Thanksgiving: Am I Thankful My Mom Survived a Stroke?

On April 20th my 85-year old mother suffered a massive stroke, the type of stroke which, we were later told by the hospital staff, they only see once a year or so. As her healthcare power of attorney I knew what she wanted so we approved aggressive measures to remove the clot in her brain. The measures were not successful.

In the 1960's my mother started college as I was starting kindergarten. She went on to complete an undergraduate degree, a Master's degree and a Ph.D. She taught at a university, authored scholarly books, dove into her family geneaology and was active in her community and church. She also founded a non-profit for children in Ukraine. When she had the stroke she had been living alone for almost 40 years.

Now she is hemiplegic, incontinent, and is completely dependent on the nursing home staff for all her needs. She cannot operate a phone or a TV, cannot read due to vision loss, cannot write legibly and experiences increasingly longer periods of confusion between her moments of clarity.

I recently asked her if she suffered another stroke or went into cardiac arrest if her wishes for aggressive measures to save her life would be the same. Given the outcome of her stroke, I thought maybe she would say she'd had enough. But she said "Save me unless I'm in a vegetative state." I am not sure if I think that's determined or selfish.

As my son said "The family had a stroke." The shock and grief was overwhelming for all of us. I went from thinking of myself as no longer dependent on my mother to realizing how desperately I missed our lengthy phone calls and how many times I was on the verge of picking up the phone to call her for her affirmation and advice before I remembered she wasn't that person any more.

Paying her bills, I am stunned by the cost of the Emergency Room, the surgery, the Intensive Care Unit, the Long Term Acute Care Unit, Inpatient Rehabilitation, Home Health, and now the Skilled Nursing Home. I've been in healthcare for 30+ years, and still I am stunned by the cost of her stroke. Should someone her age consume these resources when the prognosis is so poor? Is it my place to even question this - what kind of daughter am I anyway?

When I come to spend the day with her at the nursing home, we take a nap in the afternoons - she in her bed and me in the recliner we brought from her home but she cannot sit in without falling out. As we wait for sleep to come, we have some amazing talks - why she has always been an overachiever, a boyfriend she wonders if she should have married, how hard it has been for her to accept that she has had a stroke. These are the most intimate talks I've ever had with my very private mother. As she falls asleep and begins her apnea breathing pattern, I wonder if one day she will stop breathing and no one will be there to resuscitate her, or if she will live another 10 years to the age her mother was when she died in a nursing home.

She doesn't appear to be very happy. She wants to read, and walk, and drive her car. She apologizes a lot for being cranky and complaining. She spends much of her day mixing up television and dreams and real life thinking one of her kids or grandchildren or great grandchildren is in trouble. She cries when anyone comes to see her and when they say goodbye at the end of a visit. She has little appetite so she receives supplemental nutrition through a feeding tube in her stomach that she detests. Yet she would want her life to be saved again should she have a second stroke.

I try to decide between the pain of the present state of her existence and the pain of thinking she would be better off in the next life. Shouldn't I be more thankful my mother survived a stroke?

Mary Pat Whaley is a Physician Advocate and Consultant who blogs at Manage My Practice. Her LinkedIn group of the same name, Manage My Practice, is for those interested in healthcare management.