The Caregiver Blues
- "Have you tried this new product that 'they' say can cure AMD?"
- "I don't know what to do. My retinal specialist says I need to have injections in my eye, but I'm so afraid of that!"
- "What will I do if I can't drive? I live alone with no one near to help."
I hear these and many more questions and concerns almost every day.
Linda, a caregiver-of-sorts
I've been an administrator and caregiver-of-sorts for three years to a Facebook group with almost over 3,000 members, some of whom have AMD or other eye diseases. Some are friends, family members and caregivers of people who have AMD.
I was also a long-distance caregiver for my dad who had advanced AMD and briefly for my long-time friend Sue who had the same stage of AMD as Dad. I was also a long-distance caregiver for my mother who had Alzheimer's at the same time that Dad had AMD. A day with them both was very, very stressful.
A different type of caregiving
I know that my background is different from those of you who are caregivers and actually live with or live near someone with low vision from AMD. I spent time with my mother and dad which gave me experience helping with the day-to-day struggles. There were also the daily phone calls from them where I had to figure out how to help them or get them the help they needed.
Linda, an overwhelmed caregiver
Even though I'm sitting in my home behind a keyboard, when I read the many questions and concerns that describe the emotional trauma of being diagnosed with AMD, I have the same visceral reaction. I'm working with my Facebook group or checking it 7 days a week. It's Sunday here. I woke at about 6:30 AM and made the mistake of checking the group before I had my first cup of coffee.
My day-to-day routine
Overnight, a discussion started that turned contentious where really misleading information was shared. By the time I finished my second cup of coffee, I'd written a handful of comments to try to redirect the conversation so the members got the correct information and several comments to smooth ruffled feathers. Hours later I realized that I hadn't made breakfast for my husband who is recuperating from surgery!
I lose track of time some days. I have spent hours in the group and private chats trying to help people who are upset and confused...and there's a LOT of that going around. Social media is great for sharing stories and giving people what they need to make informed decisions about their health care. That's why Health Union is so great!
Am I taking care of me?
I know why I do this - why I've been doing this - for three years. It's for people like my dad, my mother, and Sue. I 'see' and hear each of them in what they type at their end of the internet wherever in the world that may be.
The question I'm asking myself today is, "Am I doing what I tell others to do, and that is to take care of YOU first?" The answer is no, I am not.
How to Manage Caregiver Stress
What should I be doing? If you are a caregiver for anyone with any disease, it's so easy to put them first, give them all of your energy. I remind myself: When you are on a plane, they tell you to put the oxygen mask on yourself first, then the other person.
There are many great articles about and resources for caregivers. I like this article, 8 Tips to Help Manage Stress When Caring for a Loved One. In it, these are the things we should be doing. There are lots of specific ideas in the article:
- Carve out “me” time.
- Eat for better energy.
- Exercise regularly.
- Recharge—both mentally and physically.
- Take an active role in your own health.
- Stay connected.
- Think positively.
- Learn how to detect and manage stress.
Let's check ourselves
How many of you do one or more of the things in this list? Yikes! It's time for ME to manage MY caregiver stress! I'll be back with reports on how I'm doing.
How are YOU doing? What do you do when you're feeling overwhelmed?
Are you aware of assistive technology for AMD?