YES INDEPENDENTLY - Updated!

Living with a physical disability often means hiring someone to be our "arms and legs." Depending on our abilities and level of care needs, are what determine just how much assistance we may need....
ALWAYS A WAY
I am one of those individuals. In my situation, living with a neuromuscular disorder called Spinal Muscular Atrophy type 3, means progression of my muscle weakness.  That means as the years have clicked by, my level of care needs increase. My hands can still type this article, albeit slowly, but my arms can't be raised. I can sort of  try to move my right forearm to reach something on the table, by "walking" my fingers across the table surface. Can you picture that? :o) It is amazing how we can come up with ways to figure out how to do things in a different or new way, on our own, when your abilities are changing.
For me, it has been  a blessing, to know that my muscles were/are going to slowly stop cooperating over the course of my life. It is one of the reasons that this blog is called Walking, Way Overrated. I did walk and for me, that ability slowly crept away. It wasn't a huge loss, because I had been prepared for it.
Mind you, these days, I must confess, that in spite of knowing what may happen next, I am a bit nervous. As long as I had the basic the use of my hands and forearms, I could still create, cook, shop,  knit, sew, garden, sort of hug and things like that. As of this moment, fifty percent of that isn't possible anymore. But thanks to my dear husband, I get to direct his hard working hands to shop, prepare and cook, not mention the many other ways he helps me out.
As for being a visual artist,  I find myself trying to get all I can done.  (my recent passion has been working in polymer clay) Working steadily whenever I have the energy and health to.  My thinking being, work while you still can. Just incase, the day comes, my hands decide to not work with me anymore! My dominant hand is the right one, the left one's job is to drive my power chair :o) So far, so good. CLICK HERE if you want to check out my artistic side!
It's all in God's hands. Ha, my hands are happily in HIS Hands!  I trust His provision. It's just the one function that I didn't really plan on losing before He takes me to my Home in Heaven!
These changes lead to automatically problem solving, as  many of us go. There's always a way,  if not with our own limbs, especially with the assistance of friends, family and PCAs!

LIFE CHANGES....NOW! 
Craig didn't always use a wheelchair. When he faced pretty much sudden changes in his lower limbs, he ended up having to live in the hospital for about three months in rehabilitation. At that point, in total, he had already been in hospitals a total of about six months. Anxious to breathe the fresh air at his home on the lake, he asked to go home. Turned out, it was too soon. In spite of the fact that he had to remain a rehab out-patient for aa total of two years. When he talks about it now, he says that he definitely should have lived a bit longer in the hospital. But he did it on his own, with a bit of assistance from an outside homemaker program. He lived on his own, with no one to call on for help. He happily shares how called on God's help daily! Craig has many amazing stories, miracles really, of how he was clearly helped physically many many times by God's ministering angels. No, he doesn't worship angels, we know though that the Bible says they are ministering spirits sent to help God's people. I too have incredible stories about God's protection, provision, and just overall help in every day life.
A good lesson to learn from Craig is, if you are facing changes to your body like that.  As anxious as you may be to get out of the hospital setting, make sure you feel completely comfortable, fully equipped to live your new life, having all the physical supports you need.
PRESSING THROUGH
Over the course of our lives, Craig and I, have admired so many who have embraced sudden life altering injuries and illnesses. Not meaning they were happy about the changes, but they worked through it all with the help of family, friends, programs like rehabilitation, occupational therapy, physical therapy, independent living classes, problem solving, learning new ways to live their changed life. And many of us would say, nothing would have been possible without Jesus Christ being our strength (Craig and I "amen" that!)
The many people we admire, are lives that were changed suddenly, from able bodied, to paralyzed from the neck or waist down, diagnosed with progressive Multiple Sclerosis, or Neuromuscular Disorders such as ALS, and other issues,  they may not have welcomed the life altering events with open arms. In fact, I don't know too many who would. In fact, there are countless stories of those who asked to be removed from life support or have something done to end their life on purpose.  (One huge reason why the recent discussions in Canada, about the legalization of euthanasia, deeply saddens me and many of my peers)  One friend we know was in a motorcycle accident, receiving a serious head injuring, leaving him paralized on one side of his body. He told me once that he was on life support and wanted to be unplugged to die, believing life wouldn't be worth living. This dear fellow continued to share with me how thankful he was that no one pulled the plug. His life was a blessing. In fact, he fell in love and has been happily married for years now. They live together, with the assistance of Personal Care Attendants like I do.

Life has taken on a whole new meaning to so many of us.
I remember a neighbour once that told me in his broken communication that he once was so depressed that he tried to take his own life with a shotgun. Left with a severe head injury, he would never be able to walk without a cane, or speak clearly and smoothly, nor would he be able to write and spell like he did as an adult. But, he told me that he was so thankful that God saved him from his really wrong choice. Yes, his case was unusual and self inflicted but, if you ever faced depression, it can swallow you up if you let it, leaving you unable to think clearly and wisely. Personally, Craig and I believe depression that intense, is a spiritual battle in most cases. I remember feeling it myself as a teen, but thankfully was too terrified of dying. My point is, our friend made it through a tragic, life altering event and was happy to be alive. He too spent time in rehabilitation learning new ways to carry out daily life.
My Heroine...

 Joni Eareckson Tada, broke her neck in a diving accident in 1967. As she faced quadriplegia, never walking or feeling from the chest down, this side of Heaven, she too asked a friend to cut her wrists. Believing the lie that her life was no longer worth living. Thankfully, her friend didn't carry out Joni's request and the entire life altering event, changed her entire life, body, soul and spirit. Her life has

http://www.joniandfriends.org/television/id-rather-be-wheelchair-knowing-him/

been incredible. Click here to meet Joni and her husband Ken. It was her story that inspired me more than a few time through my own life. It was all she went through that caused her, to depend more and more on her Lord and Saviour Jesus Christ. Her life has been a testimony for millions of us. Yes, she is an exception to our everyday lives,  she is an artist, advocate, has an entire organization called JONI AND FRIENDS, sings, collects and manages sending refurbished mobility equipment to many in other countries (Wheels for The World), is married, travels the world, is a public figure, author of many many books, has a radio program....Click her to see JAF. But think about it, if we go through "bad" times, get through it with a whole new way of living, and it helps to encourage even one person, it is so worth that one life. In God's eyes, one person is worth everything. One person Matters.

http://www.joniandfriends.org/television/id-rather-be-wheelchair-knowing-him/

Meaningful Work...
And all these lives, Joni's included, like mine too, are able to be lived out fully, joyfully, even through pain, on this earth, made possible by God. Blessing us with not just friends and family, but trustworthy, compassionate, reliable individuals, PCAs, willing and able to give us a hand so we can live Independently.  What a meaningful way to be employed. Our friends and family do it out of love, for no remuneration. But there have been many who have chosen out of love for helping others, to become PCAs, as a career. Doing what they love, and as a bonus getting paid to do it. These employees matter to me so much, I wish I could pay them even more. (I am restricted by provincial funds). Sure, I have encountered some over these last four decades or so who clearly do not "love" what they do, it's only a jobber a stepping stone to something they believe is "bigger," BUT, the majority I have been supported by, give others a hand because they want to. It matters to them, it matters myself and countless others like me, more than they will ever know. The fact that they happen to be paid for doing something that matters to them, is meaningful, what a great career. No, it will never yield the dollars of a lawyer, Registered Nurse, Doctor...Movie Star or Hockey Player...Thankfully, there are so many out there, who are humble, willing to be "behind the scenes" so to speak. To think when I get to hang out with a bunch of friends, say something like getting married, I was able to show up dressed beautifully (wearing the custom fitted dress made by my loving aunt), because one of my PCAs got me up that morning, helped me get all cleaned up, putting on my wedding dress, putting me in my wheelchair just the way I need to sit...meeting all of my physical needs so I could show up to the church on time. Sitting upright, comfortable and well cared for because someone who isn't into being in the spotlight - made that possible. And each day of my life, made possible by wonderful ladies, who chooses to work for me, knowing that without one of these girls, I would have to live in a hospital. Thank You God!

Just Wanted To Share This Video Link
I Just watched this great interview with Joni Eareckson Tada and Lucy Wedemeyer where they talk about caregiving, especially when the one being cared for is your spouse or family member. Click here to watch a meaningful video.

New Arms and Legs....

PCAs or PSWs? What's the Difference?
It's time again. Time to hire a new Personal Care Attendant/Assistant. Sadly, one of my regular girls are moving away.
Personal Care Attendants, or Personal Care Assistants and Personal Support Workers, essentially all carry out the same duties. Yes, duties may vary depending on the company one works for, or in my case, the individual you work for. Being hired by an individual, self manager or by family members to assist one individual, is far different than being hired by a company to provide care for many clients.
Over twenty years ago, I was involved with assisting in interviews to hire for the company I

originally used the services of. They used the job title Personal Care Attendant and later changed it to,  Personal Care Assistant. It worked for me, and either of those titles are what I choose to call my girls.
Personal Support Worker or Not?
When I first became a self manager about twenty years ago, one of my first employees signed up to take the very first Personal Support Worker program at our local college. She and I initially laughed, wondering why folks would have to pay to learn something that you could learn on the job. That is how she came to work for me and how I still hire, no special certificates required. She signed up for it because her school fees were being covered by her other employer, a large home care company. As she worked through the first PSW program, she did affirm that they didn't really learn anything worth paying hundreds of dollars for. She was an exceptional individual, only 19 when I hired her. She was one of the most responsible, level headed, caring individuals I ever was blessed with, to have as a PCA. She went on to use her natural skills to continue being a care giver and become a manager for a company that provides supportive housing.
When it comes to the validity of the PSW programs that are throughout North America these days, I must say, I have learned why it it was created. Well, no one told me, I base this on what I have learned since way back then. This program was created so care giving companies, such, as seniors care homes, could have a standard when hiring. It is much easier to state that applicants must have a specific diploma. It levels the playing field and they could have a foundation to start from, knowing that all applicants would know the basics. As well, the PSW program has definitely evolved into  much more, offering more healthcare skills and knowledge that was not in the original program. It makes sense to me now, even though it didn't in the beginning.
That being said,  I still choose to consider all applicants, those with or without any healthcare training. In fact, in over twenty years, I must say that the majority of my employees have not been PSWs. It hasn't been intentional. I have had a lot of wonderful ladies of all ages, who are just interested in helping me out. They are willing to learn, able to follow directions well and are just plain great employees. My employees have been college and university students, be it Out door Recreation, Nursing, Environmental Studies...the point being when you hire your own PCAs, you can set the terms you prefer. So for me, I have hire standards, in that I seek out not certain papers, but those who are trustworthy, dependable, willing to be trained, flexible, kind and compassionate. It is what works for me.

Why do I not require PSW certificates? 
Because I have found based on my eleven years with a company that did the hiring and managing, (more on that in part two to come.) that they didn't have any set standards. It was all about the interview, about the personality, their references, the ability to learn and the desire to lend a hand and listen to the tenant's directions or needs. Carrying out tasks as if it were the person, like me doing it, enabling people again, like me, to live independently. I did criticize that this company didn't have any foundational standards or requirements and that was the reason why there were often issues with employee behaviour. After all, to me, it made sense that when you hire for many tenants or clients, that you would want to have a base requirement, hoping to obtain the best quality care possible. But, since hiring my own PCAs, I choose to go by each individual, rather than seek paper work, just the way they do/did it.

Set In Stone
My experience has been that those who already work for care providing companies, instead of individual/private hire, or those who have PSW certificates, they often are set in a pattern. Some are set in stone and some not. It makes sense that when one pays and enrols in a program such as the Personal Support Worker one, you are seeking to learn and follow the directions they give you. The ultimate goal, to obtain a job in that field. No doubt, most of those who take a program like that have a specific target. Some just want to be in charge, carrying out tasks as they were taught, and even as they want to. Many of these positions, require the initiative of the employee and not the wishes or direction of the client. This is an entire different focus and when someone like me is interviewing someone with a back ground like that, I have learned to ask the right questions. I need to discover if they would be able to handle my direction, and let go of what they have been taught. It is important that I let them know that I will need them to be my arms and legs under my direction. It may sound rather odd to some, but trust me it has been an issue. Statistically, many who are trained to work in insttuions and such, get offended when you ask them to do things in a specific way. It isn't their fault, it is just how they are wired or how they were taught.

This doesn't mean PSW certificate people don't work out for a private hiring self manager like me. It means, I just need to let them know what my expectations are and to really be specific in the interview, it is usually pretty easy to know if someone needs to be the "boss" in a sense, and just wouldn't be a suitable fit for my needs.

I don't know what it is, but, nursing students and nurses are wonderful employees. Even though they too are trained to do things a certain way, they "get" that I need them to carry out tasks the way I like.  They aren't offended if I ask them to make the bed the way I like, doing it how I would if I could....

Experience Or Not?
The question then remains about hiring PCAs, should they have experience in health care or not? Well, based on what I have experienced, it sometimes helps make the initial training period more comfortable. Only because you are physically unclothed for some tasks and it is easy to feel uncomfortable at first. Knowing they have seen it all before, makes it easier. But then, not necessarily. Seriously, it seems to be all about the personality. If someone is kind, friendly and open to giving you a hand, understanding why you need them...then being naked and depending on their help, becomes more comfortable than you realized. So the answer is, yes and no. It depends on each person. Whatever works for you, works. I can only talk about and offer advice, with what I have experience with.
Thank You To All Who Have Graced My Life
I want to say that because of so many wonderful personalities, willing hearts to help and understanding of what it means to be my "arms and legs," the physical aspect of my life has been able to happen. I am blessed by God to be able to live independently because of great ladies who make it possible. Because of their smiling faces and helpful attitude, never offended by one particular request, my life is extra blessed. :o)