As I find things that Cheryl will eat I try to add them to my repertoire of recipes. If I was a better planner and shopper my larder wouldn’t get stocked with random stuff. As it is random stuff is what I have, although, I have become better at shopping the freezer and the pantry and then looking for a nifty recipe. Thank the Lord for Pocket, Kitchen, Cooks Country and Betty Crocker.
Lately I have tried a meal subscription service called Hello Fresh. The first three meal kits – set up for two people – were Shepherd’s Pie, Buffalo Chicken and Flautas. The shepherd’s pie uses common ingredients put together in an entertaining way. The flautas do also. They could be paired with rice and beans which would make them appear as they would in a Mexican restaurant. The buffalo chicken breast was a more normal dish with mashed potatoes and roast broccoli as sides.
Over time dealing with PD we have settled into a weekly routine. Tuesday night is pizza night. Pre-pandemic we would go to a specific small locally owned pizza restaurant. During the pandemonium we carried out from the same place. Often Wednesday night is cafe night. We have a couple local restaurants – diners actually – that we spread our business amongst. We have added several over the years and are always on the hunt for new local restaurants. Sunday if we are not with family is a toss up. The other days not mentioned, I typically cook something.
It is not a rigid schedule. Remember the motto “Carpe Diem” or in a parkie’s case carpe momentum — I try to seize any good time that Cheryl is feeling and we might take a walk in a park somewhere and find lunch. Or we might just go find ice cream at a dairy whip soft serve. In either case the mid day calories will kill off any formal dinner idea I might have had. Sometimes we have breakfast for dinner.
Life is an experiment in many ways. It is also short and one can find that when you get to the end of it, all that crap you were so passionate about really was not that important. Be kind and try new things. Parkinson’s disease is what it is. It does not have to be debilitating. With a little bit of spice here and there it is actually edible. It doesn’t have to suck, sometimes it is chewy.
It is an odd conversation. Made more odd because it was quarter after six and I was in the middle emptying my old bladder for the second time that morning. Standing over the commode about halfway there, the door pops open and Cheryl looks at me for a moment then backs away and closes the door most of the way. I finished up and flushed the toilet.
As I came out of the bathroom, she asked me – you will have to show me how that works sometime. I replied – do you mean the toilet? No, she said. That elevator thing that you came out of. You will have to show me how to work it. Where does it go?
It just comes up from the pill area, I replied. Good! Can you get my pills for me? I’ll take them but I have to go first. She passed me and closed the door to the bathroom.
I got the morning meds from the kitchen. It was not too early. This was the day after the “fall back” idiosy that we have perpetrated on ourselves to get more golf daylight after work. Parkies have a problem with the shift. It is easier in the Autumn but it is still there.
The next day
It had been our usual (for these days) night. She headed to bed at 10PM after taking her night time meds. She laid for a while with an icepack on her head and eventually gave me the icepack to return to the freezer after several trips to the bathroom.
Over night she got up to go once or twice but returned to bed with out any confusing conversation until about 5AM. — some of this is fuzzy to me — She went into the bathroom for a bit and seemed to be having a conversation with someone. (Not unusual – she talks to the spiders before executing them.) She came back out and told me there was a woman in a pink bathrobe that needed to use the bathroom first. I got up and went into the bathroom and removed her pink bathrobe from the door where it was hanging into the closet and closed the door to the closet. I returned to the bathroom and said – she is done now. It is all yours.
She used the toilet, brushed her teeth and returned to bed. I asked about the teeth brushing and she said her mouth did not taste very good. Now her breath was minty fresh. I told her so and she replied with – I love you.
About two hours later at 7AM the incredibly loud and annoying alarm clock brightened itself and loudly pronounced – Time For Medicine! I got up to fetch her morning meds. She got up and went to the bathroom after I set her medicine on the bathroom counter and helped her out of bed which is another normal routine these days.
Afterward she did not come back to bed. Often we lay in bed until she starts to gently snore and I get up quietly as possible and let her nap for a bit or she gets up after about thirty minutes to return to the bathroom. This time she stayed up. I asked – are you coming back to bed? She replied – no, I think I will put some clothes on. I did not probe any further but should have done so.
I got up and fetched the paper, made coffee and settled into the chair I cannot decide about keeping. I turned on the TV to catch up with the boring political news of the day. This is election day. The TV news is like the pre-game show from hell. … it is a nice day outside but the lines are long at the polling places… reports the guy standing outside a poll in New York City down the street from a boarded up Macy’s. Cheryl came out of the bedroom dressed up to go to church or some other gathering requiring an upgraded look.
Do you know who is picking me up?, she asked. I replied – no one yet. You should have some cereal for breakfast. (I was hoping that she would wake up.) She ate a bowl of cereal.
Afterward she went back to the bathroom, I thought, for a second time. As she came back out she said again, I don’t know when they are picking me up. I replied that no one was picking her up to go anywhere. This, of course, did not register as she was convinced that someone was picking her up to go somewhere. When I asked for that detail – where she was going – she replied, I don’t know but they will when they pick me up. She remained agitated and got her keys and went out into the front hall. (I thought she was checking for mail at 8AM.)
She returned and said, there’s no one out there. Do you know when they are coming? I coaxed her over to her chair (The Chair) and got her to sit down. I moved the rocker over so I could sit and look straight at her. And then I explained again that she was probably dreaming when she heard someone tell her that she would get picked up soon to go (wherever). I repeated this message and the one that we where going to her exercise class at noon today and, oh by the way, this is pizza Tuesday. Some of that sunk in through the fog of confusion because she asked again. I’m not going anywhere? No, not yet I replied. To your fitness class around noon, I continued. I look pretty good don’t I, she said. Yes you do. You look very nice, I replied.
I brought her some tea. We watched some more of the pre-game election news madness. She remarked that her watch agreed with the clock on the mantle but the news person had reported a different time. I told her that we were watching a recorded program – a benefit of cable – and we were watching it on a delay of about forty minutes. Oh, she replied and I could tell she understood. She was slowly becoming present.
At 9:30 AM she announced she was going to put on jeans and rest for a bit. I took her the ten o’clock meds at ten. She went to the bathroom and returned to bed and slept for about thirty minutes.
… 11:09 AM — she is back! But tired. She ate some yogurt and drank a little 7-Up.
Changing time zones is one of the more moronic ideas of the twentieth century carried into the twenty-first. China has only one time zone. Think about it and look on a map.
Cyptoquips and Word Jumbles and Sudoku
Her favorite games in the newspaper are these. Even though she may have episodes of confusion, she still works these. They require both logical and expanded thinking – references to puns, etc.
It is the Fall of the year. The time to transition to walking from bike riding. Yesterday I started to do just that. It is cloudy and damp and hot for October but I enjoy walking through several neighborhoods near our home. I will still ride. I bought some kit to hopefully extend my riding into late fall and winter months but today I walked.
In the picture above, someone who lives here enjoys decorating for Halloween. I think I will return in December to see if they have the same enthusiasm for Christmas.
Older folks walk looking down for trip hazards. At least I do. This little guy was getting ready to cross the walk I was on when I happened upon it. As you can see this tortoise has decorated itself for Autumn and blends easily with the oak leaves nearby. I almost missed it but it was startled by my passing and turned to go the other way.
And more Halloween decorations.
Neighborhood walking is entertaining. It appears that I walk about a third of the distance that I ride. Hmm.
Keep moving all you caregivers! Find something that appeals to you and keep it up. Your health and the health of the one you care for depends upon your own good health.
This meditation has guided me through these last few months since I read it. I have edited it a bit for me personally. I try to read it and hold it in my heart each day. In an email from him, James Clear makes points about success, happiness, health, wealth and peace of mind. I try to use mindfulness as a way to reduce my own anxiety and understand what it is that any higher power may have in store for Cheryl and me.
Wealth is the purchases you don’t make.
Spiritual wealth is tied in no fashion to material wealth. Over time Parkinson’s disease has robbed Cheryl of her abilities to control and reconcile our check book. Through our entire fifty years of marriage she has done this family task. My interest was usually – how are we doing this month dear? Are we winning or losing? Her response was often – we are winning but it will be a little tight this month. She is frugal. Material wealth is not in our cards. Neither of us are risk takers. But over time if it is not important for one to have the latest, newest, nicest shiny new object enough material wealth accumulates to see one through to the end.
Spiritual wealth is more illusory. Spiritual wealth requires work. How can I do my best job to acquire more spiritual wealth, more inner peace? What sort of spiritual purchases can I avoid to gain or regain wealth spiritually?
Routine in life is calming to me. Routine provides a place for one to put your thoughts and displace the anxiety that arises from new PD behaviors. But lately, my routine is not my routine. New things seem to get added each week. Like laundry, which I never did in our previously un-parkinsons life. I have adapted to this addition. Friday is now laundry day for clothes. Monday is laundry day for the sheets. Wednesday was for towels and the like but I left this up to Cheryl because every now and again she would decide it was time to clean and part of that was to wash the towels. Over time with her parkie mind it became random. I suppose this is a new routine to be added. Service given freely to others, in my case, my wife, who needs my help provides an opportunity to gain spiritual wealth. Not purchasing the anger that arises from the constant tug of war between my way v. the previous (her) way can help with spiritual wealth. Remaining mindful of the mental fragility that comes with some PD patients may add to stress in a caregiver. Acknowledging that fragility, recognizing the tug of war, and then letting any stress or anger with the disease go often for me gives way to a bit of grief for what is to come and a calmness (acceptance?) of what is to be. This is a sort of meditation.
I think we all long for an easy road regardless of whether we are giving care to someone with a chronic illness or not. I know I do. I long for the pre-parkinson banter. The snide comments and the snappy comebacks would make us laugh. We spent fifty years becoming comfortable with that banter and learning how to push each others button and how to not do so.
From Sunday’s Gospel–MT 21:28-32; ‘What is your opinion? A man had two sons. He went and said to the first, “My boy, go and work in the vineyard today.” He answered, “I will not go,” but afterwards thought better of it and went. The man then went and said the same thing to the second who answered, “Certainly, sir,” but he did not go. Which of the two did the father’s will?’ They said, ‘The first.’ … after this Matthew wanders off into the weeds talking about tax collectors and prostitutes.
This is an odd gospel reading. The first kid responds as a teenager might — nope, not today pops. I’m hangin’ with the guys. Then he changes his mind. He does not apologize. He just goes. The second kid is a liar. Families are complicated. The first child is a reluctant helper. The second child is an asshat. I do not know where Matthew is going with this story and he does not tell us. He goes off into a ditch about the less desirable elements of any societal group.
Greater spiritual wealth is gained by doing for others without grumpiness about it. Lesser spiritual wealth is achieved by doing only. Spiritual wealth is gained in both cases. It is human to grump occasionally. Don’t beat yourself up about it but do not be a liar. Liars are below prostitutes in the social order and they are asshats.
Happiness is the objects you don’t desire.
I desire very little in life. It is a low bar but as long as the money and I run out at about the same time, I am good with that.
Health is the injuries you don’t sustain.
Exercise and eating your veggies add up to relatively good health. Stretching when you get “on in years” is a must. If it hurts, stop! Physical therapists will tell you that over and over. All good advice.
Find some sort of exercise that you can enjoy and stick with it. If you want to body build do it. If you are a runner, do it. If you are a dog walker, do it. If you are a stroller, do it. If you can do yoga and like it, do it.
Take care of your mental health. If you spend a great portion of your day caring for another or others, take time for yourself occasionally. When your grumpiness takes control it is time to go out and find balance.
Do not hurry your relaxation.
Peace of mind is the arguments you don’t engage.
Taking extra meds to fight side effects brought on by the Parkinson’s meds. It is an argument that is unwinnable even without the loopy logic of PD. Stay away from there.
Cheryl first; me second. It use to bug me a bit that she would schedule my time without warning after she quit driving. I became a built in Uber driver. I actually referred to myself as the driver — as in — Do you want to join us for dinner? My reply — Don’t ask me I’m just the driver.
Do not do that to yourself as a caregiver. You are in this too.
Someone else is using my pads. Virginia is making some sandwiches. She is taking care of the baby left here. … it seems that more and more Cheryl is slipping into her own reality. Trying to correct her thinking about what is real and what is delusion merely creates heartache and anxiety.
Avoid the bad to protect the good. — Stay off Facebook and avoid political crapola in your life.
Success is largely the failures you avoid.
Failure can be turned into success if one takes the time to learn from that failure. Life is rarely a straight line.
Thoughtfulness, meditation and mindfulness help to bring peace of mind. These are all different names for prayer.
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.