My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
It was my fault. I thought it would be a good thing to take her shopping. The target was J C Penney. The goal was towels. In retrospect I could have selected a different path through the store. The Men’s clothing aisle also leads to the home part of the store. (An AHA moment.)
She found a purse and looked at wallets but none were satisfactory. Or maybe I was an ache in the posterior. She told me she never gets to go shopping very much anymore. She is right. I probably also help guide her maybe more than I should.
From a male perspective this was worse than looking at a menu in an unfamiliar restaurant. It was overwhelming choices of color and style.
We did find towels and a bathmat. In the home area she told me that she likes bold colors. She selected a sort of hunter green, harvest gold and creamy white. She ignored the fuscia, orange, purple and tomato red. Our bathrooms are light green.
Gift wrap at a department store was free for purchases from that store. The malls often had a bunch of girl scouts or boy scouts wrapping boxes and raising money for their troop. If you did not want to get stuff wrapped boxes were available from the department store. (With their logo)
That slowly faded away over time. It was part of the season and might still be there but I have not shopped in a department store for several years. Parkinson disease interlaced with dementia does not enable that to occur with ease. I lament that fact.
This year we did spend some time shopping at J C Penney. Cheryl has always liked Penney’s store. It is one of the few department store chains still surviving after Federated Department Stores sucked up many of the littler ones and became Macy’s. A couple days ago a nice gentleman gave us a couple coupons on the way in the door at J C Penney and bid us well as we began our shopping experience. Later when we had a bunch of carefully selected gifts piled onto Cheryl’s walker and headed to the front to purchase them, he saw us coming and as the line to check out was long he asked the woman staffing the cosmetics counter who was idle to check us out. She smiled and said sure she would do that.
As we approached the counter to do that another frantic old woman who had just come in the door barged in front of us and asked the cosmetic counter staff if she could “pay her bill here” because the line was too long to stand in.
Two things I have not thought about perhaps ever in my life; driving to the actual department store to make a minimum payment on an invoice that was sent to me via USPS, something that can be done by return mail and manifesting surprise at the length of the checkout line at 1 PM on a Sunday afternoon two weeks before Christmas. Perhaps she could not afford a stamp or did not have a stamp and the bill was due on Monday. This woman decided to chat with me about those things while the woman behind the counter opened a different computer to access the billing records and accept the $35 minimum payment on her J C Penney account and applied it to the customer’s Visa account. It is easy to understand how cash strapped elderly women get over their head in debt. (Sorry, that was unkind.) I did not chat. I merely stood silent and waited while Cheryl stood there looking tired.
Eventually the nitwit was gone and the cosmetic woman picked up our purchases on her counter and said, I need to get some larger shopping bags. She was gone for about 20 seconds. She checked us out and I helped put the stuff in the bags because she had very little space on her cosmetics counter.
We completed our purchase and I thanked the woman for allowing us to check out with her. She smiled. Perhaps no one had thanked her for helping them that day.
As we left the store I noticed that the long line had dissipated. I remarked about that to the gentleman who was still staffing the door passing out coupons. He smiled and wished us a good afternoon.
It was a less than brilliant idea of mine. We are backing into full on Christmas shopping mode. Today as we left her exercise class Cheryl asked, What should we have for lunch? Usually she is asking what sorts of leftover foods are in residence in our refrigerator. While I am stalling to think about what is in the fridge I asked her if she wanted to go to lunch in our favorite diner. She said yes.
Our neighbor works at this little lunch place in our little town. Carrie was working this day and we chatted and caught up for a bit. We had lunch and Cheryl mentioned that she thought there was something she needed to shop for but could not remember what it was. I was my helpful self and reminded her that she wanted to get some new slippers. I had bought her some Minetonka moccasins a couple years ago online and she had worn them enough that they were getting beat up. I suggested that we could find a shoe store and look for slippers. (FOOLISH MAN) I found the nearest Shoe Carnival and after checking online discovered that they had a couple varieties of lady’s slippers to choose from. (Why do I make suggestions and eventually order for her in a restaurant and never transfer that information to other similar situations. Why?)
I am taking her to a shoe store. (foolish man) Their slippers are in the back near the clearance racks. Foolish men think that they are going to zip in, get some slippers that fit, and slip out. That is why they are referred to as foolish ignorant men. Part of the X that men do not get at birth lies on the 27th chromosome near the end – SHOPPINGFORSHOES – the shopping sequence genome. The combination of the leather, vinyl, foam and cardboard pheromones commingle to trigger this gene sequence into action. It is remarkable that even a dopamine deficiency can be overwhelmed by this gene to enable the lame to walk with confidence. All balance issues disappear. A study should be made about this phenomenon.
I realized that I had taken her to a place that was significantly worse than a restaurant menu. I gave in and helped. We rejected with sadness all four-inch heels (although there was a woman my daughter’s age there shopping nearby that looked good in them.) Also rejected were those with pointy toe boxes on them. Too much toe repair to fit in that configuration any longer. Cheryl has walking shoes, some slippers and a couple pairs of Easy Spirit black flats. She has no lighter beige/tan/sand colored shoes if she is looking for “something different”. She wanted to think about and make a list of candidates for later. I suggested I could take pictures of the boxes to save for later. She replied that’s a good idea. After an hour and a half we left with pictures, notes and slippers.
In her blog, Cheryl Hughes, writes that many times it is better to “just let go”. She spent many years as care partner for her husband.
I have decided to do that in many ways. If I decide that we are having salad for dinner, I buy a bag of salad. Salad kits are available. It is way easier than chopping stuff. And there is enough for four typically so if you want lunch the next day you are good.
It can cost a little more but what is the harm in embracing the changes as a care partner. My Cheryl believes that Christmas is any minute now. Until a week or so ago I was resistant and felt the need to correct her thinking. What ever for? Why generate artificial stress? She will not remember being incorrect, she only remember that I think her to be wrong when she is certain that she is correct. I could embrace the fact that Christmas is next week and we should put up the decorations.
We got a catalog from Amazon which is unusual by itself but it has kid’s toys in it. I cynically remarked sometime ago about getting Raggedy Ann for our daughter and Anna chided me with – I am totally okay with Raggedy Ann! It could be fun. Between decorating actions my Cheryl searches through several cookie options in the Cheryl’s cookies catalog (too many Cheryl’s in this story) and looks for the perfect Christmas cards in the Printery catalog. Sometimes she is telling me about cards, sometimes cookies. What could be the best one or two? Of each?
The Christmas elf is sitting in the chair ready to help Santa. HO HO HO is on the front door. The little wooden Santa is falling off the closet door. Knitted Santa is on the clock. The inside of the front and side doors are decorated so that Santa cannot get in without being noticed. The decorations are moving along nicely.
Eddie bear always gets booted from his seat next to the telephone. He lost his telephone long ago. He seems to be okay with the rocker and he has a place to hang his elf hat.
Anna makes me smile as I think about it and she is right. It could be fun to shop for gifts for the kids and grandkids. Perhaps I should embrace it. What difference is it if Christmas is a months long event? So I told myself a few days ago that we would go for it.
Now that the decision is made, we should be shopping for the kids.
We need to find sizes or which toys suit which kid best. Laurencia likes puzzles and building things. Virginia is crafty and plays trumpet. Vinny likes Lego kits. Gavin is into online gaming. Regan is off to college next year. Audrey is a dancer. Ellie? Dillon? Luke delivers pizza but his passion is photographic art. Lots to think about. Have I forgot anyone? I have got to find Raggedy Ann for Anna. Yep, lots to think about.
Cheryl has powerful childhood memories about the holiday season. There were many good times, parties, family gatherings and fun. Perhaps it is time to make some new ones.
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.
Punding certainly can be challenging to recover from during lucid episodes.
In our latest distressful activity, she has lost part of the equipment she uses for a pedicure. I have no doubt that she had it in her hand when she decided to do something after its last use. And it became “organized” somewhere. I may be wrong but we will see. She says that people move her stuff around and sometimes hide it.
Gone now to that special place so that it would not become lost.
Perhaps a trip to the local Walgreens will help. Maybe I will buy two kits.
Every morning at 7AM the extremely LOUD, BRIGHT AND ANNOYING alarm clock sounds its happy tune to remind us that it is time for Cheryl’s first dose of various meds. My job is to get up and find them. I get a glass of water and bring them back to the bathroom. All of this disturbance usually awakens Cheryl. I help her get up and shuffle into the bathroom to the toilet and then to the counter to take her meds.
Her fingers may not be working well in the right-after-get-up time. At 7AM and a little, she dropped one on the floor. I got her to take the rest of her meds and eased her back to bed. I laid down too after finding that the little white pill she dropped was to combat her orthostatic hypotension which is low blood pressure associated with Parkinson disease. I put this pill with her vitamins that she took later while eating breakfast.
She takes midodrine to combat the hypotension. Generally it seems to work. This morning when she took it separate from her other meds but with her vitamins and shredded wheat, she became lightheaded and fainty feeling. When one checks out the link I have provided, one finds a wearying array of side effects, all of which or none of which are associated with other meds that she takes.
This morning she fainted while I was talking to her. She was looking gray in the face at the time. I helped her to the floor and propped her legs up on a chair. I sat on the floor with her for a bit until she felt like she could sit up. I outweigh Cheryl by about a hundred pounds or so and to me she feels pretty light. I also forget that we are the same age and that means neither of use is twenty-two anymore. Nevertheless I help her up by positioning a chair nearby and she pulls herself up or I get behind her and lift her straight up with my legs. I probably should not lift her but she really does not weigh much in my mind.
While writing about these little happenstances in our life with PD I run across a world of information about what to do and who to call. This website (https://seniorsafetyadvice.com/about-us-2/) is a wealth of information.
It has been awhile since Cheryl fainted while eating breakfast. A couple years ago it was sort of common and occurred maybe once every other week or so. It was so commonplace that I staged a pillow from our couch in one of the kitchen chairs to put under her head for a bit while she was laying on the kitchen floor recovering. Thinking back on it, it crept into our lives so gradually that the two old people living this Parkinson life thought little of it other than, oh crap another new thing to deal with.
A casual mention in conversation to the medical team in a visit a couple years ago caused Maureen to give me the “stink” eye look which said to me, when were you going to mention this? I realized fainting is not a good thing or even a thing that we should merely deal with over time. She gave Cheryl a prescription for midodrine and instructions to take two when you get up and two more during the day spread out. Later this was adjusted to one in the morning, one mid-day, one no later than three hours before bedtime. I now had a use for all seven boxes of our meds organizer.
I found this a couple years ago on Amazon. Ours has black lettering and I created a chart to stick inside the lid.
A pretty long story but in addition to this little blog of mine I have started a little log of anomalous activities and the surrounding circumstances. The doctors and nurses are not looking at Cheryl every day. That is on me.
I got up at about half after eight. We had been up at 7AM for meds and she went back to bed. I knew she had not slept well overnight. As I got up and she headed toward the bathroom, I talked about what the days events would bring. We have nothing on the calendar except for the exercise class, I told her. There is no church today. Today is Thursday. Yes, she replied.
I went to the kitchen to make coffee. As the beans were grinding I went out to fetch the newspapers. When I returned I set the coffee maker to making coffee and turned on the CBS This Morning show while waiting impatiently for the coffee maker to complete its task. Finally after an arduous four or five minutes where the succulent aroma wafted through our small living area the coffee genie made its happy gurgle and later a tiny beep. I poured a cup. Heaven is fresh bread straight from the oven and fresh coffee made from beans ground only moments before.
I carried my mug to my chair purchased during the waning days of the Trump administration with stimulus funds. I restarted the DVR recording so that I would not miss any of the covid, border, weather or political disasters. I nestled in for the first sip and looked at the WSJ front page. I few minutes later I checked and she was getting ready for church. I was in time to head that off with a minimum of anger from her that “no one tells me what’s going on”.
As I headed that off I reiterated that she did have exercise class today and she should dress for that.
After enjoying much more of my mug of joe I returned to check on her. She reported numb fingers and she was angry about it because it was causing her to drop things – her watch – and making it hard for her to put in her earrings. She thought she had broken her watch so she selected a different one.
The watch she was trying to put on was one which she rarely wore. It has a clasp that is hard to visualize even with the new reading glasses I got recently.
Cereal for breakfast this morning and a new thing – checking blood pressure – because of the numb fingers were at the top of her list once she came out of the bedroom dressed and ready for exercise. We left for PCF right on time. And then as we approached the parking area, zip, unzip, zip again, unzip again, different zip, the same zip as previous over again — I asked what are you missing? My little pill bottle. I want to find a Hall’s she told me. I helped her search to no avail.
Damn! We are out of Hall’s. It is the only, absolutely the only thing, that can relieve a Cheryl scratchy throat. (I am whining a bit. I have tried to push other solutions. All have been rejected, alas.) The fact that we are out was interpreted by me over time after a discussion about the Hall’s being kept in the upstairs bathroom cabinet so that the hallucinatory kids would not find them. (Smiley face) But we are out. I did not register the out part.
Later at PCF we searched the purple multiple zippered perfect purse but, alas again, no Hall’s in the little pill bottle. It fact there was no pill bottle. Where is that? It is not in the many zippered bag.
I left Cheryl to start her exercises and I went to Walgreens down the street to stand in line behind three people grocery shopping at Walgreens while I hold a bag of Hall’s that eventually cost me thirty-nine cents. I should not be a curmudgeon about it. I own Walgreens-Boots stock.
Cheryl really did not use a purse much. She had one she used when the children were small but with small children there is a lot of extra baggage and equipment so overtime she consolidated everything. So it is my recollection that she did not carry a purse but I am thinking that is probably incorrect.
As her neurological condition degenerated I encouraged her to carry a purse. I helped her find a purse that had a long strap that she could drape over her shoulder and would not require her to keep a hold of it with one hand. She needed more and more to have hands free to keep her balance and grab me or the door frame or the car or the back of a chair or the back of a bench or a stair rail or something.
The first bag I helped her find was a smallish brown leather purse that was perhaps 10 inches by 8 inches and a depth of 4 inches. She carried little with her. In my maleness it seemed adequately sized for the couple of things that had to go along. Glasses case, small wallet, keys, a pen or two, a small package of tissues, this purse had room aplenty for all of these. We left Target with our prize one evening after eating in Frisch’s restaurant across the road from Target.
Two things happened over a period of weeks. The strap, although it seemed adequate at the time became inadequate. The capacity mysteriously reduced in much the same fashion as a cotton T-shirt that had resided too often in a hot water bath to be cleansed.
Back at our favorite Target store we found a somewhat larger green cloth purse with a different style of strap which I thought could be made much longer. Alas I was foiled by the fact that the straps did not get longer as it first appeared. The straps converted the purse to a mini back pack. Unsure of what to do about that situation or whether it might prove useful for Cheryl, we gave it to one of our granddaughters who happened to be visiting a few days later.
The selection at Target seemed to be shrinking. I started to search Amazon for a suitable new carryall to replace the rapidly shrinking brown artificial leather messenger bag. One night the pinkish purple purse appeared in my Amazon search window. It is available in other colors and made of a canvas material. Most importantly Cheryl likes it.
It has other features that are not readily apparent. It has a total of five zippered compartments. These provide the entertaining feature of hiding most anything that Cheryl puts in there. Additionally there are several internal zippers that provide further confusion for any parkie. It is, even without these extra attractive accouterments, a fine messenger bag with plenty compartments to organize one’s stuff whatever that stuff may be.
This purse can be a distraction and an entertainment. Cheryl often zips and unzips one or two or three zippers as soon as she spies this purse benignly resting on the edge of the table as it is shown above. It is a delicate dance between her and the bag. Men cannot understand the attraction to the zippered compartments.
Parkinsonism must provide a bit of obsessive-compulsive attraction to the zip itself. Much like a fidget spinner the zipping happens but somewhere in her thought process she puts stuff in, maybe takes it out, maybe not, maybe moves it so that it is in a better situation.
She seems in no hurry to disparage this bag and it features. Sometime she will complain that it has too much in it. That is good information.
I try to unobtrusively observe where she has placed objects in the purse. I often place her medications in her purse before we go somewhere if we might not return before the next dose. Have you ever watched the guy with three cups upside down a pea or a pebble underneath one of them. Same thing with the zippers if close attention is not paid.
Adjunct_Wizard 