A car door, a bush, a rock decoration, the walkway, splat… A literal wandering into the weeds caused her to trip over a rock decoration at the end of my daughter’s driveway and fall face first on the concrete walkway at the front of their property.
Daily and weekly routine is comforting to parkies. It is comforting to caregivers of parkies. I suspect it is comforting to all of us.
Breaking routine opens new doors to mental fitness. And sometimes, if unexpected, creates unease and imbalance in the day.
Monday – Wash the sheets! In our third week of — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — I have come to realize this is routine now. This is Monday too, so, I am thinking, when she gets up I will strip the bed wash the sheets.
I used to wash the sheets on Sunday. A few weeks ago I changed that to Monday for no particular reason. Often we visit the kids and their families on Sunday but the washer runs unattended, as does the dryer. I did not need to change because of interference with anything. I changed for the sake of change. It is one of the basics tenets of Buddhism, everything changes.
If the kiddos would visit us, they might find grandpa putting the bed back together.
Tuesday – Exercise and Pizza! More — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — It is Parkinson’s Community Fitness Day! (smiley face) Shouting that here sounds in my head like the Mickey Mouse Club of old. Nevertheless on Tuesday Cheryl has an exercise and fitness class at PCF. This organization grew out of a recognized need for some structured fitness routines oriented specifically toward Parkinson’s patients.
It works wonders. Physical exercise seems to have the same if not better affect to her mobility as the meds. She is often tired afterward but her spirits are brighter and for a few hours she seems to move better. For Cheryl, having a specific time and a class of similar folks, seems to work better. She is able to but uninterested in doing these same exercises at home. The community atmosphere is encouraging to her.
Do not forget the pizza. Tuesday became our go out for pizza day perhaps seven or eight years ago. We bounced around on different days of the week for a time until we settled on Tuesday, at the same time, same pizza store and after awhile, same waitress. It has been enjoyable through the years. Our next door neighbor and good friend, Jane, joined us the past couple years. Good conversation over good pizza. Enjoyable. Indigestion to come later but not remembered next Tuesday.
Wednesday – wash the towels and house keeping chores, Paul cooks. — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — The towels do not always happen. Cheryl has kept this activity for herself and I have left it that way. When she has collected the towels she does a clean up in both bathrooms. The real cleaning happens every other week on Wednesday by our niece who operates her own cleaning service.
I have been cooking on and off through our marriage. I prefer to not cook and merely eat but I have discovered that there are some comfort foods that I have become good at cooking and I like my cooking. As Cheryl’s disease has progressed and the whole Covid-19 pandemonium has caused us to stay home even more, I cook more often. Sometimes she eats what I cook. Sometimes she eats little. Things that I think taste good have little taste to her. Parkinson’s has robbed her of her sense of smell.
On a good day, when she cooks, she will ask, Does it smell good? I reply yes it smells wonderful. She smiles wistfully at a memory of that smell and takes a bite of blandness.
Thursday – exercise and go out for dinner. — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — A second fitness class this week occurs on Thursday. A third class would work better for her but Tu-Th is what we have for now.
The class is very different with the Covid-19 restrictions and social separation but PCF is doing their best to support their clients and keep the doors open.
Eventually there will be a vaccine. Often on Thursday we would pick another restaurant to go to for dinner or occasionally a late lunch and dessert for dinner. Covid-19 has often made us cook at home.
Friday – laundry day, Paul cooks again. — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — I took over the laundry duty as time progressed. At first Cheryl was concerned that I would wash her delicate items with the Levi’s. I was able to convince her that I would not do that.
It is my second or third day to cook.
Saturday – coffee cake day — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — Many years ago we would stop at a local donut shop on the way home from church on Sunday.
The donut shop was forced to move by the landlord which was a larger slightly competing store. Not a small bakery but they sold donuts. Sad but it is capitalism at its best. I followed the donut shop to its new location but it took a bit for them to get their store going and it gave me the opportunity to spend more time with baking.
Making coffee cake or sweet rolls or other pastry has become a Saturday routine for me. On Sunday we enjoy it.
Sunday – church and eat the coffee cake — beep, beep, beep; get the meds; help her to take them; in the bathroom; back into the bed for another hour or so — In addition to a priest shortage in the Roman Catholic Church, the Covid-19 plandemic (as my conspiracy theory friends tend to call it) has turned this activity on its head.
Church used to be 9AM mass. Afterward we queued up at the donut shop to get some sugary carbohydrates to snack on while we watched the prerecorded CBS Sunday Morning program when we returned home. Tea for her and coffee for me rounds out the rest of a pleasant relaxing Sunday morning that started by walking to church and back. It is a memory now but we used to get a little exercise, get religion, get breakfast, and get rejuvenated all in one trip. Sadly those days are gone.
Parkinson’s is a progressive disease and over time it became easier to go to the 4:30PM Saturday mass when the 9AM Sunday mass became too hard. There are many contributory factors to this change; poor sleep patterns, reaction to meds, creeping PDD, to name the most important. Nevertheless for a few months our routine became 4:30PM Saturday mass and afterward we would go to a cafe or small restaurant for dinner. Often our friend Jane would join us. On one occasion the pastor joined us. He has Parkinson’s too.
Then boom-chuck-a-lucka. Covid-19, no masses, later no pastor, blending of two parishes, no mass except 10AM Sunday, streaming mass on the internet – not the same thing, going to church anywhere else is not the same. Mass and church is community. Mass anywhere else or on line is not. The church is its people. Its people are the community. The gathering of those in a common rite is comforting and routine. Any other collection of people is something to get through, hence, the thirty-minute mass.
We still enjoy the coffee cake and ponder the safety of going to church prior to a vaccine.
Repeat: Monday – wash the sheets.
I started this story on Monday as I realized that I knew with certainty what activities I would do during the week and I was reading a snippet of a news item somewhere that indicated planners, the paper kind, where of growing interest to the younger generation. Wow, I thought, I really do not need a planner. My daily activities are routine. Maybe even narrow. Perhaps I need to expand and try new things and make them routine.
Parkinson’s disease has a sameness to it. It plods along and then, BOOM-CHUCK-A-LUCKA, it is different.
In this second week of me getting up to bring Cheryl her 7AM meds and get her settled back in bed, there are new things to consider.
As a caregiver it is easy to develop a narrow focus;
As we travel farther down the Parkinson’s road I as caregiver have slowly given over to the idea that little matters if it does not directly enable Cheryl to live a more comfortable life. The idea of this taints any thought, opinion or reading that may occur during the day. It colors the glasses through which I view the world. I love her. She is my world.
As a caregiver it is easy to ignore your own needs;
I like to read. I like to write this little journal blog. I like to ponder things such as the etymology of blog. And why do celebrities make air quotes while talking and for that matter what makes celebrity. I like to tease and poke fun at family and friends on Facebook. The whole concept of Facebook can be both focus narrowing and needy. I like to ride my bike in the heat. It is not bad. There is a breeze. I like to drink coffee. I like to cook for Cheryl but sometimes I like to take her out to dinner. I like to make coffee cake and other bakery treats.
As a caregiver it is hard to give yourself permission to;
Read, journal, ponder, tease on Facebook, ride my bike, drink coffee, make coffee cake — when Cheryl’s needs come first and change from day to day, sometimes hour to hour. Priorities are what I have made them. A niggly little guilt arises in the back of my head whenever I give myself permission to do some things. Things that might take me out of the house for a couple hours, things that might be a benefit to my mental well-being generate a background feeling of ill-ease. It is a sense of what am I missing? what could go wrong?
As a caregiver it is hard to be open to a wider perspective;
The opinions and ideas of others tend to be pushed into the background as you, as caregiver, become certain that you know best. It is creeping arrogance, misplaced righteousness and unfounded expertise that brings you here. Resist that idea. Push back on other’s unsolicited advice but do not resist the ideas of the person you giving care to. You cannot know her innermost fears.
As a caregiver it is hard to be open to help;
I think I have never been open to unsolicited help from anyone about anything. Cheryl’s PD adds a new twist to this. I am open to education and perspective. I seek help when I feel that I have exhausted all resources and have painted myself into a corner or have gotten trapped in a cul-de-sac. But unsolicited expertise from unvetted sources is easily rejected by my thought process. Much like Joe Friday in Drag Net, only the facts, Ma’am, only the facts.
As a caregiver it is tiring to keep educating oneself;
It is, however, the most important activity to do. Keep learning. New therapies and drugs appear. Which are helpful? Which are not?
As a caregiver it is tiring to watch the slow progression;
It is, however, important to be vigilant. The two steps forward with one back or sideways progress of PD is exhausting.
As a caregiver it is hard to breakout of the negativity;
Encouraging entreaties are not readily forthcoming. Parkinson’s disease gets in the way of so many trivial tasks. As the mental component creeps into daily life, it is difficult to see an upside.
As a caregiver it is hard to stay in the moment;
Often the moments are fleeting. The moments are getting fewer. …and the negativity comes back. Parkinson’s truly does suck.
Once in a while I am stunned by how much our world changes and how much it stays the same. E.B. White of Charlotte’s Web fame wrote many essays for the New Yorker during the early to late 20th Century. This is a good one from 1948:
Expediency — 1/31/48
WE HAVE OFTEN WONDERED how journalism schools go about preparing young men and women for newspaperdom and magazineland. An answer came just the other day, in a surprising form. It came from California, via Editor Publisher. We quote:
San Francisco—Public opinion polls are scientific tools which should be used by newspapers to prevent editorial errors of judgment, Dr. Chilton Bush, head of the Division of Journalism at Stanford University, believes.“A publisher is smart to take a poll before he gets his neck out too far,” he said. “Polls provide a better idea of acceptance of newspaper policies.”
We have read this statement half a dozen times, probably in the faint hope that Editor & Publisher might be misquoting Dr. Bush or that we had failed to understand him. But there it stands—a clear guide to the life of expediency, a simple formula for journalism by acceptance, a short essay on how to run a newspaper by saying only the words the public wants to hear said. It seems to us that Dr. Bush hands his students not a sword but a weather vane. Under such conditions, the fourth estate becomes a mere parody of the human intelligence, and had best be turned over to bright birds with split tongues or to monkeys who can make change.
E.B. White – “Writings from the New Yorker 1026 – 1976”
It seems this is still true today. The challenge is to think and listen even if you do not want to hear the message.
E.B. White’s essay in January of 1948 is directed towards journalism and the fourth estate, however, it applies to other situations as well.
Parkinson’s caregivers, be aware of all of the aspects of this annoying disease. Learn everything you can from all sources. Do not accept a future that is bleak and pessimistic. Accept the day as it comes. Be helpful and encouraging. Be aware of your own emotions.
Where is this place? I don’t know where I am. This, a conversation from two days ago, sticks in the front of my thoughts as I write this. Where is her Parkinson’s taking her?
A few weeks ago, Cheryl slept late. After I had been up for an hour I went in to check on her. She was sitting on the edge of the bed waiting for someone to come get her. She thought other people were here. I had been watching TV news.
I dismissed it as early morning muddled mind.
On this morning I was able to get her up to take her meds shortly after the alarm went off. I did this yesterday and she slept for another couple of hours as she had not slept well during the night. She did well after that. I patted myself on the back for getting through a new behavior of sleeping late.
This morning afterward she wanted to sit down on the edge of the bed and I assumed she was going to decide sleep some more or get dressed. My assumption was a bad one. She needed me to stay with her and help her. Later she came out of the bedroom angry with me for not getting her up for church. After a deep breath to swallow an equally angry response I assured her that today is not Sunday and the church service is on Sunday at 10.
On this third day I changed tactics a bit. I brought her meds, helped her to the bathroom and back to bed. I laid with her for a bit until she started snoring gently. I got up.
Checking on her later I found her sleeping on what is usually my side of the bed. I do wish I could see inside her mind to take part in her experience. Her sister and she slept in the same double bed as children. Often in her dreams when her vocalizations are understandable she is talking to her sister. Sometimes she has told me in the dark as her surrogate sister to stay on my side of the bed and quit hogging the covers. (I’m smiling here.)
Her sister is in her thoughts. Jan has spent the last several days in two different hospitals in Florida with blood clots inhibiting breathing. There is no Covid-19 according to the testing but deep vein thrombosis is suspected. She is home now with doctor appointments and physical therapists coming and going. The whole family is worried for her health but especially her childhood bed mate.
Writing this over a period of several days I have come to understand the agonizingly slow progression and the painfully irritating non-linearity of that progress.
In the late afternoon and evening her questions and conversation indicates that she senses others in the room or nearby. These ethereal presences are often young children. Tonight she looked to see who else was joining us for dinner. Later in her office she was talking someone about markers and where they could be found if they needed them to color with.
Her doctor says, if these become troublesome, drugs can be prescribed to combat the symptom. Troublesome how? Miragic little people are rarely trip hazards. I suppose if she trips over things that she cannot see because of the hallucinogenic little people, that would qualify as troublesome.
2AM: I hear the shower running. I felt her get up and realize she is not merely washing her hands. Cheryl does not know what time it is. Or, probably more correctly, she does not have a good sense of – when should I start preparation for church this morning. Church is at 10AM. I get her to turn off the shower and come bad to bed reminding her that it is eight hours away, so, no hurry.
5:30AM: Can I lay down here for a bit? She awakens me and asks permission to lay back down. Sure, I say. Let me help. Did you take a shower?, I ask. She is no longer wearing pajamas. She is in her bathrobe and damp. Yes but I need to lay down for a bit before we go. I help her back into bed and ignore the conversation about what time it is. I’m a little peeved at myself for not detecting her getting up again or hearing the shower run.
6:30AM: She gets up. Most parkie’s have lost their skoocher so in Cheryl’s case when she gets out of bed it is like trying to sleep through an earthquake – magnitude 9-ish. I am still wondering how I slept through her getting up at 5AM.
7AM: I hear the TV come on to the morning news and I relax a bit. I think that she has taken her morning meds and is sitting for a bit watching the news. I relax enough that I fall asleep.
8AM: I get up to see how she is and discover her asleep in her lounge chair. I get some coffee and reheat it in the microwave. I look and find that she has not taken her meds. I get them for her and some water and apple sauce for the sticky ones. She announces that she does not think she can go to church.
8:30AM: She goes back to bed for a nap.
10:15AM: She is up again. We have coffee cake and tea for her , coffee for me.
The days begins again. Parkinson’s disease sucks but there is no reason to loose sleep over it. The loosing sleep part will occur naturally.
She did not sleep well because of thinking about anxiety for family and staying up late – past 11. She was off most of the previous day. More sleep into the morning is impossible.
All indications of the day to come? She is very tired. At 8:30am, I help her back to bed for a nap.
At 10:15am, oh what a beautiful day! She is awake and only off schedule for meds by 15 minutes.
Interesting conversation when she came out — Isn’t it amazing how much this place looks like ours? She said. Whenever I come out on this floor I’m amazed. All the same pictures like we have are hanging up. I agree it is amazing. I say it is very much like our old place.
In our old house we had two floors. She still uses this terminology and I do not correct her. Maybe I inadvertently promoted two floors in her mind? She complains of hunger but is unsure of what will satisfy that hunger. I suggest a couple of the cookies we made a special trip to buy yesterday. She brightens and says yes to that idea.
She is improving while I watch her eat some cookies and OJ. Working the puzzles in the newspaper is her favorite awakening activity.
She seems okay for the moment. I will go back to my baking. When I come back from assembling the fruit pocket with yellow crumb topping the conversation turns to Catholic church and thoughts of a female priesthood.
She ponders the future of any of that and compares it to our used-to-be Sunday dinners. A reminiscent memory of times past brings forth tears of regret and sorrow over experiences lost to time. At our old home – a five bedroom house with plenty of space for kids to roam and adults to sit and converse around the table while waiting for digestion to make room for dessert – we often had many for Sunday dinner. Those days are happy ones. They are fond memories.
These days of a smaller place and dealing with Parkinson’s disease do not allow for that in our home. (It is perhaps time for the children to start that tradition but they seem uninclined to do so.) It is understandable. Their families are young and vibrant. Many distractions occur on the weekend. Feeding old folks is not one of them.
The oven beeper rings out its merry song! The baking is done! The baking is done! Come get the baking. It is done. (smiley face) Here is a picture. The only thing left is the icing but they have to cool for that to occur.
Cherry pocket Coffee cake: my drizzle got away from me.
I like to bake. On another part of this blog I published my Cinnamon rolls. I could go through in laborious detail how I make these coffee cakes. They have become Cheryl’s favorite. I make them often.
In the midst of this scribble my sister-in-law in Florida announced she is negative for Covid-19. That’s really good news but her doctor believes she may have clots developing in her lungs. That is ominous.
She walks by to announce she is taking a shower to get cleaned up. We have our listening for thumps segue and she goes to get cleaned up. All was going well again, but, alas it was time for the 1PM meds. In fact she was late taking them.
This has turned into a rambling account of a day in the life. I did not intend it to be but this day, for whatever reason, is hard on Cheryl. I think that even though she knows there is little she can do for her sister from so far away, she is very anxious about her.
These two women slept in the same bed as children. Often in Cheryl’s dreamlike state in the middle of a semi-dreaming world she will see her sister. She has several times asked me in the morning if Jan had gone home or when did Jan leave? Jan is part of her hallucination that occurs often in the early morning brightening gray light. Their connection is strong through PD and yet their symptoms and treatment are so dissimilar.
We are able to take a walk at about 2:30PM. I admire her persistence. It can be hot in Ohio in July. So we take a walk of about a mile around this little park nearby. It is slow going but we get through it by resting in the shade occasionally. The reward is a stop at a nearby creamy whip ice cream store.
We have decided on waffles with fruit topping for dinner. That was going to be breakfast, then lunch. It became dinner. (smiley face) Things take a little longer in the parkie world. Sometimes you get waffles for supper. Other days not. She is laying down again.
No more pertinent updates from the Florida chat line. The text messages have gone quiet for a while. Perhaps we can sup at 6PM.
There are so many concerns and worries with Parkinson’s that any extra things are a distraction and unappreciated.
My sister-in-law has sent herself to the hospital in Florida because she is having trouble breathing. In addition to PD she is diabetic. Her PD symptoms are different than Cheryl’s but it is still very worrisome. It has been our experience that many hospitals are unequipped to deal with parkies. It is not that they do not understand the disease but clinically they do not seem to get the rigid meds schedule.
In my sister-in-law’s case food intake and timing is extremely important. As well as timing of her diabetes meds.
This of course is on top of the Covid pandemonium and other things going on in our lives. Cheryl is anxious for her sister. I am also. She is far away and the communications are broken by distance and isolation.
The worry continues. And, oh by the way, Parkinson’s sucks!