Is it weird I’m happy the doctor found something wrong?

Rhiannon had a Nerve Conduction Test last week. I assumed she would freak out, yell, cry, and punch someone (hopefully not the doctor).

Instead, Rhia sat quietly and allowed the doctor to connect the electrodes to her skin in strategic places. Then she held her step-dad’s hand while a small jolt of electricity was sent along the nerve paths. “That feels funny,” she said with a giggle. The electric surge increased in power, but all she did was stare at the doctor and say, “That feels very funny!”

Next came the acupuncture needles. This must be when she kicks someone, I thought. But the doctor was quick and the needles were very tiny. There was only one moment when Rhia glared at him because she figured out he was poking her with a needle. The entire test was done in less than 20 minutes.

And this time, the doctor actually found something wrong.

Do you know how many times Rhia has undergone tests? How often the doctor was certain he had found the answer to the cause of Rhia’s illness, only to have that test come back negative? Blood work and muscle biopsies have all come back good; no sign of illness or impairment. Even the genetic tests have returned inconclusive. What is causing Rhia’s ataxia and increasing fatigue? Why does her cerebellum keep shrinking? Why is her vision worse? Why did she lose her hearing?

I think the doctors are as frustrated as I.

But the Nerve Conduction Test found something! Her central nervous system appears intact, but the nerves that go out to her muscles are overactive. Even when she is sitting quietly, those nerves are firing like crazy. There’s too much “noise” in the muscles. Why? Not sure. But this test finally confirmed the cause of Rhia’s constant tremor.

When the doctor explained the “noisy” results of the test, I smiled., feeling a rush of relief. He found something! He actually found something! Look at the computer screen. You can hear the static of her muscles firing from too much nerve stimulation.

Rhia’s body is never calm; no wonder she’s exhausted.

Later, I bought myself a big box of Godiva chocolate to celebrate. Is it weird I’m happy the neurologist found something wrong? If you’ve been chasing answers like we have, you’d understand. After 20 years of negative tests, it was a relief someone found a clue at last.

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.

Who Chooses Your Label?

I was chatting with a man who has multiple disabilities, when he suddenly said, “What’s up with the whole person-first thing? Why am I called a man with disabilities instead of a disabled man?”

“Do you want to be labelled a disabled man?” I asked.

“Why not. I am.”

“But isn’t that putting your disability ahead of who you are?”

He scowled. “My disability is who I am. I’m not ashamed of it. Are you?”

“No. But we wanted to make sure people with disabilities…”

“Disabled people.”

I continued, “… were seen as people who are equal to others.”

“We, meaning the allies.”

Nodding, I said, “Yes. We allies.”

He said, “Look, I know you allies mean well, but shouldn’t we disabled people decide what we want to be called?”

He was right.

How often do we allies decide the labels we give to others?

This conversation made me think of the labels used in the LGBTQ community. What do he labels Bi-sexual and Pan-sexual mean? What’s the difference? If you love someone other than your own gender you’re Gay, unless you’re a woman, then you’re a Lesbian. If you love both genders then you’re Bi-sexual, but where does Pan-sexual fit? Transexual, transgender… who decides what you’re called? Labels are vehemently debated and discussed in the queer community, but how are they discussed in the disability community?

What are my own labels and who gave them to me?  White. Woman. Middle-Class. College educated. Mother. Middle-Aged. Teacher. Writer. Celiac. Feminist.

Ally.

Labels have meaning, which gives them power. Therefore, people should decide for themselves what label they claim. If my friend wants to be referred to as a “disabled man” then that is his right. Another person may want to be a “person with disabilities”. That is their right. An ally should respect the choices of the individual, otherwise can we really label ourselves allies?

 

Know Your Options for Senior Care from Afar, a Guest Post by Claire Wentz

hand-2906416_1920

Photo by Pixabay

Claire Wentz is the author of the upcoming book Caring From Afar: A Comprehensive Guide for Long Distance Senior Caregivers. For more information, go to her website.

When you have a senior parent who lives in another state, taking care of her can be especially difficult. But there are ways to stay in touch and keep a watchful eye over your elderly loved one with the help of technology.

According to Redfin, there are five main options for downsizing seniors: buying a smaller house or condo, renting a smaller home, moving in with a loved one, moving into a retirement community, and entering assisted living. If you’re considering putting your elderly parent or grandparent into more permanent care, here is a little more about those options:

Assisted living is an apartment-style facility in which seniors can live mostly independently but they might require help with daily living tasks, such as cooking, dressing themselves or taking their medication. They might also require help with transportation. Assisted living facilities provide these services.

Skilled nursing facilities are more like what traditionally were called nursing homes. They are for people who need around-the-clock care, and they may be temporary for rehabilitation or for long-term care.

Memory care can be in an assisted living facility or in a facility with more intensive nursing care. Memory care units are designed specifically for people with dementia, Alzheimer’s disease or other memory conditions.

If your loved one is aging in place, an amazing amount of new tech gadgets is likely to help her do so.

  1. Electronic pill dispensers — If your mom has trouble remembering which pills to take and when (it can be very confusing!), you can get one of these nifty devices. You can load the dispenser and program it so that she can know when to take her pills. Some can even record a voice telling her when it’s time to take her pills so that she hears it from someone she loves. Some dispensers even connect with her pharmacist who can monitor her medication use.
  2. Emergency call buttons — These have been around since the 1980s, but these days, they’re much more sophisticated. They can use gps systems so that your loved one can run her errands and visit her friends. If something happens, she can summon help without even knowing where she is. There are some systems that can tell when the user has fallen, so that if she’s unable to ask for help, she can still get it.
  3. Tablets for seniors — Your mom doesn’t even need to understand how a computer works. Simple-to-use systems can make it easy for her to video chat with you and your family, and it can monitor her movements and medical care.
  4. GPS-enabled shoes — This is a real gadget that can help you keep track of your loved one if she wanders off. Even if she just doesn’t get home when you think she should, you can check on her.
  5. Easy cell phones — Not all cell phones are “smart.” Some people just want a phone they can use easily. Some carriers have simple phones with large buttons and large screen fonts so that elderly users can access them.
  6. Health monitoring apps — Your mom can go to the doctor, and her doctor will put all of her information in an app so that she (or you) can access it from anywhere. This way you won’t be dependent on her memory of how the visit went, and you can communicate with her doctor any time by sending emails. The systems will alert the user when it’s time for vaccinations or blood work, and you can make sure she gets to her appointments.

We live in a great time to be a senior in the United States. The technology industry comes up with new and exciting options every day to make our lives easier. But most importantly — don’t forget to call your mother.

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.