A recurring theme in Cheryl’s head is “when are we going home?” I try at first to answer this by saying that’s good because we are already there. This rarely works. Sometimes it merely makes her angry with me.
The conversation is confusing when we reach this point. I can say to her, okay put on some clothes and we will get some lunch and come home. So, how would you find clothes for you in a place where you did not live? This is the first confusion but she accepts the fact that she has all her clothes here without accepting the truth of “home”. Even I am confused.
Later today, she is dressing now, we will go find some lunch somewhere and come home again.
Physical therapy is on the schedule for later this afternoon. Hopefully she will be tired after this activity.
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.
I did not know that fried rice recipes are intended to use up left over rice from the previous day or two until I looked for recipes for (something) fried rice to make tonight for dinner.
Yesterday when Cheryl was making me nervous in the kitchen that is what she kept talking about, fried rice. So last night after I apologized profusely I told her tonight we would make fried rice together. We did. She did some of the chopping and egg scrambling. I did the frying over the hot part of the stove. It worked and it was pretty darn good.
In preparation last night I cooked some rice and put into the fridge. I took some frozen chicken out of the freezer and put it in the fridge to thaw. Tonight we chopped and fried and stirred and cooked.
The general activity:
1 chicken breast – pounded, salt and peppered, chopped into thin strips
3 large eggs – scrambled with a little water
1 C. frozen mixed veggies, pick out the big green beans and chop them smaller. My package has peas, carrots, corn and green beans
1 medium size yellow onion chopped
1/2 tsp. of garlic pepper. I was out of garlic cloves. I usually have some. Use two if you have some.
2-3 tsp. of sesame oil
2-3 tsp of soy sauce (plain old LaChoy)
salt and pepper
vegetable oil for frying
I don’t own a wok. I used to own a wok. I am more familiar with a 12 inch cast iron skillet that I own. It works fine for this kind of stuff. We have had it for fifty years or so so it is well seasoned.
Fry the eggs after Cheryl turns them into scrambled mix. I add a little water to them like the Frugal Gourmet taught me years ago. (Remember him? Sad. He has some good recipes though. I kept his books.) Fry the eggs with about a tsp. of vegetable oil. remove them to a plate and chop them into pieces you will add them back later. After marinating the chicken chopped into thin strips for a bit in sesame oil and salt and pepper (I also pounded it out into a flat shape as though I was going to make chicken-fried-chicken ala Cracker Barrel) add a tablespoon or so of vegetable oil in the skillet and cook the chicken to golden brown. (Gently you can go too far.) Toss in the onion and garlic. Keep frying. Toss in the frozen veggies. (At some point you may feel the need to add more vegetable oil. Be careful.) Keep frying. Dump in the pre-cooked rice. Keep frying. Add a little sesame oil and taste it. Keep frying. when you are ready add the soy sauce. I guessed two tablespoons or so, but I do not measure at this point. I taste. It might need a little salt or more soy sauce. — Probably 30 minutes from beginning to the end and eating.
I should have taken a picture but we ate most of it before I thought to do that. I gotta get more Tik Tok. I rarely think to photograph foods that I am preparing unless I have impressed myself.
Cheryl wants to cook something and I am afraid that she will harm herself. I cannot get past that.
Yesterday after our doctor appointment in the early afternoon, we stopped at Dewey’s pizza for a late lunch. Somehow the white pizza showed up with red sauce on it but mistakes happen and the pizza was good, just not what we had ordered. (That is the second time in a week that the incorrect pizza showed up at our table. Perhaps we need to expand our cuisine. ) Nevertheless, lunch was good and we returned home to do nothing for a bit. Cheryl lapsed into one of her punding/do something modes and began futzing with making something in the kitchen for dinner at 3 in the afternoon.
It made me nervous and I suppose what I should have done was sit in the kitchen to read my book and keep an eye on things. But I did not. I just popped in to check occasionally and point out that we did not need dinner for awhile as we had had lunch at 2:30 pm.
Family dynamics are hard to break. Before Parkinson she did most of the cooking and I stuck to my baking hobby out of the way at the other end of the kitchen. I stayed out of the way when she was cooking. My opinion was not solicited nor encouraged in our old house. Cheryl was a good cook and in my new duties as cook among other things I have tried to duplicate many of our old favorite recipes. Sometimes I would botch them up but most times they turned out the same. (Thanks, Betty Crocker.) These days when she gets in a mood to cook, things can turn out badly, but, more importantly, she has fallen in the kitchen as often as anywhere else and I worry that she will put her hand on a burner or fall into the hot oven.
When I could not gently steer her away from her “cooking” – she was boiling two eggs – I became angry and upset and tried to explain the danger to someone who sees none.
And last night she slept poorly. I blame me for that. Lot’s of emotion swirling around in her head as she tried to sleep left her fidgety and awake until almost four am. Even the big new bed did not help.
Carpe sad Diem. An opportunity to make a memory was lost to anxiety and anger. But tonight we will make something together. I will do better this time.
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.
The need to do something, anything even if it is a mindless thing is referred to as punding. Parkinson seems to generate this need in many of its participants. It is generally harmless until it gets in the way of other things. Here is more from the Davis Phinney Foundation website.
Cheryl does this at different times. It used to drive me crazy and sometimes it still does if she starts up immediately before we are going somewhere. She often does it in the car with the purse of many pockets.
I am currently attending a class for care partners. It is put on for us folks dealing Parkinson’s disease interlaced with dementia and Alzheimer’s disease in our care givee. We have spent a lot of time on taking care of ourselves and making sure we are healthy mentally and emotionally as well as physically. It it easy lose track of those things when you become very involved in the day to day care of another.
Time away from care giving is very important but is it okay to change the social situation a bit and let people in that are in a similar place in their lives?
The idea of a support group meeting allows this to happen but there is a different social dynamic in a casual lunch, friends collected in a bar to solve world problems or gathered for card games with casual conversation. Support groups tend to try being informational rather than random conversation. Support groups that are attended by both the chronically ill patient and their care partner tend to be awkward somehow. If the care partner should feel the need to vent and whine a bit, they will feel embarrassed to do that.
Is it okay to change the social situation a bit and help the Parkinson person participate with you and others.
Admittedly it is a different dynamic. The caregiver has the social burden of not correcting their partner in conversation. Dementia does that to conversation. I want to jump in and save her from embarrassment. What if no one did that? To an outsider it might sound like a game of post office gone bad. So what?
If Frances was elected president then pumpkins would cheaper at the store. That’s true. That’s true and the police are trying to find new shoes for their cars. Those lights on top can fall off and the car hurts from that. Is there any ketchup for the ice cream? Did she bring extra napkins. I see a bug. Where is Scott? Is he coming? I have noticed that more and more people are married to our children. How many kids do you have? I have about fifty. Did you put up the sick people’s sign on the car? I need to make a list so that everyone knows what they are bringing to Thanksgiving dinner next week. I need to call Sr. Janet and remind her that the kids did not give us any raffle tickets.
And on and on. I used to jump in and help her with correct thinking or at least keep her from making embarrassing phone calls. The range of mismatched topics is endless and for some reason our kids turn up in it a lot as children. I also realized at some point I felt embarrassed. Cheryl did not. I stopped thinking seriously about it.
I actually think of this often. When Cheryl is out with her long term friends, people that she has known for many years but has not seen much over the past few, she puts on her “showtime” mantle and converses. When she returns home she is often exhausted from keeping that going. What if the social occasion did not require any sensate being to understand the conversation? What if there was no sense of or in it? Would she be less exhausted?