Parkinson’s

Sometimes You Find Things

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Cheryl throws little away when it comes to cards, letters and other written communications. Those include decades old information about house buying, information about her mother Elaine’s finances and letters to Cheryl while at Oldenburg Academy. Old pictures are a treasure and are these days mixed in at random. Recently I was searching for a story I had written some time ago about my mother. While searching for this on many thumb-drives I discovered several note files Cheryl had made a few years ago when her mother passed away. These are thoughts about comments for a eulogy about Elaine.

These days Elaine is very much in Cheryl’s thoughts. Elaine is present and real to her. She often says, “I want to go visit Mom.” Here are some of her memories from a few years ago.

Eulogy for Mom, an Excellent Seamstress

The first example of Mom’s sewing skills took place when Janice and Cheryl were little girls, maybe Cheryl was 5 years old and Janice was 3. Anyway Mom made each of them a new winter coat and leggings and a drawstring purse… she may have also made each of them a bonnet… we’re not sure because we cannot find the photos. However, part of what made this so special is that these clothes were made out of the fabric of 2 adult coats that were no longer needed… we don’t know if they were old coats that belonged to Grandma or Grandpa Moeller or someone else in the family. But Mom carefully took apart the seams in the adult-size coats and made these lovely warm outfits for Janice and Cheryl. Cheryl’s coat, leggings, and purse were made out of a light gray fabric, and Jan’s coat, leggings and purse were made out of dark red fabric. Mom had a lot of patience and skill as a seamstress.

The second example of Mom’s sewing skills is best told from Cheryl’s perspective:

This story took place when we were making plans for Nancy and Ron’s wedding. Mom and I were making the bridesmaids’ dresses for Nancy’s wedding. We had purchased this lovely, soft fabric that had a light blue background with a multicolored floral design. We bought the last bolt of that fabric at the store… there was no more anywhere. We knew that we might have trouble getting all the dresses we needed from that fabric, but we were determined to make it work. Finally we came to the last dress, which was mine. As we were cutting out the pieces of the pattern, we realized that we did not have enough to cut out both sleeves for my dress. The sleeves were what I would call poofy sleeves with an elastic cuff at the elbow. We did have a couple of fabric remnants, but none were large enough for the sleeve. Mom came to the rescue! She sat there at her kitchen table and moved the 2 largest remnants around until she matched up the floral print; then she sewed the remnants together, and you had to look really hard to see that seam. I finished making the dress, and I was extremely proud to wear that dress in Nancy’s wedding.

More stories about Mom

Travel — Mom was never afraid to fly anywhere. She often flew to Florida to visit Janice and her family. She also was friends with a couple who lived in Virginia Beach. Mom would fly to Virginia Beach to visit this couple… Mom’s friends would usually have to go to work while Mom was visiting, but they would give Mom access to the nearby beach. And Mom enjoyed the sunshine and walking the sandy beaches. These thoughtful friends gave Mom a place to relax, especially during the years soon after Dad died.

Jobs — Mom worked as a dispatcher for the St. Bernard Dial-a-Ride for 15 years, beginning in 1991 when she retired from her job as a receptionist in a doctor’s office. Mom loved the part-time Dial-a-Ride job. It allowed her to keep up with activities in her beloved St. Bernard. Everyone knew her and loved her. The only reason that she quit the job when she was 80 years old was because she was losing her eyesight due to macular degeneration… so she had difficulty writing in the dispatcher’s log… other workers had trouble reading Mom’s handwriting… even Mom had trouble reading what she had written. She thoroughly enjoyed working at Dial-a-Ride. She said that, if her eyesight had remained good, she would have continued working there until the end of her life.

Picnics in the county parks with our Krause and Moeller cousins when we were little.

Attended Mass at St. Clement Church on Sundays and during the week.

Reading stories to any and all grandchildren, even when her eyesight was fading.

Bowling team with Evelyn Schulte, Marian Kistner, and Marian Kahlis — played at Brentwood Bowl.

Eulogy for Mom, 2 Special Men in Mom’s Life

Mom had a really good relationship with Dad. They were devoted to each other and to their children. Mom and Dad liked to go dancing… sometimes at the Eagles Hall… sometimes at a wedding reception… any place that was playing music written by the likes of Glen Miller, Johnny Mercer, Henry Mancini, etc. Dad also loved to spend time with his children, even though he worked so many hours at his gas station/auto repair shop, that we didn’t see him as often as we would have liked to. When Dad would come home from the gas station, he usually had some accounting work to do after he ate some supper. If it wasn’t too late, he and Mom might sit at the kitchen table and play cards. In fact, when he had time, we played a lot of card games with Dad, such as Rummy, 7Up, Crazy Eights. Dad loved automobiles… he liked to shop for cars. An evening out with Mom and his children would often consist of visiting the used-car lots in the Carthage and Hartwell areas of town. We would often leave home in one car and come home a few hours later in a different car. Mom and Dad also enjoyed celebrating Christmas. In preparation for that holiday, weeks ahead of time Dad would begin setting up the train and train tracks in the living room and in Mom and Dad’s bedroom, which was next to the living room. Imagine having to step over train tracks to get to your bed! Dad also created many small buildings for the train stations and train neighborhoods out of old shoe boxes. The train layouts that ran around our Christmas tree were always magical.

We never wanted for anything… Mom and Dad always saw to it that we had plenty of clothes, food, toys, etc. Unfortunately, Dad died too soon. Lung cancer ended Dad’s life on April 11, 1977. This was devastating for Mom and for all of us. During the years before his death, Dad would often be admitted to the hospital for radiation treatments to shrink the tumor in his lung or to treat his chronic bronchitis or pneumonia. Whenever Dad was in the hospital, Mom was always there at his bedside. Mom devoted her life to caring for Dad.

Mom had started working part-time while Dad’s battle with lung cancer progressed. After Dad’s death, she began working as a receptionist at a doctor’s office in Clifton. There, a couple of years later, Mom met a gentleman by the name of Bob Roller. Bob invited Mom to go out with him on a date, and so she did. Pretty soon Mom and Bob became companions. Bob was not a dancer… he may have been a dancer at one time, but due to diabetes, both of his legs had been amputated at or above the knee, and he wore 2 artificial legs. Bob had other interests… he was a history buff… he liked to visit historic sites. So Mom and Bob would go to museums and air fields like Lunken Airport or the Air Force Museum in Dayton. Bob also liked to play Scrabble, and he and Mom would often sit at Mom’s kitchen table, playing Scrabble all evening. Bob was a very kind man… he loved Mom and Mom loved him. They were companions for about 16 years, until Bob died. I don’t mean for this to be a sad story. I think that it is remarkable. Mom enjoyed the company of 2 very special men in her life. Even Bob Roller’s children recognized how special Mom’s relationship was with Bob. Members of our family attended Bob Roller ‘s funeral. Bob had been in the military and so there was a flag ceremony at the grave site. The officer presented the folded flag to one of Bob’s sons who turned and presented the flag to Mom! We all shed many tears that day.

As I read these this morning in the background on television the news folks were reporting on the 9/11 ceremonies going on in New York, Pennsylvania and Washington D.C. I did not notice the TV until I was reading this last commentary about Bob Roller. Bob had been a bomber pilot during the war years. That was his interest in planes and flying. Somehow the background of names being read at ground zero seemed apt.

Reading these notes of Cheryl’s a few years ago touched me. I can hear her normal cadence and volume of her voice. I can hear and see her pre-Parkinson train of thought. Little of this is present these days. I miss simple conversation with Cheryl

Carpe Diem.

A Quiet Monday

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My mother always hated Monday. Even after she was long retired from her working career she would refer to Monday as Bloody Monday. I never understood that attitude.

This Monday morning Cheryl is sleeping in the other room. Quiet after she had been up concerned about strange thoughts just before midnight. She was worried about when Jan and Nancy were going to pick her up. Jan has passed away. Her thoughts are often very jumbled up these days.

Yesterday evening she was very anxious about our nephew Mark and his girl friend Jill. This was brought on by us driving past the FedEx terminal near where we live and Cheryl asking about Max working at FedEx. I responded with the fact that Mark, our nephew, worked for FedEx. I asked if she meant him. She said yes, I think so. And this launched her into several hours of on and off conversation about him and his girlfriend Jill (I quit correcting her ideas) and birthdays and presents and on and on.

After awhile it is very hard to deal with random nonsensical conversation.

I convinced her we should practice her voice exercises. We shouted MAY, ME, MY, MOW, MOO for several minutes. And tried to make AH last for ten seconds. Parkies do not breathe deep. In Cheryl’s case she often has very little air behind her vocal chords.

We rounded out the evening by watching 60 Minutes on CBS and then the movie “80 for Brady” (for the 53rd time).

I am starting to wonder where she has gone in her mind. She has exhibited several unusual behaviors over the past couple weeks but I disregarded them to simple tiredness from her current PT schedule. Physically she seems to be moving worse so none of this seems to me to be helping her.

A few days ago she sat in the rocker in our living room and stared out the window at the bushes in the overgrown lot behind us for two and a half hours without moving. She did not speak during any of this time.

She puts together random collections of pieces of paper and photographs. Some of these I have taken out surreptitiously of her circulation and put them on my desk to look inside her mind. I think it may be scrambled but occasionally I find little gems.

These pictures of Dad were attached to one of Cheryl’s lists of stuff: Moeller; Dr. & Mrs. Fred Kraus; Jeane Krause; Mr & Mrs.; Barb Kalb; Find Barb’s Christmas card; when I find the list compare the list to current addresses for all; Lists <-> Krause, Torbeck, Driscoll, Weisgerber, Welch; Make a list – Cheryl Torbeck, Cheryl’s friends… None of this has anything to do with these pictures which were probably collected for my father’s funeral in 2007. I am glad I found them.

Maybe one day I can find her mind for her and give it back to her.

Carpe Diem.

Soft Voice

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This particular symptom of Parkinson’s disease is really annoying to me. Cheryl is doing speech therapy and when she does the exercises she is easy to understand. Today she is out in public and moving her lips with no sound coming out. Today for some reason it is making me on edge. I tried my old technique of making her mad at me. That did not work today, but maybe it will work tomorrow.

I miss our conversation. These days with her worsening dementia the conversation can be meaningless and totally random or it can be meaningful and loving. Her brain chemistry is a mishmash. She is easily distracted by small things around her. Although menus are a challenge we used to be able to discuss various menu options and whittle them down to one or two. lately that has been an incredibly hard struggle only made worse by her soft voice and my inability to understand more than every third word.

The Parkinson’s Voice Project is a charitable organization that has done a lot of work in this area. They train speech therapists with a program designed specifically for parkies.

The program only works, however if the parkie will do the exercises and practice speaking. If she will not or cannot or is mentally unable to plan time for these exercises their helpfulness is lost. Imagine a person dealing dementia reading the exercises silently to herself. It can make you cry or grit your teeth in frustration. My small experience with teaching presented some of these same frustrations. It has been ingrained by many generations of poor teaching technique that it is bad to make a mistake. Boo boos are embarrassing. Why do we teach kids this? Why do we remember it as adults and still shy away from errors? When some get this despicable disease of Parkinson many will not help themselves because they are embarrassed to make a mistake. It is ingrained in us from early childhood.

Carpe Diem

Like Drifting Sand – some days

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Friday – Happy Friday. We have gotten to the end of the week, almost anyway without any major disasters. This was therapy week. Cheryl’s doctor suggested that she might benefit from PT, OT and ST. Those are speech therapy, occupational therapy and physical therapy in reverse order from my listing of initial abbreviations.

These were the initial visits for evaluation of where she is currently. She did this last year. This disease of Parkinson knows no schedule or any sort of time table but my overall observation of Cheryl is that she is deteriorating at an incredibly slow rate. She is nevertheless deteriorating. I put her in a transfer chair in the morning to take her to the toilet and then later to the kitchen table for breakfast. Eventually she is able to maneuver herself around without my help.

No one dies from Parkinson’s disease, they die with it. Some days however their care partners seriously consider cliff jumping without the necessary safety apparatus. (Sarcasm)

The mundane rigor of it all juxtaposed to the chaos is draining. Perhaps we all need to talk more.

The occupational therapy appointment was at 3:45 PM. The facility is handy. It is about a 10 minute drive from our house to the Drake Center. Cassidy asked Cheryl lots of simple questions about where she is physically and what she did with her day. Questions about cooking, cleaning, sitting and standing. Cassidy also preformed some simple strength and agility testing. Cheryl only misspoke once or twice about her role in the household chores.

My grand plan for the day had been to visit the OT expert and then move on to the Board of Elections. More about the Board of Elections later, but the scheduled appointment to the occupational therapist was almost foiled by a trip to the restroom. At 3 PM I suggested that Cheryl visit the toilet – just in case – so that we had time to make it to the OT appointment at 3:45 PM. Only 5 minutes away but there is that “Please arrive 15 minutes before your appointed time” that medical health services always ask you to do for them. (What makes them so special?) Nevertheless I try to abide by their scheduling rules. Parkinson raised its ugly head and said, “bathroom! Now!” After a little bit of argument we managed to get to the appointment at 3:45 PM. Sadly, there was no 15 minute breather.

In Ohio there is a statewide ballot issue concerning the way we modify the Ohio Constitution. The leg-ups and self-righteous in control of the state government are annoyed with the fact that the OMG’s and the gracious are so easily able to call them to task by proposing a constitutional amendment and forcing them to defend their positions in public. Never mind the fact that graft and greed in the form of direct payment for votes has caused the leader (Householder) to be visited upon by the Feds with gaol (old English) in the offing. The amendment process has survived the rise of the special four who attempted to write themselves into the constitution as the only ones to cultivate cannabis in Ohio if it became legal for recreational use. (I wonder if bars will have special places for them with the tobacco smokers?) So, in the end, the process probably does not need to change.

Early voting at the BOE was not in the offing, however, The OT appointment went longer than I had expected. I do not know what I was expecting. The early voting office closed at 5 PM which was about 4 minutes before we got there. So, after a series of snafus we finished at one of our local pizza stores which was located across the parking lot from the Board offices.

Pizza is a go-to for Cheryl when she cannot decide on anything else. We have often come to this particular pizza palace after church on Saturday evening. We succeeded in landing a table at the empty restaurant at 5:16 in the afternoon just as the skies opened up with a late afternoon thunderstorm. It is Ohio and late July. We enjoyed our pizza and drinks and sat to watch the storm wash our car in the lot. When it came time to leave, Cheryl announced as she often does that she had to visit the rest room. All sorts of things zip into my head when she makes this announcement. Mostly there is a flashback to the many less-than-satisfactory trips to public bathrooms. She refuses to recognize that she needs help more than merely occasionally in the ladies room. I have been in many over the past few months and yet I think she is unconvinced that any help is required. (So I sit and wait to see if she can get back through the door with her walker and seethe while I do it.) Public bathrooms and their cleanliness and the equipment or lack there of is often the main topic of the drive home conversation. (Not the quality or the enjoyment of the food.) It is no doubt just me and my internal opinion but often it seems she is acting like a newly toilet trained child who needs to try out all the toilets they come across because they have this new found ability.

We left the pizza store and drove to one of our favorite soft serve ice cream places for dessert. She wanted to use the toilet there also but theirs was marked closed for repair. I wonder how they get away with that with the health department rules we have.

When we returned home, she spent many hours sitting in her office touching and reading her cards. We eventually went to bed at midnight. She seemed to know where she was then although she had spent the better part of an hour in our from guest bathroom. (Lots of bathrooms are in this story.)

She awakened today at 9:30 am. Spontaneously! I attribute that to a new medication her neurologist prescribed along with the OT, PT and ST. He felt that some if not all of her sleep problems were due to smoldering anxiety and depression issues.

After breakfast and after getting cleaned up and dressed we had a funny little discussion.

“When did I get involved in this play? Who was that girl that put me in it?”, she asked after we had discussed the weather and Jill’s Christmas in July party tomorrow. I thought she was kidding about her situational awareness of her disease. I was wrong. She believes she is in a play that may never end.

All the world’s a stage,
And all the men and women merely Players;
They have their exits and their entrances,
And one man in his time plays many parts…

As You Like It — William Shakespeare

Carpe Diem.

Occupational Therapy

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Today we go to OT. Next week we see the speech therapist for the second time as is true for the physical therapist.

On Tuesday of this wek the speech therapist gave me as caregiver a homework assignment. I am to keep track of what Cheryl eats and whether she has a coughing fit while eating whatever it is.

Yesterday I wrote: She had scrambled eggs and bacon with toast and orange juice for breakfast. I aways put water on the table near her just in case. She did not cough (or hack) while eating any of this. Earlier when I gave her the morning meds she coughed a bit while sipping water through the container with a straw. This often happens but less so when I get her to sip a little water before she takes her meds.

She coughed not at all again until our late afternoon grill out on the patio. Again when she was sipping a little water.

I have to admit that I have paid little attention to how Cheryl eats. She eats more slowly than I do. I am a wolfer. She is not. She drinks very little liquid while eating.

Thinking back, her mother drank very little at supper time when we had her over. Her mother had a swallowing problem as she aged, often her throat worked bacwards for her. (She would become embarrassed and refuse any kind of help. I would take her home.) I wonder if Cheryl worries about this problem her mother had. I wonder if Cheryl worries that she might develope the same problem.

On this morning we had Pillsbury refrigerator rolls. These are a favorite of hers so I try to make sure we have some hanging around in the refigerator. She always has orange juice but this morning I also gave her some applesauce. She has been requesting this more when she takes her pills. After eating the applesauce and two and most of a third roll she complained of “nausea”. I do not know what she is actually feeling. She has not vomited since I went to visit my sister two years ago in California. (Then she was extremely constipated.)

She coughed for a bit and I gave her a chewable Tums smoothie with which she sipped a little water. All was well afterwards.

It is remarkable how little water she uses to take her meds. I encourage her to drink more water. It is remarkable how repetative it all is. It being daily life.

Carpe Diem.

Cheryl likes Cookies

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Today is Snicker Doodle Day again. These are simple sugar cookies. I added a new twist and put in a teaspoon of almond extract into the cookies dough. (Maybe two tsp. next time) I also added a tablespoon of psyllium husk power for added fiber. Parkies need as much fiber as they can get.

This basic recipe comes from the Betty Crocker Dinner for Two Cookbook. Cheryl has been making these cookies for 50+ years. Her face lights up when I make them.

Carpe Diem.

It is a Messy Disease

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Cheryl never likes it when I suggest she should take a shower. She accepts that information as me telling her that she stinks. She does not but I keep track of how often she washes herself in the shower. She can no longer remember that information. So, when I ask if she needs any help taking a shower and getting cleaned up and she snaps at me, I ignore it as I am able to do.

It hurts occasionally and I react to that sometimes but I feel in my heart she does not recognize the hurtful comments she makes sometimes.

Another “goal” is to keep her safe and not walk away no matter the vindictive.

Carpe Diem.

Doctors Week is Tiring

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This week for lack of a better description was doctors’ week. We saw both our personal care physician and Cheryl’s neurologist a movement disorders specialist. He made some minor adjustments in her meds schedule and added one new one to help with anxiety and perhaps some depression he detected by interviewing Cheryl.

Prior to these visits over the past couple days Cheryl slept poorly. This morning she is sleeping in. She was relieved last night when I helped to bed with the fact that we had nowhere to go today. We had no doctor visits. She did not have to be on her toes to answer questions about how she feels that could make her feel sad. I think she is very aware that she can cry easily and is unable to control that response. Her neurologist is very gentle and recognizes her disease’s progression in her body.

It was very hard to maintain her showtime persona yesterday and the day before. I am gladdened by the fact that it is over for a few months.

I helped her up out of bed and into the kitchen for breakfast but I was premature. She kept her eyes closed in the kitchen. She seemed uninterested in breakfast after all. I asked her if she wanted to sit in the lounge chair and doze for a bit. She did.

I talked to the physical therapy folk to schedule the PT recommended by her neurologist. Eventually she awakened as I put a pillow under her left side because she was drooping that way in the lounger.

I rolled her back to breakfast. She ate and looked at the paper. She did not work the puzzles.

I talked to my Portland sister. She often makes me rethink things. The doctor has diagnosed Cheryl with some mild anxiety and perhaps depression. The brain floats in a sea of proteins and chemicals. Parkinson messes with that. I do not always recognize my own needs as a care partner.

The next phase begins.

Carpe Diem.

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

Scrambled Eggs

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This was a strange morning so far.

Cheryl was interested (it seemed to me) in going to bed at the normal time about 10 PM. I helped her through all the normal changes and toileting. Afterward I sat up to read but could not wrap my head around the story I was reading. I came to bed at 11 PM.

After I laid down and got comfortable she started talking to someone. I thought at first she was talking to me but listening I realized she was having a conversation with whom – several people – she was seeing in her head. She has had these episodes in the past but not for some time. Last night and early morning her hallucinations were strong. At least three people were in the room – Nancy and a couple of smaller children and Zachary. They talked about church topics. They talked about playing. they talked about what was best to eat. They talked about books and stories. They talked about breakfast.

After an hour or so of this I got up. I must have gotten used to her murmurings and fallen asleep for awhile but I awakened at a little after 1 AM and could not return to blissful slumber. I got up and pulled the sofa-bed apart with the intention of sleeping in the living room for a couple hours but that did not work out as I heard her moving around shortly after I got up to switch rooms.

When I reentered the bed room she was perched on the edge of the bed trying to get up in her hop-hop mode. I helped her up and she needed to put her imaginary earrings on the dresser in our bedroom.

I suggested to her sleepy, dreamy, hallucinatory self that she sit on the toilet while we were up and she did that. I changed her overnight incontinence stuff and while I was doing that she saw imaginary wetness on the floor as well as several imaginary insects moving about. We captured the imaginary insects after getting off the toilet and searched for more. Afterward she announced that she wanted scrambled eggs and ham. I sadly reported that we were out of ham and I would have to go to the store the next day and fix that but I could do scrambled eggs and toast. She was okay with that modification.

I made her scrambled eggs at 2 AM.

After she ate we returned to bed. I did not hear the living room clock strike three but that may have been because I stopped its pendulum while I was laying on the sofa-bed earlier next to it counting the ticks and the tocks.

It is 10 AM and she is still sleeping and I am wondering how long to let her sleep. We plan to meet one of her friends for lunch today at 12:30 or so. And what should I offer her for breakfast. This day is starting out very hard for Cheryl and very slowly.

Carpe the breakfast Diem.