My cousin recently posted a statement on Facebook expressing how difficult it was to grieve her mother's death while she was still alive. This struck a chord with me. Her mother, whom I call "Auntie," has Alzheimer's. The disease has progressed to a stage where safety is now the number one priority, and caregiver stress has reached a breaking point. It is time to consider placing her in a 24-hour supervised environment. I have watched a brilliant woman become unrecognizable in mind and spirit.
Ambiguous loss
I searched for a term that described the feeling of loss that my cousin was experiencing. Dr. Pauline Boss, an educator and researcher, wrote, "In the world of grief, there is a unique kind of loss that complicates grief, confuses relationships, and prevents closure. I call it 'ambiguous loss.' It lies at the root of depression, anxiety, and family conflict."1 She defines two types of ambiguous loss: physical absence and psychological presence, and psychological absence with physical presence.
The second type is experienced by caregivers in situations where a loved one has a condition like dementia or Alzheimer's. There is no resolution of grief because the person is still here physically but not mentally.2
My world is now new
What about people suffering from Alzheimer's or another condition affecting the mind? Are they grieving? I wrote a poem reflecting what I imagine might be their thoughts:
I sat by the window as I all too often do
Waiting for someone to come and then came you
Though my hearing is fading and vision impaired
I see your bright smile and know that you care.
My world is now new but seems old in some ways
And I can't remember your name on most days
All the people here are good to me, I suppose
But then again, I wonder about the "me" nobody knows.
I catch myself doing all sorts of strange things
So unlike how I imagine from sane human beings
I know I'm not stupid and fight to understand
How this could happen when I had the upper hand.
Sounds have become faint and objects are blurry
Everyone rushes around so much in a hurry
I often feel lonely and sometimes I get scared
Then I see your bright smile and know that you care.
Some people come around every now and then
They say they're my family-relatives and kin
I often doubt that they are telling me the truth
They don't look like people I know from my youth.
The days are so long and the nights even longer
I have to ask myself how I can be stronger
I have made a friend with the thing by the door
But often get lost somewhere else on the floor.
I do not know what in life I might be missing
Daily thoughts include meaningless reminiscing
I take a deep breath of the still life-giving air
Then I see your bright smile and know that you care.
Tell me your name
I called my sister's house on Christmas Day, where the family had gathered for dinner. I asked my mother to wish everyone a Merry Christmas and Happy New Year for me. At the end of our conversation she said, "I know who you are, but tell me your name so I don't mess up and tell them the wrong one of who called." My cousin and I are akin.
Jamesetta Newland, PhD, RN, FNP-BC, FAANP, DPNAP
EDITOR-IN-CHIEF [email protected]
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