How many times have I heard that phrase from caregivers over and over and over again in the past few years while trying to offer some form of support or help? It’s as if caregivers were born with this instant response in order to deflect any attempt to penetrate into their world where they are desperately wanting assistance but feeling too overwhelmed with what needs to get done as well as an unjustified sense of “GUILT”! Why is it that caregivers (by definition I mean immediate family members – spouses and children) feel that they do not have PERMISSION to ask for support when caring for their loved one and more importantly, why do caregivers feel that they do not have permission to have a life for themselves? On average, only 12% of caregivers of dementia patients reach out and seek support. I was enlightened by this fact last week after having the privilege of attending a class at the University of Ottawa whereby a very talented and passionate student was defending her thesis entitled “Assessing Caregivers Hopes and Expectations for Respite Care”.
Truth be told, my own response when offered help would be, “I’m good, thanks”. The truth of the matter is that I was NOT good…EVER! I was MISERABLE! Like all caregivers who have had ENOUGH, when given the right opportunity in the right setting, I was able to pour my heart out, waiting, hoping, begging for a recommendation/solution that would end my misery but as soon as one would be presented to me…my response would automatically be… “Many thanks, but I’m good”! I thought that I was alone in my stubbornness but obviously not as I keep meeting fellow caregivers who are adamant about convincing themselves and everyone around them that they are somehow resilient enough to walk their journey alone without any form of support…until they are not…and a crisis occurs that not only has a profound impact on their own health, but will have a ripple effect on all those around them including the ones that they are caring for.
To my fellow caregivers, please STOP saying “we’re not there yet’ and open up yourselves to the support that is available to you.