46: The Hardest Day

46: The Hardest Day

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

The Hardest Day

You have to leave the city of your comfort and go into the wilderness of your intuition. What you’ll discover will be wonderful. What you’ll discover is yourself.

~Alan Alda

On a spring morning in April 2001, I sat in the doctor’s reception room anxiously waiting for her to emerge with my husband after two intense days of testing. She asked me to speak to her privately in her office and said, “Mrs. Henley, I am so sorry to have to tell you, but your husband has Alzheimer’s disease.” Then she brought Mike in and went over her findings with him as well. The fear I’d had for months was true, but how could this happen? Mike was only thirty-six years old.

Back in the car, in tears, I discussed our situation with Mike. “How are the kids going to handle this?” he asked. Courtney and Brandon were only nine and seven years old, respectively. Most adults don’t understand this disease. How were we to expect our children would?

“It’s okay to put me in a nursing home,” was Mike’s second comment. Then he added, “I want you to remarry.”

Part of me felt like I was living in an alternate universe, not knowing what to say or do. How were the kids going to handle this? Without him working, would I lose the house? We struggled for years on two salaries; how could I survive on one?

Alzheimer’s disease had always been a fear lurking in the back of my mind since Mike’s mom had been diagnosed in 1985 at age forty-five. Her diagnosis came as a shock to the family, because no one had had it before her.

We didn’t know at the time that she had familial Alzheimer’s and passed to each of her children a fifty percent chance of inheriting the gene. When Mike said I had his permission to put him in a nursing home, it was based on his own mother’s struggle, which he dealt with when he was nineteen. His mom had spent the seven years after diagnosis in a nursing home and passed away at age fifty-two.

I thought this was the absolute hardest day of our lives. So many questions and fears ran through my mind and the path ahead looked bleak. Many friends and family disappeared from our lives, but those who stuck around were nothing short of angelic. Their love, support, and help were simply miraculous.

At the end of the day, it was my faith in God and all he had planned for me that kept me going. I am proud to say that my children and I cared for Mike at home for the eleven years he struggled through this disease. It was definitely not easy, but it’s something I would never change. My children were active co-caregivers, and I couldn’t be more proud of them. Mike passed away at home on February 28, 2012, at age forty-seven.

The Hardest Day

I thought the day he received the diagnosis would be the hardest.

Then I realized it would be the day we had to tell our children.

Little did I know that this disease would bring many more “hardest” days.

I’m still not sure on whom it was harder —

my handsome, lovable, generous thirty-six-year-old husband,

The man who adored his son and daughter more than life itself,

knowing he would never see them grow up to be the most amazing adults.

The man who had already lost his mom to the disease,

yet who accepted his fate with grace.

My hero, who lost his voice way too soon

who endured countless hospitalizations from an illness that ravaged his body and mind.

Or was it harder on me —

His wife of thirteen years and his full-time caregiver,

As I watched my soul mate engulfed in a disease that showed no mercy?

My heart broke with each forgotten thought, each unfinished sentence,

and when his frustration would grow into an act of agitation.

I cried each night as I held his hand while he slept beside me,

wondering if he knew it was me who was with him.

I mourned my husband each and every day

I mourned all we had hoped we would have and all that Alzheimer’s disease took from us.

Sadder than all of this —

I feel it was hardest on our children.

Imagine being seven and nine years old and being told your dad was going to forget you,

even though he loved you very much.

Imagine the fear of seeing your kind-hearted, fun-loving dad

become so agitated that he put his fist through a wall.

Imagine what it was like to feed your father

when you were only thirteen and he was forty.

Picture being a child and having the one person you loved and looked up to most in the world

ripped away from you, day by day, to a disease too horrific to imagine.

There are too many hardest days when dealing with Alzheimer’s disease.

The day they forget who you are

The day their voice goes silent

The day they can no longer walk

The day they become incontinent

The day they can’t feed themselves

The day the bedsores start

The day they start to choke

And the day they lose the battle.

Rest peacefully Mike — we love you and will never forget you.

Our hero.

~Karen M. Henley

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