What does love look like? It has the hands to help others. It has the feet to hasten to the poor and needy. It has eyes to see misery and want. It has the ears to hear the sighs and sorrows of men. That is what love looks like. - Saint Augustine
I am a wife, mother, daughter, mental health family caregiver and friend. Up until the summer of 2015 I was full time employed and a contributing tax payer. Currently my husband is the bread winner in our home. Thanks to my darling husband our family, being the hubby, myself and our two daughters who are still under the age of 25 have a PPO. Unfortunately I support my son who was diagnosed with a mental health condition four years ago, and who at the time was eligible to remain on our health insurance but aged out and who now must receive government insurance because he cannot, on his income, afford health insurance and the company he works for doesn’t offer it. We live in the state of Texas who opted out of the new health care implementation what a joy that is!
I am also the founder of a non profit for mental health family caregivers in Houston, Texas.
We love our son and are grateful that God has provided my husband and I with the ability to be a source of support for him during what has been one of the most difficult times in his life. On top of motivating my son and helping him to stay focused on his recovery and maintain as much structure as he possibly can in his own life, I manage my own mental health as a survivor of depression and anxiety. I’m un-medicated by choice(supplements instead of pharmaceuticals) which means my care and management of my mental health is and must be deliberate every waking moment of every day. I must be aware of exhaustion, diet, and exercise on top of staying present. In addition to caring for myself and my son I support 7 other family caregivers and their families through my non profit.
I provide emotional support and care demand structure to other mental health family caregivers who are supporting children, spouses and parents through the sometimes tangled roads of mental health recovery. I listen to them and give feedback when necessary, I research resources for them, accompany them on appointments, and I talk them through what can be very emotionally charged crisis all without funding and no charge to the families. I try to keep at the front of their minds how important they are to their loved ones and how their health is of the upmost importance as they care for and juggle the responsibility of supporting their loved ones and maintaining their own sanity.
Why am I writing? Could I just get to the point you say? Well I had to lay some history so that you understand I am not just belly aching about experiences I know nothing about, and since I’m shut down at the window with your scripted jargon about policies, I am presenting to you an opinion from someone who knows both sides of the coin from the standpoint of both a survivor and a caregiver. I have a few things I hoped you wouldn’t mind considering as the result of an encounter this week at a public mental health facility. You see I understand policy and procedures as I have been held to them many times myself when I was employed. I understand they are meant to keep structure and to serve as guidance to the employees all while ensuring the integrity of the mission statement stays true and also to avoid any legal issues. Cool beans, however when I show up at your window I don’t think you consider all it took to get there.
I want air my concerns without sounding whiny or as if I’m pointing the finger. I understand you are most times understaffed and over worked and how many different personalities you encounter on a daily basis, some within one individual. As a caregiver I can honestly say I totally understand how taxing that can be. However you are clocking out at the end of the day and this is our life, we don’t get to clock out. By the time we have reached your office we have had quite the adventure to get there. You may not consider this but I thought you should know the person standing before you asking for assistance has spent days, sometimes weeks preparing for this very moment with a loved one who may not have been in agreement initially to come to your office. We have gone over and over with our loved one the benefits of arriving at your office today, and although you are looking at us as just another patient and caregiver I had to do a lot of creative thinking and management of my emotions to stay calm enough to not set off my loved one when you just shooed me away after telling me you cannot see us today.
Now for you this is just policy and you are unable to accommodate us and the rational side of me understands that, however the caregiver in me who has managed to get my loved one in front of you is pissed because I don’t know when the next opportunity will come that my loved one will agree to coming to your office again. When I asked you a moment ago “…is there any way you can see us today we are willing to wait…”, I’m not sure if you thought I asked for a personal loan but your reaction says you didn’t understand this was not without consideration for you having to do your job…it was purely out of the fact that I haven’t slept in the last few days more than a few hours. Coming here filled me with hope that you would be able to help my loved one to get stabilized and I could for a moment get some rest.
The only reason I haven’t had a total melt down and started begging you, or choking you for that matter, to please let us in is because I am the only sense of stability my loved one has right now and if I lose it they will too and I can’t afford that right now. You see when you are high on your ego and needing us “unstable” individuals who are in your office to inconvenience you to remember how powerful you are and that you hold the key to what we most need, I am just trying to get help for someone suffering. I understand you see this kinda thing everyday and that for you it’s just another patient but for me this is my loved one and they are suffering and you are our only hope right now. So Mr.,Ms., Mrs. Gatekeeper if you would let me have one word edgewise you would understand why I’m trying to speak in code to you when I give you the glare like, “are you kidding me?” mixed with “please don’t do this” I’m not off my rocker but I’m close if you don’t stop pointing at that poster on the wall. I’ve read it hundreds of times as I have sat waiting hours for service the last time we were here. That appointment took 2 months to get and we were only given an appointment to come back to see a therapist who is only there once a week.
The blank stare you mistook for a challenge was me cuing into to the deep breath my loved one just took behind me and although what they are saying to me you hear as incoherence, I fully understood them when they said, “this is why I didn’t want to come…” which when translated means the next time I get them here will be a true act of God himself.
Now by now you should be tired of listening and ready to close the window but this is an open letter and I know you don’t have to finish it but I hope you will. You see if I could afford to pay my loved ones insurance on top of the insurance we already pay for ourselves I would so that I didn’t have to wait patiently yet attentively as you run down the lists of reasons why you can’t help us today. The amount of time you just took explaining that ridiculous policy to us you could have entered their information into the system and we could be waiting to see someone right now.
Over the years I have come to understand you don’t want to treat my loved one as much as you want to remind those who you meet at this very window how powerful you are and how much you are needed, the shortage of your skillset…and by the way we are fully aware of the shortage as are all 50 or so people waiting behind us to be seen in the lobby. Yet we are here listening to you tell us about the shortage instead of treating our loved ones. As the funds for mental health care are whittled away and less and less of you “want” to come to work to do your job we are still in need of psychiatric care that doesn’t change because the funding did. If we had the money to we would be more than willing to pay whatever it took to get the care our loved one needs but our accounts like yours are not set up that way. There is more outgo than income, we are sure you understand.
It is not our fault the health care system is set up to bankrupt the US citizen and that mental health care isn’t considered a real health care need even though health care is part of the title.
Disparages in the health care industry affect us the consumers as well because you see we cannot afford the high prices of the insurance that were increased after Obamacare made insurance available to everyone. Insurance went up and so did the costs of medication now that’s not being passed on to us the consumers, and if you aren’t getting the profits surely you don’t think we are responsible? Or do you?
Please understand I see things from your viewpoint as well, I have watched you assisting others and their loved ones before I made it to the window here and although some of the questions were repetitive and they too have read the poster on the wall you continue pointing to they are hoping you are going to be the light in the tunnel as well. I spoke to other caregivers about our experiences at this public mental health facility and we have a list of possible solutions.
We hope your ego allows you to consider we only want what’s best for us ALL and lots of care and consideration fore EVERYONE was the goal. Here they are:
Meditation is a good way to start your day. Knowing you will encounter stressful periods throughout your day a relaxation technique before you leave your house, on the way to work and while at work could do wonders for you and those who come into contact with you.
Eating a healthy meal in the morning before work is a good idea it stabilizes the blood sugar which affects mood.
Wearing comfortable clothing and shoes. There is nothing like being miserable because something is pinching or binding.
Leaving for work earlier will cut down on the stress of being rushed when you arrive at work. It also insures your co workers are in a better mood as they don’t have to cover for your until you get there.
Leave your personal problems in the car, at the door, or on pause. We are not the only source of them and the instructions you give to us about there being hundreds of people needing service may be something you can consider yourself when your sitting there at the desk pissed because people keep coming up for help.
Arrange with your manager to have a break every hour for 10 minutes to refresh especially on very busy days. Hiring a relief person or utilizing the staff that are not with clients may be possible. Your job is indeed stressful we agree but it’s your job. We are working on this in a letter to your superiors as well. We have your back too.
You don’t have to do flips or ring bells when we arrive at your window but if you could tone down the scowl and rigidity in your voice it puts us at ease as well. There is a training course for customer service and how to diffuse instead of infuse more tension into an already intense moment.
Listen Linda Listen. Linda? Listen please. Before you formulate a response or shut us down please listen to our question. Some of us have never been here and don’t know about the poster on the wall. If you don’t know the answers please find someone who does and don’t rudely direct us to an 800 number or sign on the wall.
Do something nice for you on lunch like leave. Get away from the facility and give your mind a break. You cope with loads of stress throughout your day you deserve. Self-care is very important.
Remember you are clocking out at the end of the day and this will be over until you return tomorrow but the people that you are assisting today deserve your patience an understanding.
Please remember just like you we have “other things” going on that may be stress factors and cause us distress or frustration just as well. However we are more often than not very willing to work within the confines of the policies at your facility. We understand you are just as frustrated with many of the restrictions at your facilities as we are because the people making these policies are not doing so with the best interest of the clients in mind. We would love your support as we fight for changes in these policies and procedures that are antiquated and out dated. Until then we need to work with one another and reduce the stress we all know comes with mental health support. We appreciate you we honestly do but we need from you what we give to you and that is patience and understanding. Help us help our loved ones which is the reason you are employed here and why we are standing before you, the service for them.
La Shawn Splane-Wilburn, Survivor & Mental Health Family Caregiver
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