In Cheryl’s case, decisions can be remarkably difficult. They are made worse by deadlines. Lack of understanding of the day or next event add on difficulty. The decision to day is – what to wear?
Parkinson is a big enough trial when it is only a mobility issue. When cognitive function is affected. It is just plain harder. You as a care partner can help with calmness or not. That thought sent me off into mindfulness and discernment about how to help by not emphasizing the time.
Today is the date of the Sunflower Rev it up for Parkinson’s symposium. It is an information and exercise presentation by UC Health in Cincinnati. And we are getting a late start.
Although we had talked about it last night before bed and I had emphasized getting to bed on time, so that we could get up on time. Admittedly this morning I cared little about going to the symposium but it is a useful thing to Cheryl and occasionally I learn something new. When the alarm went off she awakened but showed little interest in getting up. After some reluctance I encouraged her to get up and have some cereal to get started.
The wild enthusiasm for life, a better life with Parkinson can be intimidating to those of us who through our new duties of care partner and might have been hoping for a more relaxed environment in later life. So when Cheryl started hinting at not feeling up to going I seized on it but perhaps a little to enthusiastically because she changed her mind with little time to spare and we left. But not before I gained the opportunity to point out the lateness of the hour.
Thank God for the great science interspersed between the impromptu exercise. The lecture portion is familiar and reminiscent of many college courses from my earlier years. Bliss.
In a presentation about new chemicals and old standard chemicals I notice that most have the same set of side effects. The side benefits seem to alternate between diarrhea and constipation, insomnia and narcolepsy, yadda yadda yadda. Of course the doctors and scientists would prefer that patients not focus on the side benefits but those are still there whether you ignore them or not.
A gentleman told his personal story about PD and his journey. Being an ex-football player and wrestler in college he was attracted by the various boxing style PD programs. Rock Steady Boxing was founded in 2006 to empower people with Parkinson’s disease (PD) to fight back through a non-contact, boxing-style fitness regimen and emotional support. The program started in a tiny gym in Indianapolis, Indiana. His coach told him – If it is to be, it is up to me. (Inspirational) He and some others have formed a group – Romeo (retired old men eating out). Social gatherings are important . One can never give up.
There are things you can do that will make things easier like, no button down shirts.
There’s no hope without data reported Kim who is a research scientist. I like the science. I hate the disease. I do not know where my attitude is today. Perhaps it is still in bed thinking about a Saturday sleep in and then a visit to my son’s house for the fantasy football draft festivities.
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:
She fainted this morning. She has not fainted for a long time. Orthostatic hypotension. In Cheryl’s case in the past she would faint sitting at the table after breakfast. She reads the paper and absorbs her Cheerios and occasionally faints. But she has not passed out for a long time. She takes a pill intended to raise her blood pressure. I started this post on August 11. As she exercises in front of me on August 23rd I am finishing my thoughts.
Breakfast is/was monkey bread. A local bakery makes a coffee cake composed of balls of sugary dough rolled in butter, brown sugar and cinnamon. These are pressed into the pan and allowed to proof. They call it monkey bread. A different small neighborhood bakery I knew as a child called it by the less imaginative title of “pullapart”. It is easy t make. It contains a lot of sugar which makes me wonder if that or some other carbohydrate metabolism reduces her BP.
She is generally a little foggy after a fainting episode. Her shower and dressing afterward needed instructions and encouragement. It is exercise class day and I will not let her miss it. I am a stinker about that but exercise always perks her up.
Exercise is seated cardio class introduction. There are a lot of dance moves and some upper body boxing style motions. The idea is to raise your heart rate into what experts call a cardio workout. It is a new thing for Cheryl. the leader, Joelle, is a substitute today and she teaches this style of exercise class on two days that Cheryl does not come to PCF. On the way home Cheryl told me she liked the exercise class. I can get her to exercise class four times a week.
Makes me cry to see her going again, especially after I had to lay her on the kitchen floor to recover from her fainting spell about 2 hours ago. Joelle is playing “Summer Wind” by Frank Sinatra on her Bose speaker laying on the floor of the exercise area. This music is nostalgic for me. I used it for background when I put together a slide show of pictures from a cruise trip we took many years ago that was purchased for us by our daughter and her husband.
When I got home today I looked high and low for pictures from that trip to insert here but, alas, I am a poor filer. The pictures are somewhere. Maybe.
Cheryl asked me – When is Thanksgiving? I told her the last week in November. We moved from there to me explaining it was still four months away. We were on the way to two appointments yesterday. It was earlier than I would typically schedule anything for Cheryl but in a weak moment on the phone with a scheduler who was trying to consolidate trips, I gave in.
Today she is part of a research study. The MOCA assessment is part of the study. There are many other instruments used. Some of these are poorly designed but in a way that is part of the assessment overall.
Physical assessment involves weak side motion testing. Resting tremors in different positions. The neurologist researcher wanted to test her walking but she was unable to do that unaided. After all of this Cheryl donated a blood sample and a urine sample.
We went from there to a scheduled visit with the nurse practitioner who works with her movement specialist. Maureen says that physically Cheryl assesses the same as when she last saw her in January.
She complained of tiredness afterward so we went home instead of to lunch somewhere. Cheryl thanked me for taking her to all her appointments and making sure she did not miss any.
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.
Nice. But she has slept for about ten hours so far. I know that everyone sleeps for different amounts of time and Cheryl has been struggling to sleep well the past two days but I worry about the changes in her sleep pattern.
And at the same time when I look inside my own self and think about it, I cannot change how she feels. I cannot change how the disease progresses in her metabolism. I can make her comfortable.
Recently Cheryl Hughes wrote about quality of life and what that means to her and her husband while he was still alive. She makes some good points but I ponder about my view of quality of life is something that I have projected onto Cheryl.
Perhaps on some days she needs twelve hours of sleep. Perhaps on other days she will need a mere four hours. (Those days will be tough.) As her care partner I hope that I can understand that nuance and help her rather than being angry. Angry is a label I place on feelings of anxiety, worry, concern, and empathy for her as her body deals with this debilitating debacle.
It may be all for naught. Recently we got our second covid booster. Perhaps she is reacting to that shot. Neither she nor I had any real reaction other than a sore arm with any of the shots so far. It is simply not understandable what is Parkinson and what is not. It is easy to blame the parkinson when most things are simply old age. Her sometimes in and out dementia inhibits how she tells me what she is feeling. I attempt to be patient and understanding. Sometimes my attempts fall sort.
Are you gonna help me sing?
Some people live their dreams Some people close their eyes Some people’s destiny Passes by
There are no guarantees There are no alibis That’s how our love must be Don’t ask why
She is slowly waking up in the bedroom. A new day dawns. I have Alexa playing music by Toto. They were on CBS Sunday Morning today. Perhaps I will get to ride my bike today.
In my never ending battle to keep us safe and healthy and because Cheryl kept pressing me to do it, I scheduled us for a second booster shoot for the covid virus yesterday.
I got some chicken out of the freezer for dinner and helped her get moving in the morning. The morning was busy for me because it was my last care partner class. From that I have a mountain of valuable information about various service providers for the future. We are not there yet but in a few years we will be.
Linda appeared a little early and we chatted for a bit and then I was off to class. When I returned Cheryl had gotten cleaned up and dressed herself. I think the big new bed is giving us better rest overnight.
Our appointments at Walgreens were scheduled for 4 PM and 4:10 PM. We got to the store with plenty of time to fill out forms and prove who we are. Except for me. I had forgotten my wallet and ID. (Alas and drat!) As Cheryl came down the aisle pushing her U-Step walker I explained that I had forgotten my wallet. I asked her to sit down near the pharmacy desk and I would return in a few minutes. This Walgreens is about 5 minutes from our house. I zipped home and back to the store. When I returned she was sitting in the chair filling out a form on the clip board that the pharmacy assistant had given to her. Ordinarily this small task would have been confusing and incomprehensible to her. She had even found her ID and previous covid info in the purse of many pockets. I am beginning to understand that much of her confusion and mental fog of late may merely be poor sleeping patterns.
It is hard to overemphasize how important good sleep and rest is. The big new bed seems to help. One less Carbdopa/Levadopa CR seems to be beneficial also. She seems brighter during the day and not so inclined to pund around in her office at night. She is sitting in her recliner with me to watch a show or read a magazine article more during the past couple weeks.
She had plenty to eat at dinner. She even complained that I had not made gravy to go with the chicken. It was a normal (mostly) conversation during dinner between two people who had been married for 53 years. (Smiley face here) Later in the evening she felt a little chilled. I went to recover her sweater from the backseat of the car where it had been warming in the 90 degree heat for several days. We sat for a bit longer and then she got ready for bed. She returned and we watched the PBS show NOVA for an hour and we went to bed at 11 PM.
We were up again at 1 AM until about 3 AM. I am going to blame the booster shot. I was having difficulty also.
Today we slept until after 9 am. She seems rested. I know I am. It is off to the doctor today for our semi-annual wellness check. I feel well. She seems well.
Last night at support group which is a joint support group, by that I mean some care partners, some Parkinson patients, the conversation was centered on care partners and the difficulty of that activity.
We often start by introductions. We had two new people, Teresa and her husband, Dale who has PD. Dale was recently (a couple years) diagnosed and they as a couple have been dealing with symptoms and life altering changes. Recently they downsized and moved closer in to the city and source of their medical care. They happily discovered Parkinson Community Fitness (PCF) was just a few blocks from their downsized house. Teresa has had psychological therapy to help her deal with her husband’s disease. When she revealed this fact she exchanged info with Jackie who had been pondering the same thing.
It is wonderful to see people helping each other through a difficult time. Life is a journey. Sometimes it is helpful to ask for directions. It is why this group exists. Cheryl originally started it. John and I took it over as her dementia worsened and she could no longer keep up with its organization.
What’s the best way to approach difficult coversations with my person with Parkinson’s or care partner? Take a deep breath and get rid of your anger. Remember your partner is not doing or not doing something to annoy you on purpose. Parkinson’s disease interlaced with dementia is complicated.
I don’t want to nag, so how do I encourage my person with Parkinson’s without harping or nagging? This of course is a source of friction in any marriage that can be made worse as one partner cares for another with a chronic disease. Most care partners were okay with nagging if it proved useful. I know I am. it is the guilt that shows up later that bothers me most.
How can I tell if I’m expecting too much/too little from my person with Parkinson’s? Care partners often maintain expectations of their previous life before PD entered their partner’s life. We can see the slow movement issues. We do not always understand that mental processes slow also. Decision making can be challenging. Menus in restaurants can be extremely challenging.
How can a Parkinson’s care partner live well today? Find time to do things that you as a care partner want to do. Find and do things that are yours and yours only that you can do away from PD and caring for your partner.
How can a Parkinson’s care partner be loving and supportive but also honest about how they are feeling? Most couples are open with each other. It is hard to stay married for long without talking.
Melanie spoke about feelings of grief as she and her husband began to recognize how life changing this disease can be. For Cheryl and I, we have noticed that it can be a very real sense of loss. It is hard to be upbeat when life beats you down. It is for us a one day at a time thing.
Hence my theme “Carpe Diem” which I say to myself over and over lately merely reminds me to look for the good things now. Take advantage of when she is feeling good. Forget about lamenting what could have been. develop a network of helpers to be with Cheryl occasionally so that I can be with myself.
I have not added Edie Kynard’s prayer ( modified) for a while but looking over my notes from last night and writing this piece this morning caused me to find it back.