I have been attending Alzheimer’s Society educational workshops pretty much since diagnosis.
The most helpful tidbit of information I gleaned this past June.
It was said partly in jest but with serious intent. It is for caregivers. It goes like this;
I am always wrong.
It is always my fault.
And I always have to say I’m sorry.
And I probably needed to wait for more than three years after diagnosis for the words to have meaning for me, to have any impact. But an impact they have had.
You see, from my husband’s viewpoint, it is not him that is always wrong. It just isn’t.
It couldn’t be. It isn’t always his fault. No way. Just not possible.
So when life goes sideways (or topsy turvy or upside down) with my 50 shades Chuck, this is the refrain that now goes round and round, like ticker tape, in my head.
Understanding that there is no way to reason, to use logic, to employ common sense, to use words in any way, with Alzheimer’s sufferers — these phrases going round and round in my head help to diffuse the most potentially serious flare-ups. And they leave some dignity to my husband. These phrases help to bring our fragile balancing act back under some measure of control.
So no matter the situation, no matter the facts — I am always wrong, it is always my fault and I always have to say I am sorry. And funny enough, there is also a reassuring measure of support I find in these words. Saying them means that I can admit that I cannot fix any of this. There is nothing I can do that will make this go away or change for the better. The only way to handle the situation is to surrender the truth of it. If he can’t be wrong, it must be me that is.
As time went by, the support phrases I would use for myself changed.
“It is always my fault” became “Keep calm and carry on,” as — at that particular stage of my husband’s deterioration — that was all that was left for me to do, simply carry on.
Staying calm, as a caregiver to someone with dementia, requires a realignment in our actions and words. In the beginning of this dementia mess we found ourselves in, it was more than easy to be reactive to what I saw and was experiencing around me. Showing my frustration, impatience or anger never changed a thing, it mostly just made a situation worse. Slowly I began to understand that being reactive helped no one, not myself and especially not my husband.
It was a longer process than I care to admit, the adaptation from being reactive to attempting to always be proactive.
And being reactive was something that continued to occur despite my awareness of its end result. It is a common refrain at support group — calmly managing all the craziness and stupidness that dementia brings, only to have that last little, usually inconsequential, mishap cause us to lose our cool and spark a reaction we regret later.
About 10 months after my husband went into care, I came across a passage in one of Deepak Chopra’s books. This passage helped to focus my awareness on what then needed to be taken care of — me.
Repeating the quote, “What you choose today will ripple throughout a thousand tomorrows” was a way to direct my thoughts and energies into remaking my life as a newly single senior.
And always, whether talking to someone about our situation or in use at support group, the phrase “It is what it is” became, and still is, the truest way to describe our circumstances. It is what it is.
Nothing more, nothing less. It just is.
Sheryl Theessen is a Okanagan writer. Her Caregiver’s Diary focuses on two years caring for a husband with dementia.