What I’ve Learned From Finding a Caregiver
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As my Duchenne muscular dystrophy has progressed, it’s become untenable for me to live on my own without outside help.
We’ve begun seeking professional caregiving assistance while my parents are away on vacation or work trips. It’s nothing major — mainly help with cooking, cleaning, getting into and out of the shower, picking things off the ground, standing, stretching, and being there in case I fall and hurt myself.
The process of seeking an aide has been a learning experience on how to navigate the social services landscape, communicate my needs clearly and concisely, and humble myself enough to ask for things that I could do but shouldn’t to conserve energy.
I’ve gone through the finding-an-aide process before — albeit in a slightly different way — starting in college at the University of Southern California. I created a sign-up sheet for physical therapy students to help me stretch for 30 minutes on the days I didn’t go to the student health center. I did the same with my roommates and housemates for assistance with chores like grocery shopping, cleaning, laundry, and a few other minor items.
Things changed slightly when I interned at The Washington Post in Washington, D.C. When the other intern who was living with me (and offering some assistance) moved out and my job was extended, I had to find someone nearby to help.
I quickly discovered Care.com, which is mainly used to find assistance for babysitting and caring for the elderly, but has been helpful in this transitional period of my life in which I can still do plenty of physical tasks but need help with straining activities.
With Care.com, I found an incredible aide in Washington, D.C. who helped my parents and me breathe a bit easier. Since we were paying them, I felt more comfortable asking them to do very personal things, such as helping me into and out of the shower and applying a topical cream to treat my athlete’s foot.
Back at home in Newport Beach, California, I’ve used Care.com to find another aide closer to my age who can help with whatever I need when my parents are away. In some cases, they’re able to predict what I might need assistance with without me ever asking.
I’m paying for my care out of pocket, but am in the process of applying for In-Home Supportive Services, which will provide financial support to bring on an aide full time. It’s been a long process, and I’m still not there yet, but it’s been good practice communicating what I need in a digestible way.
As anyone with Duchenne can attest, it can sometimes be hard to explain what your needs are. Just because I can do one physical activity doesn’t mean I can do another. I can walk short distances, but I can’t lift anything or stand for longer than five minutes.
I’ve had to get better at explaining why that’s the case and being firm with what I need. Now that I’m working with people who aren’t my parents, I have to make my requests clear. My parents have been with me for 24 years and often know what I’m thinking before I ask.
Now, I must be vocal about what I need and make my schedule weeks ahead of time. I feel like a producer in a big Hollywood film sometimes, wrangling actors, scouting locations, and ensuring everyone knows what they’re doing and when.
I’ve known I would need additional care for a long time. But now it’s a matter of making that a reality by learning how to manage other people, clearly explaining my needs, and organizing it all in my head.
With Duchenne, staying on top of my health is like having a second full-time job. It’s difficult to balance it all, but it’s helping me become a more successful, organized person at the same time.
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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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Comments
Tony Ssimbwa
Dear Miller,
As a Duchenne Dad, i find your personal Stories very helpful and they are helping me uplift my perspective towards my Duchenne son, When my Son Was Diagnosed with Duchenne Muscular Dystrophy two years ago, i never knew about it, However i was propelled to learn as much as i could about DMD. when i discovered what it was, somehow my heart sunk towards my son, at some point i felt there was really no need on spending much money on him towards a good education for him, i thought may be it was better to leave him at home and save the education money for his health care instead. BUT ever since i Virtually met you, and started reading about your personal publications on Bio News/Muscular Dystrophy news, my perspective has changed towards the future of my son, now i think that in order for Ayinza to be relevant to the Duchenne community he actually needs a better Education, Besides I learn a lot from your experience, which i think at the right time and Stage Ayinza will benefit from.
Thank you for giving us hope and courage Hawken.
May God continue to bless you with Wisdom, understanding, Physical and Mental Energy so that you continue writing for us, and changing Lives of the Duchenne Community.
God Bless you.
Hawken Miller
Thank you for the kind words Tony. This is why I do what I do!
Sheila Vasconcelos
Hi Hawken,
Every time I read your column, I always learn something important and today's article was not different. My son is 17 years old and I have been thinking a lot about his transition to adulthood. I confess that as a DMD mom, with a natural instict to protect, I am afraid of making mistakes and not giving him the autonomy he needs. Thanks for your sharing, it was very helpful.
Hawken Miller
Thanks for reading Sheila! All it takes is one step at a time, and the good thing is you are starting to think about this early. I can already tell your son has a loving mother and that's beautiful.
Eloise Brown
I have dm2 and was diagnosed in my late 40s. And really didn't have any major problems till after my stroke in my 60s. Now I have a hard time walking and lifting heavy objects and such. Sometimes my legs are better than others. This is all new to me. Is this commen with others out there. And we're cani finds one good reading material on this disease
Diane Semprevivo
Hi Hawken,
I have FSHD1. I have been utilizing care providers through the Division of Rehabilitation Services in Illinois for about 8 years. It has been a very difficult journey. I have had some wonderful care providers over the years. I have had some awful care providers who have robbed, neglected, and abused me. I am trying to remain independent but current unemployment rates, or should I say the lack of desire to work, are making it harder and harder to hold onto my independence in my home. I think an article should be written about the lack of financially reasonable care for the disabled in the US!