Alzheimer's blog

Changing the way you look at things eases caregiver stress

By Angela Lunde October 18, 2011

Thanks to each of you for reflecting and offering comments on the sensitive issue of Alzheimer's and divorce. I think Allan captured the essence of what most of you expressed. "This is such a highly personal matter ... one size cannot possibly fit all ... be careful not to judge too harshly whatever decisions a caregiver spouse makes," he said.

Whether you see things the way John does or not, his words were eloquent: "That I might take a companion, even as a lover maybe, in no way lessens or impugns the devotion and commitment I feel to her (my wife with Alzheimer's) ... Indeed, it represents a cherished endorsement of our treasured years together that I should think so highly of our companionable relationship that I might want another."

And Tom wrote, "... my wife ... is still in early stages ... I have asked her how she would feel if a relationship with someone else were to happen if and when she no longer knows who I am. She knows that I ask the question with full intention to continue to love her deeply, to stay engaged with her, and to provide for all of her needs. Understanding all of that, she has encouraged me to be open to that possibility. I don't honestly know how I feel about it ... I only know that I am glad we had this conversation."

Tom offers a powerful message about the importance of having (even tough) conversations with those we love and care for while there is still time. In addition, it's a reminder that each of us still has the opportunity to have our wishes understood around living and dying.

No matter where each of us sits on this issue, someone we love is both here and gone. The relationship has changed and will never return to the way it was. This is that ambiguous loss I mentioned in the last blog.

In a book titled "Loving Someone Who Has Dementia," author Pauline Boss, Ph.D., writes, "When there's no cure to an illness or condition, the only window for hope is to become more comfortable with ambiguity and a less than perfect relationship." She goes on to speak about how rigid thinking blocks our ability to cope. In other words, when we think we ought to do it this way, or we should feel this and not that, or there is a right and wrong choice to make, we experience excess stress.

Dr. Boss provides caregivers a way of thinking that can help reduce stress. She offers a dualistic view that encompasses a "both — and" way of thinking. Here are some examples:

  • She is both gone and still here.
  • I take care of both him and myself.
  • I am both a caregiver and a person with my own needs.
  • I both wish it was over and wish my loved one keeps on living.
  • I am both sad about my lost hopes and dreams and happy about some new hopes and dreams.

Life as I see it is full of situations that lack a clear solution or a right answer. And with dementia when the losses are ambiguous and the decisions left to caregivers have unclear or less than ideal outcomes, the process can be heart wrenching. A way to lessen stress may come when a caregiver can balance two competing ways of thinking — I am a loving spouse (and caregiver) and need time apart from my husband. The ability to replace absolute ways of seeing things with a tolerance for ambiguity (yes, it may be incredibly challenging) opens up new possibilities for hope, contentment and possibly joy.

Back to Tom's blog comment about having a discussion with his wife in the early stages of AD. He offers a reminder to all of us about the value of having our wishes understood as best we can. There are several tools available that can assist in having these conversations.

A precious gift we can offer those who love us is a better understanding of our own values, likes and dislikes, medical choices and spiritual beliefs. Two sites that can help are: www.honoringchoices.org and www.agingwithdignity.org/five-wishes.php.

"If you change the way you look at things, the things you look at change."

- Dr. Wayne Dyer

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Oct. 18, 2011