That dreaded comment that cuts the deepest for me… As a Caregiver.

That dreaded comment that cuts the deepest for me… 
As a Caregiver.

So… I’ve been up for awhile now, hours throughout the night actually, coffee already done for the day. I’ve been sitting here just thinking this morning. You know, even after so many years of needing to be a caregiver, the awareness that I provide to others, the personal things regarding our lives that Craig and I share in hopes of helping others, there are still those that I can do nothing but shake my head at. I won’t judge them, but I do hope to educate them.

As much as I would not wish this life on anyone… ever, at times the thought does cross my mind “If only you could spend a few days in either of our shoes.” (NO disrespect towards Craig or anyone else with disabilities intended by any means, with any of the following. I am writing this in hopes of giving others a little insight.) Sometimes I think that would be the only way for some people to understand what life is really like for us. Just come spend some time here and see for yourself, firsthand what our days and lives consist of. Sure the first few days one with PTSD and/or other disabilities may be able to wear a mask, put on a good front, but that mask does come off eventually and real life can be seen.

You know, my husband did not ask for his disabilities and sure not the combination of disabilities he has. I never dreamed that I would ever be in a caregiver role taking care of him, especially not at our ages. We were both working professionals. But it’s the hand in life we were dealt and we do the best we both, and each of us can to make it through each day. Craig will tell you in a heartbeat that I am the only reason he is still alive, and that’s by no means a pat on the back, no one should ever have to say that, but it is what this life brings.

It never fails, every year when the weather starts warming up and I mention I got outside (which I won’t stop mentioning), someone mentions that heart gouging comment “It must be nice to be able to do whatever you want to, whenever you want to, while the rest of us are working”.

I don’t get mad at that comment anymore, it’s simply just a person who does not understand our lives. But, that does not prevent it from cutting deep when it’s said.

The old saying “the grass is always greener on the other side”, well there you have it, we would love to be the ones ABLE to go to work every day. We would love to be the ones able to take a date night without PTSD‬ and all of the symptoms on constant alert or not making it even possible. We would love to be the ones able to have family gatherings and be able to remain at them the entire time, or throw parties, gatherings of friends, attend events or school functions anytime we wanted to, etc etc etc.

We try hard every single day, just to be able to make it to the next does take a lot, but those things other people in reality take for granted, have not been a part of our lives for a very, very long time… years. It it’s not because we have not tried, and we do continue to work towards those things being a part of life again.

The comment made directly at me really shows a lack of understanding. I am a full time caregiver. That is a 24/7 “job”, without the title to call it “employment”. It does not come with retirement benefits, it does not come with being able to set my own schedule or do my own thing whenever I want to. It does not even come with a regular time to sleep. But it does come with a demanding and rigorous routine of taking care of someone else so they can still exist and function in this world, to try to live at whatever level is possible.

Those that can work, your job relies on you to show up and do your job when you are scheduled to. When your work schedule for the day is done, you are free to do whatever you want to or what you as a family or friends do together, you can go where you want when you want to once your work day is done. As a caregiver, my “job” is another human being relying on me 24/7, and there is not a time clock to punch out on. My “job” does not stop just because the clock hits a certain hour or reached a 40 hour work week. My “job” as a caregiver is here, at home, around the clock. Another person’s life depends on it, on me.

Sure, I could continue working and not be the one taking care of my husband, it is a choice a family has to make per family based on what will be best, and there is a lot involved with making a decision of what is best. But when you weigh the pro’s and con’s what do you come up with? For me, to work away from home I would have to hire someone to come in and take care of him then when I got off work I would still be taking care of him until a hired caregiver came back for me to leave for work again. That would still leave me working around the clock, as well as additional expenses which cannot go dismissed. Or, my husband would have to be placed into a full time assisted living facility, what do you think that would cause him on top of what he already goes through with his disabilities?… He’s only 44 years old now and has a combination of disabilities. I have been taking care of him for 10 years, officially through a newer caregiver program for just over 3 years. At this point in time, a facility is not an option that would be in his best interest, and his doctors back that decision. He is best here at home in a familiar environment, and with his family taking care of him. And I have no issues with that, and am thankful I can be here for him.

But there’s another part to being a caregiver. In order to maintain that “job” of taking care of another person, you HAVE to take care of yourself also. If you don’t, you will become worn out, overwhelmed, start having health issues of your own, and you will eventually fail at being able to help that person who needs you and relies on you.

When I state “I got to soak up some sunshine today”, it is really heartbreaking at the number of people who view that in a negative way. That is approximately one hour, one hour, of my day that I get to myself in order to take care of myself in a way that is good for me, which in return is good for my husband because it helps me maintain my personal balance and health. It’s also an hour that I have to make sure that someone else is here for my husband, that knows how to take care of him while I’m outside for that one hour. That one simple hour comes with a lot more to get it than just walking out my back door and opening my lounge chair to enjoy the sunshine.

Several years back now, that hour was only 10 minutes per day, if I was lucky. I now get one hour per day, most days but not all, and one day per week or every other week “off” when someone else is here. (As a caregiver I am REQUIRED to take a minimum of 30 days per year of respite care/time, which I do.) That is a huge accomplishment to build up to when being a caregiver. And not all caregivers are at that level of “me time”, self-care time yet.

Now, imagine working a job that was 24/7, and the only break you got was 10 minutes per day. I guarantee you, you would not survive for very long, at least not without consequences. I can make that guarantee because I myself was there once and know exactly what it causes, even with my strong will, determined, hardheaded self I am lol, 10 minutes per day is not enough break time for anyone to survive a 24/7 “job”, and remain healthy.

I will take that a little further, why do you think many of these unseen disabilities are even so? I can tell you, because one pushed themselves so hard for so long through whatever they were faced with (including traumas for many), and kept on going, many were in positions where there was not a choice, they did what they had to do, and now many of them have unseen disabilities due to it all.

Those people making the “it must be nice” comments, should be happy for me when I take time to take care of myself, or for any other caregiver or person with disabilities that succeeds in doing things that many take for granted in everyday life. Those what seem to be simple things, are in reality large accomplishments, and also ways and things to take care of themselves.

I do not understand anyone, to be blunt about it, who is jealous of a person who is a caregiver and the life they live, or jealous of one who suffers with disabilities, all because one can’t work. Those who are jealous are simply uneducated to what this life really contains for caregivers, as well as those with disabilities.

Before making comments such as “It must be nice to… while the rest of us have to work”, consideration of what that person’s life actually consists of with or beside one with disabilities really needs to take place. I guarantee you they would rather be in your shoes but are making the best of this life they know how to.

Judging another person’s life, when you in reality don’t know what their life is like unless you are seeing it firsthand beside them 24/7, is just uncalled for, and can be damaging. Don’t do it, have a heart… you would want them to if it were you in their shoes.

I am proud and honored to have the ability to be my husband’s caregiver, to be able to provide him with the care he needs, and to live this life beside him. I do miss working, so does he, but I have NO regrets of the “job” I do now. Life just changed, for both of us.

~Bec
A Spouse’s Story PTSD : Facebook page

You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

Comments are closed.