We have had home nursing for a little over a month. We use only 2 shifts a week, intended for ‘respite,’ or a break for us. So, as of the middle of last week, we had had a total of 8 nursing shifts so far. And I truly didn’t think I could handle having nursing anymore. This will not be a surprise to other special needs parents who have nursing. But I know others outside of this medically complex family lifestyle often struggle to understand why nursing (or many other well-intended helps and fixes) can be more of a burden than a help. Let me explain.
First, how could professional nursing help, paid for by insurance, possibly be anything but a welcome blessing to a family with one child with complex medical needs and a total of three children under 5? I addressed many such reasons in a previous post about why we oh-so-happily declined nursing two years ago. A few examples of how these reasons manifested in real life in the past month:
- These 8 nursing shifts have been staffed by FOUR different nurses, and we are soon to receive a FIFTH. So during these “respite shifts,” I’ve met, screened and continuously trained four different people. Enforced boundaries big and small with all of them. Navigated four new personalities while assimilating them into our daily routine. Not to mention the first nurse we had, I trained for a few hours, and she enthusiastically discussed her upcoming schedule for the week (along the way, breaking a few HIPPA rules and her own company policies I noted), then she left to pick up some missing paperwork for our case at the nursing office and never returned. She never called. Didn’t show up for her next shift. And the nursing agency informed me that she was completely new to them when she took our case, and after disappearing from our house she wasn’t returning any of their calls either. This strange incident left us scrambling to figure out if she had access to any of June’s, or our, financial or identifying information while she was at the house, because children with disabilities are vulnerable targets for identify theft and fraud.
- The only reason nursing would be helpful to me is to have help directly observing June 24/7 to watch for trach plug emergencies. As I mentioned in the previous post, handing *June’s* emergency trach changes is a task that many trach-trained nurses would not even be up to. The only emergency trach change that occurred while a nurse was here, I handled myself, because the veteran nurse with decades of trach experience had just finished telling me, “It’s been 20 years since I’ve had an ambulatory patient [one who can walk/has strength and motor control],” and she wasn’t sure if she could handle the quick-thinking wrestling match that an emergency trach change with June requires. Indeed, she was pretty wide-eyed after the trach change, and regarding her ability to handle a similar one herself next time, she offered sheepishly, “I can try.”
- Despite reassurances from the nursing company to the contrary, our nurses are not able to end a shift away from our home. Meaning, we have to be home at 5pm. So, when I needed to meet Greg at work with the kids in order for me to leave for a much-needed mom’s night out? I had to send the nurse home early. When we scored a last-minute doctor’s appointment but the only slot available was 4pm? We had to change the appointment. When an early afternoon appointment unexpectedly went long? I did not have the freedom to stop for dinner, or an impromptu play date, or a museum tour while rush hour died down. Instead, I had to plod through the thick of traffic for two and a half hours, three screaming kids in tow, with a nurse anxiously texting her husband about our ETA at home (and her shift end) which ended up being an hour and forty minutes past her planned end-of-shift. And because of our limited nursing hours, not only did the nurse end up missing her chance to see her young child before she went to bed that night, the company may not be able to compensate her for the over time. Obviously, that was a terrible afternoon for all of us, and how I wished I had been able to take the kids to see the new amber exhibit at the “dinosaur museum” instead, like we normally would have done.
- BUT WORST OF ALL. As an introvert, interacting with people other than my little family drains my battery and I need to recharge it in solitude, or near solitude, like driving without other adults in the car, or like supervising the kids while they’re engaged in something else such as the museum trip, both of which were *prevented* by having nursing. At the end of last week, when I happened to have people in the house every day with no way to recharge, my battery drained to absolute zero. At zero internal resources, I couldn’t bring myself to engage at all socially. I stared straight ahead and avoided eye contact and talking. Since the nurse was engaged with June, I turned a self-protective shoulder to June, too, which I hated doing. Ultimately I decided to send the outsiders home and to recooperate by treating to kids to chick-fil-a- hoping to get a little near-solitude while watching them stay occupied in the playplace. But the momentum of the stress and depletion continued, and I ended up wracked with stomach cramps. I had to call Greg to leave work early and meet me and the kids.
- Stewing along with all of this are several upcoming decisions about June’s therapy schedule and schooling decisions, with differing opinions being thrown in the ring by myself, ECI, the school district, the doctors, the caseworkers, the therapists and even other special needs moms.
I share this in order to explain a larger truth:
The “help” that is available to special needs families is often very different in practice than what it is imagined to be by those suggesting it. And for that reason, special needs families must be able to CHOOSE what help is appropriate for them.
Respite would be helpful if it worked as it ideally should, but in REALITY, I have spent far FAR too many hours in the last year stressed and dealing with problems caused by this nursing process. Hours and energy that I don’t have available to waste.
The reason why this nursing problem exists at all is that someone who is not in our situation decided nursing should be forced upon us, “for our own good.” (Our Medicaid requires it; also see here why our situation and insurance necessitates the use of Medicaid.) While I heartily support resources being made *available* to special needs families to utilize as their unique situation calls for, forcing families across the board to accept unwanted advances of charity is by no means helpful, or even respectful. We have similar battles every time a course of treatment or therapy is suggested that we know from experience detracts more from June’s well-being more than it helps (if it helps at all). We are purposeful about educating the professionals involved about our actual experience of such helps, and why we feel various options are not a good fit. But even if ONE battle is laboriously won with ONE professional, more suggestions and demands meant to help continue to be thrust at us at every turn in this journey.
Why is this? What about having a special needs child could possibly imply that we no longer have the capacity to manage our own lives, schedules and homes? Why should we suddenly be subject to any and every idea of “helping” that others conjure up based on their limited observation of our life, AND their limited knowledge of what that “help” actually consists of practically? Indeed what about this situation makes it acceptable for “help” to be inserted into our very living room by the government?
It is actually related to an innocent-sounding myth that often appears when people see a special needs family like ours:
“They need all the help they can get.”
It comes from the right place, on the surface. But lurking just below is condescension and a denial of common dignity. Allow me to dispel this myth.
First, this myth paints special needs families as pitiful and helpless, in a constant state of need. Actually, we are quite capable of seeking help if we need it.
Secondly, this myth that “we need all the help we can get” carries with it the implication that it is acceptable, even encouraged, to attempt to ‘rescue’ us without invitation or permission. Meaning that anyone can freely assert their opinion, will or resources on us, our home, or our time as long as their heart is in the right place.
Being the recipient of misguided and unwelcome generosity doesn’t sound that bad? Where shall I send your gift basket of puppies?
To refute these assumptions of helplessness and denial of self-agency, I must say:
We, as a special needs family, are resourceful and intelligent.
And as the sole experts on our situation, WE should decide what our family needs and doesn’t need.
And what does my family need right now? RESPITE FROM OUR FORCED “RESPITE.”
To spend my time snuggling with my kids instead of corralling the dog while texting with nurses about why they are late this time.
To be able to pull the car over to nurse my wailing infant, play at the park, or stop somewhere for a snack without the danger of holding an employee hostage in the process.
To go to the dinosaur museum- or arboretum- or zoo- or fair- after doctor’s appointments. Or anytime, really.
To be able to wear pajamas past 7am.
To meet my husband for dinner on a whim.
To watch my kids, clean, and cook without a stranger sitting at the kitchen table.
To be able to devote time to my small business anytime I decide to, rather than being technically forbidden to “work” while a nurse is providing respite hours.
What do I want? Simply put: TO BE LEFT ALONE by those who want (and succeed sometimes) to force their will on our complicated life. To be treated with dignity that DOES assume that we are capable of assessing and meeting our family needs by seeking OR declining the range of tools available to us. And for people to understand that having a family that is different than ‘the norm’ isn’t “a bad thing to be fixed” or compensated for or pitied. For people to stretch their imagination enough to believe us when we say: Far from being pitiful and in need, we like our life. No, it’s not your normal. But it’s our normal. And it’s a unique adventure.