The theme of the May Alzheimer's conference in Reno was "Living Well with Dementia". Presenters throughout the day focused on this thought: life is of value and worth living, even when the mind of the individual is not as active and engaged as it was in the past. While I agree that in the early to mid-stages of Alzheimer's disease there are many moments of wonderful fun and communication when life is still lived well, having twice witnessed the end stage with my mom and sister, I struggle with this concept as death approaches. With only sporadic milliseconds of vague cognizance hemmed in by overwhelming days and weeks of vacuous stares, shrunken bodies, and lost minds, I find it hard to recognize any joy in the harrowing final stages.
"Mindfulness", being aware of your awareness and existing in the moment, was a key term. How well do you pay attention to and connect with your loved one? Are you fully there or are your thoughts racing in a hundred directions? Is it possible to put off the worries of shopping and cleaning and take a loved one on a walk "home" when you are already there or take her on a trip to a favorite picnic grounds even though it is pouring buckets? Making the choice of attending to your loved one's wishes means contentment for him, but where does that put you in your overload of responsibilities. The reward may be pleasant or it may be confusion as to why the drive coupled with the repetitive question: "When are we going home?"
Advice concentrated on being with a loved one with dementia in the moment, in her reality. Your Mom needs what she needs now and you should take care of it now, but what about other responsibilities such as Dad's appointment, the kids' recitals, and the overgrown lawn jungle? Caregivers attend to a million concerns in addition to the loved one.
Caregiver is a term to be tossed. The word 'caregiver' alludes to the idea of offering care, however, with individuals with dementia it is invaluable that the loved one is seen as a partner. "You are not the boss of me" comes to mind thinking of when someone other than a parent cares for child and s/he wants all rules pitched out the window. Again, I agree, the person with early to mid-stage Alzheimer's can still make plenty of sound decisions without advice or prodding and a care partner is a practical and viable term. But later, more direct help is required for the safety of the individual and the sanity of the one who is caring. I believe it is necessary to be a care partner until our loved one requires much more and then transition to caregiver.
To open your being to mindfulness, an improvisational mind is essential. You must be prepared to will your mind and heart to active engagement in the present moment. You must light up all of your senses and then attend to them as you serve as the care partner. While it is absolutely vital to be honest: "No, we cannot go right now because the grocery store is closed", you will also have to relinquish degrees of control. There is an all-night convenience store three blocks away and if that trip is important to a loved one's well being, then load up the car and go.
You can probably sense that I am resisting here a bit. The "old" advice was divert and dissuade. "I'm washing the dishes right now. Is it all right if we go in 5 minutes?" knowing that in 5 minutes a new desire will probably arise or that if the old wish returns, the 5 minute request can be reapplied. Or: "The store is closed but I think we have a can of vegetable soup in the pantry. Does that sound like a tasty snack?"
Neither of these responses reflects trust and collaboration, two crucial components of the care partnership, but they do resolve problems. In our support group we frequently discuss little lies and big lies, differentiating the little lies as those that help one survive the moment and big lies that are unconscionable. The little lies often prevent blow-ups and arguments while offering moments to recompose and prepare for the next request or event.
As always, the conference filled me with information as well as forced my brain to expand in new directions with insight to share.[[In-content Ad]]