Trust and a lot of Hard Work

I knew transferring Rhia’s services would be hard, but I had no idea just how close to impossible it would be. The net that was supposed to catch us after we jumped toward a better life is ripped, worn out, and stretched to the point of disintegrating.

San Mateo County services are excellent, but getting to them is another battle.

I haven’t had time to write. My days are filled with work, caregiving, unpacking, and school work. I get Rhia ready for her day, then work a full-time job, rush home to take care of Rhia again and try to get homework done. I’m failing braille simply because I don’t have enough time or mental focus to memorize all those little dots. But if I fail, I’ll get kicked out of school, which means I’ll lose my job, which means I lose our home, which means we can’t be in San Mateo County…

Stop! Don’t go there. Take it a day at a time… no, make that an hour at a time. And trust.

Trust what? Who? Myself? I actually thought I could move to the most expensive county in California and it would all just magically work out. I’m an idiot.

However… every cell in my bones tells me I’ve made the right decision. Rhia is happy here; she now lives in “San Francisco” where she is closer to her doctors and the weather is better. No more long drives. No more 100 degree days. For her, I’ll keep fighting.

The Regional Center is finally helping her access a day program. There are two good possibilities with great opportunities for Rhia. While we wait, I’ve hired a caregiver to help while I’m at work. Finding her was pure luck and I’m extremely grateful, but I hope the Regional Center hurries up because I’m running out of cash to pay for a caregiver.

…if I can’t pay the caregiver then I can’t work and if I can’t work I lose my job and then I lose our home and then we’ll have to leave San Mateo County…

Stop thinking like that! Deep breath… there’s nothing to do but keep going forward. Trust.

Trust that I made the right decision. Trust that this is the best place for both me and Rhia. Trust that people are kind and there is help out there. Trust that I am smart enough to pass braille. Trust that I have enough money saved to get us through this transition time. Trust that I am not really alone, even if I am a single mom again.

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.

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?

 

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 deaf is she?

A friend sent me a link to a video called “Are You Deaf Enough, by Jessica Killgren-Fozard, which was posted by Ai-Media. Here is the link to the video:

https://www.facebook.com/aimediaAUS/videos/10155585533079220/

In the video, Ms. Kellgren-Fozard talks about how it feels when people ask her how deaf she is. How much can she hear? Why doesn’t she “sound deaf”? The questions and her response reminded me of how I feel when people ask about my daughter Rhia.

How much can she hear? What does she hear? Can she hear me at all? When did she lose her hearing? She looks like she hears me, are you sure she can’t hear my voice? Why doesn’t she wear hearing aids? Have you considered cochlear implants? 

The answers are: I don’t know. I don’t live in Rhia’s skin and I don’t have her ears. There is no way I can know what she does and doesn’t hear. All I can do is guess, just as the doctors and the audiologist have guessed. We think she hears sound, but it’s garbled, like trying to understand a foreign language under water. She doesn’t hear high pitched sounds. How do I know? Because when the smoke detectors go off she doesn’t even flinch. She looks like she hears you because she used to hear so understands that you are speaking to her and she is clever enough to make excellent guesses about what you are probably saying. But that too is my guess. Maybe she can hear you sometimes, but it fades in and out. She tried hearing aids but hated them. A cochlear requires major surgery and she hates that too, so she learned sign language. Any other questions?

The questions are all about what she can and can’t do. People listen to the answers, nod, attempt to communicate with her for about a minute, then move on. Once they have proven to themselves that Rhia can’t hear, they stop trying to talk to her.

Occasionally I am asked, “How should I talk to her?” What a wonderful question! Instead of wanting to know how Rhia adapts, a person will ask how they can adapt to her. I see people try to communicate with her and include her in an activity. It’s not easy and I don’t blame people when they eventually give up. But the ones who really try to connect with Rhia are rewarded with her bright smile. If they know even a little sign language, Rhia beams and says “They know my language!” All it takes is getting close, making sure she’s looking at you and then signing, “It’s good to see you.”

I know when people ask me about Rhia’s hearing they aren’t trying to be rude or cruel; they really want to understand and learn. And most of the time I don’t mind answering. But if you’re going to ask the hard questions, be sure to follow up with a question about communication. How does Rhia like to be included? What is her favorite thing to do? Can you help me sign a question? Does Rhia understand what is happening? How can I help her understand? Would Rhia like a cookie? How do I sign “cookie”?

The more you focus on who Rhia is and learn how to communicate with her, the more you will discover she is a vibrant, funny, kind hearted young woman who loves to sing and go for walks on sunny days. She’s also deaf.

How To Work Self-Care Into Your Family Caregiving Plan – Guest post by author June Duncan

The following is written by June Duncan, author of The Complete Guide to Caregiving: A Daily Companion for New Senior Caregivers, coming in Winter 2018. Click the link for more information. 

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How to Work Self-Care Into Your Family Caregiving Plan

When your life revolves around caring for another person, it’s hard to make time for yourself. But if you don’t, you could end up burning out, leaving you unable to continue caring for your loved one.

Caregiver burnout is a serious problem for people caring for elderly family members. It’s known to contribute to depression, concentration problems, and substance abuse, and even leads some caregivers to mistreat or neglect their family member in need. The cause? Chronic stress from neglecting your own needs as you care for another’s. For that reason and more, it’s important that family caregivers find ways to fit self-care into their schedule.

First, healthy meals should be part of any caregiver’s day. Preparing nutrient-dense meals is not only good for the senior in your care, it also ensures you get the nutrition you need to keep illness at bay. Develop a list of healthy meals you can prepare in 30 minutes or less to take the guesswork out of mealtime. When finding time to grocery shop for ingredients is a challenge, grocery delivery services or food subscription boxes can simplify the process.

Likewise, committing at least 30 minutes per day to moderate exercise like walking or gardening helps caregivers meet the activity levels recommended for physical health. If you exercise alongside your family member, it helps their health as well and provides an opportunity to bond — plus, finding time to exercise is easier when you can bring your charge along. For more vigorous exercise, consider signing up for a fitness class at a center that also offers classes for seniors so you both can benefit.

To round out the physical health side of things, ensure you get plenty of sleep each night. Not only does poor or insufficient sleep limit your ability to cope with stress and control your emotions, according to the National Heart, Lung, and Blood Institute it could also contribute to depression, increase the risk of chronic health problems, and lead to dangerous mistakes like giving the wrong dose of a medication.

Of course, your needs go beyond the physical. It’s also important to take care of your mental health so you have the capacity to treat your family member with patience and kindness rather than reaching for alcohol or drugs to alleviate stressors. This may seem simple enough at the beginning, but stay true to yourself even when things get really tough.

Chronic stress, like the tension many family caregivers experience, can lead to serious mental health problems that include depression, anxiety, addiction, and even cognitive impairment later in life. And although many people don’t realize it, stress is also intimately connected to physical health: According to the American Psychological Association, chronic stress can cause muscle pain and digestive problems, suppress the immune system, raise blood pressure, and contribute to serious illnesses like heart disease and obesity. Since stress can affect every aspect of your health, it’s clear that keeping it under control needs to be a priority.

To manage stress while providing caregiving, identify stress relief techniques you can apply throughout the day, like flowing through a meditative yoga sequence, practicing 4-7-8 breathing, calling a supportive friend, taking a power nap, or visualizing a relaxing scene. Each of these stress-reduction strategies can be done in 10 minutes or less and requires nothing more than a quiet space, so you can employ them at a moment’s notice when you need relief.

It’s not unusual for family caregivers to feel guilty about taking time away from their charge, but self-care is an essential component of a sustainable caregiving plan. When you take care of your own physical and mental health first, you’re better equipped to handle the challenges of caregiving with dedication and grace.

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