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.