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.

3 thoughts on “Caregiver Burnout – Loving Persons with #FASD

  1. Second post today featuring “Let’s Talk. I love it, because I have only survived many life challenges because I had people to talk to. Learning to step away and let me son make his own mistakes and try to remedy them, but it is hard to stop being a “fixer” and hard to let go of the guilt when things don’t go well. He has a super team, but we’re all exhausted. I’m so glad you told your story, Renee. Much love.

  2. Renae, you and I both go back exactly 42 years working with individuals who have FASDs. About 15 years ago, I noticed on FASLINK that many of the caregivers were ill. FASSN did survey at that time. Although both husband’s and wives had what could be ‘stress-related illnesses’, most of those who were ill were the mothers. Now, many years later, we are convinced that stress took its toll.

    BTW: That survey should exist in FASLINK’s archives. People listed what types of health problems they had. I, too, am quite ill. I’m certain that stress exacerbated the problem. So glad that the focus is shifting towards watching out for the caregivers too. The biggest problem still remains: ‘safe’ respite.

  3. Renae, you and I both go back exactly 42 years working with individuals who have FASDs. ‘About’ 20 years ago, I noticed on FASLINK that many of the caregivers were ill. FASSN did a survey at that time. Although both husbands and wives had what could be ‘stress-related illnesses’; most of those who were ill were the mothers. Now, many years later, we are convinced that stress took its toll.

    BTW: That survey should exist in FASLINK’s archives. People listed what types of health problems they had. I, too, am quite ill. I’m certain that stress exacerbated the problem. So glad that the focus is shifting towards watching out for the caregivers too. The biggest problem still remains: ‘safe’ respite.

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