Caregiver Burnout – Loving Persons with #FASD

Guest Blogger – Renae Sanford

As far as I can remember the first time I worked professionally as a caregiver for persons with FASD was 1973. I have worked on and off, mostly on, in the field of FASD since then – 42 years. I was good at my job. I know FASD like the back of my hand and I know and love people with FASD with every part of my being. I was not just a professional caregiver. Many of my own family have FASD. I have lived with it in my life for the 65 years I have been alive.

Two years ago I became seriously ill with more than one life threatening illness that forced me to totally change my lifestyle and quit all forms of work. At the time I felt that the illnesses were at least partially the result of many years in extremely stressful situations. I had training in PTSD and the effects of stress on the body and recognized most of the symptoms in myself but I guess I didn’t really put the whole story together until very recently.

A couple of years after the crisis with my health I began to feel that perhaps I could take on some work again. I tried to step back in very slowly. I didn’t accept any positions that required me to take 100% responsibility. I kept my mouth shut when I witnessed staff working with FASD clients making huge mistakes. I didn’t even tell people how long I had worked in the field and my own experience.

I acted as a very limited caregiver to one client. I knew what to do and how to do it but I physically in my own body did not handle the situation well and found it necessary to back out.

Then an old client that I was very close to came for a visit. I was very much looking forward to this visit. After the first week I was in a state of complete panic. I could not deal with the constant need for my attention. I could not give my friend the love and care that he needed and deserved from me. I just wanted to shut the door and bury myself under the covers. “GO AWAY LEAVE ME ALONE” – I felt that! I was shocked. That was not who I was, it was who I had become—why? What was happening? Was it my physical issues that challenged my abilities to handle extra stress. I had worked with over a thousand – yes, over a thousand people living with the challenges of FASD. What was wrong with me?

He did go home and I breathed a great sigh of relief which was almost immediately replaced by an overwhelming sense of guilt. I was the one who knows what his challenges are. I am the one who knows and understands his strengths and knows how to help him use them when he is overwhelmed. I am the person that he has turned to for support all of his life. Now I seem to be making everything about me. What kind of person turns their back on someone in pain? What kind of person forgets all their training and skills when faced with the needs of a good friend?

I am writing this as a process of self healing and a warning to others like myself.

I thought I did a good job of taking care of myself for the past 40 some odd years. I didn’t. I thought the effects of being an FASD caregiver would wear off. They don’t.

FASD is an overwhelming lifestyle of brain and body challenges that consumes not only the person suffering from it but everyone involved. As caregivers we need to talk about ourselves and support ourselves and each other. Not talk about those we care for but talk about us.

What are we feeling?

How are we handling those feelings.

What can we do about protecting caregivers.

Everything I see written and in forums is about the persons with FASD. I am extremely happy that this is going on. Now I think we need to take things one step further and start taking care of the caregiver without talking about the people we support. We need to talk and focus on healing and taking care of us while we still can provide care giving in ways that remain loving and compassionate, supportive and directive without hurting ourselves in the process.

I would like some response from other caregivers. Let me know what you think. I can be contacted at renae.sanford49@gmail.com or on facebook. If you are a caregiver in need of urgent love and care – ask Jodee Kulp or Renae Sanford message us and we can direct you to a Facebook Group that can at least provide virtual support and redirection on ways to help you become and stay healthy.

Lets talk.

Meet James – #3 of 90 Real People with #FASD

This is Day 3 of our 90 Day Countdown to September 9. Please help us get the word out and get to know 90 Real People. Real Lives.

MEET JAMES. James is a dynamic adult, loving companion and great father of some super hockey players. He works directly with kids in the Ontario justice system to help them get on the right life path. Many who also have FASD. He works with a fitness/health coach who he is reciprocating coaching on FASD and how it affects a person. James runs the Facebook page

JamesGideonHorseMY STRENGTHS – My Culture, having my Spirit Name: Eagle When He Flies, Clan : Wolf Clan, my Medicine Bundle all the gifts I have had given to me and the medicines I use to better my life, the Fasd Eagle Staff I carry, the life I lead and my spiritual life. My strength comes through the teachings I received growing up and teachings I receive from the Creator and Ancestors in the ceremonies I attend, teachings I receive from Elders, Native Prophets and Christian Prophets, Christian Apostles. My strength also includes my WILL to understand what I live with so I can help others manage their lives with the tools they have in their lives. FASD affects my physical, emotional and mental, but when I have Christ in my life, FASD does not affect my Spirit, how come? Our Spirit comes from God, comes from Heaven, I am so in love with living with FASD that I’m okay, how come? Because God knew me while I was being formed and shaped me this way in my mother’s womb, if he wanted me to be healed and living what people call a normal life he would have formed me with one of those NT brains and all my medical issues would be not there. So I learned to serve Christ in the shape I am in–in the health I am in. Just because we live with this doesn’t mean we cant serve Christ and be angry with him. People with FASD have a gift.

MY STRUGGLES – actually what I struggle with is asking for help, asking for help in my work place because I enjoy knowing that I know what I am doing. My struggle in my work is paper work, I hate paper work, it slows me down when I am on top of all my gabbing and helping youth and parents. I do Anger management with families and paper work gets in the way.

My health, my vision creates problems, my sore back, sometimes I get headaches when I get to stimulated and when I am under stimulated I get moody. So I usually have to keep an even keel on things, not to much excitement but not to boring. I also struggle with keeping bills paid, such as income tax, and some other bills I have received. I do have a little book I have my bills written in that helps but other bills that I have not written in there. I struggle with time, making scheduled appointment for myself, not for my clients but for myself. So I usually have to keep things written

MY WISH – My wish is that people living with FASD receive SERVICES AND PROGRAMS. Services that accommodate, and programs that coach them to manage their FASD, help them to move forward with their dreams and goals, to understand FASD even if its a little bit at a time. For the world to understand what FASD is like, LIVING ON A ROLLER COASTER THAT NEVER STOPS BUT WE CAN RIDE THE RIDE WITH JOY, LOVE, EXCITEMNT, AND STAY HEALTHY!

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