Saturday, July 25, 2009

Patient/Caregiver Perspectives

My mother's journals reveal telling insights into how her mind does and does not function. Her journaling may give help to Alzheimer's caregivers whose loved ones are unable or are not inclined to put their thoughts into words. Here is an incident that occurred yesterday, first from my perspective as caregiver and then from Mom's perspective as patient:

Caregiver's perspective:
Yesterday I arranged a little lunch date for Mom, her respite care provider, and me. We ate pizza, chatted together, and Mom enjoyed the interaction. Later in the afternoon I brought Mom a snack of fresh fruit and graham crackers, and a couple of hours later I prepared and served her supper. In the evening I was tired, having shopped for groceries and prepared food for a busy weekend that includes company and a church dinner. I took Mom for a walk during which we chatted about the events of our day. I had returned to my part of the house to prepare her evening snack and sort her night meds when I heard her yelling. I went in and saw that she was was feeling neglected and irritated. "I just thought I'd let you know that whenever anyone can spend a little bit of time talking to me, I certainly would appreciate it," she said. I'm sure I displayed at least a touch of righteous anger. I told her I was busy and went out and shut the door. A few minutes later I brought her the snack and medicine and told her good night. I admit I feel the same anger once again as I write these words; a good portion of my day had been spent in acts of service for Mom and yet in the evening, she concluded that no one cared about her because she felt a stab of loneliness.

Patient's perspective (from Mom's journal entry):
I must have had a little brain glitch. Suddenly I felt need for companionship and conversation so I yelled, "Hello!" until someone came to the door. I told them what I wanted and they just stared at me a moment--turned and left.

An Alzheimer's patient loses the ability to utilize several sources of information simultaneously. Those of us whose minds are still functioning more or less normally don't realize how often we need to think about more than one aspect of a situation in order to draw an accurate conclusion. Furthermore, the dementia patient has lost confidence in his/her own ability to perform the simplest of tasks, but retains the ability to ask for help. Thus, the disease causes a cluster of symptoms that in the general population could justifiably be labeled "lazy" and "self-centered." It is up to the caregiver to recognize these behaviors as being clinical effects of the disease. When the only information the patient is able to draw upon comes from the present moment, then oftentimes those conclusions will be inaccurate.

I'm ashamed to say that in response to the situation I've shared above, I displayed irritation toward my mother. However, the curse of the forgetfulness of Alzheimer's also contains a hidden blessing, because when I returned to Mom's room a few minutes later armed with a snack and a cheerful attitude, all was well between us once again.

Scripture: "Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you" (Colossians 3:13).


  1. This is so hard. But for the grace of God, it would be impossible. Thank goodness He is on our side and has granted you such understanding.

  2. I find your honesty so touching. I pray over the words you share and that others who need them will be directed to them by the wisdom and grace of God. Thank you for your obedience in sharing--both that you do share and in what you share. The Lord be with you and strengthen you by His power.

  3. Thank you, Anonymous, for your prayer and for the blessing in the comment you made about obedience in what to share and what not to share. That's been an ongoing challenge.