Tongue-Tied in Caregiving: Why is Asking and Offering So Hard?

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Most days I drive across a bridge linking my neighborhood with our son Nick’s suburb. Homeless folks hang out at the stop lights either side of the bridge. They bob between the cars, hat in hand, trying to make eye contact. They smile, with or without teeth. Depending on my mood, I smile and shrug, or I hurry to find some coins. Some days I stare straight ahead. Yesterday I found myself wondering what would happen if I began a conversation with one of these panhandlers. Would I be tempted to offer a place at my table or a room in my home if I knew their sad story?

“What stops me from making eye contact or from speaking to a homeless person?” I wondered as the light turned and I drove away. I thought, “If I did stop and say hello, what exactly would I say?  Excuse me, Sir… or…. May I help you? (do they look as if they need ‘help’?) or…. Would you like something to eat?  (I don’t want to accompany this person to a restaurant, I’m on my way to an appointment!) Oh, forget it.  I don’t know what to say.”  So, in my mind, I keep walking.

It’s so difficult, negotiating the giving and receiving of care. Have we forgotten how to do it?  Did we ever know how? Or, do we need to invent a new language of expressing need and gratitude?

I’ve begun to think about the purpose of our language in caregiving.  So much talk is given to helping our loved ones be more ‘independent’.  But is that what they (or we) really want?  One thing I know is that independence is not what it’s cracked up to be.  Independence is a cruel fiction for many of our loved ones and even for those who are more able, it’s just an idea that equates to loneliness.  ‘Interdependence’ is a much better guide post for our actions and policies to support both caregivers and their charges, but that word hasn’t caught on as many of us had hoped.

I think it’s dignity that must drive our search for the language of care and most often, dignity can be equated to contribution.  Everyone wants to feel useful and to have the opportunity for being empowered to act, even if their physical or mental capacities are very diminished.  So perhaps, it’s ‘enabled autonomy’ that we strive for in our caring relationships.  Let it be so for the purpose of this line of thinking.

If we want to help someone be autonomous (even if they need assistance to get through much of the day), what are some ways of offering help?  Perhaps the first way is to be silent and observe closely.  Is your loved one struggling to do something?  Is that the moment to ask, “Want some help with that?”  Next time that task comes up, does it seem appropriate to mention, “I saw in a magazine recently these really nice sweaters with zippers instead of buttons.  I’ll pick one up for you to try, but in the meantime, I could help with these buttons – they are so annoyingly tiny!”

Facilitating people to be autonomous with dignity is time consuming work of the human heart.  Caregivers know perfectly well that it’s much quicker and easier to just do the task for the person while prattling on about a different topic in order to distract ‘the patient’.  And there may be times when that is necessary, but can’t we be honest about it?  Our loved ones deserve the dignity of an honest exchange during their care activities.

Offering assistance when it’s unwelcome can be tricky.  Sometimes, “I’m here if you’d like a hand with that” can result in watching in painful silence while a loved one tries and fails to manage eating a bowl of soup from a spoon held in a trembling hand.  If inserting dignity into the situation, rather than dealing with the mess (or eating the soup) is the objective, perhaps it’s not so hard.  Make the soup texture the common enemy – “look at how they make the soup so runny these days!  It’s probably a cost cutting measure.  Let’s see what’s in the fridge – maybe we can use that soup as a base for stew.  Mashed potatoes here we come!”  Because dignity is the objective and enabled autonomy is the means to the end, the words come out in ways that are conspiratorial, empathetic, light-hearted and conversational.

But, what of asking for help?  Should we expect our charge to be aware of preserving dignity in herself as well as her caregiver?  I believe we should.  Take the case of our son.  He has very severe cerebral palsy, but that hasn’t stopped him exercising terrible manners over the years.  A disability is no excuse for rude or self-centred behavior in our house.  So, when I walk into his room in the morning and it’s Mother’s Day, for example, I might hear a demand to change the channel on television.  I want to correct, but not demean, so Nick will laugh as he tells people that my response will be “Nick, I’m going to walk out of your room and walk in again.  We’re going to say good morning properly next time so repeat after me, ‘Good morning, Mom! You look especially fantastic today!’ (I jazz up the compliments so we can both laugh, but he gets the point of the exercise.)  And for those who aren’t aware, Nicholas is non-speaking.  But his language comprehension is near-perfect and if he manages to blow me a kiss the second time around entering his room, I take that as a respectful morning greeting.

I still don’t know how to begin a conversation with a homeless person I’ve never met.  I don’t know how I would end that conversation, if I ever did manage to begin.  The language of care is very tricky and fraught with emotion.  But one thing that my gut tells is right: we must begin with love and dignity in our hearts.  Perhaps the words will follow.

By: Donna Thomson

 

http://www.donnathomson.com/

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About Donna Thomson

DONNA THOMSON began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author, consultant and writer.

In her book, “THE FOUR WALLS OF MY FREEDOM”, (2010 in hard cover and 2014 in revised paperback, House of Anansi Press), Donna examines her personal family experience with caregiving, probing the ethics and economics of how families giving and receiving care can flourish in society.  Donna examines how social innovation leading to practical solutions can help families thrive even in very challenging circumstances – a subject she blogs about regularly at her site “The Caregivers’ Living Room” (www.donnathomson.com).   Donna also writes extensively for magazines on the topics of eldercare, disability parenting and family caregiving.

Donna is the Special Advisor for Caregiving at Tyze Personal Networks and is a Senior Advisor to the PLAN Institute for Caring Citizenship.  She is a board director of NeuroDevNet, a Canadian Network of Centres of Excellence (NCE). She is the co-founder of Lifetime Networks Ottawa, a PLAN affiliate and speaks often on the subject of integrated, coordinated networks of professional and personal support to ease the way for families giving care in the community. Donna is also an instructor at the Advocacy School (Ottawa, Canada), teaching families how to employ best practice political advocacy strategies when advocating for care. She consults to hospitals and research projects, representing the interests of patients and families.

Donna holds degrees in Fine Art (Theatre), Education and Theatre in Education.  She has spoken on disability and family wellbeing extensively, including at the London School of Economics, the Skoll World Forum, and the International Centre for Evidence in Disability.

Donna is married to James Wright, the former High Commissioner for Canada in the UK.   They  have two children, one of whom has severe disabilities with medical complexity and Donna helps care for her mother (94 years young) as well. Donna lives in Ottawa, Canada  when she’s not escaping to the cottage in Quebec or to Cat Island, Bahamas.

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