This one – The Criminal Intent of Parkinson’s jumped into my email from parkinsonsdisease.net. The writer Dan Glass makes a great point. The premise of Parkinson’s will not kill you but you will die with it – is the perfect example of a distinction without a difference. He uses funnier tongue-in-cheek language than me.
Falls are Scary
Falls can occur anywhere and for any reason to anyone but parkies struggle with balancing; those tiny muscle motions that keep our center of gravity over our feet and heels. Parkies with dementia struggle to remember and use the techniques taught by the physical therapists.
For me as care partner, I am guilty of getting overly upset and excited when I watch Cheryl move around without her walker in our condo. We have a standard looking walking frame for use inside our house. She is using it more but learning is individual and until she wants to do it exclusively or feels wobbly enough, it is not habit and I will have to gently nudge and remind her. Her retort is often, you are always telling me what to do. I guess I am. I fear for her safety. We have a U Step walker for when we leave and go anywhere else. She is used to having it with her but sometimes she will walk around it to get to the garage and into the car. I give her a reminder nudge.
She fell two times this week. I hope this is not a omen. Both in the bedroom doing various activities associated with daily living. The first time our niece Natalie was here cleaning and I was in the bedroom collecting towels for the Wednesday laundry towel load. My perception is that Cheryl was backing away from the dresser after getting something from a drawer. She passed behind me and landed on the floor to my right. As I watched she bent her knees and collapsed on the floor.
I showed Natalie how to help her up by getting a wooden chair to place near her and hold on to stabilize the chair. Cheryl knows how to get up. She maneuvers to get her strong side (right) under her and then pulls on the chair. Sometimes she sits on the chair for a bit to rest.
The second fall happened while she was folding shirts on the bed a couple days later. I had dumped the laundry basket onto the bed and she became interested in folding the laundry. Fortuitously she fell onto the bed sort of face first and did not bend her glasses.
Aspirational pneumonia is something that I worry about with Cheryl but her cough reflex seems strong for now. I listen to her when she coughs. It does not seem deep or struggled. She does seem to be drooling more.
Coming from the care partner point of view raising tension between cared for person and care partner person seems at best counter productive. Sometimes saying, “Let me know if I can help” is more calming and useful than barging in to take over the situation. When I think about events that have occurred along the path of this journey with parkinson I tell myself that over and over. Many times I listen to myself. It is easy to carpe the angst of some situation and slip into know-it-all pedantic care giver mode. (Lately i have been catching myself and stopping mid-lecture.)
And doing the best you can to continue with a life not driven by Parkinson is hard work. There is extra laundry. There is extra equipment. There is extra travel time. There is extra time associated with any social event. There is disrupted sleep associated with any specific morning time event. There is menu confusion. There is mental confusion. There is resistance to help sometimes. Nevertheless, as much as you are able to do it, live life.
In Cheryl’s case, decisions can be remarkably difficult. They are made worse by deadlines. Lack of understanding of the day or next event add on difficulty. The decision to day is – what to wear?
Parkinson is a big enough trial when it is only a mobility issue. When cognitive function is affected. It is just plain harder. You as a care partner can help with calmness or not. That thought sent me off into mindfulness and discernment about how to help by not emphasizing the time.
Today is the date of the Sunflower Rev it up for Parkinson’s symposium. It is an information and exercise presentation by UC Health in Cincinnati. And we are getting a late start.
Although we had talked about it last night before bed and I had emphasized getting to bed on time, so that we could get up on time. Admittedly this morning I cared little about going to the symposium but it is a useful thing to Cheryl and occasionally I learn something new. When the alarm went off she awakened but showed little interest in getting up. After some reluctance I encouraged her to get up and have some cereal to get started.
The wild enthusiasm for life, a better life with Parkinson can be intimidating to those of us who through our new duties of care partner and might have been hoping for a more relaxed environment in later life. So when Cheryl started hinting at not feeling up to going I seized on it but perhaps a little to enthusiastically because she changed her mind with little time to spare and we left. But not before I gained the opportunity to point out the lateness of the hour.
Thank God for the great science interspersed between the impromptu exercise. The lecture portion is familiar and reminiscent of many college courses from my earlier years. Bliss.
In a presentation about new chemicals and old standard chemicals I notice that most have the same set of side effects. The side benefits seem to alternate between diarrhea and constipation, insomnia and narcolepsy, yadda yadda yadda. Of course the doctors and scientists would prefer that patients not focus on the side benefits but those are still there whether you ignore them or not.
A gentleman told his personal story about PD and his journey. Being an ex-football player and wrestler in college he was attracted by the various boxing style PD programs. Rock Steady Boxing was founded in 2006 to empower people with Parkinson’s disease (PD) to fight back through a non-contact, boxing-style fitness regimen and emotional support. The program started in a tiny gym in Indianapolis, Indiana. His coach told him – If it is to be, it is up to me. (Inspirational) He and some others have formed a group – Romeo (retired old men eating out). Social gatherings are important . One can never give up.
There are things you can do that will make things easier like, no button down shirts.
There’s no hope without data reported Kim who is a research scientist. I like the science. I hate the disease. I do not know where my attitude is today. Perhaps it is still in bed thinking about a Saturday sleep in and then a visit to my son’s house for the fantasy football draft festivities.
This appeared from James Clear in his email newsletter.
It spoke to me. Deeply.
I do feel small when I allow Cheryl’s disease to become her. It boils over into anger and guilt. I forget often that she is not her disease.
She has been getting physical therapy to help her with movements like getting out of a chair. Sit to Stand is the notation on the PT’s notes. This motion is natural to non-PD people. One does not even think about the mechanics of it. Cheryl has to think and remember the sequence of moves. Depending on the time of day and how she is feeling, thinking and memory are difficult. So she simply cannot remember how to get out of a chair.
When she has fallen and when she falls it is always backwards. I encourage her to lean forward at her waist and push off the chair as the PT told her. Nose over toes is the mantra. But in view of anything, walker, table, person, nearby grab bar or whatever grip, grab and pull easily win over N-O-T. I encourage by telling her where to put her hands and how to position her body. She responds with don’t-tell-me-what-to-do anger. I respond in kind and then feel bad because I was to her unkind.
I love her dearly (big). I am annoyed with her disease (small) and I allow it to be her (smaller).
My personal reason for writing this is to hold that idea up in the light and discern how to be better next time. I am grateful for all the next times even though anger anxiety and anxiousness might creep back in. It is hard work and I am not that good at it.
Ten meter walk – How fast does it take to go 10 meters? (36 sec) The metric system is everywhere except in American society.
This U-Step is a great walker. Why don’t you use it inside? It is a great question from the physical therapist. When I first brought it into the condo it merely sat next to the dining room table until we went somewhere but in Cheryl’s defense there are a lot of close by things, chairs, tables, half walls, door handles and grab bars that she ignores the walkers during the day unless she is feeling very unsteady. We have had a standard looking walker for quite some time. She worries about bumping into things.
We do use it when we go anywhere away from home. The wheels track in what ever they got pushed through elsewhere. I do not care about that. It is old carpet on the floor. It cleans up good when the carpet cleaner folks show up. It is just another maintenance item for the budget. I can encourage her but usually it sits by the dining room table. – This goal is use the walker more for safety.
Sit to stand – scooch forward, lean forward… like a rocket ship… push up off the arms of the chair. Stand to sit – lean forward and reach back, hold the chair and sit. The PT person provided this as a recipe for standing up. I have helped her with this at home but when we start it from a sitting position I can she her become anxious about making a mistake and “getting up wrong.” I am unsure about how to help her past this feeling.
Balance 7/56 — I took this note but I am unsure of its meaning now. I think it is intended to mean that of several tests for balance (56) Cheryl has a poopy score for balance. She has to think about balance. In most of us it is an autonomous function.
Difficulties with balance and walking are linked to the brain changes that take place with PD. For people who don’t have PD, balance is automatic, a reflex. But Parkinson’s affects the basal ganglia (a part of the brain essential to balance). To compensate, the brain assigns another brain area — an area used for thinking — to take over. The thinking part of the brain, mainly the frontal cortex, can’t control balance automatically. The result: for many people with PD, balance becomes less automatic.
Cheryl wants to cook something and I am afraid that she will harm herself. I cannot get past that.
Yesterday after our doctor appointment in the early afternoon, we stopped at Dewey’s pizza for a late lunch. Somehow the white pizza showed up with red sauce on it but mistakes happen and the pizza was good, just not what we had ordered. (That is the second time in a week that the incorrect pizza showed up at our table. Perhaps we need to expand our cuisine. ) Nevertheless, lunch was good and we returned home to do nothing for a bit. Cheryl lapsed into one of her punding/do something modes and began futzing with making something in the kitchen for dinner at 3 in the afternoon.
It made me nervous and I suppose what I should have done was sit in the kitchen to read my book and keep an eye on things. But I did not. I just popped in to check occasionally and point out that we did not need dinner for awhile as we had had lunch at 2:30 pm.
Family dynamics are hard to break. Before Parkinson she did most of the cooking and I stuck to my baking hobby out of the way at the other end of the kitchen. I stayed out of the way when she was cooking. My opinion was not solicited nor encouraged in our old house. Cheryl was a good cook and in my new duties as cook among other things I have tried to duplicate many of our old favorite recipes. Sometimes I would botch them up but most times they turned out the same. (Thanks, Betty Crocker.) These days when she gets in a mood to cook, things can turn out badly, but, more importantly, she has fallen in the kitchen as often as anywhere else and I worry that she will put her hand on a burner or fall into the hot oven.
When I could not gently steer her away from her “cooking” – she was boiling two eggs – I became angry and upset and tried to explain the danger to someone who sees none.
And last night she slept poorly. I blame me for that. Lot’s of emotion swirling around in her head as she tried to sleep left her fidgety and awake until almost four am. Even the big new bed did not help.
Carpe sad Diem. An opportunity to make a memory was lost to anxiety and anger. But tonight we will make something together. I will do better this time.
Cheryl fell in the shower this morning. Slid down the wall is probably a better description. I heard no thumps. It is always our discussion – I’m going to take a shower. Okay, I will listen for thumps. Thanks. And then she goes to the big bathroom to get cleaned up. Today I thought I heard her futzing with her walker but she was occasionally bumping the shower door as she tried to reach the hold bars to pull herself back up.
I ordered a shower mat from Amazon. I told her from now on we put the bench in there with it. A few weeks ago I had the plumber put in the really fine hand held shower head in preparation for this day. Several times I have suggested that she use the bench. Resistance to infirmity is great. No bench she insisted up until now. I will insist but I want her to maintain as much independence as she is able.
The shower floor does not seem slippery to me but I could be wrong.
One foot in front of the other. One step at a time.
Cheryl told me she is scared to be on her brother’s boat.
Recently Cheryl’s youngest brother invited her and the rest of her living clan and clan-in-laws for an evening ride on his pontoon boat that he moors in a small man made lake near his home in southern Indiana. I am always on the hunt for things to do with her that let her socialize a bit out of and away from our little condominium living situation.
Since Ken’s text message came to me on the family text chat, I told her what he proposed. Cheryl responded with, “I will think about it.” This is a phrase that she learned from her mother as a small child and she has used throughout our fifty years of marriage and many times during our child rearing years. Roughly translated it means “NO” or “no thank you.” But being the polite person that she is, she does not want to hurt anyone’s feelings, she rarely says no directly. (She also learned this from her mom.)
Cheryl has a lot of her mother’s traits. She does not want to put anyone out. She does not want to offend anyone. She can be angry with me as could her mother when she thinks that is appropriate, as when I am being pushy. She does not want anyone to stifle their good time by worrying about her welfare. She is okay with isolating herself to (her perception) benefit others. She enjoys the presence of small children even if the small children are unsatisfied and complaining about it. She enjoys the presence of big children and wants to be a part of their life even if the big children are uninterested in letting her in. She likes big family gatherings.
Most recently she has a new special Parkinson’s patient walker to help her move around with steadiness. After her appointment with her MDS neurologist on her birthday several days ago, I ordered this for her. In the picture is her new U-Step. I should have gained my AHA here since I just ordered this over the phone three days ago. (I am buying her a stabilized walker and suggesting we go on a boat that will wobble every time someone moves.)
But, getting back on track, she said to me that she is scared to be on Ken’s boat. That is the first time she has ever expressed that to me.
AHA MOMENT – Occasionally these pop up and I cannot always understand her needs. Prescience is not a strong trait of mine. But imagine for a minute, here is a person with balance issues and I am promoting going on to a less stable surface than she is used to. She can lose her balance and fall backwards when changing positions in our living room. Our building is built on a slab. It is hard to get a more stable surface. AHA (you moron).
Ken caught on pretty quick and proposed dinner tonight on the deck at Willie’s restaurant next to the puddle (his term for the man made lake.) Tonight is anything goes pizza Tuesday. Willie’s fits into the anything goes part of pizza Tuesday.
We will go tonight and take the new walker for practice and hopefully greater stability.
We had a wonderful dinner with friends last evening. This gathering had been put off three times for various reasons but yesterday we got together. Gary showed off his wine aerator when he was pouring the wine. He told me he cannot tell the difference. His palate is older than mine and I had gin and tonic. Perhaps he was sold a bill of goods by an aerator salesman.
Everyone contributes when we have these dinners. My job was bread. Yesterday after several false starts I got two loaves of italian (my version of italian) together. They were remarkably good so I should perhaps I will note in my notebook of cooking disasters what went wrong and what I did to recover.
Today Cheryl is very tired. She refuses to admit it. I suppose I am tired also. We did not stay out late but we did sit up and watched a PBS show to unwind a bit when we got home.
We had french toast made from the second (leftover) loaf of bread from last night. It was good again. I am very thankful that I do not have celiac disease. One reason to not be grumpy today.
Cheryl spent some time cleaning the kitchen after she had her french toast with blueberries breakfast. All the time I was worried about her. I think I am anxious for her because the last few times she has fallen, it has happened in the kitchen. This time however she moved a lot of things around and wiped counters; swiffered the floor; threw the kitchen tablecloth into the washer along with the clean one she got out to replace it with (both will be clean in soon); and then became tired and uninterested. She took her ten o’clock meds and went to lay down for a bit. When she awakened, she announced, “Today is my birthday!”.
It is not and stupid me pointed out that it is May the fourth. I thought about – may the fourth be with you – but left that unsaid. She responded with, I wish people would stop changing the dates or some other angry anxious comment. I backed off quickly. I apologized to her and pointed out that her birthday was next week on the tenth of May but tonight we should go somewhere and celebrate her birthday.
She became calm and sat down to watch the gabfest on the View. I brought her a coke and set about putting the kitchen back together. I discovered that she had thrown the tablecloth from the table in with the folded one from the drawer into the washer and I did not catch that before tossing a bunch more towels in on top. (Damnation. I became immediately grumpy.)
I sat down to write this little story and laugh at myself. I do not want to be grumpy today.
She actually slept pretty well and later today we will probably get out and take a walk in the park. And celebrate her birthday. There is nothing to be grumpy about. We had dinner with friends last evening. It was good company and good conversation.
When engineers look for a solution to some dilemma, they often spend a lot of time observing the problem.
Many thoughts can arise. Many questions seek answering. But ultimately the dilemma is slowly broken down to component problems and individual solutions to small problems are sought out. An engineering education teaches this process. An engineering education does not teach solutions for Parkinson’s disease and related issues. Those are discovered along the way.
“There’s someone hanging upside down in the trees in back”, she told me. There is a scrub tree growing in the weedy lot behind our condo. It has a crotch near the ground and branches into to smaller trunks as it grows toward the light. The bark is a light color almost khaki in color. To Cheryl it looks like a kid standing on their head. Perception is off a bit and her creative brain describes a different interpretation.
In that moment she pushed me into interpreting things and objects differently. Are painters able to do this spontaneously? Are story tellers able to imagine a different reality? Are engineers stuck with what they see and touch with little imaginative creation? It intrigues me, the imagination and story telling part. I have often thought that if I could get into her head I could help but maybe I would merely be steering her toward my reality and away from hers.
There are many changes that I notice in her behavior. She can easily ramp up an anxiety about indigestion. It is not apparent to me what specific foods cause distress. Milk products and foods high in milk and sugar seem to give her a hard time. Tomato sauces and beef with a high fat content also distress her stomach. The engineer says figure that out and do not eat those. (Easy Peasey) The average time to relief is an hour to an hour and a half.
I have not discovered any silver lining in these stomach episodes. It is challenging to distract her from focusing on how her stomach feels although occasionally I can get her to sip lemon ginger tea which settles my stomach and does not add caffeine. After a severe episode she is typically awake much of the night. This happened last night.
After it became obvious to me that there was no way for her to calm down and sleep some more, we got up. I got her a bowl of cereal and some orange juice. She sat and worked the puzzles for a bit. I sat with her and worked on the crossword. I ate a banana and drank some lemon ginger tea. I asked her if she wanted to watch TV for a bit to see if she would get tired. She agreed and I played a couple of episodes of Steven Colbert. I can no longer sit up and watch his show so I record it for later. We watched a couple shows. Fortunately he was funny and Cheryl laughed here and there.
Today she is not in tip top shape of course and she fell over backwards in the kitchen. She is understandably fuzzy headed even though she slept until about 9 am. Maybe one day she will keep her hands empty when getting up from or down into a chair. But my wishes and encouragement which she interprets as anger go mostly unheeded.
On the drive to exercise class she asked if I slept well. I asked her if she remembers being up for a large part of the very early morning hours. She said no. The fact that she does not have a memory of being awake is not uncommon. I asked her if she specifically remembered watching Steven Colbert’s late show. She remembers that slightly. She apologized. She apologized for something that she has no control over and that frustrates me to no end.
There is no reason for her to apologize. It is not her causing undue commotion. Parkinson did it.
Watch out for kids hanging in the trees. Carpe Diem.
She wants to do it herself. We had a tough for me conversation this morning about issues we trip over as travel the annoying twisty road of Parkinson. It started out as, you know I can still do stuff.
This was a response to me speculating about learning to make my own piecrust instead of buying a commercial piecrust. I will take the path of least resistance every time I can. There are enough things to staff, organize and worry about. If someone has already made the piecrust, I am good with that.
I buy salad in a bag too. Dump and go. Chop a tomato and it is salad. Dressing is in the fridge.
She remarked that she could make a pie and that she knew how to make piecrust. Naturally I forgot about what I have been attempting to practice on a daily basis. I started to enumerate the negatives. I caught myself before I got too far into the ditch along side this partially paved macadam thoroughfare.
It is Lenten season. Instead of chasing some carryout fish fry from our parish we had the makings of tuna casserole. An old time favorite from the Dinner for Two Cookbook by Betty Crocker (You can still find one if you poke around.) Remember Betty Crocker? She is my go to for a lot of things. That seemed like an easy thing and she likes it. I said why don’t you make the tuna casserole and we can have the leftover pie for dessert.
We attended a discussion in the afternoon about newer drugs used to treat Parkinson’s disease and when they are used and how they worked. When we returned I attended to the laundry and then busied myself with work for my job at our local community college where I teach part time.
She announced she was going to start on the tuna casserole. It was three pm. I spent the next hour listening and worrying and occasionally sneaking a peek into the kitchen twenty feet away. After a few misfires on her part she got started with minor aid from me. She put all the ingredients into a Corning ware bowl and mixed it. She used to know how to start the oven but that knowledge and skill has been lost to Parkinson. I told her which buttons to push and it clicked on.
I went back to work on my project but gave it up for a bit when the oven played its happy tune to announce it was up to temperature and waiting. I went in for the oven placement of the casserole. She put it in but I worried while watching. (Maybe I am a worry wart.)
I suppose there is a good mechanical engineering reason for oven doors to open as they do. I have not seen one built so that door opens any other way but down. A standard range winds up with the door about a foot off the floor so that the person reaches down into the oven from three feet away. It looks to me like a disaster waiting to occur. I hovered nearby as she put the casserole into the oven and then put on oven mits to get something from the fridge.
We ate about an hour ahead of when we usually eat but time and calendar and sunrise and sunset seem to have less meaning for her. It is time for us to start eating dinner at four pm like the rest of the old folks.