Ask TCV: Will I survive as a caregiver?

Maybe.

To know for sure, follow the advice of experts and those who have walked in your shoes.

When you walk upon the road of caregiving do you have directions?

“Is there even a map?” you ask.

More maps of the caregiving journey are available to caregivers today than just a short decade ago. There are books, support groups, online resources, and organizations offering help lines, educational conferences, and retreats. But it wasn’t always this way. Caregiving seemed to be a silent journey to be endured alone.

Early on, during my walk along the caregiving road, I lamented to my father’s attorney that caring for my father was the least of my burdens. Most of the weight I carried was taking care of his unresolved estate-related matters.

I hated that my father didn’t make decisions earlier. At age eighty-five he wondered why I was concerned. “I’m going to live another fifteen years!” he exclaimed.

A year later, when he could no longer live independently, my husband and I moved him into our home in California.

It fell on my shoulders, his conservator, to seek closure on the many unfinished and partial details he left on scraps of paper.

It wasn’t easy and my role drove wedges among my sister, brother, and I, which remain in place to this day; thirteen years later.

At $250 an hour, my father’s attorney shared two simple analogies:

You decided to pick up an acorn and instead got the whole oak tree!

You decided to pick up a grain of sand and instead got the whole beach!

I admit, his words made me feel better.

Whether or not you survive is entirely up to you!

Seriously!

Enough caregivers have died far too early in their journeys. In most cases, they tried to do and be everything for their loved ones and exhausted themselves to death.

To survive and even thrive you need to accept that you can’t do everything yourself.

In order to survive, thrive, and find JOY along the way:

1. Take care of yourself first. Dr. Dosa, gerontologist and author, includes this as the first tip for caregivers in his NY Times bestselling book, Making Rounds with Oscar.
   You’ve likely heard this before. It is repeated in every presentation, educational session, and in helpful tips for caregivers; yet few of us heed this advice. Instead, we retreat from others as we get crushed alone by the weight of caregiving. We slowly fall into depression, become ill, and some of us may even die!
   If you want to survive, take care of yourself first; otherwise you won’t be around long enough to take care of your loved one.
   Sometimes, all it takes is stepping away for five minutes. Other times, it means asking for help so you can take a day-long, weekend, or longer break to regain perspective and balance in your life.Once you’ve committed to taking care of yourself in order to survive as a caregiver, take the next step.
2. Learn about your loved one’s disease or illness so you know what to expect. Talk with others who are walking along the same caregiving road. Join a support group. Mine became my life-support group.  You’ll be surprised how much you thrive as a caregiver when you have the support of people who speak the same language and shed the same tears (of JOY) as you.
   As you learn what to expect, you’ll likely find that you have more options. Holly Whittelsey Whiteside advises in her recent book, The Caregiver’s Compass, to be flexible in your approach.The more you are aware of who you are, your needs, and limitations, the more flexible you can be  in welcoming the changes to your life that come with being a caregiver. Once you’re taking care of yourself and thriving as a caregiver, you may even find the JOYs.
   
3. The one thing that will dramatically improve your approach to caregiving is when you care for your loved one as you want to be cared for.
   Once you learn enough about your loved one’s illness or disease to walk in his/her shoes, you’ll discover a whole new way of caring from a place of greater compassion. Surprisingly you’ll gain more strength, because your care is directed from an empathic answer to the question, “How would I want to be cared for if I had this disease or illness?”
   The little things will stop being as irritating. Instead, you’ll find more reasons to laugh as you journey forth with your loved one. You’ll find precious JOY in that moment when your husband, wife, or parent remembers you and calls you by your (correct) name.

I’ve survived, thrived, and even found the JOY in caregiving following these three tips. They’re not always easy to follow, but if you keep focused on them day-to-day, you’ll do much better as a caregiver than if you ignore them all together.

I look forward to hearing from you! Please share your experiences with fellow caregivers in the comments section below.

Brenda Avadian will be presenting her Can I Survive as a Caregiver? keynote at the Inland Caregiver’s Resource Center’s Caregiver Conference on June 10th.

More information about surviving, thriving, and even finding joy in caregiving can be found in “Where’s my shoes?” My Father’s Walk through Alzheimer’s and the Finding the JOY in Alzheimer’s series.

Visit The Caregiver’s Voice Book Review during the next few weeks for reviews of The Caregiver’s Compass and Making Rounds with Oscar.