Back to the Drawing Board

We may think we're not being physically impacted by the global pandemic, but we are mentally. I had a progress phone call with an author today, and I wished him a happy Friday. He thanked me in advance, and assured me he is starting by having a good Thursday.

I looked up how to clean an eraser today. I know how to clean an eraser. My brain just cannot access that information now.

Getting my brother his breakfast, I changed up the order of prep, and poured milk into his already poured orange juice glass instead of his cereal.

On hold for 40 minutes to handle a banking transaction yesterday, I forgot what I called to do by the time I got to the person who could help me.

We have been semi-isolated in our house for 15 years. A Three Story Life chronicles this journey. Our father died in 2017, and, while we have adjusted best able, it limits how often I leave the house. When I go on my version of abroad - grocery shopping, lunch with a friend, the rare and wonderful whole day outing - I have to have someone here to be with my brother.

For most of those years, I made money illustrating from the Artist Dungeon. I did not meet the people who hired me. I could work 24 hours a day in my pajamas as long as we had toilet paper and coffee.

That is a lot of experience that should hold me in place well.

It don't.

There is a difference between being homebound and being housebound. We are finding how prepared we are, our institutions are, our government is. When we are back to business as usual, I hope it isn't business as usual. Back to the drawing board.

Say No to Not

Found this photo today looking for something else. The tiny lake is somewhere in northwest Michigan. My camera battery was almost gone, but the photography goddess accepted the image and watercolored it as well. I believe the Ayn Rand quote was laid over for a graduation card.

Do not let your fire go out
spark by irreplaceable spark
in the hopeless swamps of the not quite
the not yet and the not at all.
Do not let the hero in your soul perish
and leave only frustration
for the life you deserved
but have not been able to reach.
The world you desire can be won.
It exists.
It is real.
It is possible.
It is yours.

Browsing the local resale for a notebook for a birthday gift yesterday produced bonus bounty. I found a magnetic fake leather journal that had The Secret Gratitude Journal stamped in goldfoil on the spine. The cover has thank you embossed in many different languages. I kept that one for me. Kiitos paljoin [thanks lots~Finnish.] The woman at the counter said she had just put it out minutes before. Found a notebook for the birthday boy. I thought it read Killer Reality, but turned out to be Killer Beauty, and for marketing reasons I can't fathom is merchandise from Snow White & The Huntsman. (It was still packaged and read "Spiral Bound" although it is obviously perfect bound.) Made me laugh, still does. He's a huntsman, and if he gets a deer this year, I signed on for some venison bacon. And I found a travel journal for another wonderful friend who yearns to travel, but life is asking her to stay home for now. Scotland next year. Fingers crossed. A deer for Patrick, Scotland for Nancy, and gratitude for me. It exists. It is real. It is possible.

Linda's Little Book of Caregiving

Informal. Unpaid. Caregivers in the United States, whatever the statisticians call us, number in the millions. Statisticians love numbers and percentages. 29% of the population. 66 million people. Any organization that keeps track does so based on self-reporting. My estimate is closer to 100 million people engaged in caregiving. I'm not sure surveys administered to caregivers, when identified, are accurate for this reason alone: caregivers think of the persons receiving the care before they think of themselves. And caregivers may be prone to underestimating the amount of daily living activities they perform, when they report at all. I participated in a Wayne State University graduate student's survey via telephone interview. I started crying 1/3 through because I could not keep it straight who the survey was about. I kept answering on behalf of my father and brother. Me! I'm the caregiver. Adding to this loss of self are workshops that claim to be for caregivers, when the session is actually about the caree. Remember to have an extra handbag for when mother loses hers is not about the caregiver. These misrepresented sessions add guilt to the stew. One I attended was displayed on the library sign "Caregiving." 2 hour session, and with 20 minutes left, I raised my hand to ask when we were going to get to the part about caregiving. The moderator was surprised. Really? Later, looking at the handout, it dawned: the session was put on by an assisted living facility. It wasn't about us at all. A friend and I went to an inaptly named Caregiver Conference a couple years ago. Some of the workshops were about the caregiver. But the booths were about paid assistance, products for the caree, not the carer. Paid in-home health work. Stand-in bathtubs. Handrails. We were dismayed. No booth offering free neck and head massage. No gifts for caregivers. No booth just thanking us for doing what we do. We pledged to have a booth the following year, but do we describe ourselves as a nonprofit? When we can't sleep we look at the internet for caregiver help. We know it's a loving job, doing [your higher power name here] work, but we still can't sleep, we're losing our hair and our strength, and damn it, when is it about us? Ah, well, we read that caregivers have health issues. Some are predeceasing their loved ones. And site after site reminding us we're unpaid. We don't give a flying fig how much our work is worth. We do care how we can keep our selves, our sanity, and a modicum of independence. We need to know we have sisters who are struggling to maintain well-being. We are who this book is about. All those big numbers, personalized. Me, my friends and the gallant tired carers who need to know we're not crazy. Or alone.

A Three Story Life: Medical Advocate

Nice doesn't get a damn thing done. Civil is good. My mantra these days is "I don't have to get mad, I just have to get what I need done." As caregivers, especially as live-in caregivers, we know the level of need. We know it like we know how high our blood pressure is, but we do something about other people before we do anything about us. That's for another post. Dad's blood pressure is really high. He has a medication in the cupboard that was prescribed by his VA doctor. He got confused and stopped taking it in December. December. His BP is dangerously spiky. He calls in his BP to their "blood pressure monitoring" answering machine. and Nurse Kelly will call and ask "why is your blood pressure so high?" to which I want to reply, well, never mind. Nurse Kelly told him to hold off taking the medication prescribed by his doctor until the results of his vascular tests are in. Ridiculous, but he waited. The results are in. But my father misunderstands what he's told, too. I told him to call the doctor. She's not in. Leave a message. A message just goes into a message center. Yes, that's where messages go. Leave a message for the doctor. He called Nurse Kelly. I used his phone to call VA Doctor. Message person asked if he's reporting to that monitoring bullshit. Yes. They will call, message person said. No, I said, I want to talk with VA Doctor. Okay. I'll leave a message for her team. No, a message for VA Doctor to call. No response. Please repeat the message as you entered it, back to me, I said. Think dog/bone. Think tick/ankle. Think clearly about what you need, and then insist the entity at the other end of an exchange repeats back to you what you want. Be clear. Be specific. Use short sentences. One word responses. If you need to write it down first, do so. And repeat what you need until the other party agrees you need it. Every office you call has a Flat Alice who is the front person supposed to move you away ASAP. It's your decision whether a doctor needs to be bothered, not the gatekeeper. No one bars the door for me any more in medical situations. Use please the first time, but not onward as the conversation ages. Say thank you, only after you are sure you were understood. Nice doesn't get a damn thing done. Civil insistence does.

A Three Story Life: Backstory

We move about our lives in the history of our experience, like the classic suit in the closet we don't think about, no longer wear, but have not abandoned. Knowledge we can get if we're intellectually curious. We can knead awareness like physic dough, but the ingredients that made us are still there. Change can help us grow; the yeast of chaos delivered to our cupboard. Two conversations in an hour yesterday made me try to put that old classic suit on again. My father has 86 years of history and experience. I have no idea, and never will, what his life means to him, beyond what he shares in anecdotes, and what I can discern from reactions to events. He has no idea what my experience has made of me either. My brother may still be absorbing everyday events, but Alzheimer's disease has changed the interactions for the three of us. Dad wants it the way it was before. Scott wants the relationship to change. I need to adapt to the now with agility. Three individuals. One living with Alzheimer's, one living in the past, and me trying to make it all work harmoniously. Does how we came to this point matter? What defines who we are? The first conversation yesterday started early with Dad showing me the long sheet of details about the antidepressant Scott is on - the side effects that we're seeing in Scott. That's easy. We need a change in prescription. But Dad relayed stories about Scott's behavior that told me he's still trying to control his son. He picked up the sheet on the medication to read it because he wants a change to make Scott follow his orders. Scott, for the first time, is shaking off the control. Dad doesn't like it. What's my role? I told Dad for the thousandth time that we can only offer Scott safety and joy. He's done being trained. Get the medication changed, hope for a better outcome, and let the rest go. My backstory doesn't help me at all now. I hated my parents complete domination. I got out from under it, fought for dominion over my own experience, succeeded some, lost some. And here I am back in it. I can handle my own parental stuff, but Scott never did get away. Am I cheering his tiny steps for independence as a loving sister, or as a champion of freedom for myself? The second conversation yesterday was with a dear friend about affirmative action. Chaos delivered the newspaper headline to our talk, and my companion thinks it is time to abandon preferential legislation. I understand that constitutionally the argument is valid. My backstory is woman experience, starting with being the daughter of a sexually abused daughter; earning less for decades, counseling to get a grip, fighting to gain the ground I did, trying to help sisters up. I have strong feelings and history on this subject. It's my old classic suit. And I got angry yesterday, and suppressed it until later. The anger was a reasonable reaction, but now I'm questioning my feelings again. I'm mighty confused. Does it matter that my father wants to control his child, my brother? I don't know. Can I contribute anything healing and constructive? Why did a disagreement about affirmative action affect me so much? I don't know that either. I have the child story, sibling story, and adult senior woman story. Which serves me best? What helps my loved ones? And when the hell will I get rid of that old classic suit that used to fit but no longer does?

A Three Story Life: Navigation

Yesterday Dad yelled down the stairs. "I'm going out to scrape my car." Okay, I thought. What's that about? He was leaving for the dentist in half an hour. Practicing observe and let it go, I took note and moved on to other tasks. A thought drifted into focus. Maybe this reportage is about bearings. I fell a couple weeks ago. Afterward my left brain got caught up in analyzing what happened. It was a new surprising event and I mentally gnawed on it to get its flavor. I lost my bearings. Spinning out, my father calls it. What Dad was doing when he gave me his location was using me like a star in a sea of change. At first it seemed I was a sextant, but that's a tool - there are still x and y points to locate in order to use a tool for navigation. We have physical locomotion needs: how far away is the ground? How close that step? And we have psychological placement needs. Establishing behaviors that define our physiologic borders. Scott has lost sense of where his body ends and the rest of the world starts. We don't know how he feels about this. Dad knows how it feels, and although he cannot communicate it any more than Scott can, he sets his internal sextant to coordinate the points he can recognize. If I know where he is, then he feels less at sea. I become either a point on the horizon or the north star. It's an awesome role, and I will respect the assignment with humility and reverence, and think of it as an opportunity for growth. And this awareness is a marker to watch for this in other seniors, and hopefully, to remember to use it myself.

A Three Story Life-The Wayback Machine

The Wayback Machine was a device used by Mr. Peabody and his boy Sherman to visit history. Peabody's Improbable History cartoons were a feature of the Rocky and Bullwinkle show, a genius Jay Ward enterprise. Peabody, here, Mr. Peabody said to start, and we would then happily journey back in time. In our house, The Wayback Machine begins with that's like... or I remember. If Dad says I remember, there will be a tenuous connection to what we are talking about in real time. If it's that's like, the anecdote will have little or nothing to do with now. Many conversations include these two episodic references. I think older people talk this way because long-term memory is most readily accessible. Humans like to have self-relatedness. We all like to talk about ourselves. But the non sequitur recurrence makes it head spinning to keep up during a crisis that needs attention. In the midst of household problem solving, it's downright hard. It confuses me, it confuses people from outside our house who are participating in what's being discussed. Maybe it's common to try to explain what we did 45 years ago that may or may not have led us to where we are now. But information revealed in this way doesn't clarify anything for the listeners-it makes getting through a sticky wicket that much gummier. Today I said a dozen times, let's focus on the here and now. We moved into the 80s fairly quickly, but never did get out of that troublesome decade altogether. Do we all do that? Dad tells anecdotes to me as though I was not there when the story unfolded. This behavior is particularly perplexing because in every other way his cognitive function is fine. He just won't switch The Wayback Machine off, especially if we're confronting a situation that requires present tense attention and a rapid solution. I think those of us who are stuck in the past tend to stay stuck. Everything is a reflection, living is not done in the present. Problem solving is solving problems in the past. Alternative outcomes get reviewed repeatedly in private, until the past is a wheel in a cage. There must be some brain function that allows a successful conclusion from the past to stand in for what's going on now. I'm over analyzing this. I need more present and accounted for behavior in dealing with situations, because our lives right now contain serial situations. All I know truly is it is not possible to count your blessings when the wheel of self-analytics is going full speed, and I have great sympathy for my father. It has to be exhausting not to have blessings in the now to count.

A Three Story Life - Fishbowl

I like privacy. It's been a designed part of my life, by arrangement and preference since I was 16. Fortune favored me by allowing the circumstances to keep my life quiet and personal. It hasn't been quiet or personal since living the three-story life. My stuff is out in the public domain, so much so, that, before I have my coat off from whatever undertaking, I'm asked about outcome. It's a small thing; a thing I'm a little ashamed of having trouble adjusting to, but taken in a bundle, every day, every step out the door and walk back in, it's impacting my body, my mood, my well-being. Today it's my glasses. I have a pair several months old that have been an expensive hassle. I don't remember wanting a coating (and I'm not even sure now if it's glare or scratch) but the damn stuff warps in heat. The lenses have been replaced three times already, striated at the hands of the people adjusting them who plunged them into the heated beads that allow bending the frame, thus warping my lenses. I've got striations in the left lens now, without knowing what heat did it. I don't use hot water, I don't dry my hair with my glasses on; mysterious appearance. I went to the eyeglass place to ask for a solution. Blah, blah, blah, I have no interest in talking about it because it's the usual damned if you do/don't of business transactions these days, but since I told Dad where I was going, before the door was shut, he wanted to know how much of a fight it was. I don't know why he wants to know this stuff. Is he interested in how my life is? Maybe. Does he enjoy my confrontation scenarios? Maybe. He's learned just enough about my reluctance to share everything to know how to ask a question to which I cannot reply only fine. So, he's learned that. Why can't I learn to just let it all go? I moved into the basement when I was 16 to get away from all the questions my little sisters peppered me with, and now I am already in the basement. Reminds me of the old performance review snippets being email forwarded years ago. "This employee has reached performance rock bottom, and is starting to dig."

Legislation to Include Home Health and Farm Workers

President Obama and Labor Secretary Solis introduced legislation to include home health and farm workers in the Fair Labor Standards Act. This will remedy the exclusion since 1937 of those occupational titles. If I'm going to lower my blood pressure, I need to stop reading New York Times articles on this or any subject. And government labor statistics about income. Republicans quoted are agin it because it will raise costs and cost jobs. Whatever. Isn't there a new argument in the GOP playbook? Or NYT reportage? The government indicates median incomes for home health care workers on the Bureau of Labor Statistics site. Median is an artificial percentage. A 4th grader can tell you median means the exact middle of the pack. To use another example, the median age of single people in Michigan might be 34. Ages above that number might average 68, and ages below average 6 months old, so the median age is 34, although there is not one single 34 year old person in Michigan. Or any age near 34. There are no statistics about how many people of any age who are providing care for those less fortunate or able are receiving no income at all. The government statistics only include those who are registered, employed by third party agencies that issue 1099s or W4s, or are union members of organizations like SEIU. I applaud President Obama and Secretary Hilda Solis, and hope this 112th Congress will somehow have a Christmas miracle delivered to them before the new year voting follies begin. There is one more blessing for me to count this holiday season: I am not an elderly relative of any of the Scrooges who want to deny minimum wages to caregivers, home health workers and farm workers.

Grief Depression Stress and SAD

Went to my second Alzheimer's Disease Caregiver Support Group today. The first one I went to in another city was canceled and I didn't know so I showed up to an empty room. I was sort of relieved. This one in South Lyon had one attendee. We figured out it was probably because the notice in the community newsletter didn't have where or a phone number. Cherilyn Johnson of Sparrow's Nest Christian Counseling was the facilitator as a volunteer with the Alzheimer's Association. She brought bundles of literature, handouts, relevant books, and her good heart, training and sensible approach. I was blessed with her willingness to stay for just one person. I then doused her with the issues in my life, my father's and brother's as well. We live together. My dad is 83 and 1/2 (it's a joke with his sister who is "going on 92") and my little brother has Down's Syndrome and now Alzheimer's Disease as well. On any given day we share a brain. Dad and I are observers to Scott losing little bits of himself, and we're struggling with diminished skills among all of us. The dog contributes by losing his command cues randomly which I think is intentional because dogs just want to fit in. The dog is also lousy at knowing where the car keys are and making dinner when we're too tired. So today I admitted to holding back grief. To denying depression. To more stress than I can handle alone. AND to the possibility of Seasonal Affective Disorder which I have in the past thought of as a whiner's sort of disorder, so of course, I couldn't have it. But now I am ready to find support and help. Not drugs yet - I'm not good at medications. My depression is the worst December, January, February, and I can get through those months if I corral the SAD. I shared the meeting with a good friend, and she - bless her - said yes, SAD is real, and she knew how to find a full spectrum light bulb and she'd get me one. I bid on some yellow candles on eBay because yellow is a sunny color. Cherilyn suggested I try to bring the grief out where I can see and address it by journalling or creating. What does grief look like? Grief feels like a black hole: icy, gigantic, solid. If I painted it, no viewer would feel the distance and aloneness, and I'd use up all my black paint. I told my friend Geri that I am envisioning more of a thready feel; like trying to walk a great distance on cobwebs. Over a big icy black hole. My friend Beckie who we lost last year gave me solid footing in the world. And her warmth was like a yellow dwarf star. Now there's a black hole where her star used to be. My little brother's humor is dimmed, his presence like a fading light, and I grieve for him, too. When I cried today because I didn't know if anything I'm doing is the good or right thing to do, Cherilyn said "do you ever let yourself just cry?" I said no, but I'm going to right now for a while. She also said, "all you can offer your brother is joy and safety." And that's what I will take to heart and give back as best I'm able. Safety and joy.