Words from the Karate Kid and advice given to Drew on B-Positive tonight.
It is always possible the think and over think one’s situation and find a reason to not do something which could easily be very beneficial to one’s own well being. I discover this often with care giving to Cheryl.
Today Cheryl’s cousin-in-law (a relationship I just made up) made a very kind offer to me. Let me back up a bit, her CPAP machine bit the dust. She thought it was merely the cord but as it turned out it was dying long before it bit the dust completely. I brought it home to try to figure it out. Alas I could not. I do not have a manual or even know how it is supposed to operate.
She came to pick it up this morning and as she had never been to our home I showed her around and we chatted for a bit. I mentioned that I was taking Cheryl to her exercise class in about an hour. As she left I walked out to her car and she said that she did not live very far and if I needed someone to sit with Cheryl while I did something or wanted to ride my bike for exercise, she would do that.
I choked me up for a second. A kind and very generous offer of help, freely given, not requested, completely out of the blue. I sent her a text a while later and asked how much warning she might need to do that for me. She only needed a day or so warning and even suggested which days might be best. I thanked her profusely.
I do not ask for help with Cheryl, probably because my maleness gets in the way of that. I am planning, not thinking.
Some days the road seems smoother and less treacherous when you are not focused on the potholes coming up.
In a conversation tonight at dinner, Cheryl became very sad and longing for the past as we started to talk about the holidays coming up. When we were younger we had this huge five bedroom house. Everyone was welcome. My mother and father were still alive. Cheryl’s mother and her gentleman friend, Bob were still alive. Dinners and holidays were loud and raucous with kids coming and going. There was beer and wine. My mother enjoyed gin and tonic. I still order that in a restaurant as a tribute to Mom. We longed for those days. Cheryl became sad in remembrance of those times.
I suppose in a way I did too.
The only constant in life is change. I do not remember if that comes from the Hindu or Buddhist religion but everything is in motion. Embrace the change. Make new memories.
If you let it over take you nostalgia can distract you from the present in much the same way that anxiety about the future does. Most of us have little prescience of what comes next, so anxiety and worry is unwarranted. Our personal history has been lived. Focus on the now.
Many years ago I had a conversation with my father. We had traveled to a local state park near a lake. The idea was to let the kids run around and have a picnic. We were at the little beach area alongside of the lake. The kids were running around having a good time and after a few ounces of refreshments I needed the facilities as did Dad. While standing and staring at the wall inside, my dad remarked that he wished he was a young man again. I think he may have said, “I wish I was eighteen again.” He was making reference to the young girls in their bikinis and his nostalgic memory of youth.
I responded with, “Me, too! But probably for a different reason than you are thinking.”
“When I was eighteen I was still living in your house on your dime. You used to give me money for gas.”, I told him.
“Now I have a wife and three kids to take care of and support. I don’t regret any of that but it was a lot easier when you were taking care of me.” I said.
That is not the exact conversation but merely how I remember it. Dad smiled and remarked that he was not thinking about it that way. Everyone’s nostalgia is different. I had many life conversations with Dad.
Looking back occasionally gives perspective. I realized then that, although ten or fifteen years earlier my life was easier from my perspective, I would not change a thing that was happening now. My now was a wonderful wife, great kids, a wonderful family and a great outing with my children’s grandparents.
It is much the same now. Parkinson’s disease takes a lot of time and although I wish it was not. It is. I am constantly provided with opportunities to be a better husband. Do I want those opportunities? No, I do not but that does not change the fact that with a little bit of attitude change, a little change in perspective I am better at life with my care partner. This is a mutual effort.
So let’s not linger in nostalgic times. They were good times. They are not now times. They are past.
Ghosts and goblins come out during the daytime these days of the covid wind down and the continued concern for small ones who are the ghosts and goblins. We will see no ghosts or goblins unless we go seek them out in their own habitat.
For our own scary feature to today’s activities, Cheryl got up early so I gave her the 7 AM meds at about 6:45 or so and we went back to bed. She got up and dressed at 7:30 while I napped on until 9 AM. (That felt great!) When I came to the kitchen she informed me that she had taken her medicine. She had taken her 10 AM meds at about 8 AM. I need a new system. I think.
It might be a scary day. So far, however, it is not.
Poking around my photos and ones that I could on Facebook has brought back wonderful memories of times before. I cherish them. These pictures are Halloween through the years and my favorite picture of my mom and dad as Raggedy Ann and Andy. (Truman in sunglasses is not Halloween but it is a great picture.)
Recently I learned a new term. Care Partner. I use the term care giver on this blog as I write little stories about our day to day struggles. I think care partner is a better term for what we actually do. Often I care for her. Just as often she cares for me. It is not a one-sided activity. Interestingly enough I poked “care partner” into Google. I am always interested in what sort of images the great alphabet search engine will find. The very first hit on my list is this link to an article about care partner on Parkinsonsdisease.net.
Last evening we attended a gala fund raising event for PCF which is an exercise and social facility that I take Cheryl to three days a week. They had an awards ceremony and passed out what engineers call attaboys. It is nice to be recognized for work and effort for which there is no expectation of reward or recognition.
I was given a “Care Partner ” award. I thought– absolutely, yes. It is better description of what happens. There is no doubt in my mind that Cheryl cares for me as much as I do for her.
The beginning of the shiver months is upon us. I do not want to think about it but it happens every year. Because I am the contact person for our little condo HOA, I get a mailing from our landscape folks that it is time to put some money up to get on the schedule for the ice or snow storm clean up(s) for the new winter season. He usually sends he note out in late September. I always respond to him that I do not want to embrace his message but here is a prepayment anyway. It is the first sign of the shiver months to come.
Today it is raining. Strangely it is a warm rain but it is only three days into the month. Perhaps global warming is real.
Our little family has two important events in October. Two of our grand children have October birthdays. Both Maxwell and Audrey have October birthdays. They are child number two and number three in the same family group. This year they are eighteen and sixteen. Where have the years gone? Happy Birthday to you guys. May God give you long lives, good health and keep you safe. Godspeed.
Covid-19 boosters are here. We are old. We went to Walgreens and got a Pfizer third booster shot. The WHO thinks that it would be better to get the rest of the world vaccinated against this Rush Limbaugh killer cold before us old folks get a booster to stave off the infection but I prefer to be assured that my wife who deals with Parkinson’s and creeping dementia on a daily basis remains safe and healthy. To some that might seem selfish. I think it is merely prudent.
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.
Today was the day to walk or run or ride to raise money for the Sunflower Rev it up for Parkinson. Team SMILE made a good showing. The pictures say it all.
It is a magnificent day on the riverfront in Cincinnati, Ohio. And a large contingent of our family appeared to help Mom, Grandma, Aunt Cheryl and Cheryl raise money for sunflowerrev.org. The fund benefits Parkinson’s disease research here in Cincinnati. It also is a social event that promotes understanding of Parkinson’s and how it affects patients and their families.
Cheryl carries her emotions close to the surface. It seems more so lately. When we received this thank you card today from a great-niece, she was very excited to hear from her. Ally thank you for being so considerate of your great Aunt Cheryl. I responded to her.
Thank you so much for the thank you note and response to our graduation gift. We wish you well in your new career. Can you tell us a little bit about that? What took you to Austin?
As for your questions, the Covid crisis (I prefer pandemonium) in many ways has passed us by. We were vaccinated in January and February at U. C. Health here in Cincinnati. They made it very easy by creating a drive through clinic in the garage of the building that houses Cheryl’s neurologist. In Cheryl’s case they sent her an email notifying her her upcoming appointment with her neurology group and she should make an appointment to get the vaccine by July – and oh by the way here’s a button to click on to set that up. 🙂 She was fully inoculated with the Pfizer vaccine before the end of January. It took me a few weeks longer because I had to set up being a patient at U. C. Health first and then had to wait for a slot to open up but I got both doses by mid-February.
Parkinson’s disease is great practice for staying isolated. Often Cheryl really does not want to do anything. Sometimes I have to push her to get going. She has an exercise class on both Tuesday and Thursday that is oriented towards Parkinson’s patients.
I do not know how much you know about Parkinson’s but it is more than just the jiggly motion with which you may be familiar. Michael J. Fox and his foundation provides a great deal of information and a great deal of money for research. Unfortunately there is no cure (yet) and the disease itself is degenerative. It affects everyone differently. Cheryl’s mobility is generally good with medication but in her case the disease is affecting her cognition and memory. She used to be a whiz at computer databases but now struggles with opening email. 😦
With your graduation card, I suspect she sent it to your grand mother. Cheryl often mistakes who is living with whom and who belongs to which family. I often have found myself correcting that information but it is a never ending task. It is tricky to keep track of your own stuff and someone else’s stuff too. 🙂
If you are interested I whine a bit and muse about things as they are in my life on my little WordPress blog [ www.adjunctwizard.com]. I have discovered over time that your grandfather and I think a lot alike. I did not realize that until a few months before he passed away. I am glad I was able to visit him before that happened. Sometimes I wish that we had been closer when he was alive.
Cheryl’s sister Janice who also lived in Florida passed away from Covid in August of last year. So, the pandemonium has touched our family closely.
We wish you well in your new life. Keep in touch and stay safe.
Best Regards and Godspeed,
Stay safe and be well Ally. May the road always rise up to meet your feet, May the wind always be at your back. Godspeed, young one.
MINTS– For years and years and years Cheryl’s favorite candy was peppermint. She liked it in most any form but we always and still do have a glass candy jar with peppermint lozenges (losengers is how she says it). She no longer eats these. We used to buy big bags of them at Sam’s Club and later we found that we could buy them in bulk at another store. We do not buy them any more because she no longer eats these.
After eating at Skyline Chili restaurant we still get York peppermint patties. We used to also get these at Sam’s Club but Sam’s is closed near us. I buy the stuff we used to get at Sam’s Club from Boxed Up online now. I have not looked for peppermint or York patties online at Boxed because she does not eat them anymore. I am not fond of peppermint.
pancakes – I am a big fan of pancakes. Blueberry pancakes, chocolate chip pancakes, fruit pancakes, it does not matter, all pancakes are good things. Pancakes are better when you do not have to make them. It is better to show up and eat.
For awhile I made pancakes for breakfast two or three times a week. Perhaps I overwhelmed Cheryl with pancakes for breakfast. For a long time when I suggested pancakes she responded that she would rather have cereal.
I am not fond of cereal except hot cereal. I am a big fan of grits and oatmeal if the oatmeal has been helped out with dried fruit and cinnamon. Grits are good anyway they come but cheddar cheese really enhances the experience. Shrimp and grits is just heaven in a bowl.
Lately we have been having pancakes again. Today we had scrambled eggs and toast.
calendar – The calendar seems to have lost its meaningfulness. All though our married life we have had a family calendar to record events. With great ceremony the new calendar is lain on the dining room table in the week between The Christmas and New Year holiday. Known events such as birthdays and anniversaries are individually recorded. Regular meetings are noted as well. Any doctor appointments and such are added. When January first comes around the new calendar replaces the old one on the bulletin board of important stuff and restaurant take out menus.
In the past year or so Cheryl has developed a kind of date dyslexia. The calendar has little meaning for her. Not only is she unsure of the day week but she is unsure of the week itself and how long a month is. I noticed this when she wanted to send birthday cards out for the following month earlier and earlier. One month she sent them out so early that she forgot she had sent them. People towards the end of the month got two and in one case three. I started helping with her birthday card scheme. It sometimes works. She is not very accepting of any method that I create to help. It has to be her scheme. We develop a new scheme each month which is not a satisfactory solution.
HOME – When do you think we will go home? I point out that we are home. Yes, I know we are home but when will we go home? – she says. I have always thought to myself that my sense of home is merely being with her. This thought occurred to me many years ago. These days, since she is on and off unsure of where home is, I think that I am a bit unsure of that myself. I detect her slipping away and that causes caregiver anxiety. Where will home be later?
DECISION – “trying to decide” is a phrase she uses when looking for earrings. Unfortunately in her current state it is a very hard task. This has been true of most of our married life. These days with Parkinson adding a factor of confusion, the deciding is measurably harder.
Overall maybe none of these actually matters but it is very hard as a giver of care. I knew Cheryl during her robust working years. For a couple decades or so after the kids where grown and on their own we focused on career, social life, travel. For several years she supported me while I worked to complete my M. Ed. and find a teaching job. We enjoyed it. Those years were for us. We have no regrets.
These years are ours to enjoy or not. It is our choice.
Today is our 51st wedding anniversary. I took as many of the kids and grand kids as could make it out to dinner yesterday evening to celebrate. It was a very nice meal. Cheryl told me she was grateful to everyone who was able to come and she had a great time. Later when it was time to go to bed she wished me a happy birthday. She said in all the confusion and celebration she had forgotten to do that. I thanked her.
Several weeks ago in early July she gave me this note. She was listing cards to buy at the time and she realized from her notes that our wedding anniversary was coming up in August. I remember on that evening a few weeks back that she was very proud of herself. Her math was still working. I just smiled and agreed with her and kept this note. I think I will always keep it.