One can always learn new things if you open your heart to the experience.
Recently we met with a dementia specialist. It was not intended on my part to be one on one but as it turned out it was. She had several key points to deescalate frustration and anger. Like many things that happen these days with Cheryl and me, I often forget which people and services I have investigated before. Theresa Youngstrom is a nurse and a dementia specialist. In a previous post I quoted these points from her website.
It produces a reaction in me close to anger. I do not understand why. Anger is not quite right. Disappointment and some sadness with a little depression mixed in is a better description of the emotional mix. The only constant in life is change. However, that does not mean we have to like it.
In Matthew’s Gospel 21 (28-32) there is a story (parable) and I thought of it as I reacted to Cheryl’s idea. The parable in Matthew is about a owner of a vineyard who had two sons. He asked (told) his first son to work in the family business. He replied that yes he would go but he did not. When Dad talked to the second son the kid replied, nope, not today. I am hanging with the boys. He later relented and went to work for his father. It had not been more than a couple of weeks since it was read at mass.
That second son’s reaction was much like mine when Cheryl told me a confused story about Dan and Lynette. She though that Dan was a the Hospice of Cincinnati facility visiting with Lynette who was dying. He was not but I did not talk to him as I should have. My first reaction was similar to the second son. Nope. Ain’t doin’ it. I have no good memories of that hospice facility that is where my father died.
I gave in and took her to see Dan and Lynette. I put whatever little dinner preparation I had started back into the refrigerator for later. I made the five minute drive to the Hospice facility.
Cheryl was having a good day. We ran some errands and took a walk in the park. We had lunch at one of our favorite lunch diners. Our activities were all spontaneous. It was one of those sixty-five degree early March days. It would have been perfect if there no breeze at all but it was an okay breeze of five knots or less. It was very sunny. When we returned I told her about Dan’s call on Saturday. She did not return with the hostility that I expected as I had not told her right away. (This kind of news makes her upset for days.) She did react by calling Dan back to talk and find out what was going on.
When we got to Lynette’s room and I realized that Dan was not there I called him. In our conversation Dan explained that Cheryl kept asking where he was and did not seem to understand he was not there at Hospice. I asked him if he wanted to come. He does not see well and does not drive at night. He said yes he would like to do that and maybe we could get something to eat.
We drove across town, picked him up and came back to visit Lynette. She was unresponsive when he was there as she had been when we were there forty-five minutes earlier. Dan is a pretty quiet guy but he was a little beside himself. After a short visit watching Lynette’s irregular breathing we went to get something to eat. Dan insisted on paying for dinner.
We talked a lot while we were eating pizza at one of our local pizzerias. Comfort for a friend is something for which one must always find time. I have no explanation about my initial reaction other than it was about me. I had planned dinner and had comfortably settled into my chair to read before I had to get up to make dinner. I had no intention of comforting someone who was grieving that evening. Cheryl had been very upbeat and happy all afternoon. I was feeling pretty good myself.
Kindness to others earns grace. If only life was easy. This occurred on Monday. Late Tuesday since I had heard no more from Dan, I sent him a text and asked how things were and if I could help.
This is Wednesday and Lynette is deceased. Dan called late last evening to tell me that Lynette had passed on today. It is a sad moment for us both. Cheryl was asleep. I did not wake her with bad news last evening. This morning as I was going through my litany of what was happening today, I told her about Dan’s call. She was confused for a bit. She will ask me about it later.
One of life’s little twists just happened. Fate/karma/luck/the angel Gabriel – whatever brought me back into their lives on the last day of Lynette’s. Time for a little meditation and maybe prayer and reflection.
Cater was the answer to Wordle today. I am a little sad today. Lynette was good people. The only person I knew who knew how to tat lace. She had lots of crafty talent. She was an executive chef and a good cook. Dan is retired away from the “front of the house” in restaurant parlance. The restaurant business is where they met. Lynette was a very special person and I think I am better for knowing her in life.
May Lynette rest in peace without pain and dementia. Carpe Diem.
She wants to do it herself. We had a tough for me conversation this morning about issues we trip over as travel the annoying twisty road of Parkinson. It started out as, you know I can still do stuff.
This was a response to me speculating about learning to make my own piecrust instead of buying a commercial piecrust. I will take the path of least resistance every time I can. There are enough things to staff, organize and worry about. If someone has already made the piecrust, I am good with that.
I buy salad in a bag too. Dump and go. Chop a tomato and it is salad. Dressing is in the fridge.
She remarked that she could make a pie and that she knew how to make piecrust. Naturally I forgot about what I have been attempting to practice on a daily basis. I started to enumerate the negatives. I caught myself before I got too far into the ditch along side this partially paved macadam thoroughfare.
It is Lenten season. Instead of chasing some carryout fish fry from our parish we had the makings of tuna casserole. An old time favorite from the Dinner for Two Cookbook by Betty Crocker (You can still find one if you poke around.) Remember Betty Crocker? She is my go to for a lot of things. That seemed like an easy thing and she likes it. I said why don’t you make the tuna casserole and we can have the leftover pie for dessert.
We attended a discussion in the afternoon about newer drugs used to treat Parkinson’s disease and when they are used and how they worked. When we returned I attended to the laundry and then busied myself with work for my job at our local community college where I teach part time.
She announced she was going to start on the tuna casserole. It was three pm. I spent the next hour listening and worrying and occasionally sneaking a peek into the kitchen twenty feet away. After a few misfires on her part she got started with minor aid from me. She put all the ingredients into a Corning ware bowl and mixed it. She used to know how to start the oven but that knowledge and skill has been lost to Parkinson. I told her which buttons to push and it clicked on.
I went back to work on my project but gave it up for a bit when the oven played its happy tune to announce it was up to temperature and waiting. I went in for the oven placement of the casserole. She put it in but I worried while watching. (Maybe I am a worry wart.)
I suppose there is a good mechanical engineering reason for oven doors to open as they do. I have not seen one built so that door opens any other way but down. A standard range winds up with the door about a foot off the floor so that the person reaches down into the oven from three feet away. It looks to me like a disaster waiting to occur. I hovered nearby as she put the casserole into the oven and then put on oven mits to get something from the fridge.
We ate about an hour ahead of when we usually eat but time and calendar and sunrise and sunset seem to have less meaning for her. It is time for us to start eating dinner at four pm like the rest of the old folks.
Recently I read a book entitled – Dementia Reimagined by Tia Powell MD. It was a disappointment to me personally because I believe that I judged this book by its title. I was hoping for some sort of expert thoughts on how I can deal better with my personable anxiety, emotion and smoldering anger with Cheryl’s disease of Parkinson and her accompanying dementia. I was hoping for; when this comes up, do this. Life is not that easy but my engineer training wants to make it so.
Dr. Powell’s book is a good argument for changing the way government programs, insurance companies and the like perceive and fund help for those with dementia. I know that the funding albeit private or public is screwed up. A few months ago I met with a lawyer to discuss end of life issues especially since I felt certain that Cheryl’s chronic illness would eventually bear a heavy toll on our family finances. He asked why I still lived in Ohio.
All states are different.
No Help There
That does not really help me. These tips on dementia (copied from a website somewhere) do seem to be useful:
Always approach from the front. – or do that as much as you can. When I first read this it was not meaningful to me but I have noticed that Cheryl startles easily. Her startle reflex shows itself at seemingly random moments. If we are traveling somewhere in our car, she will react to other drivers with jerky motions or a surprised little noise from her lips. I used to point that out to her and she reacted with both embarrassment and a little anger. I have learned to ignore these little things but it is hard for me to do.
She no longer drives a car having given up her license several years ago.
I have noticed that she will jump if approach her while working on something in her office which causes her to face away from the doorway so that she does not see me coming. I am not moving quietly when this has occurred but I may be mistaken about that idea. I may be more stealthy than I think myself to be. We are both older. Our hearing may not be as acute as in our youth.
Watch your body language and tone in addition to the words you use. – frustration or surprise at the immediate situation may easily be interpreted as anger. This is the hardest concept for me personally to deal with. I am concerned for Cheryl’s safety and I also hate to clean up messes. I apologize a lot and she apologizes a lot for making a mess even though I tell her that no apology is necessary.
I recognize that I am perceived as angry by her when one of these situations occurred. The aweshit reflex is strong in students and practitioners of engineering. So far I have been able to tone it down to oh-poop but it is a work in process with some small progress. I keep telling myself it is anger with this disease and what it has taken from her. I cannot tell you if there is truth to that statement but I keep repeating it to myself quietly at night when a combination of sun-downers and dreamy illusions and hallucinations creep into her perception of the world.
Sometimes I merely lose it, however. I can be mister cranky pants in the middle of the night.
Smile and wait until they acknowledge your presence before touching them. – Hugs are always welcome but Parkinson’s patients may be unsteady, so be prepared to steady her and accept some weight change. Hugs are always smoother from the front than from the rear. (see startles above)
Regardless of acknowledgment touching, hand holding, hugging are preferable to distance. The combination of Parkinson’s and dementia are frustrating, depressing and scary. Cheryl has expressed this to me often in moments of perfect lucidity. Those moments are still there. Savor them like fine wine or life as it used to be.
Validate their point when they are upset even if they are wrong. – and be aware that it is not important to correct anyone’s perception of things. Never start a response with; you are wrong, dear. … and continuing with the rest of it.
Let’s face the fact that “you are wrong” is a manifestly stupid way to start with no dementia present. Relax and take a deep breath and decide between two things, is it important to correct her perception or do you merely have a need to be right. Try, yes, that could be true… and go from there if concepts are way off and you want to help her find the way back. Or just ignore it, after all, her memory is not very good any more. She will not remember that you are right but she will remember that you angrily corrected her.
Say you are sorry at the first sign of their frustration to keep situations at a minimum. – I say I am sorry a lot because I am sorry that I tread on her heart. This disease is frustrating for us both.
Cheryl sees a nurse practitioner a couple times a year. Maureen is pretty practical when it comes to nuanced care partnering. These are her words;
I get lots of questions on how to deal with dementia. I could give you a list of resources to look up on the internet, workshops to attend, books to buy. All of that takes time which most of us have too little of. A great caregiver website, caregiving.com, offers these 5 tips for dealing with dementia.
PRACTICE PATIENCE – This can be incredibly difficult to do. Try to remember when you were dealing with your children when they were young, especially the toddlers. You probably had more patience then, than now. Remember those days of taking a deep breath before saying something. With practice, it will get easier.
PROMOTE PHYSICAL HEALTH – This is for both the care giver and the care receiver. The care receiver can benefit from practicing chair yoga, dancing, gentle stretching. Since the pandemic there are abundant resources on You Tube which can be helpful for both the care giver and the care receiver. A walk outside in the fresh air can help clear the mind for the care giver and give a person a brief respite.
USE PHYSICAL TOUCH – Touch is a powerful form of communication and connection. It can also be a valuable expression of reassurance particularly to someone living with dementia. All of us need a hug now and again. My own mother would remind me I forgot to kiss her good night!
FIND RESPITE – If you’re focusing most – if not all – of your time, energy, and resources on caring for a loved one with dementia, you may find you cannot sustain doing so over the long-term. With proper self-care, you can relax and recharge, manage caregiver stress, and become a better and more effective caregiver. Consider sitting on the porch and reading a book, a brisk walk, a cup of Starbucks, an ice cream cone, a massage, a warm bath with soothing scents. These things need to be done regularly in order to maintain your own health.
REDUCE WORKING HOURS – If you are still working full time, care giving becomes a second full time job. Consider scheduling a meeting with your human resources manager to propose temporarily working from home, flex-time opportunities, job sharing, and/or even paid leave due to your caregiving demands. You may be pleasantly surprised by the accommodations your employer is willing to make.
Maureen is a wonderful practical person. (I also wish she was not in our life because then there would be no disease of Parkinson or dementia.)
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.
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.
Here is the setup. Cheryl has a wheelchair tag. In fact we have two. When Cheryl was still driving we applied to the state to get one for each car.
A few weeks ago we got in the mail on two different days a form for the state to renew our wheelchair tags if we wished to do that. The forms require a script from Cheryl’s doctor. When they came a couple weeks ago I put them in a special position on a ledge wall between the kitchen and the rest of our living area in the hope that I would remember to take them with me to our doctor appointment in December. Cheryl agreed that was a good spot to leave them.
Today, she re-discovered them and was telling me what they were. I let worry and anxiety about losing them before the doctor appointment come over me. I took them from her and explained why they were on the ledge. Thinking back on it, I was not that forthcoming with why I was putting them back on the ledge. She became very angry. I apologized for being a stinker. It is a delicate balance on some days and I admit I am not always up for it.
Of late, Cheryl keeps her emotions just below the surface. It seems to be a symptom of her disease. She is constantly thinking about what was. Hearing a particular hymn in church will cause her to weep. When she sees pictures of the grand kids on our electronic picture viewer, they become real to her and she will talk to them. If I take a deep breath or just simply sigh, she will ask me what’s wrong? If I do something and she feels slighted in some way real anger appears. All of these reactions are the same as any feeling person except maybe talking to the hallucinations. Parkinson’s is not real to her. The unsteadiness and jerky motion is not visible her until it is.
It is hard for me to not be a helicopter care partner and hover close by. It is hard for me to not be protective of things that I am certain will be lost in her PD and Lewy body confusion. She displays punding style behavior which in her case seems to be arranging and rearranging her papers in her office. These papers are often random collections of emails and news letters assembled with no apparent theme. (I worry that real papers will disappear in the organized randomness of her office.) I try to watch what goes into her office and short circuit anything of importance before it gets there.
Sometimes, like this morning, I do that without the gentleness that I should have used. When that happens I tread on her heart.
I should have read this when I got up this morning.
Lately I have been experiencing a bit of what I think of as Caregiver Burnout.
We seem to have repetitive conversations about where we are, where we live, who is here, who is not, where we are going today or not, when church is or etc. I admit to raising my voice in a natural inclination to getting the conversation to stick in her head. I can hear myself getting louder and cannot seem to resist. Later when I reflect on it, such as now, I want to remain calm and discover a quiet informative way to convey the same information to her in a way that helps her to remember. I find it to be doubly frustrating. She cannot remember so she will ask again. I repeat the information about dates and times and where. She cannot remember so she will ask again. (Urgh!) When I raise my voice, she thinks I am angry. I know I am frustrated. Maybe I am a little angry. It is hard to not be angry with this annoying disease.
Her inability to remember conversation and detail just an hour later is frustrating to her as well. She makes little notes to herself to help her remember. The next day or two or three days later she will ask me what I wrote her this note for as she holds up a note that she previously wrote to herself as a reminder. She does not recognize her handwritten messages. Parkinson jitters and stiffness has destroyed her calligraphy. She seems to not believe me when I tell her that I did not write whatever note she is holding in her hand.
I kept this particular note. I cherish it. She struggled very hard to remember how long we have been married this year. Along with all the other things our family calendar has become meaningless to her. The other picture is a sample of what her handwriting used to be. I have kept all of our letters we exchanged in high school. I suppose that makes me a romantic. 🙂
An added frustration is her complete inability to remember medication coupled with my occasional failure to also do so. I have set her phone to alarm for each medication time. She sometimes resets the alarm and does not take the meds. Occasionally I miss that. It is a constant battle between her Parkinson and my old agedness.
Over time I have taken over the duties that she used to do in our home.
In this second year of the pandemonium the pull between now and what was before is infuriating. Keeping track of her stuff and mine reminds me of how things used to be. She used to tell me what we were doing and where to go to next. Now the shoe is on the weaker foot. Occasionally that foot hurts.
It’s hard to enjoy the journey if you can’t see the road. It is so intensely unsettling to travel an invisible road in the dark.
At least we are vaccinated and boosted. The road is pretty long even when not visible.
This story is about nostalgia and remembrances of past years. We used to go to 9AM mass. When the kids were small it was 10:30AM mass. Over the years as the priestly population dissipated and became smaller the parish we belong to reduced the number of masses from five to three to two to sharing a priest with another parish. Word is that is to change again here shortly as the Archdiocese of Cincinnati tries to find a solution to the priest shortage. The Roman Catholic church’s own rules keep it from fixing its own dilemma.
A few years ago we switched to attending 4:30PM mass on Saturday. Cheryl’s medication, sleep and “feeling good” circumstances changed when she could tolerate being in church.
Covid-19 changed it again. We stopped attending for a while. The archbishop said it was okay to not go to church on Sunday. People in secular society argued about wearing masks inside. The pandemic eased a little. Health officials said vaccines are coming but wear a mask for now. People argued about other folks telling them what to do or not to do. No one argued about the archbishop saying no one need attend mass. Attendance in person was no longer obligatory. (Is the archbishop telling us what to do?)
The church scrambled to put the mass online as a streaming service. Cable TV still provides a local service channel with an incredible amount of boring but sometimes interesting stuff. A live streamed mass with no videographer or camera operator can easily out do the cable public channel for uninteresting content. There are many boring live streams now. Many live on with YouTube. Seems like every parish has its own live stream. Public health and government officialdom said it was okay to go to church again but wear a mask.
And then little blue ribbons appeared to separate folks from sitting to close together in the pews. Hand sanitizer appeared in the back of church with little baskets of disposable masks. Everyone wore a mask to keep from inoculating others with our asymptomatic illness for many weeks. The ranks at mass were very thin especially the old people’s 4:30PM mass. An entire year went by in this fashion.
Random arguments started about vaccines and how they were made. Experts who knew little about the process spoke anyway spreading the gospel according to Dimwit. The church got on the side of social empathy and “get any vaccine you could.”
Are we riding the horse into the dirt? Many years ago I worked for a large company that kept shrinking and shrinking until it no longer existed. Remnants of it are still around but it no longer exists as a whole. I met one of the former management folks later in a different company around town. The conversation often drifted into what happened? The perceived fault always lay with others or some insurmountable object, however artificial that may be.
Is that happening to the Catholic Church? It seems that many stalwart parishioners spent a great deal of time analyzing what church meant to them. I know I did. The church is changing. I am changing. For me the church and parish is a spiritual socialization. And I like the stories in the bible, many of which I have a different take on then the priest might have in his lecture after the readings.
I started down this thought about Sunday not thinking about church in particular. We used to get some donuts on the way home from church and sat and ate them with coffee for me and tea for her and watched the prerecorded CBS Sunday Morning news magazine show. We did this for many years. I miss it. Cheryl no longer sits for any length of time longer that fifteen minutes to watch anything on TV. We would sit quietly and watch with only occasional comments from either of us. Later in the afternoon we would prepare a meal for her mother and my parents that evening. Sundays are different now. Some of that is age and some of that is the disease of Parkinson. Sundays are just different.
Carpe Diem! Even when the days are short and numbered, remember that we are all flawed humans but if we pool our talents the flaws are out numbered.
Last night we sat outside for a bit and watched the International Space Station fly over. She was very excited to see it. She had found an article in the Cincinnati Enquirer a few days before that described upcoming events in the night sky.
We live on top of a hill and have a fairly unobstructed view of the horizon to the west. There are buildings, of course, but all in all not a bad view. After the the ISS disappeared from our view behind our building we went inside and she wrote this note to our children and a few other random family members. She wrote it in Word and printed it out and then asked if I could send it to our kids. This morning I did just that.
Hello, Anna, Scott, David, Janice, Jan, Nancy, Bill Farmer, Iris, Virginia, if I forgot someone, please pass this information along,
During this time of the year, there are often beautiful sights in the night sky. Paul is aware of these because he often researches some of the software that is available. You do not need to have access to special software… although it is helpful. You can see some of the stars and planets without any special equipment; you can watch the International space station as it travels across the evening sky. These sights are magical! Many if you have clear skies at night… some of them are visible in the early evening. When you learn that there is a lovely event that is expected to occur, get the kids ready for bed, explain the event to them… where to look in the sky, etc., they should ask their teachers about the night sky.
We found our information for tonight’s show in the Cincinnati Enquirer, the subtitle is “Crescent moon next to dazzling Venus.”, on page 5A.
Grandma. Aunt Cheryl, and any other relatives who may enjoy this.
The morning started pretty normal. The VERY LOUD ALARM clock awakened me to get her 7AM meds. I helped her to the bathroom and waited on the edge of the bed for the toilet to flush. She took her meds. We laid down again for a while.
Later I got up to find coffee and watched TV for a bit until Cheryl got up. She popped out of the hallway to our bedroom all excited because she could not find any underwear. In my stupidity I pointed out that she had underwear on just no pajama bottoms. (She was confused getting up this morning but I did not understand the extent of her confusion.) She was intending to get dressed for church but I did not realize this at the time. I was pleasantly ensconced in my Saturday morning coffee and newsy programs.
The newsy programs I have found to be not so newsy. The pattern is repetitive and to me boring — Covid we’re all gonna die; the latest political kerfuffle; desperate folks swimming the Rio Grande trying to get to Texas; some weather activity. Lately there seem few MASS SHOOTING events that make the news. Are they becoming commonplace? Or is it merely that most do not rise past some low bar of heinousness that is defined somewhere.
Nevertheless She was looking for underwear so I went back with her and found some undergarments which she pronounced good. I asked if she needed more help and she said no. I resist being a helicopter care person because it seems to anger her when I give unsolicited help. I went back to the coffee and pressed play on the DVR. This is a handy way to watch a two hour news show which is actually fifty-seven minutes long with a lot of breaks for commercial messages about Prevagen, Progressive insurance, the Good Feet Store, Kroger’s and the local weather. With a pre-recorded program you are able to fast forward through the windows direct USA.com and the rest of the crap that comes with commercial television. Cable TV is much better with no commercials and the inability to speed through the ads. (Facebook has this same model.)
After a suitable period of time, it takes concentration to speed up the saved file and catch the actual stories from the Saturday news show, I returned to the bedroom and realized my error. She was all dressed up for church and fidgeting with her earrings in front of the bathroom mirror. I apologized to her and told her that church was not for seven more hours. It is not time to go to church yet. But she was dressed and ready to go.
She blew up at me a little. “No one tells me. Neither of you told me anything!” I was two people. One in the mirror and one behind her. I admit I did not think of it. Almost everyday this week when she woke up she would ask, “What time is mass again?”
This seems to be turning into a constant in this life. For the past few weeks she awakens thinking it is time to go to church. I usually tell her – no this is (mon, tues,wednes,thurs,fri)day. Church is on Saturday afternoon. If she does not ask I do not tell. It worked for Bill Clinton, alas, not for me.
I find in myself an anxiety about getting something fixed before she spirals off into the weeds. By this I mean some task with which I have decided to help her. Her interests are not always my interests. Cheryl has taken on the task of sending thank you notes to those who have participated with or donated to the Sunflower Rev It Up for Parkinsons walk/run/ride last weekend. In this new world of no white pages phone books and no landlines it is harder to discover the addresses of those who have disconnected from the 48VDC copper transmission lines. For a parkie with no sense of how else to search that information it is impossible.
There is some confused repetition to her actions and to our life. I will tell her I will do something for her and find that a few minutes later she is doing whatever that may be instead of waiting for me to complete that task. I admit to not being johnny-on-the-spot about it. Her needs are not mine. Her interests are not mine. And I might have to gracefully let go of whatever mundane task I have given myself to do.
It stresses me a bit. I worry about letting her wander off into the weeds of Parkinson confusion, delusion, hallucination and altered reality. But it does provide some relief to me as long as it is not harmful to her. At least, that is my selfish view. Even now as I pour my inner thoughts into this commentary she is reading and re-reading a two year old story she wrote about the beginnings of whoopadiddee as though it is new.
I suppose the idea that nothing and no one cannot fix her confusion is most troubling to me. As long as she does not seem to be lost completely to me I let it flow around me. It is disturbing to my soul. Occasionally I am two people, the one who lives with her and that guy who brings the pills in the morning. Once in awhile I am Paul.