Caregiving with Mars

mars-7-21-2018-Dennis-Chabot-e1532244737900

(Image from EarthSky http://earthsky.org/astronomy-essentials/why-is-mars-sometimes-bright-and-sometimes-faint )

At 2 AM Rhia calls me again. “Mom! I’m tangled in my blankets!”

Dragging myself out of bed, I groan and yell, “Coming!” Why do I yell? She can’t hear me, she’s deaf! This will be the fourth trip I’ve made to her room since 10 PM and I’m exhausted. I shouldn’t have made my bed so comfy because it makes it even harder to leave it.

Glancing to the window, I see a brilliant red spot in the sky, visible within the gap between my blinds and the window frame. What the …? I lower the blinds a little to see more of the sky. The red glow is huge and I think it must be a helicopter. No, it’s not moving. The orange light shimmers like a star and there are lines of clear light emanating outward, reminding me of how the Christmas star looks in movies.

“Mom!” my daughter yells again.

I dash to her room, disentangle her legs from the bed sheets, fluff her pillow, get her a drink of water, and kiss her forehead as she murmurs “Thank you” and then drifts to sleep.  When I return to my bedroom, the orange light is still there.

It must be a planet, I think. It’s orange, so could be Mars, but I’ve never seen Mars that bright! Jupiter? Then I remember the astronomy app on my phone. After the app loads, I point my phone to the sky and the program centers on that glowing orange star.

Mars.

Mars in her most glorious brilliance as she moves closer to the Earth. The app reports that Mars is making it’s closest approach to Earth in fifteen years and the viewing will be excellent. In fact, Mars will move even closer later in the month.

I stand in the darkness of my room and stare at gleaming, golden-orange Mars and smile. It is so beautiful. If Rhia hadn’t dragged me out of bed again I would have missed it. Not that I’m thrilled to lose more sleep, but I’m grateful she woke me up at this particular moment. Leaving the blind lowered, I crawl back into bed where I discover I can still see Mars from my pillow. I drift back to sleep with that beautiful image filling my dreams.

Good night…

The Day Rhia Declared She Can’t be a Princess Anymore.

I found Rhia crying in her room.

“Sweetie,” I said, taking her in my arms. “What’s wrong?”

“I can’t be a princess anymore,” she said.

“Of course you’re a princess. Why do you think you’re not?”

“Because I can’t walk anymore and princesses don’t have ataxia! Have you ever seen a princess with ataxia? No!” She buried her face in my chest and cried harder.

I wanted to cry, too. Damnit, why does this have to be so hard for her? Why does she have to keep losing ground a little bit every day? If she has to be blind and deaf, why does she have to notice how all her friends are grown up and living there own lives while she gets weaker and has to stay home? What the hell do I say to her?

Rhia is passionate about Disney, especially the princesses. Cinderella is a personal friend and Rapunzel was at her recent birthday party. She wrote them all a letter and they wrote back. When we go to Disneyland, all she wants to do is talk to the princesses.

“They remember me!” she declares. And a few do. Over the years, we’ve met the same actresses who surprisingly remember Rhia out of the thousands of kids they see each day. There’s just something magical about Rhia, something that draws people to her. Plus, she has a gorgeous wheelchair with flower-print wheel rims. Rhia plays with her princess dolls every day and talks to them as if they are alive; her imaginary friends are her closest friends.

But on this day, those imaginary friends failed her.

“Listen to me,” I said, urging her to look up at me; she has to look at me to see me sign. “You are a princess now and always. Cinderella herself said you are a real princess and you have the certificate to prove it!”

“But that was before…”

“No. Once a princess, always a princess.”

“But I can’t walk any more.”

“So what? Cinderella didn’t say you were a princess because you can walk. She said you’re a princess because you’re kind and smart and funny. You care about people and are a good friend. You are helpful and creative. And you love to sing.”

Rhia had stopped crying and was listening, but still didn’t look convinced. “But I’ve never seen a princess with ataxia.”

“I know baby, and I’m sorry about that. I’m so sorry everything is really hard for you now. You are a princess because you are strong and try hard. All princesses are strong. You are a princess forever!” I hugged her tighter.

She sighed, turned away from me, and picked up her Ariel doll. I kissed her head and left her to think about what I had said. I overheard her ask her doll, “Do you think I’m a princess?”

I prayed somehow that doll said yes.

Caregiver or Mom?

Caregiver or mom? The two are blended into one role when our children are small. As they grow, we let go of small bits of caregiving. They learn to drink from a cup, use a spoon, pull off their own shirt and shoes and brush their own teeth. They become potty trained. They go to school and learn to write their own name. They get their own snack and in time learn to feed themselves. Perhaps they cook dinner for the whole family once a week. If they have smart parents, they learn to wash their own clothes. Slowly our children grow and become independent and eventually are able to live on their own. They don’t need us to be a caregiver, but they will always need us to be a mom.

This is what I’ve seen happen in other families. It isn’t what I’ve experienced.

My daughter will be 23 tomorrow but has less skills than she did when she was 10. Rather than gaining independence, she has become more dependent. Her illness has slowly taken away her motor skills and her hearing and now her vision is declining. Her cognitive abilities are reduced and something as simple as choosing which shirt to wear becomes an enormous task. So I help. I help her dress. Help her brush her teeth. Help her eat and bathe and use the toilet. We seem to be living in reverse.

The tricky part is balancing her need for a caregiver with my need to be mom. Her need for constant support with her desire for independence. My need to keep her safe with my hunger for freedom. We’re both trying to figure this out. When am I the caregiver? When I am mom? When do I make decisions that support her life and when do I make decisions to support my own?

A caregiver can be more methodical; I set my heart aside and take care of her daily needs. It doesn’t matter how frightened I am or tired, it only matters that she get enough nutrition and stay hydrated. I can manage doctor appointments and therapies and other caregivers that come to relieve me. Caregivers don’t need much sleep. Moms do.

This mom is frightened and angry and sad. This mom is sick and tired of the call in the night from a daughter who can’t get out of bed for a drink of water anymore. But this mom is also grateful that the call in the night still happens. My daughter, my beautiful, funny, kind-hearted daughter is turning 23 tomorrow after every doctor said she’d never see 20. We’re planning a party and celebrating the wonder that is Rhia. I am in awe of this child… this young woman… who disrupted my own life with her needs and curiosity. I am honored that of all the potential moms in the world, this spark of wonder chose me.

We still haven’t figured out the balance, and maybe we can’t. Balancing the heart with the mind and independence with dependence might be impossible. Sometimes Rhia is as sick of me as I am of the constant caregiving. She’d love to walk out the front door and find her own life with her own friends in another state! I’d love to help her pack.

But here we are, our lives entangled by Mitochondrial Disease. I’ll keep trying to learn when to be mom and when to step back and be the caregiver. A caregivers primary role is to support independence. Maybe that’s a mom’s role too?

How can I help?

I am blessed with great friends who want to help. They send me notes on bad days and funny messages on Facebook. They text me a cyber hug. “How can I help?” they ask. They know how hard it can be to be a full time caregiver of an adult child. “Please, let me know what I can do.” But the answer isn’t that simple.

How can they help me with my daughter’s emotional distress as she loses her ability to walk?

How can they help me understand her on the days her speech is incomprehensible?

How can they help me interpret the world so she understands what is happening?

How can they help me when she has a meltdown in the grocery store and we have to leave?

How can they help me manage her day to maximize her energy and physical abilities, which change constantly?

How can they help me when she’s so lonely she cries because she misses her cousins?

How can they help me when I’m exhausted and in pain and need to rest my worn out body but she needs help in the middle of the night with a dizzy spell?

The problem isn’t the day to day stuff, like bills and errands. Sure, it would be great to have extra help putting gas in the car and cooking dinner. But those are the ordinary things that actually help me cope. Ordinary things, like laundry and gardening, cleaning the floor, organizing the pantry, and dusting help me stay grounded. The extraordinary things, like dealing with Social Security and Medi-Cal and my daughter’s inability to dress herself anymore, are the things that overwhelm me. But those are the things others can’t help me with.

So how do I answer “How can I help?” I do need help, but I don’t know how to specify  any more than I can figure out how to stop Rhia’s tremors. But if you have an idea, let me know.

Because right now, I’m emotionally overwhelmed supporting my daughter as she loses more physical and mental skills. I can’t figure out how to help myself.

If you forget how to have fun, perform in drag.

I work. I take care of my daughter. I work. I clean the house. I get up in the middle of the night and take care of my daughter. I fill out forms and do paperwork and return phone calls to manage my daughter’s care. I work. I do laundry. I go to the grocery store and pay bills. I work. I take care of my daughter…

And in between all the demands of my life I try to write.

So when I went to the drag show at the Ukiah Brewing Company last October and Jef Valentine encouraged anyone who wanted to perform in the next show to contact her, I did.

Yes, I will dress up as a boy and lip-sync a song and try to be entertaining. I’ve forgotten how to have fun. I will dress up as a Drag King.

26678139_963746217110382_3848419463491446433_o

photo by Rolina Fuentes

On Saturday, January 13th at the Ukiah Brewing Company, Edgar Ellen Hoe made his first public appearance to the song “Every Breath You Take” by The Police. Using a pair of black binoculars, I embraced the stalker in the song, eyeing women with pleading desperation and creepy longing. I think I succeeded; the entire crowd took a step back from the stage, and even though they laughed and cheered, no one really wanted to interact with me. Well done creepy Edgar!

26815122_964018250416512_6644043930343663608_n

photo by Rolina Fuentes

I left the stage exhilarated, laughing at myself while also thinking of my mistakes. Next time I would focus on moving like a boy. Next time I would swing my hips less and keep my arms closer to my body. I’d practice walking like a boy; how do boys move anyway? And next time I’d do something reminiscent of Harry Potter, because everyone said I looked like an older Harry. That could be fun.

Next time?

Yes, I’ll do this again. Performing as a character completely different from myself forces me out of my comfort zone, out of my head, and into fun. I can’t think about my daughter’s illness or my relationship troubles or the bills that need to be paid or my job or that stupid pile of laundry that never disappears… Edgar Ellen Hoe doesn’t do laundry. Edgar Ellen Hoe doesn’t have a medically fragile kid. Edgar Ellen Hoe sleeps all night.

 

 

 

 

Permission to Rest More

I slept this week. Every chance I got, I curled up under my warm blankets in my comfortable, old fashioned iron bed and willed myself to dream. Dishes piled up, laundry didn’t get done, and writing ceased. Instead, I snored.

After weeks of illness, the holidays, my daughter out of school and interacting with lots of people, my cold turned into a sinus infection. My doctor prescribed antibiotics and I reluctantly filled the prescription. But rather than taking one when I got home, I set the bottle of pills on my bedside table and took a nap. When I woke up, I asked, “What if I gave myself an entire week to sleep as much as I want? Will I get better on my own?” Deciding to find out, I set the meds aside. For one full week, I would drink tea and sleep.

Instantly I felt guilty. Shouldn’t I just take the meds and get better? I had a thousand things to do and a book to write and Christmas decorations all over my house. If I took antibiotics I’d probably be better in two days instead of a week. Giving a week to rest is an indulgence I couldn’t afford.

Or could I? My daughter went back to school, and although it’s true I work hard as her caregiver, there were several hours each day I could spend in bed. Besides, my body ached with fatigue and my lungs burned from coughing. My head pounded. Whether I wanted to accept it or not, I was sick and needed rest. Why not rest fully?

Grabbing my iPad, I climbed back into bed and watched Poirot Murder Mysteries on Netflix.

A funny thing happened over five days. Not only did my cough slowly improve and the pressure in my head subside, but my stress diminished. My cuticles healed because I wasn’t biting them so much. My eyes weren’t so dry from staring at a computer screen all day. When the phone rang, I didn’t jump and when my daughter needed me I had more patience. Not only did my body need rest to recover from illness, my body seemed to need rest to recover from 2015.

My head feels better now, but I might have an infection. I’ll give it time. From what I’ve read, antibiotics only cure sinus infections about half the time, so resting may be just as effective. But rather than killing off all the bacteria in my body and starting over, I gave my body a chance to kill bad bugs on its own. We’ll see if I still need antibiotics.

Rest is a luxury we can all use. I know I’m lucky to have the time; not everyone can ignore their work for a week. Realizing this, I don’t take rest for granted. It is a gift my daughter has given me. It’s challenging caring for a person with disabilities, but there are hidden gems in the work.

Next week I’ll jump back into my regular schedule of teaching, writing, running my press and managing the chaos. I’ll battle Social Security to make sure my girl has everything she needs. But right now, I’m going back to bed with a good book. Ahhhhh, heaven.

Is there a difference between gratitude and happiness?

This summer, I began a 150 day happiness challenge on Facebook. Every day I would post something that made me happy. It felt important I do this because I was overwhelmed with fear and anger from my husband’s cancer. Suddenly, I was the caregiver for two medically fragile people, my husband and my daughter, and the emotional toll made getting out of bed difficult. So I started looking for things to make me happy.

Quickly, the exercise felt phony. Very little made me happy. Writing about the joy I found in my morning coffee was silly, and how many times could I write about my garden? Happiness? What was that? I was happy just to get through the day.

Then I realized that I was actually writing down things I was grateful for. Having that morning cup of coffee helped ease me out of bed, and I was grateful for that. Watching my garden grow filled me with gratitude because I could feed my family while supporting wild bees. Gratitude was the best I could do. Happiness was like chasing a mirage.

What is gratitude? To me, it is an awareness of the gifts I have in my life. The simple things, like a warm bed, health insurance and the internet. I am grateful my husband’s cancer seems to be gone and I am grateful my daughter is thriving in her new school. I am grateful for her teachers. Grateful my car is running and I can afford new tires for winter. These things don’t make me happy; they make me grateful for my life.

As the weeks went by and I forced myself to post a gratitude, an interesting shift in my awareness occurred. The more I focused on gratitude, the more I felt happiness. Where did this happiness come from? Circumstances hadn’t changed. My husband still struggled to recover and my daughter still had bad days, but she also had good ones. There were days I wanted to cry from the weight of the emotional load I constantly carried, but on that same day I’d smile watching the dog chase leaves across the back yard.

I am not in denial; things are bad. Frightening. Cancer lurks and my daughter could decline any time. Money is tight and I still don’t have job. The future is one big scary unknown and the odds aren’t in our favor.

In searching for any small, random thing I felt grateful for, I uncovered a rich source of joy. Happiness fluctuates. But gratitude is constant. WhenI feel happiness has vanished and I’m left alone fighting my battles, gratitude holds me up. I am grateful for my strong, weary body. I am grateful for love. I am grateful it rained today.

Or is there really any difference between gratitude and happiness? Can you feel one without the other?