Caregiving

Winter is the best time for me to write. I can think of so many other things to do when it’s warm and inviting outside. The garden needs watering or weeding, my dog needs walking, wouldn’t a swim feel great, or it’s a good day to ride a bike or horse. I have many interests, as I’m sure many of you do. Our hobbies or passions can be a sanctuary when life becomes difficult.

Caregivers of Special Needs children need a sanctuary, a place they can just be. So many of the comments I read on social media are asking for help or advice. We are afraid a lot of the time. As a parent of an adult male with Prader-Willi Syndrome, I have experienced fear. It can consume all of your identity. You become focused on fixing the problems. You use business, or substances’ as a way to keep yourself from feeling.

 It’s ironic that this syndrome that mimics addiction, will cause codependency in parents’. This is not a judgement on my part, the last thing any of us need, is someone saying you need to do more or do it better.

 

At the recent Prader-Willi Syndrome National Convention, Greg Cherpes MD, spoke about mental health for parents. I admit I attended his talk because I had misread the description and thought it was about mental health for people that had the syndrome. I’m sure many of you are scanners, like me. It can get you to place you didn’t think you would go to.

 

Dr. Cherpes stated the two most common mental illnesses for parents of special needs children are depression and anxiety. You may think to yourself, of course I am depressed and anxious I have a special needs child. For many years I struggled with untreated depression. Many of us still think of depression as just being sad, but it is so much more. It can lead to withdrawal, self-criticism, indecision, memory trouble, and thoughts of suicide.

 As caregivers we also experience what Dr Cherpes referred to as Traumatic stress. We all think of that in relation to war or a violent incident, but those rageful meltdowns, picking behaviors, constant vigilance of food consumption, and sibling conflict can also trigger traumatic stress.

 The good news, help is available. Many mental health issues are now handled by a family doctor, the first step, an appointment. Medication can be lifesaving and help us cope. Meditation, Biofeedback, deep relaxing breaths, yoga, daily exercise, affectionate relationships, can all increase mental health.

 The “too busy” excuse may sound like you are an angel of mercy to your demanding family. “Too busy” to take the same care of yourself that you take of others? Don’t your loved ones deserve someone who can be fully present, engaged, and enjoying the one life they have been given?

 Our son has lived in a group home for ten years now. It still seems like I am on vacation. I no longer handle “meltdowns,” the staff at the group home manage those. A whole team now strategizes how to minimize them. I am just a Mom. I still have concerns and am involved in making sure my vulnerable adult gets good care.

 I have been a fulltime caregiver, and I can state with great certainty that looking after myself, taking time off, seeking help for mental health, saved my life. It certainly saved my family from enduring an exhausted, angry, passive aggressive, overwhelmed, parent. Give yourself permission take good care of yourself.