Living: the ultimate team sport

Caregivers: learning from our mistakes.

Posted on March 9, 2012 Updated on August 26, 2015

“Once bitten, twice shy.”  The Chinese and Japanese proverb has a variant:  “One year bitten by a snake, for three years afraid of a grass rope.”

How does one who is as imperfect as myself apply this Proverb without writing an article that goes on and on into perpetuity?  All of us can think of circumstances in which we fail to learn by experience and continue doing the same stupid/inadvisable thing over and over again expecting different results.  As I said, my life is rife with examples, but this article centers around caregiving – especially as it applies to caring for someone with Alzheimer’s or other dementia.  CAVEAT: I would never write on something about which I had not experienced.  I’ve been there.  I’ve done that.  I’ve paid for my mistakes.

I’m so tired of my spouse/father/mother asking me the same question over and over again and supplying her with the same answer over and over again!

Anyone with a loved one who has any type of dementia has lived in this unending vicious cycle.  We think that if we just answer the question one more time she’ll remember and not ask the question again.  Or we think that if we just spoke louder – or slower – she would certainly remember and life would be infinitely improved.  Not happening.  Answer the question once, and then move on to another topic.  Change the subject; redirect your loved one by doing something that will distract her; or simply don’t respond at all.  What ever you do, don’t aggravate the situation by reminding her that you’ve already answered that question numerous times so why don’t you stop already!!!???  Take a deep breath and remember: your spouse isn’t the one asking questions over and over again and frustrating you beyond all measure – the disease is asking the questions.  I know – intellectually you understand that concept, but your eyes see and hear your spouse pestering you for an answer over, and over again, so it’s very difficult to get beyond the emotion of the situation.

My husband keeps thinking we’ve visited France, Italy, and Spain – even expounding on our shared adventures – but we’ve never stepped out of Omaha, Nebraska our entire lives!

Why not go along with the fantasy?  If you’re not comfortable with that idea, let me ask you this: each time you corrected your husband, how did that work for you?  Your husband keeps insisting that you’ve been there; you keep insisting that you haven’t.  You both end up frustrated and your husband feels ashamed that you’ve called him out on the well-known fact – by you alone that is – that neither of you have ever traveled farther than the local State Fair.  Why not have fun with it instead?  Ask him to expound on the experiences he remembers.  Editorialize a bit and reminisce about all those memorable times together.  The Alzheimer’s Association has a motto:  “If you don’t insist – they can’t resist.”  As the person who does not have dementia, it’s far easier for you to adjust to his reality than it is for him to jump into yours.

When my father has an upcoming doctor’s appointment, I start reminding him about it a week before so that he’s not surprised and will be prepared for the appointment.  It’s so frustrating, however, when he keeps asking, “When are we leaving for my appointment?  I thought you said I had a doctor’s appointment.  Did you cancel it?  WHY did you cancel it?”

There you go – doing the same thing over and over again, expecting different results.  In this scenario, you’re the only one needing advance notice of the upcoming appointment.  Your father doesn’t have the ability to understand the concept of elapsed time so providing him with his day’s/week’s/month’s itinerary serves no purpose.  But I write the appointment on his calendar in big bold letters – why doesn’t he see that it’ll be at least two weeks before that scheduled date?!  Again – he doesn’t have the ability to a) understand the concept of passing time; and b) it’s very likely he doesn’t understand what you’ve written, regardless of how bold or big the letters.

Caregivers: what I’ve shared is just the tip of the iceberg of what you might be experiencing.  Please share the ways in which you’ve learned by your own caregiving mistakes.  I need your knowledge, and my hope is that others can benefit from your experiences as well.