November 16, 2015
After a severe stroke left my mom with disabilities in movement and communication, everyone in the family was confused and concerned. We had no idea how much, if any, ability would come back in the weeks and months after the stroke. We also had no idea just how much we would all have to do to care for mom.
My mom, like one third of all stroke survivors has aphasia. This loss of language ability compounded many of our duties as caregivers, which we figured out on the fly, and are more involved than the basics: cooking and cleaning. Below are just some of the many hats that I’ve had to wear as a caregiver.
Insurance advocate. For speech therapy, insurance companies often speak about a “plateau”, a period when the benefits of therapy are not “meaningfully measurable”. They stop paying for speech therapy or limit the number of sessions. This often comes at a time when the survivor is starting to get their footing and a family finds an equilibrium. And let’s face it, insurance companies are always making “mistakes” when it comes to coverage. But a person with aphasia cannot always advocate for themselves. So, caregivers often spend hours dealing with insurance paperwork, co-pays, and reimbursements.
Secretary. For some correspondences, written and in email, I have to read them to mom and then, when I can, respond on her behalf. For independent messaging, I created Tapgram, which definitely helps in terms of helping mom feel in the loop with friends and family near and far.
Translator. Also known in therapeutic circles as a language partner. This is someone who helps a person with their day-to-day communication. They can be a buffer to prevent misunderstandings and a bridge between friends. While the goal for people with aphasia is to communicate independently, many rely on their language partner for everything from day-to-day errands to special events.
Logistician. Many people who need care also have difficulty using computers or the the telephone. So it falls to the caregiver to make and track therapy, doctor, hair, and social appointments. Pretty much all of the stuff that make up a person’s life have to be managed. How we did this before Google Calendar, I’m not really sure.
Accountant. Taxes? My mom hated doing her taxes before her stroke. Now that she has aphasia, I’m a necessary go-between for her and her accountant, who is totally helpful.
Banker. I use electronic banking to handle most of her day-to-day expenses. It’s a godsend when it works, which is most of the time. When it doesn’t or we have a problem that requires a conversation, we go to our local branch, where they know mom and are very patient with her. Caregivers have to organize a day off and work around in order to make that in person meeting happen. Unfortunately, mom cannot reliably answer security questions on the phone (and there is no special security provision made for people with aphasia – if you can’t answer the security questions on the phone, they can’t help you).
Diplomat. Mom has friends who still have a really hard time spending time with her. It’s very sad to see people who she was once very close with, pretty much disappear from her life. I remind myself that people have different thresholds for seeing adversity, illness, and disability in others – especially a peer. In this situation, I try to make it as easy as possible to arrange meetings and gatherings.
Therapist. It shouldn’t come as a surprise that people with aphasia frequently get depressed and angry. Also unsurprisingly, the people who take care of them can get depressed as well. With all these duties, its a wonder that caregivers get any time for the things in their own lives. For me, my role as a caregiver has had ebbs and flows. Periods of equilibrium are punctuated by periods of acute crisis. When things get hard, I remind myself that there will be a new equilibrium and that challenges – however seemingly insurmountable at the time – can and do get managed, if not totally overcome.
Life as a caregiver can be frustrating and satisfying – often at the same time. It’s always changing, sometimes for the worse, but often for the better.
About the author: Chad Ruble is a board member of the National Aphasia Association and the Founder of Tapgram, a web-based assistive message platform. With the help of his wife, he takes care of his mom, a stroke survivor who has aphasia, their two kids and a puppy.
*A version of this post has previously appeared on Tapgram’s blog.
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