Friday, September 10, 2010

loneliness of the long term caregiver

Loneliness can be complicated, yet I suspect for long term caregivers it is simply another unpaid occupational hazard.  
My Wife Has MS: Alone With Multiple Sclerosis “the world can be a very lonely place. When you have a disease like Multiple Sclerosis it seems to magnify those issues at times” 

A Day In My Life: Loneliness “I spend a lot of time at the nursing facility where Jack now lives, but it still doesn't fill the empty void at our home.”

I count the steps from Patti’s room at her care facility to the exit door to force my mind to not think about what is behind me or not ahead of me.

Loneliness happened as our life grew more isolated with long term care for Multiple Sclerosis. Intentionally or unintentionally friends and family pull away, maybe they simply are unsure what to say or do.

Long term caregiving bends time. Physical, financial and emotional demands change you. Friends and family change differently - the gap between widens as the decades go on.

As the caregiver you have to function in both worlds, essentially speak two languages. What are the chances you will bump into someone who can talk about what it’s like to care for a dependent person? Ever try ‘adult diapers’ as small talk?

Conversations involving memory loss may as well be a living etch-a-sketch. Thoughts, words, feelings maybe even one day yourself are simply erased.

Whether homecare or care facility era there comes a passing moment in each day when you are reminded …
“I never cared for the sound of being alone
"I am," I said
To no one there
And no one heard at all
Not even the chair”
Neil Diamond

Fans of psychobabble may label loneliness unhealthy. Then again fans of psychobabble would not ‘get’ caregiving if it bit them on the ass. No one ever chose to be a caregiver for ‘their’ health.

To care is never the convenient path.
Loneliness is not always choice. More than 3,000 children lost parents and over 1,600 people lost a spouse or partner 9 years ago tomorrow in the Al-Qaeda Terrorist Attacks of September 11th.
Caregivingly Yours, Patrick Leer 
musings: patrick ponders


  1. Patrick, a haiku tryptich for you:

    you give of your heart
    the payback may elude you
    your goodness still lives

    but you are human
    it is not unexpected
    that loneliness comes

    if only we could
    wave away sorrow with ease
    the heart could then smile


  2. Sending you a cyberhug Patrick. I can't imagine walking in your shoes and everything you, Patti, and Megan have been through. I am sorry it is a lonely battle, I wishwe lived in a world (one day we will) when things like this don't exist, where there is no more sickness, pain, etc. Unfortunately this is what we have right now, as hard as it is to deal with. I wish we would look beyond ourselves more and reach out and help and be there for people struggling or lonely and not turn away from them in their hour/time of need. I am just so sorry about it all...........


  3. Great post, Patrick. In addition to the physical and emotional demands of caregiving, I hadn't given a lot of thought to the social isolation that comes with caring for a family member. It's a tough job. Patti is lucky. I'm lucky.

  4. Patrick,
    As usual you put something down that comes from your heart and speaks to so many who experience the demands of caregiving. Yet we know true joy when we see the smiles of those we love and how we add to their lives. It is lonely when you make sure you don't talk about changing diapers, sheets, meds, and whatever else you do to make life easy for Patti. Thanks for speaking for so many of us.

  5. Wow, thank you all for your kind thoughts and comments. As a guy blogger on caregiving I'm guilty of a more John Wayne slant than an Eric Segall's Love Story. Reading my fellow caregiver bloggers writing on loneliness inspired me to paint "the complete picture and nothing but the complete picture so help me God"

  6. Believe it or not, I do understand. It's hard to explain but I was a caregiver to someone who is now gone.

    I think the emotional demands were far more difficult than the physical. Even thinking about it now...makes me tired but I would in a heartbeat take the demands back. Yes, I would. Such is the way of love. Comes at a heavy price though. Other people may make a different choice (if choices were possible) and I would FULLY understand. Boy would I...

    Thanks for an insightful post.


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