My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
Frank, I know you are not with us any more and have not been for awhile but I suspect that like Google and Facebook you can watch us, so here is what I want to say to you.
Thank you ever so much for marrying Linda all those years ago when we were young. These days she is an immense help to me and a good friend. As you are aware, her simple act of kindness to Cheryl and me comes in the form of being with Cheryl while I go do something else. Lately that has been riding my bike around Lunken Airport.
When she first started doing this for us I had signed myself up for a care giving class which put great emphasis on making sure that you take care of yourself as a care partner. I asked if Linda could be with Cheryl during those class times and she agreed. I took the “take care of yourself” message to heart and make an extra effort to find help so that I can be on my own for a couple hours.
Since I am seeing Linda more these days, prior to this as you know we met for pizza Tuesday maybe four or five times a year, I think often about our conversations and ponderings in Aunt Dorothy’s kitchen. Do you remember some the questions we posed? How does one determine if sour cream is bad?, for example. I had not thought about it at the time but it was the same sort of thing that would puzzle my dad and I am guessing his brother, your dad. Sometimes small people would run through and we would wonder who they belonged to. Those are good memories. That entire older generation of our family is gone now. Aunt Bert passed away last year. But you know that. Have you talked to her yet? Does dementia go away when you get to heaven?
So, here is a couple questions for you. How are you doing in heaven these days? Is heaven a no smoking area? Is there a smoking section? Or did you give that up?
Did you know grapes are better when they are frozen? I learned that from Sarah’s Luke.
Ray and Shirley passed through town a few days ago. We gathered at Sarah’s house with as many folks as we could conjure up. Not all of your kids were there but some were. Betty and Herb came from Brooksville. Andy was not there but Kyle and Julie were. It was a great time. Ray took a picture:
It was early afternoon. It was about an hour after she had taken a dose of meds. She was standing at the kitchen sink. Her dyskinesia was noticeable. Her conversation was anxious.
She was worried about what was going to happen with the occupational therapist … I think. I tried to convince her to sit and rest for a bit until we had to go there.
I went to putz in my office. Alexa was playing Rod Stewart old standards from his Great American Songbook album. Time after Time came on “… so lucky to be loving you” a waltz or foxtrot. I asked her if she wanted to dance. The song was a favorite of ours. I turned it up a bit and coaxed her into the space between the dining and living area. She put her arms up around me and I did the same. We hugged and danced in place. She burst into tears as some Parkinson’s emotions took over.
Me too. We took a moment to feel a little sad about our current situation. We took a moment to let the emotion wash over us. At that point in time life was overwhelming. We had to let it be overwhelming in order to move forward with life some more. It is okay to lament life for a bit.
The song ended and we sat in the living room. Rod started singing, “I see fields of green, red roses too…” She watched some of the pictures go by on the Frameo that Anna gave her a couple years ago. She cried a little bit more and enjoyed the nostalgia. And then we were ready for life again.
A few days ago the kids and grandkids camped at a nearby state park. Cheryl knew about it. They had exchanged text messages back and forth while the planning went on. I did not talk seriously to Cheryl about it until the day before. If I give her too much to think about she becomes anxious with the planning activity.
I suggested we could stay overnight in the lodge there and visit the kiddos at the campground. She readily agree. I called the lodge desk and THEY HAD HANDICAPPED ACCESS rooms available. I did not ask about their cancellation policy. I was hopeful that Cheryl would still be interested in visiting the kiddos campsite when she woke up tomorrow.
The next day we went. It was a great day. I got the big bed pad out and packed it on the bottom of the big suitcase with extra incontinence solutions so that Cheryl would not have that anxiety all day long. On top of that she packed clothes for a week. Girls need choices. I packed a change of clothes in the little bit of space left in the suitcase.
We got there about 3:30-ish and found the room. I texted David and found out where their camp sites were and cruised through the campground twice after misreading the signs the first time through. We found them unloading coolers and tables and chairs and other stuff. Everybody was busy with something so I parked in an empty campsite across the little drive through the camping area. Luke was loading a cooler with soft drinks. Anna, Laurencia and Virginia were making quick work of erecting a couple tents.
Good times were soon to be had. Frisbee games were unloaded. Eric and Max tossed a baseball back and forth. Corn hole was set up. It is not camping if there is no corn hole set around.
There was great camp food. Our son, David, with Cheryl’s help, current veggies and sausage packets to place on the fire. Cheryl had a great time participating in the food preparation. For a short while she was Mom again. She was talking and cutting. Dad was hanging out with the grandkids and the other adults.
We had some great conversation around the campfire. Parkinson disease interlaced with dementia takes most of the spontaneity out of our living activities these days. I had forgotten about that. I am sincerely grateful that Cheryl was feeling good that day and evening. We both miss the spontaneity of retirement.
And grateful that some of our hoped for spontaneity in retirement was there that day. Twenty-five years ago we would spontaneously decide to disappear on the weekend and hike in the woods or explore some little town we had not been to before. Once we stayed overnight in a bed and breakfast in Chilicothe, Ohio and the B & B was being run by others because the owner was going to Columbus overnight for a cancer treatment. So, we stayed overnight with strangers in someone else’s house. It was amusing and fun and spontaneous.
Tim Scott has a new book. It has just been published so he is making the rounds promoting his new effort. Perhaps merely because he is intelligent and half of the Senate representation from South Carolina but probably also because he is black and Republican, the CBS Morning newsies cannot resist asking questions that have little to do with his book.
To a question about whether he was considering a run for the Presidency of the U. S. he responded, “… You shouldn’t worry what’s next if you haven’t finished what’s now.” He gets my new life philosophy.
Carpe Diem. Latin for seize the day. I use it to end my little posts about various issues Cheryl is dealing with but it is also a reminder to me to stay in the present. Do not linger in lamentation over perceived losses. Stay focused on the now. But do not get so narrow minded that everything has to be “just so.” It can be good enough. (An engineer would add – for who it’s for.)
Do not become anxious about the future unless you are making a list of stuff to take care of before leaving on an extended trip. Worrying about what is to come is of no useful purpose. Plan and if God laughs at you, laugh with Him.
Carpe Diem to me also means stay in the moment. Enjoy this moment. Take a selfie if you want to have a remembrance in some future time. I personally do not understand the selfie thing. Most of the selfies I see on Facebook do not give one a sense of where one is. Occasionally there is a glimpse of beach or Mickey Mouse ears but often the background is some drinking establishment which could be anywhere in the world. I have also noticed that the camera aficionados in my family point the camera away from themselves. Me included.
Cheryl found this image of my youngest sister, Laura and her husband Jeff. They look very happy. Laura looks radiant. They are enjoying the moment. I maintain it is impossible to look this happy and not be happy in your soul.
This picture was made pre-smart phone. It is therefore not a selfie. Many years ago I visited with my west coast sister in Seattle. I was working on a job farther north in Vancouver BC. Walking down Market St. I was nearly clothes-lined by some woman with her selfie stick. It was the first time I had seen a selfie stick. (Oh, I have wandered off into the weeds.)
House centipedes occasionally wander into the house. This morning one went to its demise after scouting for prey in our kitchen. If you read the link to family handyman at the beginning it tells you that you probably should not kill them. Cheryl did not read that article.
Watching that activity, I thought about it from the bug’s point of view…
bug – “doddy-oat doe” Humming to itself. This looks like a good place to hunt as it moves into lighted part of the kitchen floor.
Cheryl – “Eeeeke! Get outta here you!” Lot’s of thumps and bumps while she tries to get up.
bug – “Holy cow there must be some kinda earthquake going on.”, it thinks. It freezes to check its surroundings.
Paul – “What’s happening in there?”
Cheryl – “There’s one of those thousand leggers.” As I come into the kitchen she says, “There it is!”, pointing to the insect hiding under the base cabinet front. I grabbed the fly swatter hanging on the pantry door and handed it to her as Mr. Centipede scampered out of harm’s way under the refrigerator.
Paul – “Here use this it will work better.”
The centipede stayed under the fridge for a few minutes searching for prey and weighing options for escape. Soon the cry erupted, “There you are!” WHACK. WHACK WHACK.
bug – “Damn. Crazy woman. What is up with you? I’m outta here.” It retreated back under the fridge and Cheryl shoved the fly swatter under the front of the refrigerator in an effort to chase the bug out from underneath. It reappeared to the left when Cheryl was probing to the right. She whacked at it some more as it attempted to scurry away.
bug – ” Ow, ow ow. OUCH. That hurts. Why are y…” Centipedes are delicate creatures and tend to disintegrate with a direct hit. This one did just that.
Gone to centipede heaven as dust.
Cheryl – “Got it!”
There is a rule in our house. No bug of any type may live there. No benefit may ameliorate the absoluteness of none.
I laugh now. It is entertaining to watch. I used to worry because of Cheryl’s balance issues. I worried that she would fall down chasing a bug across the floor. And then I realized that often her Parkinson disappeared for a bit. The necessity to cause death to all bugs overrode any Parkinson. In fact she is pretty good at mashing ants with the tip of her cane or the tip of a walker leg. The only thing that needs improvement is her reaction time.
Bug whacking is also pretty good exercise. She will come right out of the chair to bush whack a bug.
It was going to be doughnut day and I forgot. Alas. Woe is me.
Going down this sometimes bumpy, sometimes smooth road of Parkinson, I hunt for ways to make memories. Happy memories. You have to see how Cheryl’s face lights up when there are doughnuts for breakfast. You will know then why getting up early to go find doughnuts is a special memory. Cheerios will not go nearly as far to creation of happiness.
Skeptics will report that doughnuts are not good food. Some will even report that doughnuts are bad for you. Others will discuss yogurt and oat bran and report their studied benefits to those I say malarkey, nonsense and bovine feces. Nothing, absolutely nothing compares to a lightly textured butter enhanced wheat dough gently lofted by yeast plants straining for full growth finished in deep oil at the proper temperature and upon proper cooling, coated with a just-right glaze of sugary vanilla. (I know you can taste it. That is because I am eating one while writing. Darn, sugar on the keyboard.)
I offer only condolences to those with celiac disease. Gluten free donuts are a sad replacement. I offer condolences to those who are lactose intolerant also for they are doomed to enjoy margarine and vegetable oil.
Nevertheless as we returned home from our dinner at a diner and a walk around the park last night, Cheryl expressed an interest in having doughnuts for breakfast. I agreed but at 8 PM those are hard to find and when you do there is little selection. I said I would get up early and go find some. Alas, this morning that thought had not remained with me overnight.
Cheryl got up a little after 8 with no help from me. I heard her stirring in the bathroom and went to be an annoying helicopter care partner. All was well. I asked her what she wanted for breakfast to which she replied, doughnuts! I was initially crestfallen as I had forgotten our discussion. I put on clothing and went to our local IGA to see what was still available in their Busken Bakery cabinet. Fortunately for me the selection still contained kettle danish which is a favorite of hers. I will eat any combination of sugar and wheat dough. No favorites for me, although, my grandson once brought me a maple iced long john which a strip of bacon on top. Yummy. (When you are in Chicago next time find some “fried dough” — fattening but exquisite.)
The day was saved. The crisis was averted. Dip-able things appeared next to my coffee. Perhaps I will make a new pot.
It occurs to me that old married couples have heard each other’s stories many times. Idle pleasantries between acquaintances and friends usually lead into a story about some past experience. It is harder to do with old married couples. They have heard the stories. Often they both participated. Aging and PD memory loss have changed our conversation about trips, children, childhood, food, children’s sports, many things.
I am a pretender often. She may forget who I am as she is talking. She may forget I was there; an hour ago, a week ago, a decade ago. I might forget I was there a decade ago. She wants to remind me of someone else from her childhood, someone I should know.
I work on my small talk with her because she will find a story from her childhood and it is calming to her to tell me the story.
As I think past all of that and how I can help and respond to Cheryl I still worry when she says to me, ” I’m ready to go home now.” She does this near bed time.
Lately she seems to merely mean that she is tired and wants to go to bed and rest.
A couple of months ago I seriously doubted my ability to care for Cheryl on a long term basis and looked into memory care facilities around where we live. There are a lot of them.
Now, after having clicked on the wrong thing on the internet of all knowledge, I am deluged with calls from the marketing folks of all the facilities within a twenty mile radius. The world wide social media network – Facebook (aka Meta) – sends me two types of ads on every other post on my “news feed” advertisements about Parkinson stuff and memory care places.
I suppose I should be smarter about see more when I see it dimly printed at the end of some paragraph I started reading. I suppose I should be smarter about a lot of things but sometimes you want to just see more of the text. Sometimes you merely want to have one question answered up front, “how much?” Used car guys know enough to not answer that question directly. The trick is to keep ’em on the lot and find the lowest possible number where the client says, “I can do that.” It is the whole reason for, “For 50 cents a day, you can feed this orphan in some obscure country.” – ads on television early in the morning. The Shriner’s hospital ads are especially compelling. (Oops, I have digressed.)
I fell for it and probably always will.
On the heels of making that mistake, I did sign myself up for a care giving (care partnering) class that also produced a fount of valuable information without the “scam likely” phone calls coming to my cellphone while driving somewhere.
The class itself has given me new insight into how important it is for me to seek out help from others around me, take time for myself to do the things that I enjoy doing, and to give those things and myself priority in my (and our) life. I have at the same time become aware of not dumping on friends and family to “take care of Cheryl” for me. Most of the time in the daylight Cheryl can take care of herself.
I do not have Parkinson disease but Cheryl does. In order for me to stay healthy enough to care for her, I have to stay healthy both physically and emotionally. I thought to write mentally also but emotionally covers it. I use the term anger but that to me means -frustration, disappointment, anxiety, sadness mixed with a little collegiality and a lot of empathy and love. And maybe a little grief is there too.
I have written this before I truly hate this affliction and what it has taken from her but I have to be as upbeat as I can about things. Some days that is harder than others.
It is easy to tell when Cheryl is feeling good. She will start cleaning.
My go-to cleaning person is my niece, Natalie. She comes over for a couple hours every other week and dusts everything, mops floors, runs the vacuum.
I tease her about touching all my pictures and stuff. I do not watch her every move. I pick up all the towels and throw them in the washer.
But at other times, when Cheryl is feeling good she cleans for awhile. I suppose it makes her feel useful. When we were younger and she was without parkinson she would clean at random intervals. I think it was a calming mindless activity to her then and is a familiar activity now.
Cheryl Hughes posted this article in her blog which made me think about the helpful folks around us.
Last evening we had dinner with Cheryl’s sister Nancy. We have been doing this more and more. It is helpful to me in a couple ways that Nancy might not think about. Nancy, firstly, is not dealing with any dementia. Her conversation seems to go in a straight line. That fact by itself often provides relief to me. Over the course of my working career I traveled to other countries and many of these did not have english as their base language. It was always a great relief to hear American english from the people around you waiting for an airplane back to the states. Cheryl’s mingled conversation is much like trying to make sense of a foreign language with little preparation.
The second thing is that when Nancy talks to Cheryl she is accepting of whatever Cheryl might say. Cheryl tells her about the children in our house, their sister Janice and other thoughts as they occur. Nancy does not correct or suggest anything different. Sometimes she will ask for clarification if Cheryl has mixed up names or dates. Cheryl recognizes that she does mix things up but she does not have the stress of keeping the story straight. That is stressful to her, saying the right thing; giving the right answer; not offending anyone. She learned those from her mother and they are deeply ingrained in her personality. When talking to Nancy she relaxes. (Thanks, Nancy.)
Cheryl’s cousin’s wife Cindy began coming over to sit with Cheryl or take her to one of her exercise classes once a week for a couple hours. I am free to do whatever. (Thanks, Cindy.) These days in the warm summer Ohio air, I often go ride my bike somewhere. Cindy surprised me last Fall by asking me what I did for exercise after a discussion about Cheryl’s exercise classes. One of Cheryl’s instructors was a friend of Cindy’s. Cindy spontaneously offered to come and be with Cheryl while I did something else other than care give. It took me several weeks to figure out what to do with my new found freedom and now I look forward to it.
My son David and his wife Melissa have a wonderful patio and a big green backyard. Many times with little warning I have asked to come visit for a bit with Cheryl. Cheryl likes to visit her children and see how they are doing. Sitting on their patio in the sun brightens her mood. It gets us out of our little condo and does not require a lot of preparation by me. It is a sort of little day trip for her and I can chat with my son who is a fellow engineer. (smiley face)
They have always responded with yes. (One time they were out of town on a spontaneous getaway weekend.) Thanks, David and Melissa.
My son Scott sits with his mom while I go to my stock-club meeting once a month. (Thanks, Scott.) In 1984 several of us engineers decided to make ourselves rich by speculating in the stock market. We started meeting in March of that year. The markets have soared and ebbed. We languished through “black Friday”. We bought gold mining companies. We sold gold mining companies. We drank a lot of beer discussing and criticizing corporate management. We have won big (ABBV) and lost big (F). Good friends and lots of beer with dinner in the back room of the bar makes for a fun evening. (Thanks again, Scott.)
I have also parked Cheryl at Scott and Mavis’s house near us so that I could ride my new ebike around our old neighborhood. Cheryl could see Zachary – the newest grandchild – run around while I was riding. (Thanks, Zachary.)
My daughter Anna visit’s with her mom and in the summertime when her high school is on break takes her mom to exercise class. Last summer Anna stayed with her mom for a week while I went to visit my sister on the west coast and we attended my nephew’s wedding. Jeff and Stephanie have a new baby girl. (Thanks, Anna.)
Our next door neighbor, Jane, comes on Mondays typically to sit with Cheryl for a bit while I go ride my bike around somewhere. Cheryl sometimes walks across the hallway to visit with Jane. She is a good friend and close. Often Jane goes with us on “anything goes pizza Tuesday”. She reacts to Cheryl’s discussion much like Nancy does. Over the years Jane has had issues with her health and Cheryl’s first thought is to see how Jane is doing. Jane has pointed out things to me that she notices about Cheryl and has suggested solutions for those without any judgement. (Thanks, Jane.)
My cousin’s widow, Linda sits with Cheryl while I go do something else. Most recently I signed myself up for a caregiver’s class to find out about other services that were available. Linda came over fairly early in the morning so that I could attend this class. I found the class itself very useful. It was primarily oriented towards care partner health and well-being. (Thanks, Linda.)
I appreciate everyone’s help whether it is a small thing or a big thing. Sometimes it is a phone call. Sometimes it is merely joining us for dinner after church. Sometimes it is taking the roll of care partner for a couple hours. Sometimes it is staying with mom while dad goes somewhere for an hour or a week. I love you all. Thanks so much for helping.
Adjunct_Wizard 