The Revolving Door of Care Providers… the good, the bad and the REAL!

A peek into what assisted private care looks like and how to prepare for the rollercoaster of who to hire, fire and staying sane and safe in the process.

When you live as a differently-abled adult, you learn very quickly that some things are just going to be more challenging for you than others. I learned early on that to live independently I would need professional assistance (i.e. care provider/nurse.) When I was 18, right after graduating high school, I decided to move out my mom’s house in Palmdale, CA and move into my own apartment in downtown Los Angeles.

At the time, I was attending school at the Fashion Institute of Design and Merchandising (FIDM) and at 18 I quickly realized I would need to learn how to solicit, hire, train and pay (out of pocket) a complete stranger to help me 7 days a week. That’s a lot to comprehend at that young of an age, but I was determined to live independently and even more determined to defy the stereotype of staying home because I was “disabled” or I “wouldn’t be able to handle it”. My parents didn’t raise no punk! and I wanted to live a life that was as close to normal as I could get — moving out was the next step.

Now, don’t get me wrong, my mom was with me every step of the way (my father passed away when I was 12 y/o) and she helped me whenever I needed support, whether that support was spiritual guidance, financial support when funds were low (or non existent), or whether I just needed a hug; she was there. She always believed that I was capable of handling myself even when I was falling apart, and for that, my mother will forever be my best friend. She provided me the opportunity to challenge myself and since then, I have successfully lived on my own for over a decade.

Of course I’ve made mistakes, had to move back home for a few months to realign myself (and realign my budget) but throughout it all I’ve lived with the purpose of living independent. As the years rolled along, the one thing that people never understood about my life was my private care. People always thought my stress came from school, paying rent and bills, or just being disabled; Ha! I wish, that was the easy part — what was difficult and often times damn near unbearable was finding professional, ethical, and sincere care for my daily needs. Even to this day I am constantly struggling to find professional care.

For years I never expressed my frustrations, because I didn’t think people could truly understand my plight, but as I mature I am becoming more transparent about my life and it’s ins and outs. Finding private care is not like finding a babysitter like some have tried to compare it to, it’s like trying to make a clone of yourself to be in your home, assist you with the most personal tasks and be available to execute it when and how you need it done. In my case, it was very difficult because unlike some people in wheelchairs who may not be as active, young, or don’t require full assistance as I do — I am an active member of life with a full calendar and I need someone that can adjust to life and all its glory.

So many people always ask me “So what does your nurse/care provider do for you” and frankly I would beat around the bush and give VERY vague details because it was something I’ve never been comfortable opening up about… but it’s time to start speaking out. It’s time to stop changing the subject, because someone else may be struggling with the idea of living independently and not sure of the steps to take, how to handle the process … and I believe it’s time to educate the world on what assisted care is and a look into what my life REALLY looks like.

When I’m seeking to hire a nurse, I’m looking for a lot of characteristics and surprisingly, fancy degrees and years of experience aren’t my requirements. At the end of the day, a degree can’t teach you compassion and no amount of experience is going to change the fact that what worked for your last patient is going to work for me… so I’d prefer potential nurses come open-minded and willing to adapt.

Since I have always been a busy individual, I’m always looking for nurses that are not 9–5ers; my life is not 9–5, so my nurse shouldn’t expect to work a schedule that reflects a traditional day. Early on I knew I needed a nurse that could work a split shift (come in the morning and back at night) it’s not a highly favored shift but logically I need someone to come in the morning, help me shower, get dressed, style my hair, apply my makeup, possibly hold my arm up as I brush my teeth (only if my arm strength is too weak to do it for myself, which happens more now than when I was in my twenties), transfer me from my bed to my electric wheelchair (and vice versa), drain and disguise my catheter bag on my wheelchair — yup, shit gets real in the field, for those that never see me “go to the bathroom” or think “I hold it all day”?!?! I use a catheter.

About three years ago, I underwent surgery to have a suprapubic catheterinserted directly in my bladder. It definitely has its pro’s and cons but this is how I relieve myself. I’d go into further detail but I’ll save that for another blog post because frankly, my catheter has a mind of it’s own and demands a separate post lol. My nurse also has to assist me with my laundry and cooking meals. Now to some, this sounds like a perfect world, however, let me break that fantasy down:

My nurse is not a maid/chef; she is assisting me so all cleaning and meals are planned and made via my instructions.I run ALL the shopping and errands for my home! No matter if its food, miscellaneous, personal, all the shopping is done by me and only me. Since I don’t have a vehicle, it’s all done on public transportation — yup! I’m literally loading up my wheelchair hundreds of dollars of food, clothes, household goods, decor finds, even bedding items.If my nurse does not show up, there is no one to help me get out of bed!

That means I have no access to water or food, or the ability to shower until someone shows up at my door willing to help me. This is why it is so very important for me to have a reliable nurse. I have spent too many day and nights in my bed because my nurse(s) did not show up, did not call. This leaves me depending on friends or family to come out and help me.

Let’s say my nurse has an emergency or for whatever reason I can’t come to work, because shit happens… unfortunately, my life and it’s responsibilities are still there.

If I have some type of notice, I can try (and I mean try) to find a replacement — sometimes I may have a part time nurse on staff who can work the shift(s) in question but if I don’t have notice then 10 out of 10 I’m going to be stuck until someone can come. What if it’s a weekday and I have work; in that case, since I (like many of you) have to be at work at an early hour, this means I need a nurse to arrive to work very early in the morning (to be accurate, over the past five years I’ve been requiring my nurses to come at 4am so I can be out the house by 5:30am, on the Metro Blue Line by 5:45am and at work by 7am — as you can see it’s not an easy hour to get someone to cover, especially on short to no notice) so in this case I stand a great chance of missing work.

This may seem cool — miss a day of work, play hooky, but think outside the fantasy ya’ll, what if I have a deadline, meeting, etc. corporate America and the entertainment business does not care WHY you couldn’t make it, they only see you DIDN’T make it. So I personally don’t take many Paid Time Off (PTO) because I may need those days later (in case something really happens) and I can’t make it to the office. I’ve been fortunate, as of lately that some of my bosses are more understanding than others, but it hasn’t always been like this and you learn very quickly, no one is going to hold your hand and allow you to explain why. You either show up or don’t come… especially in the entertainment industry.

As an active adult I like to travel! I recently got my passport and I’ve been on a mission to travel and see new and exotic places of the world. I work hard just like everyone else (sometimes even harder) and I like treating myself, so I need a nurse that can travel, has a passport (or eligible to get one) and this can be very tricky when the nurse has their own family and obligations and can’t always pick up and vacation when it works best for my schedule.When traveling as a differently-abled person you need to take a nurse with you and in my case, as many other differently-abled people, we incur the fees for that individual — it’s a working vacation for them. I normally pay for my flight and my nurse, and all tickets/passes for excursions that I need assistance on.

My cost is double EVERY SINGLE VACATION! I could complain but at the end of the day this is my life and this is what I need to adapt. If I want professional care while I’m on my vacation (especially when international or when flying) this is what it takes. I have travelled without my nurse… it’s not always fun; sometimes I’d rather pay to have my nurse then to deal with what can occur when I don’t. There have been a few occasions when I’ve traveled with some friends and during those vacations I would pay for my friends portion of the trip, and she would also assist me as a nurse. I’ve only done this with two friends… its not something I’d suggest if you aren’t as close or have a great bond, because at the end of the day you need REAL care and need to have full trust that the person is going to still be able to provide care at a moment’s notice.

Sometimes I can’t always vacation when I want, and if I want proper care while I’m traveling, I need my nurse. In some cases I’ve confirmed the nurse can attend, all flights and accommodations have been purchased and last minute my nurse is no longer able to attend for unforeseeable reasons; and now I no longer can go on the vacation I have been planning for.When you’re considering hiring a nurse you really got to vet these people out… you got to start utilizing some type of probation system (mine is 3 months once the individual has passed a full background check; — until then, you don’t get keys or access to my home — unsupervised) The truth of their ways will come out very quickly. I’ve had some experiences ya’ll… where nurses have stole money, jewelry, I even had a nurse steal my brand new bath towels.

For someone like myself, who is unable to operate an ATM, if I need money and I’m unable to get cash back from a different service (grocery store, convenience store), I have to provide my nurse my debit card AND access code so she can extract the money from the ATM…this is nerve-racking because this provides full access to my money! Hence, why I’m ALWAYS looking at their character, values, and I’m leaning on faith and THEIR honesty when hiring someone.

One of the most important characteristics I’m seeking in my nurses is compassion; this is not a typical job where you clock in and clock out… and it’s over. This job goes beyond traditional work hours, if I’m sick or need additional care, I need my nurse to CARE and actually provide the necessary assistance. I live alone, which means when my nurse leaves, I’m alone for hours. More than likely, I’m in my bed — although comfy, I have no way of getting out of it; some may say it’s not smart for someone like myself to live alone, others may see it as an inspiration… but at the end of the day I live alone so in the event that something happens (because in life shit happens) I need to know that I can call my nurse and she’ll actually answer the phone and if feasible, she will come and assist me. Obviously, we as patients can’t abuse this, but I feel that it’s really important to find someone who is leading with their heart because this is a heart business, meant for those who CARE.

As you can see hiring and retaining a professional, caring, ethical nurse is no easy task. I’ve had a lot of failed attempts and there is no “right” way to do this. For the people reading this that may be differently-abled and scared to take the plunge, know that you’re not alone, the people before you made the same mistake or even bigger ones, also know that you’re going to make mistakes, you’re going to hire somebody that you thought was going to work out and then the next day they don’t even show up for work, you’re gonna lose a great nurse because another job offered him or her more money/benefits.

You’re going to lose money, whether it be in a cancelled vacation, concert, hours worked /or not worked), some may steal from you, others may lie to you, some may even drop you mid-transfer — yes I’ve been dropped a couple times; but know that you can and WILL survive this revolving door of nurses, and with every mistakes you make the better get at preventing the next one and the closer you are to finding the RIGHT nurse for you and your neeeds.

However, just in case you need a tad bit more guidance, I’ve come up with a couple suggestions:

- Never hire anyone who is unable to adapt to your needs.

- At the end of the day, you are the main focus and your needs must be acknowledged and met.

- Always perform a background check and keep an employment application for your own file keeping. I’ve made an application template that I’ve used throughout the years.Ask for references AND actually call the references. Ask the tough questions, vet your potential nurses out as much as possible!

Always have a secondary number AND a family member’s number on file for your nurse.If you’re not happy, don’t be afraid to fire someone. Hiring and firing are going to be a major part of your life.

- Tread carefully when hiring friends; lines can be blurred very easily. If you do hire a friend, establish boundaries. Be willing to compromise! Be open to try things differently, even if not what you may be use to. This could be the difference in receiving proper care or inadequate care. Always have a backup (Friend/ Neighbor, On-Call Service) This may be difficult at times, however, TRY!

- Remember, Nurses are people too, they aren’t robots and need to be treated with respect and understanding. Life happens, you gotta be able to adapt to what it throws you, even if you wanted it to go differently.Nurses are getting paid for their time; Respect their time and don’t abuse their time.

When soliciting for a new nurse I suggest the following: Craigslist — Paid Ad cost $5.00 per 30 day cycle

- College/Vocational

- Nursing Schools

- Care.com

Churches/ Places of Worship — Have them place post on their community board or in their weekly announcements.

- Friends/FamilyShout-Outs on your social media pages

- Word of mouth

- Government Programs/Services

I hope this blog post allowed for a real education opportunity into my life and what I actually need to actually live my life on an everyday basis. Also hope this post provides guidance for those seeking to break out and begin living… independently and vibrantly!

Until next time, this is my world… on wheelz!