Trying Trust

I am a worrier. I need to plan, organize and anticipate at least three possible outcomes for every scenario. So taking a leap of faith is as natural to me as jumping off a skyscraper because I think there might possibly be a rescue net somewhere down there. Never gonna happen.

Until now.

Three weeks ago, I was sitting with a friend sipping a glass of wine at her lovely home while trying to figure out what to do with my life. I was getting divorced, my intended job wasn’t returning my phone calls and getting my daughter the health care she needed felt impossible. I admitted I’d thought about moving back to the Bay Area but feared I couldn’t afford rent.

“My friend has a house for rent,” she said.

“I doubt I can afford it,” I answered.

“Want to see it just in case?”

I shrugged. Why not?

The next day she brought me to a lovely, Italian inspired house with white stucco walls and a red tile roof. Opening the door, she led me inside. My heart melted; it felt like home. The house glowed with sunshine and 1930’s charm. The halls were wide enough for Rhia’s wheelchair to glide through and the view of the bay inspired daydreaming. It was the perfect place to heal a broken heart.

That night, I made a deal with the universe: if my job refused to give me the hours I needed I would apply for the house. Two days later, my job refused. So the following weekend, I met the landlord. And just like that, I had rented a house on the San Francisco Peninsula. Then a few days later, I interviewed for my dream job and that afternoon they hired me. Two weeks later I started school for my second credential while also beginning the process of transferring all of Rhia’s care to a new county.

I don’t know how the transition will go; I don’t have all the information! The paperwork and phone calls and future meetings are overwhelming. But I have to trust that it will work out. Just as I trusted I could afford the house. I found a job that pays the bills, and not only that, it’s a job I love. I’ll be broke for a while, but in time, we’ll find our balance again. Together, Rhia and I can afford our dream house in the wealthy hills of Belmont. We can do it because the landlord is trusting us too.

Rick and I have decided to sell our current home in Ukiah. The new house has an attached studio apartment where he’ll live this winter. He’ll be nearby to help with Rhia and support her transition. She has spent most of her life in Ukiah; this is the house she grew up in and all of her friends are here. The support team the three of us developed over 20 years is here. Who will help Rhia in San Mateo? What kind of support team will be waiting for her in a city? Will her needs be met? Or will she struggle?

This entire transition requires more trust than I’ve thought possible.

This isn’t me! I need to verify and quantify and balance all the pros and cons before making a decision. Who is this woman leaping into the unknown and trusting she and her kid will land safely?

I don’t know, but I like her.

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.

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. 

Untitled

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.

Image via Unsplash

Looking for Hope at the UMDF Conference

562px-Diagram_of_a_human_mitochondrion_svg20copy

(image from UMDF.org)

The United Mitochondrial Disease Foundation conference was in Alexandria VA., next door to Washington DC. Last year it was in Seattle and I brought Rhia to meet other people with “Mito”. This year, I went on my own. I was scheduled to give two talks about vision loss and spend a day advocating for health care in Washington DC. There was no way I could be Rhia’s caregiver and interpreter and teach and advocate. And last time I missed most of the talks about mitochondrial disease because I was busy helping Rhia meet other people. This time I was going for me.

I wanted to learn and meet other family members. Rhia has been declining both physically and mentally this year and I wanted to see if there was any new information to help her.

There wasn’t.

Without a specific diagnosis of a specific mitochondrial disease, there is very little anyone can do.

A lot of people with Mitochondrial disease know exactly what type they have, down to the specific genes affected. Leigh’s disease, PDCD/PDH, MELAS, Luft Disease, and 40 other types of Mitochondrial disease have been identified. There isn’t a cure, but there are treatments to help with symptoms and a frame work for what to expect. People at the conference tend to get together into “mito” groups, bonding over their diagnosis and outcomes, comparing doctors and treatments, and sharing ideas about coping.

But without a diagnosis, who do you bond with? You spend time with other people who are just as lost as you and who also have no idea what to expect or who to turn to. We are a mystery. We gather with other mysteries and quickly run out of things to discuss. We hear the latest study on possible treatments for a identified mitochondrial diseases and wonder how many years it will take for the experts to figure out what we have. Which gene, or multiple genes, are affected? How long do we have to live? I met parents just as scared and hopeful as I, but when they asked how my daughter was doing I was honest.

“She’s in a decline.”

They looked at me with sympathy, but quickly moved away. They didn’t come there to hear sad stories, they came to the conference looking for hope. So did I, but unfortunately I didn’t find it.

Instead I focused on the two talks I was giving at the conference, one to people with vision loss and the other to the larger assembly of attendees. If I couldn’t find hope for myself or my daughter, maybe I could help others find it for their own loved ones.

I’ll post about my experience as a speaker next time.

 

All grown up

The day I feared and hoped for came: Rhia graduated from school. When she turned 22 in May, she officially “aged-out” of her school based programs. She is now an adult.

Her school had a small ceremony for the three students who were also moving on to adult based services. But first, every student in the program got an award. One was for “Best Dancer.” Another was “Kindest.” A tall, shy boy was given an award for being the “Most Helpful.” And then it was Rhia’s turn. She stood up on her wobbly, colt legs and walked to the front of the room where she was given her Graduation Certificate and her award. Her’s said, “Most Likely to Speak Her Mind.” Everyone cheered.

They know my daughter well.

When Rhia was 5, she got in trouble for something (I don’t remember why). Instead of backing down, my tiny, elfin child put her hands on her hips and glared up at me with fierce eyes. “You can’t talk to me like that!” she declared. Fighting laughter, I sent her to her room. I was so proud of her and prayed that nothing would break that powerful spirit.

17 years later, nothing has… not multiple doctor’s appointments, losing her hearing, worsening eyesight, three hospital stays, deteriorating strength, ataxia, and anxiety. She will tell you exactly what she thinks and will fight hard if she thinks you’re wrong. Brutally honest, she is also extremely kind. She’ll tell you the truth, but be the first with a hug if she realizes she’s hurt you. She’s never intentionally cruel and fights for others as hard as she fights for herself. I wish I had been that strong when I was her age; instead I allowed others to walk all over me. I didn’t believe I mattered, but Rhia knows that she does.

I’m afraid. She’s not. But she doesn’t understand how complicated services for adults with disabilities can be. I see road blocks, paperwork, questions, and meetings. I’m afraid her world will get smaller now that she doesn’t have an ASL interpreter. Will we find one? Can anyone or anything replace the incredible support she’s gotten in school? How will I manage to piece together anything close to that?

Rhia is happy. Her greatest joy is she can now wear all the Disney t-shirts she wasn’t allowed to wear in school.

“I can wear anything I want!” she said, tossing school shirts on the floor. “I’m all grown up!”

“Yep,” I said, “You can wear Disney everyday.”

“Hooray!” More shirts flew into the air. I quietly scooped up the best ones to keep for the times she needs to wear something nicer than a Princess t-shirt. That will be another battle on a different day.

I need to have faith in my daughter. A deaf-blind young woman who wins an award because she always speaks her mind is no one to underestimate. And I’ve always got her back. We’ll find a way.