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.