I want to delve right in and talk about the most, in my opinion, gut wrenching aspect of being disabled; the state of health care today…no, seriously. It is an enormous issue. Not in a ‘big big hospital, corporate health care kind of way,’ but in a ‘if my caregiver calls out of work how am I going to go to the bathroom or worse yet, take care of my son’ kind of way. People often say, “Well, just call in a replacement, call family, call a friend.” It’s just not always that easy. Everyone with limitations has different needs whether physical or psychological. For those of us with more complex care, we depend on those with medical expertise to help us complete the most necessary, yet mundane of tasks. Sometimes, like many elderly, we just need a helping hand. A second person in the house. Many, like me, need the help of a Certified Nurses Assistant (CNA), a Licensed Practical Nurse (LPN) or even a Registered Nurse (RN) to escape the clutches of life in an institution. Institutions don’t offer the quality of life found in our own homes. Life on the outside comes with a lot of perks, mainly freedom, but it also comes with serious emotional and logistical downsides, such as: how do you secure care, agency or private, which is better, what about family? Couple these questions with a country wide nursing shortage and a crazy downward trend in younger generation’s work ethic, and it’s easy to see how we with disabilities have a HUGE problem.

Now there’s a big basket of BS that has contributed to the the world wide nursing shortage, most of which center around the aging baby boomer population, low wages paid, and, unfortunately, the type of people looking to fill the job. Don’t shoot the messenger, I’m not the only one of this opinion. Check out this New York Times article here. What may just seem like a sorry future for Americans with disabilities, is our current day to day reality. Now let me backtrack to the points above and explain.

So you’re disabled, right? Well, whether you were born that way or had some type of life event that sent you to the hospital only to have to hire help in order to go home, you or your family had to at some point decide whether to hire an agency or privately hire. I started off with an agency, the Visiting Nurses Association (VNA) to be exact, and at twenty years old after a eighth of a mile drive in my chair up to the hospital to attend a friend’s baby ultrasound, I was told that VNA was “in-home” care and I was expected to stay there. Now I had let my caregiver know that I wasn’t in need of assistance for the duration of the appointment, so she went and checked in with her office. That caused an uproar. Apparently I was not allowed to be alone, even with a friend, even for only a half hour or so…in a hospital. Not only that, at the time they were not able to drive me anywhere in my van. Crazy, I know. Needless to say, I decided to hire privately after that. Now, with a fourteen month old son I still have to hire privately. Many agencies will not include care for him. The workers compensation insurance responsible for my care would require a WWIII battle to pay for a nanny also. I could probably argue for some daycare coverage or get some state assistance because of my disability but really, I don’t work. I don’t want to send my son to be raised by someone else, so that I can receive care. That’s not fair to either one of us. As an active horse person my lifestyle is just not conducive to having most agencies provide my care.

For one, my care is particular and so am I. I don’t want a revolving door of caregivers up in my business, in my home fifteen hours a day. I doubt anyone else disability or not, would either. It’s an intimate relationship that forms between patient, family, and caregiver. Many agencies make a real effort to send the same people, but with high turnover rates and the shortage of nurses assistants this can be very difficult. So you have new people frequently, they don’t do anything but light house keeping and won’t help with the baby. Not for me.

The alternative…hire privately. Sounds good right? You can hire someone to do whatever you need. In my case help with my son, clean the house, garden, and help me drive. But where do you find these people? Over the years I’ve had my best luck through www.craigslist.com. I’ve also tried getting a list from my local hospital, newspaper advertisements, and Facebook. Since I am looking for someone with a unique skill set it has been hard to find help. As the years have gone by, ridiculously hard. Couple that with needing at least one person who can travel when needed and I have gone without a full staff for years at a time. Forget having enough people to fill in. That leaves the burden on my family. For me, that’s my mother, a veteran RN, who is not yet at retirement. Over the years most of my caregivers have called out sick, knowing my mom would cover, using her devotion against her. Leaving her feeling used and angry at their lack of responsibility and me feeling like even more of a burden.You get to a point where you’re just willing to hire a warm body and cross your fingers that it won’t blow up in your face.

It’s a roll of the dice with three possible outcomes. First, and most probable (as seen in the New York Times article), you have lesser educated, low income, minorities. Now here in Vermont we don’t have many minorities. We do have less educated low income women who get their CNA just because it’s easy to do and there are many educational grants available. Second, you have people who get their CNA as a steeping stone, or addition to, their future schooling to become a RN. They have higher aspirations, are usually committed, and will be moving on shortly. Third, you have those who got their CNA because they truly love helping people live their lives out in their homes. They’re dependable and become part of your family. Even if they move on for whatever reason, they stay friends and stay in touch. These people are worth their weight in gold and are damn near impossible to find. The first two groups often fall prey to the same lack of work ethic that seems to have affected many of my generation (Generation X), and is increasing in frequency through the younger generations (Millennials). As a person who depends on someone else’s help to just go to the bathroom in the morning, poor work ethic is the worst trait in an employee and one I see often.

So what happens in my house when I’m short staffed already and someone calls out. Crying…I’m not kidding. My mother stays with me and the baby at night as well as covering two days a week and works part time at our local hospital. She also can’t drive due to a recent concussion. So, when someone calls out she is already taxed. Hence the crying. She cries from exhaustion. I cry from guilt, anguish at my life’s turn of events, and the all consuming terror of acute vulnerability that comes with not being able to care for myself, my son, or my mother as she ages. I cry from the heart ache of knowing that I have become a burden to those I love regardless of whether or not it is a burden they gladly accept. Every single time this happens all I can think about is what will happen to me and Gabe if, God forbid, something happens to my mom. Nothing I can write here will adequately describe the terror and loss felt when unwanted thoughts pop in your head saying, “My life wasn’t supposed to be like this. I never wanted this. I should have just died because I hate this.” No matter how well adjusted you are to your situation we all have our moments of overwhelming grief for what we think should have been. Moments where the thoughts of our future leave us with throat tightening anxiety. As a community of aging and disabled human beings we need to work together to find solutions. Consider this my entrance into the conversation. Luckily I have friends who are also caregivers that I can sometime call, but they have their lives too. I’m always left depending on their kindness and love for me to fill in the gaps. A fact I try never to take advantage of, but always seem to have no choice about. I can only imagine what my world would look like without this constant worry.

So what’s the solution? I’m not really sure. I have tried advertising in different places. I’ve fought the hard fight with my insurance company to finally, after fifteen years, get my caregivers a raise in pay. I have bent over backwards accommodating my caregivers to the detriment of my myself and my child. I’ve even thought of taking on a live in, maybe from another country, but haven’t gone that far yet. Living in rural Vermont I wonder if I need to move to a more populated area in search of the care that I need. Maybe I’m just an ass to work for (a distinct possibility). That last option, moving, is one I will be most likely to choose in the near future. I have a goal to move onto the same land with one of my most dearest friends but my situation always leaves me thinking…What about those without support systems? It’s something we need to be thinking about as a country, What will happen with our retired baby boomers? No one should feel like a burden to their family and friends. No one should feel so vulnerable they sometimes wished they had died…No one. As a society we should at least guarantee our most vulnerable have more than just the most basic of securities. As it sits we don’t even have that. There must be a solution. I have an idea, but that’s for another post.