Wednesday, December 01, 2010

caregiver or carer

Alas! the barrier of a common language. In North America, we are “caregivers”, everywhere else in the English speaking world we are “carers”.

Communicating between or with similar caregivers / carers should be helpful. Yet, secondary labels such as family, spousal, sandwich, elder, parent, child, and informal often confound rather than clarify.

Giving care is dynamic and often unique in needs. We become defined by our circumstances.

‘Juggling’ is the only phrase I have ever found to describe balancing caregiving for my wife with progressive Multiple Sclerosis while basically single parenting and raising our daughter – which has occupied 21 years of my life.

In the beginning a person struggling for independence following a life altering diagnosis or disability may bristle at unsolicited though well intended offers or labels of a family member or friend as their carer / caregiver.

On the other end of the spectrum, when progression evolves to the care facility era are you still a caregiver / carer?

When some of us become legally empowered to make decisions for another, it’s odd that neither the word guardian nor advocate involves the root word ‘care’.

Regardless of labels or situation I believe we share some common denominators.

The carer / caregiver chooses to step forward as sentinel. There is no lengthy deliberation over how to care, how to spend money on care, and the future of care.

I believe we can all agree that we are the ‘hands on’ family or friends of an individual who needs help with his or her activities of daily living.

I believe most of us feel we are alone.

We have no secret handshake. There will be no gold watch, no retirement plan. We cannot even agree on what we are called.

Most important, we’ve chosen to turn from ordinary people to something different.

Tonight, Patti and I sat sipping hot chocolate while snow flurries danced around us. While Patti’s memory of the moment melted with the snow, I couldn’t help but reflect perhaps we caregivers / carers are like snowflakes and no two are the same.
Special thanks to Elder Depot Caregiver's Corner for

by Patrick Leer
Caregivingly Yours, MS Caregiver @


  1. That was quite a collection of blogs they put together, Patrick! One could get "lost in time" reading them all and all have unique stories to be shared. I spent some time over at the Parkinson's ones since that is what my MIL is dealing with.

    I was touched by your line:

    "Most important, we’ve chosen to turn from ordinary people to something different."

    It wasn't a choice you would have made, but you had to choose to become a caregiver, to lovingly put someone's needs often first before your needs, to serve more than you would get served, to be respectful and kind and treat with dignity and integrity the person you are caregiving for (in your case, of course Patti). It really takes a special person to be a caregiver like you are Patrick. I can imagine that it would be lonely and I can imagine no two caregiving situations are exactly the same, but I'm sure you all are great at juggling so much and have a very full plate with all that is involved. The fact that you can do it so well and with such humor and compassion for Patti after all these years speaks volumes of your heart. So many would be bitter but I don't see bitter in your writings and your caregiving. Truly a sacrifice of love with it. I truly do admire you for how you caregive. I know it is not an easy road to walk.

    snow already???? I won't say it was 80 degrees here today (oops just did :)


  2. Ah-- the secret handshake. Once when I was in a lineup at a coffee shop, I started talking to the woman next to me. She was about to pay her daily call to her parent, who had early dementia. I was taking a break after my twice weekly visit to my parents, who had a variety of "issues" that required the help of a carer. How often I have found other caregivers in similar circumstances-- the stories that come out after a glass or two of wine at a social event, the encounters at grocery stores where we fill our carts for someone else, etc.etc. This is probably more common (increasingly common) for those of us who have caregiving roles with our aging parents. What I would love is for the secret handshake to be not so secret. For caregiving to be a mainstream topic of conversation, that doesn't take a glass of wine to loosen it from its location as a private, family concern. Caregiving concens EVERYONE.

    How ironic it is, but how privileged I feel, to have helped out my parents when my Dad had Parkinson's and dementia. The irony is that I have done research in the area of caregiving for years. Apparently God decided that I needed a little hands-on experience.

    Thank you for your blog. And YES, you are still a caregiver when your spouse moves to a different place. I was probably most active with my Dad after he moved to a care facility (that didn't provide enough care, but that's another story). My parents are both gone now, but I still consider myself a caregiver (recovering).

    all the best

  3. I agree that we are still caregivers when a nursing facility enters the picture. While no longer the hands-on person I was when my mother lived with us for 10 years, I'm still the one that must oversee when others care for her. My Hubby may look at it differently should I have to enter such a facility, though.


  4. Great points about some of the challenges and accomplishments for being a caregiver. I agree with you that although everyone is different, there are certain qualities which all caregivers share. Thanks!

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  5. Hi Patrick,

    I love that you brought up that caregivers can't even agree on what to be called.
    My husband, Dave, has dementia (dx 4 yrs at age 57) and I don't always feel like a care'giver'. As time goes on, I'm recognizing more of a balance of care'receiving'. I am receiving valuable lessons from Dave about unconditional love, patience and acceptance of what is. I'm receiving support & help from neighbours, friends & family--emotional, hands-on, and financial.
    Wonder what universal word would better describe a very important role in our life? My vote is for carers for now.

    Great blogging!




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