Thursday 4 July 2013

The Lessons I Have Learned in My Life of Caregiving

For some reason, last night our alarm clock rang at 4am.  My husband quietly cursed and fumbled to turn it off.  We both lay awake after that and quite soon, I could hear his deep and measured breathing.  He was asleep, but I was alert in the dark.  The words in my head were, "what have I learned?"  I began to reflect on what my children have taught me over the years.

There is a language of shared humanity which is not verbal.  It is a watchful, intent, fascinated state of observation that never wains because it is fuelled by love.  Nicholas speaks only a few words, so when I chat with him, I sit forward, eyes scanning his body for clues to expression.  I watch his eyes, or perhaps the tilt of his head to see if he is pointing to something in his room by looking for it.  I observe a smile play around his lips and I begin to imagine what the joke might be.  When he was small and I spent far too many hours holding his arching body and stiff limbs, I learned to read every fine movement as he struggled to find comfort in my arms.

The language of shared humanity is, at its most fundamental, a language of touch.  A loving thought communicated by a hand outstretched on another's arm and held there until the thought is shared silently is what I am talking about.  The idea of "I will take care of you" or "I will take your pain" passes through skin, into flesh and courses through the blood until it reaches the other's brain and resonates there - a sentiment understood without speaking.

I have learned that some people, but not all, want to help a family like ours.  I learned that it is much better to say "yes, please!" to those who do wish to help and enter our world.  Very recently, I went to a neighborhood drinks party.  There was a woman I recognised but couldn't place.  She approached me, asking "Do you remember me?  I'm Jack's Mom.  Nicholas and Jack were in grade five together and Nicholas came to our house to play".  "Of course!" I replied, my eyes widening.  Now I remembered this woman's warm, insistent voice.  Years ago, she offered to befriend me and for her son to befriend Nicholas.  I was amazed and touched by her goodness and her persistence.  I've also been surprised and sad that some I considered good friends turned away from us in our hour of greatest need.  Then, I learned to accept human frailty - to not be bitter, but grateful for those who do embrace us.

I have learned that nature is a healing force.  When I had trouble feeding Nicholas, I watered my garden.  When I had no peace in my head from re-playing conversations about what the future might hold, I walked in the woods.  When I felt trapped by my child's overwhelming needs, I swam in our lake and felt free.  When I felt hopeless, I watched my dog chase a squirrel and return to me, her tail wagging.

I have learned that there is no efficiency and no joy in trying to meet all the needs of my loved ones by myself.  I learned that a group of caring family members and friends can work together to support us if they are organised and have an effective way of communicating with each other.

I learned that the purpose of life is to keep going, keep breathing, keep putting one foot in front of the other and to help those I love to do the same.  I learned that happiness is sometimes a choice, and that despair is always an enemy.

I have learned that it is possible to have a rich life, even if one is very old or very disabled.  This is possible with curiosity, a sense of humor, a sociable personality and an optimistic nature.

I have learned that kindness is the greatest virtue.

These are some of the lessons that I have learned over the years from caring for my family.


Judy Fox said...

Thank you Donna. I am so touched by what you write. Your beautiful spirit shines through. Judy Fox

Wendy said...

Thanks for this Donna. It helps me reflect on my own experience which is so similar to yours.

The Caregivers' Living Room said...

Hi Wendy! I would love to know what lessons you have learned. Especially those that you think you might not have learned if you had not parented a child with disabilities. Incidentally, I find these lessons learned really helpful when I care for my mother, my daughter, and my husband. Thank you for sharing!

Theresa Cloud Eagle said...

Hello Donna, I am happy to see you are doing something for yourself care such as walking, swimming, the relationship from your dog as a means of relieving stress. Self-Care is so important for the caregiver. We may be able to help one another. Contact me -

Anonymous said...

This is a wonderful post, Donna. You are creating a new language of care and the beauty it contains.

Anonymous said...

The Lord kept me up all night long to find this blog post! Caregiving brings out our inner most human essence. You put it to words most eloquently! Thank You Donna!

Christabel said...

All I can say is...thank you. I am so grateful for your words.