SEE ME..I am not a Friday afternoon problem... This Is “OUR LIFE”
Imagine you are the professional caregiver at the other end of my phone call today.
What is the story you are telling yourself about me and my husband? What do we look like to you? Hysterical crazy woman? Drug seekers? Brooding couple? What emotions do we spark in you? Frustration, and maybe a sense of being overwhelmed by more work? Am I making you feel uncomfortable, perhaps a little vulnerable to my humanness? Or do you just feel like my husband and I are one more obstacle on your way to the Friday finish line...the thing you need to stop so you can go on and have a lovely weekend with your family and friends?
The story I need you to hear is, it sounds like Jeff’s wife is at the end of her rope and so is Jeff. It sounds like the thought of suffering one more minute is more than either one of you can bare. Jeff’s wife and caregiver is asking for what she knows, not what is possible or even reasonable to help her and her suffering husband– she has gotten to a directive place in her request because she is scared and exhausted and not acting with a lot of skill right now. Why? Because she and Jeff have been up all night in a life and death struggle with the pain that has them in its grip. I need you to ask yourself, how can I help get them some relief because that is ultimately what they are looking for!!
How might you approach this conversation like it is YOUR family member at the other end of the line and she is at her wits end? Jeff’s wife is up against the Friday afternoon frenzy. However, in a much different way. If she is not able to get help today, there are 72 hours that she will need to navigate with her husband without help or relief. 72 hours of grappling with losing him to the pain in one way or another. His cries, and hers will be the soundtrack of the weekend for them.
Turning the Tables – Pause Here If it were you - who would you call? What entity supports you through this part of your life when your husband, a veteran of our country, is suffering day in and day out in unimaginable ways? Who is supposed to help you in your most desperate times? Do they see you? Do they take the time needed to hear what you are asking for – the question behind the question? The request inside of the request? Do they listen without judgement? As the professional caregiver on the other end of this Friday afternoon call, do you?
Our Story When it comes to your healthcare team, trust is important. Up until we met Chris, we had never run into anyone or felt any situation was worthy of trust. Our journey through the VA Healthcare System was anything but trustworthy. Jeff and I both have PTSD from people who put us both through hell for 8 years as we were seeking to understand his condition and what could be done to help him and our family.
No one EVER saw us, was there for us, nor would anyone listen to us. When you don’t see people and listen to hear the raw pain, all you can see and hear is a person with mental health issues trying to drug seek. When you are supported from this perspective you are tre
ated accordingly. When you're not seen or heard, you are in a perpetual state of constantly fighting for your life, which feels like a constant war against the people who are supposed to be there to help. And this after all your husband did to fight for his country – for his freedom and yours. They broke your husband in combat, so they should be the first ones who understand and come to help right? No.
It took us about 8 years to find Chris. Chris knew how to talk to Jeff and he knew how to support me, Jeff’s wife and caregiver, by answering sometimes endless questions in my quest to understand why. Somehow, he knew what I needed to be able to settle in, adjust and move on. This came as I understood more. Chris never saw me as pushing back. He was a straight shooter and listened. I will always be eternally grateful for him for being human. Chris was also the first doctor to identify the neck impingements and was able to fin
d and identify the cause of the extreme pain Jeff was in. 3 radiologist and 2 pain management physicians had not been able to do this.
For the first time in a long time we were heard, justified in the suffering and set on a course of managing the pain that has been in control of our lives for the last 8 years. He helped us through hard things and I always felt confident in knowing that he and his nurses would be there if we needed them. It took a LONG time to find him and his team, they brought peace of mind, pain management and brought back our ability to live our lives more than we had since we got married. Our harsh reality now is that Chris is out on medical leave for several months, I pray every day for him, his family, us and others like us that need someone to listen and help like Chris did.
Since his leave, we have been seeing a new physician every month. No one really knows us. Things have been on an even keel so not much thought has been put into the connection or lack thereof in this regard since Chris has been gone.
Last week so many things came to a head. The pain exponentially increased, vomiting and nausea increased, and this is on top of 6 months of significant weight loss (70 pounds since the beginning of the year). However, these folks are our team, they are the ones we call when things have changed and become unmanageable. Right?
Last week, I called for Ativan, because in the last 8 years that has been the one thing that has taken Jeff’s pain down to a manageable place so he can sleep and function on some level. When they finally returned my call Friday, I was on the verge of hysteria because he was suffering, and they had not called me back for a whole day. FYI, this is an ETERNITY when you are watching and supporting someone who is suffering.
After I told the nurse on the other end of the line the story of where we had been, what was currently happening and the current state of pain and anguish in our household - she shot down every idea I had, in every direction on what I was asking for and why. She kept saying "no" the doctor won’t do that. I said can you please just ask! By shooting down my ideas on what may help and while not offering any of her own she had effectively stripped me of any sliver of hope that I had. I finally exploded! I screamed "All I have is hope right now and you're taking it away at every turn. I need support and I need you to HELP ME!
rned into the crazy wife, hysterical bitchy pushy caregiver momma bear ready for a fight... The exact people I train professionals every day on how to support. You see, I am a social worker and a professional caregiver coach. I help family and professional caregivers each and every day learn how to best support each other through hard things because how we show up for each other matters, there is not process for this, it’s called being HUMAN. The big question is why do we have to teach people that the most healing aspect of medicine is listening and being human.
Today, let my life be your learning...PLEASE SEE ME!
If I can let you into my stream of consciousness, this is what you may hear…
I am desperate and pain has my husband in a choke hold and no matter what I take out of my pain toolbox, I can't get it to stop choking the life and will out of him... I feel helpless, powerless and desperate... I am not a frequent caller, nor have I been demanding or pushy before today. I didn’t get here without events happening in my reality each day that have left me feeling helpless, powerless and desperate. SEE ME. This should be your first sign that so
mething is not right. It should make you curious, not turn you into my sparring partner in opposition to my suffering and push back and tell me “no” at every turn. You are taking away my hope, increasing my fear and seriously pissing me off because you are not taking time to hear my humanity, nor that of my husband. THIS IS OUR LIFE!!! It is not up for debate, just because you can't imagine pain like this - it doesn't mean it isn't happening. What reaction do you expect of me? I am a wife who is watching someone I love and adore bare insufferable pain one more minute. I need you to be the one who sees through all that stuff and helps find a solution to the suffering. It is true, I am emotionally highjacked. You need to be the bigger person in the situation and provide understanding and comfort with solutions... or at the very least possibilities. I need you to be my HERO today, because I don’t know how to be his.
When they called back to tell me the doctor said no to the Ativan request, the nurse went on to further explain that the doctor said he didn’t know us, could not prescribe that medication and we would have to wait to see him at our appointment in 2 weeks... 2 weeks?
I felt like a Friday afternoon problem that was not only dismissed, but left to face the firing squad of pain, with no shields, and no ammunition. Not only would the next 72 hours be unbearable, the next 2 weeks were something we may not even survive.
Let me help you understand what it looks like when you, the professional caregiver at the other end of the phone, hang up with your “Friday afternoon problem”
I start to shake and cry, the story I tell myself is…
The nurse didn’t care enough to “See us” and advocate for us to find some kind of solution even if it wasn’t the Ativan. This is evident by the fact she was not the one to call us back and deliver the news herself. I then get ugly, spiteful and mean and think to myself, was stealing my hope at the beginning of the conversation and watching my humanity react to you a little too much for you and your integrity to face?
I cry because I have now inadvertently tagged my husband’s chart with a flag for potential drug seeking... What did I do...?? I am so mad at myself for potentially making our lives even harder in the end.
I am angry. Why can’t you just help, is that so much to ask for? How will this change your weekend? For us, it feels like life or death. Why wouldn’t you just do the right thing...and SEE
US as human beings that are at the end of the line.
I feel despair. My once support system has dissolved. I have no hope for help. This is a whole different kind of meltdown...like your heart is ripping out of your chest. I am supposed to be the one that cares for my husband. The one that helps him through better or worse, for richer or poorer – in SICKNESS and in health. I am failing.
I feel protective. I need to dry my tears, put away my disappointment and cannot tell Jeff that I even called, there is no sense in both of us feeling this way.
I feel rage. Thank you lady, at the other end of my phone call, for your lack of willingness to help and thanks for not seeing us. Thank you for judging us without knowing us. Thanks for your non-advocacy and your lack of accountability in finding some relief for us. Thank you for
SEEING ME and US as your Friday afternoon problem. I hope you are having an amazing weekend with the people you love. I hope you feel the sunshine on your face and emerge feeling refreshed for the week ahead.
So, onto the standard steps of my caregiver journey.
1. Gather myself and put on a “we can do this face” and aid Jeff in throwing up for the third time today.
2. Hold him as he cries and talks about how he may have to leave me/leave this earth because his ability to endure the constant pain is more than he can mentally or physically endure anymore. It has been 10 years.
3. Swallow every feeling I have and tell him he is the strongest man I know and that I don’t know how he has made it this far...
4. Have the conversation for the umpteenth time about how I respect his right to choose what he is willing to put himself through and what he is not, and it will never be a cowardly act, nor suicide. It will be about his choice and peace...
5. Help him find a comfortable place with all the tools you have in your box and pray he can sleep for a couple of hours.
6. Sit in sun porch and melt into an emotional and physical puddle and weep...as he sleeps for a few minutes.
7. Get up next day and repeat steps 1-6.
Why am I sharing my story, my soundtrack and my life?
I am sharing this because I pray you reflect on my story, my experience and if you are the person at the other end of the call one day – that it helps you to make adjustments which come from a different perspective. Someone will need help. They deserve a better story, a better experience. They deserve for you to SEE THEM. Without judgement. As human beings. And NOT as a Friday afternoon problem.