure, heart rate and lung listening happens as in any wellness visit. There is also a clip on gadget and an app that runs on Whitney’s laptop that produces circulation information. Good news we are both alive! And one of us could remember the three words.

In addition to Whitney coming to visit, so did Nancy, a friend of Cheryl’s from church. In fact Cheryl has had a different someone come to visit every day this week. It has been busy and that tires her out.

Cheryl was showing signs of exhaustion on Wednesday. In the evening about 11:30 pm she needed to go home. I was heartbroken that night and tired myself from the time change. The impostor (Capgras) delusion seems to appear about once every two weeks. I put her in the car and drove her around the block. I am usually terrified that this time it will not work. This night it did (still).

Today it was hard but busy. Writing this on Thursday, I wrote that I forgot her pills at 1 pm.  Damn. That will mess up her mobility and her mind. Later on Thursday I noted — it is almost 8 PM and I think she is back to her normal for now.

Cheryl could not complete the modified MOCA test on Thursday. Today, Friday, she went to lunch with her friend Barb. The week of visits, no matter how well intentioned, is over.

Tonight we went out to get dinner at one of our favorite little restaurants. St. Patrick’s Day pub crawls where in full swing on Friday night. [Éirinn go Brách] The food was good and the crowd was raucous and loud. St. Pat showed up on the second day of March madness.

Carpe Erin Diem.

Tonight for the First Time

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Tonight at dinner for the first time she carried on a conversation with an apparition that she saw at the dinner table.

I invented a new recipe – Macaroni and cheese with chicken – she liked it. She even raved about it. Then she proceeded to discuss this casserole with a small brown haired girl that she saw at our kitchen table. We have a small kitchen with no external lighting so when I changed the ceiling fixtures a couple years ago I selected a couple of flat square LED fixtures that produce 5000 lumens each. It is bright. There was no child with us. There is very little shadow except directly under the small table we have there. I know the girl had brown hair because I asked. I asked Cheryl not the girl.

Cheryl asked her how she liked it. And then responded, “So, you are not going to answer?” after she had waited for a bit. To Cheryl this girl was very vivid. She did not look at me and recognize the astonishment on my face. For several minutes she quizzed the little girl about the food.

Eventually the little girl left us. I did not ask where.

Cheryl did not invite her for ice cream. We had that for dessert.

Cheryl did not sleep much last night. Her hallucinations are strong when that happens. It has been a very weird day. I tried to keep up with the strange conversation. Some stories are made up out of whole cloth. In “What Rose Forgot”, a novel by Nevada Barr, the writer describes that Rose’s memories fell into her head like rocks from a skip loader or similar analogy. In Cheryl’s case chunks of old career work experience, high school and her early computer system help with the grade school our children were in, sort of commingle in the narrative. A simple “ah huh” or “no kidding” keeps the narrative developing as we drive to somewhere.

In church tonight I noticed that she looked at the same page of the church bulletin all through mass. Somehow I could tell that the words were meaningless to her. It saddened me.

Carpe Diem.