One of our residents, Meryl, is in hospice, again. The woman is amazing. She has memory loss, delusions, disorientation. Her bones are as fragile as saltine crackers and her spine is fracturing under her slight weight. Still she has fire. Kind and helpful, she is always searching for a job to do. She has bounced back from the brink again and again. She will appear to be done for and the next thing you know she is helping make the bed, sort socks, clear the dishes.
This time they think it’s her heart. Her granddaughter, Elle, is a nurse. She is tall and willowy whereas Meryl is tiny and childlike in her stature.
As she declines, Elle is attentive and present in Meryl’s care. I expect these things from her. What I did not expect was to be choking back tears as I walk past Meryl’s room and see them both tucked in bed together. A small blessing in her decline is Meryl’s persistent belief that her children and granddaughter sacked her house and sold it behind her back has dissapated, like a demon that has lost hold on her and has gone back into shadows. They involved her in every way possible but she does not remember. “They didn’t tell me anything!” she would claim. Even being shown photographs of her standing in front of the “For Sale” sign did not help. “That’s not my house,” she would say. The persecution fixation was so severe she would often drive her family away in tears.
The persistent belief that one’s things are being stolen.
I call this part of dementia The Thieving Mind, an outward projection of what is really being stolen, the person’s memory. Sometimes it is a house, a car, a business but more often it is toilet paper, hand lotion, purses and brushes. The Thieving Mind is quite common among dementia sufferers. It is one of the cruelest symptoms as it frightens and angers the patient and often destroys weaker bonds within a family. For those strongly connected to the patient it brings with it heaps of sorrow, guilt and frustration.
For caregivers, victims of the Thieving Mind must be carefully watched. They are their own worst enemies. In fear of having items stolen, they will hide them and forget that they did. In group settings they will take anything that resembles their items and tuck them away too. They live in a constant state of paranoia and suspicion. Anyone working with or around the patient is likely to be a suspect. Although the elderly are in danger of financial abuse, this is not the case with Meryl, she is well taken care of. I don’t believe anyone in her family would ever do her harm. They love her unconditionally.
Caregiving is both the best and the worst job. I feel needed, wanted and heroic and alternately hopeless, incompetent and petty. I see hope and joy. I also see death in a completely different way. It can take years to die. The mind can die while the body exists like a solid ghost, fragments of thought spoken repeatedly or the body may die while the mind is alive and alert free to contemplate impending deterioration and oblivion.
I have stopped wondering which one I would prefer for myself. The answer is neither. I may speak of a happy life but my silent prayers are for a peaceful death.
I wish you all the same.