“Eventually, we had to spoonfeed, groom and dress him ourselves”
By Sohema Rehan | Life Style | Published 15 years ago
A caregiver describes the ordeal of his fathers’ decline due to Alzheimer’s.*
Q: When did you first realise that your father needed medical attention?
A: In retrospect, early in the illness, he became less energetic and spontaneous. Though he exhibited minor memory loss and mood swings, and was slow to learn and react, we attributed it to mood swings. But then he became markedly withdrawn, started avoiding people and new places and preferred the familiar. He became confused to the extent that he started having difficulty performing routine tasks. He became very angry and frustrated and was eventually fired from his job.
Q: What reasons did his employers give for letting him go?
A: They complained he was having serious trouble communicating and understanding written material, difficulty in organising and planning, and exercised poor judgment. Reading and writing was becoming difficult for him.
Q: How did he cope with that?
A: It was a downhill journey. Initially, he could perform simple tasks independently, but needed assistance with more complicated activities. He started forgetting recent events and personal history, and became disoriented and disconnected from reality. Memories of the distant past became confused with the present, and it was clear that he could not comprehend the current situation, date or time. He had trouble recognising familiar people. I saw my mother break down when he started addressing her as his own mother and at one point cried with tears at her feet, begging for forgiveness and atonement of sins.
He had severe speech problems, and like my two-year-old, started inventing words. At times I felt he was aware of this loss of control, and became more depressed, irritable, restless and, at times, apathetic and withdrawn. There were major sleep disturbances and we had to eventually spoonfeed, groom and dress him ourselves. We had to keep a constant vigil because we felt he was no longer safe alone and would wander if unattended. In about eight years, he deteriorated to complete disability. He eventually lost the ability to feed himself, speak, recognise people and control bodily functions, such as his bowel and bladder movements. His memory became virtually non-existent. He slept very often and grunting or moaning was common. He required constant care. On account of his weakened physical state, he became vulnerable to other illnesses, skin infections, and respiratory problems, particularly because he was unable to move around. He stayed bed-ridden for about four years and eventually passed away but his death was very slow and painful.
Q: As a family, how did you and your siblings cope?
A: It was devastatingly demanding. We could not afford private medical care, and combined with the emotional trauma of seeing our father reduced to a state of the living dead, it was plainly unbearable. It eventually got to a point when we would all voice our inner prayers to God to take his pain away and that could only be possible in his death.
*The caregiver interviewed here asked not to be named in order to protect the privacy of his family.
This interview is part of a larger article, Death by Destruction.