My last post, reflected on the Father’s Day fears of my husband, an aging father of an adult daughter with severe disabilities. Just five days after it was published, our family experience moved past fear and moved closer to the reality of our future. In an instant, George’s abilities, my responsibilities, and our combined ability to dedicate time to caring for Lauren changed.
While visiting with Lauren, my husband fell fracturing his right hip. Five days of hospitalization an hour away from home, hip replacement surgery, and two weeks in rehab ensued. At eighty three, with other complicating health conditions his recovery is slow. Seven weeks post surgery, he is still walking with a walker, needs help with much of his personal care, and I drive him to physical therapy and doctors appointments three or four times a week. We don’t know how many of his prior abilities he will regain. Will he be able to drive again? (It’s his right hip) How much of his general mobility and skills will remain impaired?
Those are important questions for him and for me. I can’t leave him alone right now for more than a few hours. He drops his phone He spills a glass of water. He needs me for a myriad of reasons. But Lauren needs me too. A couple of weeks ago her seizures suddenly started escalating—longer and stronger. It’s the first hint of instability in her seizure pattern in many years. I admit—I went into panic mode. We lost our neurologist of thirty years a year ago when he suddenly stopped seeing adult patients. Now we have a new neurologist who does not have the experience of partnering with parents to literally keep children alive through the tumultuous years of childhood seizures. The former doctor and I weathered the medication changes, adjustments, combinations, and now a new doctor seems totally unfamiliar with the trauma and trials of those years......and all it taught us. So, I am scared that this new doctor is untried, untested compared with our old one. And, I am scared that if a significant seizure issue develops, Lauren will have to be hospitalized. What on earth would I do then?
I would need to be in the hospital (also an hour away from home) with Lauren. But I cannot leave George alone. Sure, we have family and friends, but no one in a position to step in to help at this intensive level. People have jobs and their own responsibilities. I can’t depend on Lauren’s DSPs helping because they would not be paid under Medicaid rules. The State budget that pays for Lauren’s DSPs is Medicaid dollars. Her hospital care would be paid by Medicaid. They do not pay for both at the same time. It’s a huge issue for many individuals who are hospitalized and need the continuing care of experienced, familiar caregivers. It’s something that is a serious worry for Lauren’s future when I am no longer here.
If you’ve experienced any loved one being hospitalized, you know that a constant advocate needs to be present during that hospitalization. While George was hospitalized, he could answer questions, ask for help, yet I still needed to be there to deal with constant medication errors and issues with care for him at a highly-rated hospital. How can someone like Lauren— non-verbal, cognitive disabilities, unable to feed herself or participate in her own care—survive a hospitalization? When this question was posed to the head of the state division serving those with developmental disabilities, his response was that the hospitals would just have to train their people better. The response is obtuse, incredibly naive, dangerous, and downright cold.
We have adjusted Lauren’s seizure meds and.....so far, so good. But now a new worry has surfaced. One of Lauren’s DSPs is having a knee replacement and will be out for three months. We’re in the middle of an escalating DSP workforce crisis across the country, and we lost our sub a few months ago. Will we be able to weather this vacancy without the need for me to cover shifts? I can’t be in two places at once.
Needless to say it’s been a stressful last two months. I haven’t published a new post since this all happened because there simply has been no time to write. My life is consumed with George’s, and Lauren’s, needs. I struggle to be everything I need to be for them both. I frequently write about fears and worries for the future. Now I find the present is that future I so feared......and rightly so.
My focus of many years has had to shift. My attention cannot be as much on building an acceptable future for Lauren as surviving the present. I am just fiercely treading water. So far, I’ve been able to meet everyone’s needs. George is recuperating. Lauren is stable again. There are no vacancies in staffing for at least two weeks. In essence, no one is drowning.....today. I’m just hoping that I’m not put in the position of having to choose between which one of them I reach out to save.
is the author of Special Needs: A Daughter's Disability, A Mother's Mission. Gail is an accomplished advocate and writer in the field of developmental disabilities and Mom to Lauren, a young woman endeavoring to lead her best life despite severe challenges.