Caregiver to the Rare: What Goes Unseen & How to Help
August 1, 2022
“So, how are they doing?” That is the most frequent question we get asked about our 2 boys (ages 7 and 10) who have been diagnosed with the fatal muscle wasting disease, Duchenne muscular dystrophy. There is no easy or short answer to this question because they are both currently doing well, but yet they aren’t because their bodies are slowly deteriorating. Thankfully Duchenne life hasn’t hit them very hard yet and most of their days are just like other kids, with a few exceptions. Sawyer and Wesley are still mobile and able to run, play and participate in many activities, albeit a little slower and they tire easily.
We tend to soften the reality to most people we see in passing because they appear to be perfectly healthy young boys not battling a devastating disease, so we typically answer, “They are doing fine right now.” This question is usually followed up with a response like, “We are praying for you.” or “Let us know if you need anything.”. These well meant words comfort us greatly but we often feel like a lot has been left unsaid.
Surprisingly, the question that we rarely get asked is, “How are you (the caregiver) doing?”. And when it does get asked, we respond by saying something like, “We are hanging in there.”. And we are, but barely. We recognize that most people don’t understand what being a parent to the rare is like, especially when your child/children appear fine, so we don’t typically say how it really is because our answer is too heavy for small talk. So the conversation typically comes to a close after a few encouraging words directed toward us.
So, how are we really doing?
We are in a constant state of exhaustion and heartbreak. We are completely consumed by all the obstacles in front of us that it takes all our strength to keep our lives moving forward. We live with the brutal devastating reality that both our children will have to fight everyday for a life that will never get easier, but progressively harder. We know and understand that without a cure they may not live to be adults, get married or have children. On top of that reality we still have to function day to day like any other family that has work, school and activities to attend. But it doesn’t end there. Not even close. Being a caregiver to the rare is a job itself. We are dealing with a disease that does not fit the mold of normality. We have to fight for almost everything they need. We are currently spending about 15-20 hours/week giving them that extra care. We keep busy managing everything from daily care to doctors appointments, and from research to fundraising.
Behind the scenes?
Currently we manage their care with 22 health care providers across 2 states. We spend an enormous amount of time scheduling, going to appointments and communicating care plans. Lately we have been averaging 3 appointments a week. And with each of these specialists comes a care plan and testing to measure their needs and progression of their disease. In almost 3 years they have already underwent more tests than many people have throughout their entire life.
There is no cure yet! But we have to keep up on what’s new and continually research to make sure we are giving them the best care possible.
When dealing with a rare disease we have found you must constantly advocate for your children to get the overall care that they need. From school to doctors appointments, from accessibility to inclusion we have to speak up and follow up. When dealing with so many providers, we get differing opinions constantly and ultimately we have to choose and explain (repeatedly) almost every decision we make.
Awareness & Fundraising
We know the answer to helping our boy is finding treatment through spreading awareness and helping fund the researchers working on it. It takes a lot of time and effort to plan and host fundraisers. We try to do 2 a year and each take months to plan and organize.
Insurance & Finances
It is important we have insurance and finances squared away. Annual cost of a Muscular Dystrophy per patient is $120,910 x 2boys = $241,820. A whole separate blog could be written about struggles with insurance.
We advocate for their needs at school through 504s and IEPs. We educate the staff about their rare disease and what they can do to make their time there as accessible, comfortable and inclusive as possible.
Knowing our children may not have a full life ahead of them we try our best to share as many life experiences as possible. Lately we have been doing some traveling while the boys are still mobile. We try to take advantage of being able to do things like hike on a trail and run on the beach.
Daily we manage around 12 different meds/supplements for each boy and the side effects that come with it. Let me reiterate-SIDE EFFECTS. The only available treatment for Duchenne is steroids that help maintain muscle. Steroids cause many side effects that make life more challenging, including severe mood swings, headaches, weight gain, growth suppression, osteoporosis etc. The boys experience all these symptoms and more.
The boys need to be on a healthy diet and be well hydrated at all times to prevent health issues like rhabdomyolysis and obesity.
We stretch each of them for about 20 min every day to slow down joint contractures so they can stay mobile for as long as possible and we have them do breathing exercises to keep their lungs strong. At night we strap them into AFOs (splints) to slow joint contractures in their ankles.
They live a life of balance because their muscles tire more easily and take longer to recover. Play, but don’t play too long and get fatigued and dehydrated. Exercise to stay strong ,but no strength building, or it will cause irreversible muscle loss. Rest but not too much because you still need exercise to be healthy. And don’t forget to drink plenty of water!
Due to weak muscles and lack of core body strength our boys are a fall risk and can get easily hurt. Treatment causes brittle bones so one bad fall can cause serious injury. It feels a little bit like watching 2 toddlers and making sure they don’t do something to hurt themselves.
On top of caring for our children we are learning we have to take care of ourselves to better care for them. When dealing with a progressive muscle loss disease for two we are already seeing that we need to be able to help them around.
And perhaps most importantly we have to care for them mentally. It just might be the most gut-wrenching thing in life to hold your children as they cry about how unfair life is and they don’t want Muscular Dystrophy anymore. So with the constant lump in our throats we smile through our tears and show them that all life is beautiful and still worth living.
How to show Caregivers your support
Not all Caregivers have a robust support structure. The support of family, friends and community can make all the difference.
Listen and empathize. They don’t necessarily need advice just a safe space to vent and be heard.
Don’t be judgmental. People often won’t know all the details of why a decision has been made. They need to feel supported and not like they have to defend their decisions or feel guilty about them.
Learn about their condition. Do some reading online to help understand a small part of what is occurring.
Reach out, offer specific help and follow through. Caregivers don’t often reach out for help as it is another thing to plan and set up.
Offer your time to them. Caregivers are often wishing for more hours in a day to get everything done. Offer to babysit, run errands for them, or bring them a meal to give them more time to get other things done.
Give them space. Watch for signs of withdrawal, isolation, and depression. This doesn’t mean they’re not busy it means they need to rest and recharge from being social. Check-ins are always welcomed but don’t feel put out if their communication is lagging.
Offer to take them out for the night or a short getaway and help organize child care. Caregivers need time to rest, get pampered or have a fun night out.
Inclusion. Invite them to things, even if they can’t come. Sometimes they are just too tired to want to do anything but it still feels nice to be remembered.
Don’t make work for them. i.e. Planning a future visit is a yes but giving little or no notice is a no. It causes a lot of stress. Care receiver may not be feeling well, caregivers are often running on a tight schedule, may not feel like company, or don’t feel like putting their messy, lived-in house on display.
Keep in touch, check-In, and remind them they have your love and support.
Cure Rare Disease, a non-profit organization (Tax ID number 82-2473513), is qualified as a tax-exempt organization under section 501(c)(3) of the IRS and has been designated as a “public charity” under section 170.