This is a bit longer than my usual posts. Recently my friend sent me a text asking if I
would share my story of caregiving at a meeting of the Caregiver’s Coalition in
our county. This is the speech, and
Hillary was with me.
My name is Sue and this is my daughter Hillary. She is 19 years old and was diagnosed with
Aicardi’s Syndrome when she was 6 months old.
Aicardi’s Syndrome is a rare disorder, only about 500 cases
worldwide. The three markers of this
syndrome are absence of the corpus callosum, which is the part of the brain
that connects the two hemispheres; seizures that cannot be completely
controlled by medication; and very specific shaped lesions on the retinas. Hillary is considered moderately affected by
this disorder. She is legally blind in
one eye due to 11 lesions on the retina, and has near normal vision in the
other which has only 3 lesions. She has
clusters of short seizures on average 3 times a day. She has no verbal communication, cannot walk,
and cannot take care of herself in any way.
She relies on those around her for everything—changing, rolling over in
bed, getting into and out of her chair, bathing, and feeding. She eats only mashed or pureed food and
thickened liquids but doesn’t take in enough for good health so has a feeding
tube as well. I am her mother and her
primary caregiver. My husband and my
adult daughter pinch hit for me, but 99% of the time I’m on deck.
Caring for Hillary has impacted me in many ways. The emotional impacts cycle around the same
as the grieving cycle does. Disbelief,
anger, and sadness are likely to hit at any time, sometimes brought on by
something as benign as a TV commercial.
There have been times that happy occasions took on a bittersweet tone
due to this cycle. Whether it’s because
she couldn’t join other children in a basement playroom when at a dinner party
at a friend’s house, or because there’s no room for her wheelchair at the
holiday dinner table it’s sometimes a hard pill to swallow.
Financial impacts come from the cost of supplies and
equipment that are either not covered by insurance or Medicaid at all, or are
only partially covered. Also impacted is
my ability to work at a full time job.
I’m lucky to have found a part time job in the school system so that my
schedule and Hillary’s are about the same, limiting how often I need my husband
to take time off to stay with her. There
are only so many days that can be taken off a year and some must be saved for
illness or emergency.
My health is probably the thing most negatively
impacted by caregiving full time. I have
chronic back problems which are made worse by the physical demands of moving my
daughter. Other health issues are impacted by
the need for someone to always be with her.
I have scheduled surgery around her pick up and drop off times from
school. No matter how I am feeling the
same care needs to be given. I’ve had
pneumonia, stomach bugs, vertigo, and cellulitis at one time or another and
still had to get up at 5 a.m. and get her up and out the door to the bus. It's better to send her off to school so I have 6 hours to rest than to keep her home when I'm not well. Being a caregiver is a non-stop, no time off
full time job.
I wear many hats as Hillary’s caregiver. First I am her mother. Other hats I’ve worn are nurse; physical,
occupational, and speech therapist; wheelchair tech; case manager; and
advocate. Last year the brakes on her chair broke and although the vendors are
quick to come out and diagnose a problem, they are extremely slow in fixing
it. In spite of my having given them my
credit card information and asking that they go ahead and order the part so the
repair could be done quickly it took at least 6 weeks for the repair. In the meantime, I figured out a way to make
it work. I’ve gotten money back from a
health insurance company when they were not processing claims properly, I’ve
gone toe to toe with school administration, and I’ve fought with the DDD to get
the help and equipment we need to keep Hillary at home, in her community and
happy. I’ve written countless letters
over the years and one of the things I’ve learned is to never send a letter to
only one person. I copy many people on
every letter I write to anyone. I’ll
copy to the person’s supervisor, their supervisor, my state representatives and
senator, the head of the state agency involved, the public advocate, the
governor, an advocacy group, and anyone else I can think of. The more eyes that are looking at a letter,
the harder it is to simply brush me off. Eventually someone will look at that
letter and say “hey, this isn’t right” and make a call that gets things
going. I’ve also learned to keep most of the emotion
out of the letter and to be specific as to what type of help I am seeking. Keeping a more businesslike approach has
served me well. Another area where this
approach has been useful is during meetings.
When I have felt my emotions getting the better of me, I have stopped
the meeting and either taken a break or asked that we reconvene another time,
or suggested we finish up with a phone call in a few days. This approach has allowed me to be the one in
control, not someone else who doesn’t know my daughter as well as I do.
My greatest caregiving needs are equipment and respite,
and I don’t think there could ever be enough respite. The logistics of getting Hillary around and
making sure there is someone to care for her when I am not there are at times
daunting. I can’t accept an invitation, make an appointment or even go to
the store without thinking about what Hillary will be doing, where will she be,
who will be with her. With our
wheelchair conversion van I can take her most places if need be. There are times, however, that it is either
inappropriate or physically impossible because of barriers to the building to
take her with me. If my husband has to
work late, my older daughter is working or has a class, and my respite worker
is unavailable I may have to turn down an evening or weekend invitation or
cancel an appointment. If our van breaks
down, we are stuck, and Hillary goes nowhere except to school. We have a patient lift in our house which has
been wonderful, and if that ever broke we’d have a serious problem as we are
unable to lift her without it.
I don’t mean to focus on all the negatives. Hillary has been in public school in our town
for 12 years. She’s been in chorus, been
a girl scout and in town parades. We go
shopping and to festivals, fairs, parties and places most families go. We’ve learned, because of Hillary, to truly
relax while we’re on vacation. She
cannot keep up with a frenetic pace, so vacations are the time we really slow
down and just rest and unwind, visit one attraction a day, or just enjoy the
town we’re vacationing in.
In closing, the past 19 years have been challenging,
but at the end of the day, when she’s snuggled into her bed, Hillary is simply
my baby and I am her mother.
