Many times we address the needs of those of us with Ankylosing Spondylitis and we fail to acknowledge the people in our lives that act as caregivers and support systems.
We all have at least one person – a partner, a parent, or a friend that we turn to when we are in a flare or just in need of assistance.
When I looked around myself and other members of the Walk AS One Board and I noticed that many of my fellow board members have partners they can rely on. I have my mother and other family and friends, but I rely primarily on my mother.
I know I get frustrated and upset with what is going on with me, but what happens when my mother gets sick? What can we do for the partners and caregivers in our lives? I am sure they get just as frustrated and they can experience caretaker burnout just like anyone else.
Here are some signs of caregiver burnout:
Social withdrawal: Taking less time to visit friends and family and doing the things that make you feel good.
Anxiety/Depression: Worry about the future, what tomorrow will bring as well as feeling irritable, down, hopeless and helpless.
Lack of concentration/Exhaustion: Having difficulty performing familiar tasks because you cannot concentrate or because you just don’t have the energy “I’m too tired to deal with this”.
Changes in sleep patterns: Sleeping all the time, not getting enough sleep.
Changes in appetite or weight
Health problems: Getting sick more often, having things take a mental and physical toll.
These wonderful people take care of us, but how can we take care of them and help them combat “caregiver burnout”?
The answer is that we must do the same things for them that we do to take care of ourselves.
We need to make sure that our caregivers have a place to vent their frustrations without fear of how we may feel. Check for local and online support groups for caregivers of people with Ankylosing Spondylitis.
Here are a few examples you might want to consider:
- The Spondylitis Association of America has a great support community for caregivers
- Arthritis.org has a great section on caregiving
- Check Amazon for books on caregiving for patients with Ankylosing Spondylitis. They have a great selection of books to choose from.
That support group that has done wonders for me? Maybe there is someone in that group that has a partner that can talk with your partner so that they can talk it out with each other.
Find opportunities for them to relax and take time for themselves. Place them in “Time-Out” and give them space to meditate, get a massage, and do something they really enjoy. Even if it is only thirty minutes a day or a week, let it happen.
Make sure they take care of themselves – getting enough to eat and drink, getting enough rest and visiting the doctor when necessary. I know I feel bad when family and friends get sick but it would be worse if they got ill while trying to take care of me.
We love and appreciate you more than you ever know. Please take the time you need to “take care of you”. We understand! You are always there for us and we want to be there for you.
Thank you so very much!
Written by Heather Stewart, Walk AS One Director and Captain of the Rockin’ Weebles.