It Never Rained on My Parade

Earlier this week, my family admitted my mother, who has frontotemporal dementia, to a long-term care facility. This piece describes our struggle with the disease and its progression.

Yesterday, my heart, crisscrossed with scars from prior hurts, broke again.   My brother, his wife and I moved our mother into the memory-care unit of a long-term nursing care facility.  We like that term more than “nursing home.”  Tears rolled down our faces during the intake process.  I soothed my feelings of sadness and guilt by making sure my mother had a colorful robe, a soft bath mat and lots of socks.  My brother installed her TV and bought her a Queen CD.  And we cried.  All of us cried.

My mother is only 64 and in the late stages of frontotemporal dementia (“FTD”), a rare disorder that is distinguished by its early onset and its impact on the behavior of those who are affected.

According to the description provided by the Mayo Clinic, “people with frontotemporal dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally indifferent.”  The Association for Frontotemporal Degeneration, an organization dedicated to supporting families coping with FTD and advancing research into treatment and a cure, gives a more detailed description that provides additional texture on the difficulties that FTD can present for family members:

Behavioral changes are typically seen as changes in personality, emotional blunting or loss of empathy that result in increasingly inappropriate social behavior. People gradually become less involved in routine daily activities and withdraw emotionally from others . . . . [T]he patient displays little insight into how inappropriate his or her behavior is, and little or no concern for its effect on other people, including family and friends.

It is always hard to lose a parent, but certainly there are no pulled-punches on the FTD route.  Emotional blunting.  Loss of empathy.  Little or no concern for the impact of their behavior on other people, including family and friends.  These aren’t descriptors that are pleasant to think of in conjunction with our parents.

Sometimes it is hard to imagine that the person who currently inhabits my mother’s body is my mother.  This person yells obscenities on my brother’s front porch.  When she lived with me for three months in 2013, she called me “slave” and we had many conversations about why she couldn’t hit me.  She told my daughter, whom she had always spoiled and loved to distraction, that she was a “stupid loser.”

She can’t live with my brother.  She can’t live with me.  We tried both options and it was emotionally overwhelming, financially draining and harmful to our children.  Yesterday’s move was a good decision; the right thing to do; the only reasonable step.  But, still I sobbed when she asked me, “You aren’t going to leave me there, are you?”  I just kept saying, “Mommy, we tried.  We tried so hard.  No one could have tried harder.  We just don’t have any other choice.”

And, yes, we are at the end of the line insofar as choices.  But, even while my heart is being torn in half, I am angry.

I am angry because she always had a hard life.

She was one of eleven children; only my mother and one of her sisters graduated from high school.  She got married when she was sixteen and endured many years of a physically abusively relationship.  More than once before she took me to Girl Scouts or some other event, I helped her camouflage a black eye with make-up.  She deserved to have the final chapter of her life filled with comfort and rainbows.  But as Clint Eastwood tells Gene Hackman in Unforgiven, “Deserve’s got nothin’ to do with it.”  Clearly, Clint was right.

I am angry because she had so much to give.

She went back to college when she was 36-years-old and earned her bachelor’s degree by the time she was 42.  Eventually, she became certified as a Licensed Clinical Social Worker.  She was a social worker in eastern Kentucky for many years.  Then, she was the director of a battered women’s shelter in my hometown.  Later, she worked with veterans in West Virginia and eastern Kentucky.  She cared so much about “her veterans.”  She would move mountains to help them receive benefits they were entitled to receive.  I remember visiting her around Christmas and seeing the scores of gifts that they had brought to her:  apple butter, homemade whiskey, woodcrafts.  These gifts demonstrated the affection they felt for her because of her kindness and advocacy skills.

I am angry because I didn’t figure out the extent of the problem sooner.

I should have known something was wrong when, at 60, she was fired for poor performance from her job working with veterans.  I should have known something was wrong when I saw emails with abusive language that she had sent to a friend.

I knew something was wrong when I went to her house and it was a filthy mess of garbage, dirty dishes and needles (she is diabetic).  I tried to talk to her about it then, but she only got angry.  I encouraged her to see a doctor, my brother encouraged her to think about an assisted-living facility, but she was adamant and eventually we let it go.

There was no denying that something was wrong when she was in a car accident in December 2012.  Thankfully no one was hurt, but because she acted confused and combative, she was arrested for DUI (she rarely consumed alcohol and a urine test confirmed that she had not been drinking), resisting arrest and menacing.  She couldn’t remember my brother’s phone number so she spent the night in jail.  Because ignorance about dementia is prevalent in the criminal justice system, it has taken almost a year and a half to establish that she is not competent to be tried on these charges.  A year and a half.  I love my home state; I particularly love eastern Kentucky.  But a year and a half to drop these charges when another Kentucky court found her completely incompetent in a guardianship proceeding?

I am just angry.  And I’m so very sad.  And I wish I had my mother to comfort me.

She won’t ever be able to make fried apple pies again.  She won’t shop for clothes for her granddaughters.  She won’t be able to ensure that an overlooked veteran receives the benefits to which he or she is entitled.

When we walked to my car yesterday to drive to the memory-care facility, it was raining.  In addition to the other symptoms, my mother’s language is often childlike.  She commented on the rain by saying, “You had better run to the car Kimberley Michele or it is going to rain on your parade.”  I responded, “I think it already has rained on my parade.”  She thought for a minute and then said, “I don’t think it ever rained on my parade.”

I disagree.  I think her parade was in the path of a tornado.  But, it isn’t my opinion that matters.  I hope she feels safe in her new home.  I hope she finds a way to be happy.  I hope she knows that we won’t forget about her.  I hope she knows that we tried.

Reviews

[Coyote Poetry]

Thank you for sharing the story. Hard to lose our family member to illness. Some decisions break your heart. I had to make the decision on two deaths. Hardest decision I had to make. I wish they could help people with memory loss. It takes a lot of people from us. Your last words were true. We must stay close and show love. This is all we can do.
Coyote

[Kim]

Thank you for the very kind, supportive thoughts.