Why I’m here…

Since I’ve been asked, I should probably explain what this blog really is all about…  it’s about me!  no, kidding, it’s not.  I mean, let’s face it, I will be writing about myself and my experiences since it’s what I know but what I want to do is inform my readers about the life of a caregiver; unpaid, family caregivers.   I’m hoping that by doing this it will help make change; a change in the healthcare community.  I’ve realized over the past five years that there is a huge lack of information available to family caregivers, not just for those caring for someone with a spinal cord injury, but for all caregivers.  There is support, trust me, there is support, but there is an overall lack of information…  For example, how do you hire a good aide?  Where do you look?  How do you deal with insurance?  What is the best equipment to purchase?  How can you do funding?  Now, finding out this information is possible but it takes hours and hours of searching and my long term goal is to put this information together into one site.

Another long term goal is to bring awareness to the need for better care for SCI patients which, in turn, will help the family caregivers.  I think that by working on that piece, it will actually help other people who use home health care.  I think we can all be in agreement that help at home needs work…  big time. 

Without stepping too much onto my soap box, home health workers/personal care assistants/CNAs (for ease of us, PCAs), need help.  And I think that the people to push it, are the family caregivers.  We know what they need; more training, better pay, better hours, more regulatory oversight.  We are the ones who have to push for this change.  That’s what I’d like to see happen because of my blog. 

We are incredibly lucky in that we have a wonderful PCA right now.  Note that I say RIGHT NOW since in the past, we haven’t.  Because of our financial situation, which is much, MUCH better than most dealing with an injury and because we both work full time and have employer based insurance, the quad does not qualify for PCA coverage.  So, we pay out of pocket.  It thankfully doesn’t limit our options but instead puts a financial burden on us that we worry about daily especially since it’s a need we’ll have for years.  YEARS. 

When the quad was originally hurt, we found a PCA through a friend.  She was a CNA who was looking for extra work and could work the hours we needed.  FYI, finding a PCA that can come into your house at 5 or 6 am so you can get ready for work is damn near impossible.  Our first one was wonderful but after 2 years, burnt out so we started to work through an agency.

And that’s when we started to realize how hard this was going to be….  Caring for someone with a disability is hard work.  Caring for a quadriplegic requires extra training that NONE of the PCAs had available to them unless they had worked with a quad in the past.  This means that I do the training…  and it’s not just a ‘here is where this is located or this is where his clothes are’ but ‘this is how you roll him, this is how you bathe him, this is how you dress him, this is how you put him in his wheelchair properly.’  It’s ridiculous and unnecessary.  I’ve even had to show PCAs where HIS BICEP WAS LOCATED.

It has been frustrating.  Extremely frustrating.  BUT right now, we are extremely lucky to have a wonderful PCA who is sweet and caring and respectful (HUGE) and listens to the quad and does what he wants when he wants it.  One of the hardest things is to find someone who will listen.  We understand that everyone has a certain way of doing things BUT in the end, we have hired this person to come into our home to help the quad.  It gives him the privacy he needs and deserves and allows me to focus on me and the kid in the mornings.  And in the end, the quad is the one who gets the final say in how things are done.  Especially since they are being done for him and to him…

Our PCA didn’t show up today…  I know why but we didn’t find out until it was too late to get someone else.  It’s tough for us since we’re not the norm.  We both work.  This is NOT the norm for people with a disability.  Because of our work schedules, we require a PCA to come in at 6 am.  This means that when our PCA cancels, I get the quad ready.  He hates it.  I hate it.  We have to rush since neither one of us can be late for work.  Something gets missed and we’re both in bad moods.  It’s hard.  It’s tough.  But it’s something we deal with all the time.  Unfortunately, it was because our PCA was sick today and since she had been sick Saturday, I got up early, just in case.   The quad requires minimal care in the mornings and because of it, we were out the door on time, all dressed, looking good, fed and even filled with plenty of coffee (kid in tow!).  Nothing was forgotten.

But again, we are not the norm.  So many struggle with this every single day.  So many lack the care that their loved ones need.  So many have PCAs that they cannot count on and therefore, must take care of their loved ones.  And because of all of this, deal with unnecessary emotional, mental and physical stress.  It breaks my heart…  The quad is ‘easy going’ when it comes to the care he needs since we’ve figured out that it’s minimal.  He’s healthy and I’m healthy and strong and we work so well together and are able to get him dressed and into his chair in 20 minutes FLAT.  Others take much, much, much longer…  hours longer…   Work that is taken on by the family caregiver.  Work that goes unnoticed by all (but those who are being taken care of…).  Work that people assume family caregivers should do in addition to working full time and well, doing EVERYTHING ELSE.

This needs to stop.  Things need to change.  SPEAK UP.  Tell your agency that your PCAs need more training.  Tell your agency that they need more money, more support.  Tell them that you need it.  That you REQUIRE it.  Think of it as a business.  YOU are the reason they are in business.  YOU are the reason they get paid.  YOU are the customer.  YOU know best.  take control.  Speak up.  I will help. 

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