I am not a patient woman, I never have been.  When I started on this journey with my husband, Tom, five years ago I had no idea what to expect.  He had been an emergency room physician, skilled at cracking chests and saving lives every day.   His disease was caught early, in most part, because of his career.  There was no room for error.  The details of what sent us on the path to diagnosis were not particularly interesting or relevant.  He did not kill someone; he did not make a medical mistake.  He simply botched a deposition as an expert witness.  What followed were gross neurologic tests, which yielded nothing, neuro-psychological testing and finally the diagnosis of Early Onset Alzheimer’s Disease.  I remember when the PET scan results came; Tom could access them himself because he was a physician.  Here we were, sitting in our office, getting ready to have dinner with another family and I fell to the floor.  I am the product of a physically abusive father and what I remember most about my childhood is the physical attributes of the rooms I was beaten in, the color of the carpet, the wallpaper and the arrangement of furniture.  Those innate coping mechanisms came roaring back, I remember laying on the floor bawling, I remember exactly where Tom was sitting, I remember the color of the potted plants outside the office door.  What I cannot tell you, or remember, is exactly how I felt.  I can surmise, at that moment, I was petrified.  I am not a girl who has ever done well with unknowns and this was a disease I knew nothing about, a disease that affected Mrs. Perry.  Mrs. Perry was my favorite Sunday School teacher from my youth.  I adored her; she had known my grandparents for over 50 years.  She was the first person I knew with dementia.  I was visiting my grandparents in Virginia, went to church and literally ran to embrace her.  She recoiled and had no I idea who I was; she had known me my whole life.  She had watched my grandparents lose their first child to Multiple Sclerosis at 19, she had known my mother since birth and now I was in college and was staring into the emptiness of a beautiful 80-year-old woman that I had loved so deeply.  This empty glare is something I have become too familiar with, it is something my young daughters cannot understand or comprehend every single day of their lives.

The first four years were fairly benign.  We traveled, we spent time as a family and we enjoyed our daughters.  I believed it was a blessing; Tom was able to spend time with our daughters when he had not otherwise planned.  Our daughters would have been teenagers before he had planned to retire.  We ended up spending time together and not all of it was pleasant.  The last year and a half has been the worst.  Tom has become so much worse.  It started with forgetting to take his pills, sleeping a lot and simply forgetting to eat.  He progressed into the stages of being very angry, mostly with me.  However, some of it has been directed at our oldest daughter.  She is the thief that has removed every pair of reading glasses.  She is the thief that steals his phone and chargers.  She has become the object of his frustration.  How do you explain this to a 13-year-old girl?  Our other daughter is the caregiver.  She is the favored.   She bears that burden.  I have looked for help, looked for resources and have found very little.

Tom and I had been having trouble prior to his diagnosis.  After, he was diagnosed and then I had no choice.  Leaving was not an example I wanted to set for my children.  However, if I had known the toll this would take on me I am not sure I would have made the same decision.  The unbearable loneliness, the moments when I am hit with utter sadness that causes me to pull off the road and cry and the overwhelming guilt that I am not doing enough.  How could I ever do enough?  I have tried and desired to do the best I can most days, there are some days when I feel like a complete failure.  The days of feeling like a failure are more frequent as Tom declines.

The portion of your book that touched me the deepest was the expression of your deepest and darkest feelings.  I have been there.  I have thought about driving my car off the road, more than once.  I have fantasized about leaving and never to return.  I have spent many, many lonely evenings sobbing alone.  Sobbing from the core of my soul.  Sobbing because I see no way out.  Sobbing because I never feel like I have enough for anyone.  Sobbing because I am damaging my children.  However, mostly sobbing for me.  I have lost who I am.  I am the last person anyone even thinks of, no one cares if I am crying my eyes out at 2 AM.  I have self-medicated myself with alcohol, it didn’t work.  I still feel the pain.  There are moments when I cannot escape the despair.  There are moments when I take the judgments from other people personally, how could I not?

At the end of the day, I am just trying to survive.  My life will never be the same.  I hope that someday I will be able to be happy.  I am hoping that once this is over, I will be able to move on.  I know that I will not miss the physical or emotional abuse.  I will be forever sad that my children will not have a father to see them graduate, get married or have children.  Their father will not be able to offer advice or lend them money to buy their first house.  I will forever be deeply saddened by what this disease has done to all of us.  It has changed me forever.

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1)  Honesty

2)  Funny

3)  Good Roots, I don’t mean hair

4)  Smart

5)  Down to Earth

6)  Pretty

7)  Reliable and dependable

 Responsible

9) Independent

10)  A Good Conversationalist

So those are his requests.  Here is my reponse as a woman.

1) Honesty, yep that is a good one.  Nobody wants to date a liar.

2)  A sense of humor cannot be underestimated.  There is nothing better than laughing with someone you love.

3)  Good Roots, not necessary,  if she is a good person.  We cannot chose our families.  Of course, good hair is a great thing, as well.

4)  Smart, the most important.  A woman who can think for themselves and think clearly is the best kind.

5)  Down to Earth????  What does that mean?  Comfortable in her own skin or a Berkinstock wearing granola eating hiker?  I’m going with comfortable in her own skin.  Willing to leave the house without makeup, willing to run to the store in sweats and hold a conversation with anybody.

6)  Pretty is overrated.  There are plenty of girls that are pretty, and have no depth.  You want depth with that beauty.  Although, getting to know someone can make them far more attractive .

7) Reliable and Dependable, no argument there.

 Responsible, no argument.

9)  Independent, every good woman worth spending anytime with is independent.

10)  Good Conversationalist, nice quality.  However, it is hard for a woman to talk to herself on a date.  You need to participate, just a little.  Untie your tongue and dive in, why does that make me laugh?  Answer cause I’m a middle school boy writing an advice column.  Anyhow, what’s the worst that could happen?  You decide you don’t like her conversation.

Just a little piece of advice, women like to hear nice things.  Most women don’t need materialistic things, they just want you to love them and be good to them.  At least any woman of any worth will be satisfied with an honest and appreciative man.

So here is what I would want if I could pick a perfect mate:

1)  Caring and Thoughtful

2)  He’d have to love my children for who they are and accept their limitations.

3)  He’d have to love to cook as I love to cook.

4)  He’d have to let me be me, write, school, etc.

5)  He’d have to love cheap beer and Goldfish.

6)  He’d have to be vulnerable, I love a vulnerable man.  I love a man who can cry and is emotive.

7)  I do not want a stoic man, there is no room in my life for a man that cannot express himself.

 He’d have to be a good listener.

9)  He’d have to love cheesy things, I love cheese.  I don’t mean food.

10)  Most of all, he’d have to love me for who I am.  Allow me to be who I am and give me space to be with my friends.

and lastly,

11)  He’d have to not give a darn about decorating or shopping.  I hate both!  I seriously hate to shop.

wait one more

12)  I am neurotic about clean floors.  I hate a spec of dirt in any crevice.  I’d rather mop on my hands and knees than have a dirty floor.

Okay, that all I have for now.  What would you want in a man or girl for that matter?

My dad has changed my life in a good way, but also has taught me a BIG lesson in life.  He was diagnosed with Early Onset Alzheimer’s Disease almost five years ago.  It has made me feel so thankful to have him in my life because I know that my time with him is going by very fast.  Sometimes, I miss the old him, but when that happens I am grateful that he is still here.  The disease has taught me to appreciate people no matter what!