It Never Rained on My Parade

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 myself 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 lists 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.  My mother wore beautiful scarves from second-hand stores.  My mother, truth be told, completed most of my fourth grade science fair project.  My mother canned thousands of jars of tomatoes.  She loved her children.  She was crazy about her grandchildren.

This person changes the words of songs to include obscene words and sings them loudly on my brother’s front porch.  When she lived with me for three months in 2013, her pet name for me was “slave” and we had many conversations about why she couldn’t hit me.  This person called my daughter a “stupid loser.”  She is often crude and mean and largely unfazed by whether her actions hurt others.

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 lived through many years of a physically abusive 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.  I recently learned that head injury and trauma are associated with an increased risk of dementia.  It is impossible to know if there is a specific link between her dementia and the years of abuse that she endured.  Really, I don’t think I want to know.

Regardless, she deserved more than this.  She deserved to have the final chapter of her life filled with comfort and rainbows.  But, as Clint Eastwood tells Gene Hackman in the movie 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 domestic violence 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 syringes that she used to inject insulin.  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 make fried apple pies again.  She won’t shop for clothes for her granddaughters.  She won’t 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.

  22 comments for “It Never Rained on My Parade

  1. April 16, 2014 at 4:38 pm

    How moving I have just started my own blog on Mums journey through this terrible illness hard isn’t it? I work on a dementia unit so have insight into it but still so terribly hard when it’s your own Mum x

    • April 16, 2014 at 4:44 pm

      Thank you for the encouraging words. All the best to you , your mother and all of your family.

  2. April 16, 2014 at 5:16 pm

    Oh Kim, words fail at times like these. So sorry for you and your Mom. She was a lovely lady and you are a wonderful reflection of her. You will all be in my thoughts. Hugs to you

    • April 16, 2014 at 6:58 pm

      Many thanks, my friend. It would be great to connect with you sometime soon.

  3. April 16, 2014 at 7:32 pm

    I’m sorry you have this to deal with, my friend. I have always appreciated and cherished my mother and can’t imagine your pain. ( My mother would gladly welcome you in to her home as she does us. )
    I will be thinking of you and Ansley. Love you sister.

    • April 16, 2014 at 7:35 pm

      Thanks for your loving words, my good friend. But then, you have always have been a good friend. I meant to call you on your question – but things have been kind of crazy. Love you.

  4. virginia etherton
    April 16, 2014 at 11:30 pm

    This was hard for me to read because of all the suffering all of you are living. and because of all the suffering that was lived during my mother’s dementia – Alzheimer’s
    So much pain and love expressed with every
    carefully word you used.
    I tell you, there will be light that will shine through this dark journey. Love.

    You need to send this piece to Maria. Shriver.
    shriverreport.org

    • April 17, 2014 at 2:07 am

      As I hope I have communicated to you, JM and I have always appreciated your love and support. I shared the piece with the Shriver Report (many thanks for the suggestion) and a number of other organizations. Much love to you.

  5. Neil
    April 17, 2014 at 1:02 am

    How beautifully presented. Always remember and keep in your heart the good times and the person that your mother really was.

    • April 17, 2014 at 2:09 am

      Thank you for the kind words and good advice, Neil. You know, even now we see parts of the “old Faye” peeking through sometimes. And it is a gift.

  6. Elaine
    April 17, 2014 at 1:39 am

    Kim, Such a difficult time that you continue to handle with grace, openness and love. You remain in my thoughts and prayers.

    • April 17, 2014 at 2:09 am

      Thanks for the kind words and thoughts, Elaine. You are a good friend.

  7. Hedy
    April 17, 2014 at 2:07 pm

    Kim, I shall always remember the strength of your mother during the times we worked together. Please let me share that, most often, when a person moves to an extended care facility, the surroundings allow that person to return to being an individual. No longer do they fit a role but must seek, with all her current in-capacities, new role behaviors. These cannot be judged by previous ‘appropriate’ behaviors. The person is accepted for themselves, as they are now. (Pardon me while I take out the snake that my big tom cat just brought in to show me)Then watch what happens over time.

    • April 18, 2014 at 1:01 pm

      Thanks so much for your kind words, Hedy. (And good luck with the snake!)

  8. April 17, 2014 at 4:51 pm

    Beautiful words, so true. FTD is insidious it not only destroys our loved ones, but ravages families. Thank you for sharing.your story.
    http://www.caringbridge.org/visit/johnjaycox

    Lorrie

    • April 18, 2014 at 1:02 pm

      Thank you for your kind words, Lorrie. Indeed, a horrible disease.

  9. Wrndy
    April 18, 2014 at 12:18 am

    I am so sorry to read about this and all your family has been through. Yes, it certainly sounds like your mom has had more than her share of hard times. But reading this I rejoiced in all she has accomplished with so much against her. First high school, then a college degree, her work with battered women and veterans. Look how many people she has touched and helped…and even with this, through your writing, she is bringing this horrible and devastating disorder into the light to to help educate all of us. I found with my mom, who suffered from Parkinson’s, there were times I felt exactly the same as you. Sad, mad, broken hearted. After it was all said and done at the end of the day I would take 10 minutes privately and only allow myself to remember the good times. And sometimes I even found myself having private little conversations all by myself with her. It worked as a happy therapy for me to know I had at least that time every day to just remember the good,
    I totally sympathize with your feelings about the care facility…I had been through that with my grandparents. But look at the wonderful, caring, loving children she brought into this world who love her so much to try so hard for so long to take care of her in their homes. God bless you all and thank you for sharing your story and information about FTD.

    • April 18, 2014 at 1:06 pm

      Thank you so, so much for such a thoughtful post. I very much appreciate your kindness and advice.

  10. Leisa
    April 18, 2014 at 12:25 am

    My prayers go out to you, your mom and your entire family.

    • April 18, 2014 at 1:03 pm

      Thank you so much, Leisa.

  11. Emily Saville
    April 20, 2014 at 7:26 pm

    I hope that your blog, which is so beautifully written, will be submitted for publication somewhere…in your spare time…when you run out of things to do. You have a gift for writing and sharing the heartbreak of FTD, and losing your mom has a growing audience. But I also hope you’ll write other pieces, because you’re very talented. Take good care of yourself.

    • April 20, 2014 at 7:40 pm

      Emily, thank you, thank you, for the encouraging words. I came back to CA on Friday and was feeling sad today about being so far away from my mother and brother. And, then I received this kind gift from you. I can’t tell you how much I appreciate your taking the time to write. You take care as well.

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