Caregivers and the long term

Being a caregiver has made me realize that there are a lot of things in life that you have to do yourself.  AND that you can get things done yourself, as a party of one.  As one person you can make a huge impact.  Because of that, I’ve decided to take more to the airwaves with this blog since it’s a way to get the message out there.  And speaking up is okay.  For so long, I was afraid to speak up for fear of being wrong.  I realized it was just my lack of confidence since really, why would anyone think I was wrong for my opinions?  And if they did, why should I care since they most likely have never walked a day in my shoes. 

Caregivers need help.  Now, note that when I talk about caregivers, I’m speaking about the unpaid group of family and friends who help those with any type of medical condition.  They are the unsung heroes of the medical community who do so much for patients and yet are completely overlooked.  Almost completely.  Yes, there are many groups out there even advocacy groups (one of which I’m a Board of Directors member…).  However, I’m not the usual caregiver.  Unfortunately, when people put these groups together, they are geared towards the elderly.  And rightly so since it is such a huge and underserved population and those caring for them, mainly their children, need all the help they can get.

But I’m not caring for someone who is elderly.  Nor am I his daughter.  I’m 34 years old and married to a quadriplegic.  I was 28 when he was injured.  There is NOTHING out there in terms of help/advocacy/support for a young mother/wife of a quadriplegic which is one of the reasons why I’m here and one of the reasons why I’m desperately trying to start a website.  I have the bones and the name but alas, do not have the time or the energy most days.  One day though!  so instead, I just write and post and reach out to as many as possible for now which is more than I was doing months ago. 

Navigating this life is hard.  It is.  And knowing that I will be navigating it for years and years and years is even harder.  I am 34 years old and some days I feel 90.  I have arthritis in my lower back already!  I am stressed.  Have been depressed.  Have had medical issues and even had an anxiety attack that mimicked a heart attack…  I have done my best to combat the stress but after five and a half years of daily stress, I’m worried that what I’m doing now isn’t enough to reverse the damage already done.  I do yoga.  It is my saving grace.  I run.  I hate it…  but it allows me to eat donuts…  I even took up kickboxing and let me tell you, punching and kicking that bag is GREAT stress relief!

I’ve done all of this myself.  Let’s face it, I have no one in my medical community to lean on for these things.  Yes, I saw a lovely woman for a while and we talked about my life.  She suggested lots of things but having the time, energy and money is hard.  Even having the time to talk to her was hard…  and then insurance stopped covering her so I stopped going. 

What most people don’t realize is that I’m one of the lucky few that has these luxuries…  I work full time, as does my husband, and our salaries allow me the ability to do yoga, run, kick box and take breaks when I need them (although they are rare since I tend to make excuses).   So many that I have talked to do not have this luxury and they must put up with the constant emotional, mental and physical stress without any type of relief.  Instead, they will have to deal with the consequences which will impact their health.  There are hundreds of articles out now about how long-term stress can affect your health and I know that I’ll be dealing with this stress for YEARS.  Just think about how this will affect the health care system?  Not only will those who are injured put a strain but their caregivers will as well…  Even just small things can make a difference.  Access to home health care for their loved ones!  Access to therapy/therapists for years, not months.  Coverage of stress relieving activities…  or even places that could offer these for free…  I know that there is very little money for this group (ok, none) but caregivers need help too or else they will not be able to care for their loved ones.  and their loved ones will put even more of a financial strain on the system along with the caregiver. 

For me, I focus on the home health aspect of it which is why I’m with the advocacy group.  Home health care workers need better training, better pay, expanded hours, better insurance, better lots of things!  They are my other saving grace…  My husband only requires 7 hours of care a week from our agency.  SEVEN HOURS.  One hour a day…  THAT’S IT!  And because of it, I have time to get ready…  my back is saved…  my energy is saved and I can focus on myself and our child.

We need to push for better home health care.  Please help me!

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