Last week, one of our Texas Hospice nurses mentioned a good bit of wisdom and a couple of telling stories about dementia care. Here they are:
1) Within the day-in day-out struggle of dementia care, family caregivers often forget to interact with their loved ones. It is understandable, given the load the caregiver is carrying. But it is important for family members to move past routine and into personable interaction. When a hospice staff person engages the patient in a level of conversation, the family will often remark at how talkative and expressive their loved one becomes.
2) After the peaceful death of one of our patients who suffered from dementia, the family remarked, “I couldn’t have planned it any better.”
3) Dementia is an unpredictable disease. It surprises even the most seasoned clinical staff. One of our patients, normally inexpressive, had this conversation with our staff:
Patient: “You’re with hospice?”
Nurse: “Yes.”
Patient: “Will you stay with me?”
Nurse: “Of course I will.”
Patient: “Please don’t leave me.”
We view dementia as a scourge, and I think that view is appropriate. The disease robs us of our mental faculties, relationships, and our ability to contribute and perform. It creates new burdens in an already trying world.
From listening to our patients and those who are famous among us, such as President Reagan, I have concluded that losing our function is more difficult to accept than losing our lives.
But isn’t it like God to create beauty out of something so awful? I think these stories show a little of what wonderful experiences people live out when dementia enters their world.
Our human (sinful) nature tends to withdraw from anything uncomfortable, and perhaps few things are as painful as losing loved ones this way. Recently someone said, “My brother has sort of bailed on us…He loves Mother; he just doesn’t want to think about all this.” But when we embrace the helpless, their faces brighten. Our touch and our words often bring them hope. Adapting Victor Hugo’s phrase, to love another person is to show the face of God.