Tag-Archive for » Caregiver «

You asked for photos… so here they are! ;)

 

Morning. 🙂

Well yesterday was for sure a busy day, lol. The teens had fun, I got to see my side of the family for my dad’s birthday for a few hours, and I did manage to get my hair colored before the busy day started. And… for those of you that wanted to see my hair (no, I have not had it cut yet) and those that mentioned that you would like to see or I needed to post an updated photo of me lol, since I’m always the one taking photos around here and avoid the camera haha 😉 these are for you… the face behind the keyboard and writing. 😉 Photos taken yesterday.

Now, let’s get this new day going… with coffee in hand of course. 😉

~Bec

A Spouse’s Story PTSD : Facebook page

Category: Caregiver/Spouse/Partner, Uncategorized  Tags: , ,  Comments off

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

The short story behind the “I thought you were single” comment

The short story behind the “I thought you were single” comment that I mentioned in yesterday’s posting, and was asked to write about.

You know, when life contains PTSD and Depression, one just does not get out of the house as much, at least it’s that way for many, and for Craig.

I was taking Alex out and one of the neighbors was outside at the same time. So we started talking. In the conversation I was asked, “How do you manage to do everything by yourself?” It seemed like a harmless question to me. I responded with, “Well, I just do what I have to do, to the best ability I can.” Then I was told, “You have that property, your house is not the smallest by any means, you have the dogs, and a mom on top of it. I don’t know how you manage everything with your husband no longer around.”

Yes, the woman who is rarely speechless was at a loss for words.

I stood there for a moment to digest what was just said. Then I asked, “What do you mean?” I was curious at this point to hear a response, lol.

Then the neighbor was non-stop, “Well, I’m not sure the situation and did not want to bring it up, or did not know how to ask you. But did you two divorce, I never thought that was it honestly, did your husband pass away? I used to see him outside from time to time and have not seen him in, well, almost a year I guess. Has it been a year? Maybe longer than that? I felt like I needed to come talk to you, but was not sure how to bring it up without making you feel bad or maybe stirring up bad or sad feelings. But you are a great neighbor and you are so alone over here trying to do everything by yourself. I know your son is around, but he works a lot. You are raising that beautiful daughter of your’s all by yourself now. That’s got to be hard. Oh, and she’s just an absolute sweetheart of a child, very polite and well mannered, I see her outside with the dogs quite often. How are your kids taking this? How are you doing? Are you okay? When you all moved in, what 4 or so years ago, your husband was outside more, you two seemed so happy together, then over time I saw less and less of him. He must have been away a lot. This has got to be so hard on you, I figured he passed away, I was told he had some type of health issues. You must really miss him, it’s sad, heartbreaking, but you do a good job keeping everything up and your kids are just great kids. I want you to know that I notice, and you are doing a great job. I could not imagine being your young age and having to handle everything on my own. You are a very strong person, but you must miss him greatly. You are always smiling, how do you do it? I would be a wreck…”

I just let the neighbor talk lol, without interrupting. To say the least it went on for awhile, I just stood there smiling and listening… and I had plenty of time while the neighbor was talking to think about how to answer all of the questions and comments made. 😉

Then finally a break in the one sided conversation. The neighbor said, “Are you doing okay with being alone?”, and waited for an answer.

I then replied, “It is tough at times feeling alone, but I cope very well. I take time to myself, take good care of myself, have my hobbies and dogs, the kids do keep me busy and are doing great. Of course I love doing yard work, so that’s no issue, it gets me outside. And other than that, I’m inside taking care of the house… and my husband.”

You could have heard a pin drop! Silence.

Then finally the silence broke and I heard an “OH! I thought you were single now!” I smiled a little bigger and simple said that my husband does have disabilities and no he does not get out of the house much at all, that I do take care of him full time. But no, he did not die.

The neighbor went right into apologizing. “I am so sorry! I had no clue. Other neighbors thought he had passed away because no one sees him outside anymore, we only see you and the kids from time to time out. Oh that must be hard, you two are so young! Too young to be going through this.”

I simply replied with, “It’s just life, and we live it the best possible. But thank you for your concern, I appreciate it, and all of the compliments.”

So… that was pretty much it, lol. You have to just chuckle at what people think and start saying when they just assume things. So when Craig made his appearance outside when another neighbor got their vehicle stuck, it really meant a lot in many ways other than the obvious of Craig making it outside. And the new neighbors were happy to meet him for the first time. I joked with the neighbor lady (not the neighbor that had that conversation with me) her and I had talked about other neighbors thinking I was single, and I said “See, I do actually have a husband, lol”. We had a good chuckle over it.

I joked with Craig and said maybe the neighbors that don’t know us well will stop thinking you are dead and I am single now! 😉 He just smiled a half grin with a chuckle. Then I said, “See, you need to get outside more before the men start asking me questions!” LOL, he laughed at that.

Oh the things that come about when life contains PTSD and Depression. 😉 You have to just laugh some things off at times.

The moral to this: Before you assume what someone’s life is like, or start telling others what it is like… Just ask! People are more than happy to help educate others about PTSD and what life is REALLY like. 😉

~Bec
A Spouse’s Story PTSD : Facebook page

“I’m off to OZ”… Me time

Morning. Coffee in hand and getting this new day going.
Would you believe it was almost 90 degrees here yesterday? My son was here most of the day so I took a trip to OZ! 😉

Okay, for those of you that have never heard me say that, it’s been my saying for years. I used to mainly use it during times that I knew I had to step away, take a deep breath, and think about things, decompress, before addressing them. Everyone used to tease me when I would say it and say “Clear a path mom is off to OZ” and everyone knew to just let me be while I was outside. It became very well known around here through the really rough days. These days, it’s more like my summertime saying for me time or when I realize I just need that time to cope…

Only Me + Sunshine + Bathing suit + Music through earbuds= “I’m off to OZ”… trust me 😉 it works great!

For this Spring/Summer I have set a goal for myself. Since my knee injury (no it’s not better yet and still in a brace) I have to do strengthening exercises from here on out, the rest of my life. So, with that I decided it was time to just get the whole body back in shape at the same time. With all this working out I am required to do now I started missing the sunshine and my tan, I have set a goal to TRY to get outside one hour per day (weather permitting) when my adult son is home so someone is inside with Craig. Whether it’s playing with the dogs, working in the yard, tinkering with my pond, or visiting OZ for some sunshine. 😉

When I first started taking me time and learning how to properly take care of myself as a caregiver while taking care of someone else, it was hard to find that time. I had to make it and take it. Back then it was 10 minutes per day to myself. That’s a huge improvement to be up to an hour per day now, and of course I take one respite day per week or every other week. But what a change taking just a little time for myself makes, huge positive differences in myself which in return helps Craig. 🙂

~Bec

A Spouse’s Story PTSD : Facebook page

Category: Caregiver/Spouse/Partner, Uncategorized  Tags: , ,  Comments off

Just because you see a smile…

Just because you see a smile…
It does not always mean what you may be thinking…

A smile can be a gift, that others quickly respond to and follow. People like the positive things in life.

A smile can be a message, so others think and feel that no matter what everything will be okay.

A smile can be a shelter, that shows a form of strength and comfort.

A smile can be a safety net, to remind me that I can make it through things.

A smile can be a mask, that hides the pains and anxiety that I don’t want to reveal.

A smile can be a defense mechanism, to keep the hidden tears from becoming waterfalls.

A smile can be a powerful representation of something good, joy in life, and what others want to see…

But what the smile hides is what life is really like, when life includes PTSD‬ and/or other mental health conditions. Those with them as well as those standing beside them.

A person can only carry that smile for so long, through so much, before that smile fades away and the reality of life, or that tough moment in time, appears upon their face. When there is no masking, and the true pain reveals itself. No human being can carry a smile every second of every day. No person can hold onto the positive one hundred percent of their lifetime.

It’s okay to release that smile at times. It’s okay to let others see the true feelings you are experiencing. And it’s okay to allow those tears to fall. We are only human.

That smile is not what makes you stronger, that release is. Talking to someone, being able to truly experience what you feel inside, that is what brings you strength. Then maybe tomorrow, or the next day, a true smile may just appear.

Yesterday I cried, I bawled my eyes out. There was no masking things with a smile any longer. I felt the pain deep inside, I felt the loss of what once was, I felt the disappointment towards others that are suppose to be of help to us, I felt like all of my strength just left me, I felt helpless and hopeless… and that’s okay, I am only human. Today, I take another step forward, with strength.

~Bec
A Spouse’s Story PTSD : Facebook page

Category: Caregiver/Spouse/Partner, Uncategorized  Tags: , , ,  Comments off