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I can’t imagine anything worse — lying in a bed, confused, frightened, feeling abandoned and helpless. As someone with early Alzheimer’s disease, I can't help but think about what it would be like to be a patient in a long-term care facility during the coronavirus lockdown.
Elizabeth Smith-Boivin, the Executive Director of the Alzheimer’s Association Northeastern New York, shared these comments with me about long-term care facilities during the COVID-19 lockdown:
I do not envy the position that leaders in long-term care facilities find themselves in....trying to balance their resident's physical health and safety against the emotional toll that isolation and loneliness has produced. I think the facilities that have managed this best are those that have provided not only the access, but staff to assist with virtual visits (LTC facility residents, especially those with AD, cannot manage this technology alone) and/or scheduled time for visits through the window.
As far as recommendations for families....I suggest that they explore these opportunities with facility leadership and offer to assist as needed (provide an iPad for staff use for example). I also recommend that families send their loved ones cards and letters...whenever possible, accompanied by old photos and a description or special memory created by the photo.
Family members are in the unique position of knowing what type of individual activities their loved ones enjoyed in the past. They can help promote those activities by informing staff and making items of interest available (ie: favorite books, magazines, music, DVDs).
Lastly, there is a resource: the Alzheimer's Store (alzstore.com) that sells a variety of products (including activity based items such as adult coloring books and realistic lap pets) that I have often recommended.
While I, Eugenia, am fairly cogent at 75, I find myself wondering what it would feel like to put myself in other’s shoes and to imagine how it would be to wake up and find myself alone in a medical facility not knowing where I am and why I’m there. As I often do, I have turned to poetry and writing to process my emotions and wrote this:
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MY WAKING DREAM
It’s dark. Or is it?
I can see a speck of light
under that door. That one. Over there.
Where am I? Please tell me!
I seem to be lying down.
But I can’t be certain.
I ask myself what I should do?
and then I hear myself making a noise
and I’m afraid, very afraid
And I tell myself to be brave
but then I hear something growling
a low deep growl and it’s me
making that terrible sound
and I am afraid
really afraid
and I begin to cry or is it a scream
I don’t know I don’t know
I sit up and try to remember why I am here
and it has something to do with
sick people
but I am not sick, I am worried
I am confused
and then as if a guardian angel appeared
a woman entered with a gift
and the gift was wrapped in paper and when I
opened it there it was — a photograph
and in the photograph there were two girls
who had their arms around each other
and they were smiling at me
and I knew, I knew then, I was safe, truly safe
---
I am so grateful to be social distancing at home with my husband but can’t help but think of those who are isolated in a home during this long, confusing season. I do hope that long term care facilities will continue to find creative ways to keep loved ones connected virtually, or even through a window, until the day comes when they can yet again be together and embrace, without worry.
