Who Cares for the Caregiver?


IMG_2720TNOYS is coordinating the Harris County Transition-Age Youth and Families initiative focused on youth and caregiver engagement to improve mental health services and supports for a young person’s successful transition to adulthood. We recently partnered with NAMI Greater Houston on a parents and caregivers-only workshop series and are excited to spotlight the experiences of one caregiver, Karen Chamblee.

Caregivers of young children often complain about keeping up with their little ones. But parents who are dealing with mental illness in their child can become overwhelmed in a hurry. And worse yet, watching your child suffering on a daily basis or having to deal with a mental health crisis can even cause a “self care shutdown” to occur on the part of the caregiver.

If you are caring for someone who cannot or won’t care for them selves you may often feel like you are under a heavy rock. You may even feel as though you need someone to care for you once in a while. I know I did.

Before our world turned upside down with the onset of our son’s mental illness there were so many little things I did to restore myself when I needed a break. I enjoyed taking a walk on a pretty day, working in the garden and especially getting lost in a good book. These things seemed to feed my soul and they even gave me the extra push to do other types of healthy activities for myself, like spending much needed time with my spouse or cooking a healthy dinner. I’ll admit that even with all the healthy food I still had a wicked good chocolate stash that often got raided along side any of the above “me time” activities. After all, life is pretty good with a Nicholas Sparks book and a bag of Reece’s Pieces!

However, after we found out our son was suffering from a mental disorder, I soon realized that all the activities that used to recharge me seemed impossible to even begin. Many of the things that I enjoyed I had just lost interest in. It was such an effort to get any alone time that I simply stopped seeking it. My perception of the benefit of a time away also began to get blurry. It’s like my weariness caused me to hit a wall that I couldn’t seem to get past. Thankfully, I did come to see the truth.

I learned that it is possible to break through the barrier of exhaustion that surrounds most full time caregivers, and that I really am the best person to take care of myself. It all starts with a simple concept most caregivers have already heard before but often times seem paralyzed to be able to put into action. The truth is that I am so much more capable of meeting my son’s needs if I am getting my own needs met. Just like a flight attendant’s pre flight safety speech for parents traveling with children, if the cabin is loosing air pressure you must, “put the oxygen mask on yourself first or you run the risk of passing out before you are able to secure help for your child.” And here’s my takeaway; if I am completely worn out I’ll be in no condition at all to help my child!

So what is the practical action item here? How can I expect to accomplish any kind of meaningful self-care when I cannot even seem to think straight most days? The reality is that it’s just like dieting or any other lifestyle change. You simply must decide to do it. In my case I had to break out of the cycle of exhaustion that was consuming me.

I remember when my son was a newborn and he would sleep all day and be awake all night. Back then I was also stuck in a cycle I couldn’t seem to get ahead of. Exhausted from being up all night, I gladly slept right along with my baby all day. Back then my mom was still living and she had come to meet her newest grandchild. She swooped in, like the superhero she was, and said, “honey, this baby is confused!” He’s got his nights and days mixed up and we’re gonna set him straight!” That day my mother sent me for a nap and said, “you get all the rest you need today. I’ll wake you to feed the baby, but I’m also going to wake up the baby when he needs to eat and keep him awake. It’s gonna be ugly, but you just watch, tonight, he will sleep!” And she was right.

We’d all like to have a visit from our mother or that special person who understands our needs before we do. Sometimes I’d especially like a visit from a fairy godmother! But I know that no one is going to show up and tell me to click my heels together 3 times so my son’s behavior issues will disappear. While I am not responsible for my son’s behavior, I am responsible for how I respond to it, so it’s up to me to have the kind of self-awareness to realize when I am depleted and to take action to help myself.

Caring for a person with special needs is hard work but it can be done with a level of sanity if you put yourself first as often as you need to in order to maintain a healthy mind. It has a ripple effect and soon you will be surprised to see how many areas of your life are becoming healthier. Here are a couple of ways I did this and how finding that needed mental break has changed my outlook and therefore my situation.

Parents who are weary from caregiver responsibilities need to find an activity that belongs to them. If having some alone time fills your needs like it does mine, than by all means go into your cave and have some “hermit time.” When I am participating in an activity that I enjoy I am meeting a need to relax and clear my head. But what I am also doing is purposely setting aside time that I will not be thinking about the worries that usually consume me.

Let me say that changing your mindset can get a little tricky, especially when half the battle of managing life with mentally ill children is the daily confrontation with worry. And since worry often travels with guilt and fear I’ve needed to learn when to tell those two troublemakers to “take a hike. ” Those two happiness suckers are emotions that I must identify and rid myself of on a daily basis.

The next and most important thing to get into place is support. Reaching out to ask for help is humbling. But this outward act has a way of reaching into a place inside us where walls are broken down and restoration begins. I realize support can come in different forms for everyone but isolation is not healthy. If it means calling a trusted friend or family member and confiding in them about what is really going on, do it. If it means registering for a support group or receiving help from your community of faith, do it. It is so worth the effort to find other parents who have similar life experiences!

Let’s face it though, it’s not exactly easy to find a good babysitter, and it can be even more challenging to get childcare help for a child with special needs. You may need to get creative or investigate places that offer respite care for caregivers. Do whatever it takes to get some childcare. One hour is better than nothing and even one hour of exercise or coffee with a friend can put a long lasting smile on your face.

For me, the best form of practical help came from attending a class offered by The National Alliance on Mental Illness. This class gave me needed time away from my situation. NAMI Basics is an education program for parents and caregivers of mentally ill children, and it is where I was able to not only learn about mental illness but also build a circle of support. Finding safe people to let down my guard with was such a blessing and since the classes were held during school hours I didn’t even need childcare because my children were in school.

Reaching out to NAMI was motivated by my son’s special needs but I’ll admit it also met my own needs. Setting those few hours aside each week for 6 weeks was a game changer for me. And yes, there are plenty of places on line where you can get information about mental illnesses, but it’s not always the right information and you typically aren’t building relationships with other parents who can share your burdens.

For me, being a part of NAMI was that activity that belonged to me. It was time for me to start investing my own time in something that would pay off and help reap big returns for me personally and for my family. As Warren Buffet said, I needed to “put some skin in the game.”

Getting the support we need and the badly needed down time when life gets overwhelming helps me be the best caregiver I can be for my son. When I step out of the chaos for a little while I am better able to return to my family refreshed and much more capable of managing our family and my son’s behavior. And when I come back refreshed I am not only filled with a little more personal peace of mind, but my son can see by my example how to take care of himself as well. As parents of children who need more care than the average child, there is so much healing available to us if we just take the first step towards our own personal wellness.



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