Get Me Off the Roof! It’s Freezing!!

Get Me Off the Roof!  It’s Freezing!!

It was 5:30 a.m.  on a cold January day when the phone began ringing…again.  It was my great aunt Jane who was dying of cancer and suffering from dementia.  This was her third phone call to me that morning – and each time I picked up the phone, she began sobbing and pleading with me to “unlock the door to the roof”.  She kept asking why I would do such an awful thing as it was so dark and she was freezing.  She kept begging me to come get her down.

It did not matter that Jane was lying in bed in her cozy apartment in one of the nicer neighborhoods in San Francisco.  It did not matter that she had a private caregiver sitting in a chair next to her bed.  It did not matter that I had already told her (during her previous two phone calls) that she was NOT on the roof but was, rather, safe at home in her apartment of 42 years.  Dementia had transported my dear, sweet 92 year old aunt on to her cold, dark roof in the middle of the night and nothing I said or did would convince her otherwise.

Although I am a geriatric social worker with 14 years of specialized experience working with people with dementia, it took 3 frantic phone calls from my aunt before my “clinical skills” kicked in.  The third time I picked up the phone and listened to her heartbreaking pleas for help, I responded by saying in my most confident tone, “Don’t worry, Jane.  I’m going to grab your fur coat and head right over to bring you down.”  I then hung up the phone, rolled over, and waited with bated breath.  The phone did not ring again.

At  8am, before heading to work, I nervously called my aunt.  Her caregiver answered the phone to report that she had fallen sound asleep after our last conversation and was now sitting up in bed contentedly eating some oatmeal.

As I drove to work, I was reminded, yet again, how tricky – how illogical – how cunning – is this disease we call dementia.  Even with all of my training and my years of working on the front line of dementia, I had initially tried to help my aunt by forcing her to enter “my world” – a thoroughly ineffective strategy that only increased her fear and anxiety.  “Dear Lord,” I thought to myself, “if I can’t remember how to help my own aunt, how in the world does someone with no training skills cope with caring for someone with dementia?!”

Do you have a story to tell or advice to give about your experience caring for someone with dementia?  This disease causes fear, anxiety and isolation in caregivers and I am hoping the stories shared on this blog will be both informative and supportive to those struggling to keep their sanity and sense of humor in spite of the challenges of this disease.

-April, 2013