The Worst Disease To Have To Watch

alzheimer

 

I found this image on Facebook this morning and thought it was time I share some of my history with you.  There is a reason I shared this image and I know exactly what it is talking about.

The first thing I would like to say is that if I make anyone upset, I do apologize.  Alzheimer’s disease is by far one of the worst diseases ever.  Not on the patient, of course, but on the family that has to watch it.  It is the unseen forces that wreak havoc on your loved one’s life in a way that you cannot even begin to understand.

My grandma, aged 18.

My grandma, aged 18.

Growing up, there were some universal truths in my life.  The first was that my grandma would always be there, standing beside me cheering me on.  The other was that she would inevitably be in a business suit, I used to think she slept in it when I was little.  The last truth was that she was bound to be laughing.  My grandmother loved to laugh more than anything else.  It used to bubble up from her toes and just burst forward.  Soon we would be in tears, laughing so hard we could hardly catch our breath.  That was Grandma.  Everyone loved her, she didn’t have a single enemy, and if you needed her she was there in a flash.  She adored her children, grandchildren, and great-grandchildren and lived for us.  We knew we were loved beyond measure and we loved her as deeply as you could love a human.  She was the warm fuzzy feeling and the voice in my head.  For better or worse, she’s my reasoning and humor.

When Grandma’s mind started to go fuzzy, we would make excuses.  She’s just getting older, she’s bound to forget what applesauce is.  She’s older, she simply cannot fill out her checks anymore.  Excuse after excuse, it’s easier to do than you’d think.  She was the rock of our family, the glue that bound us all together, and admitting that we were losing her brilliance was too hard to bear.  It was a heart attack, actually, that propelled us into the world of Alzheimer’s disease.  It wasn’t our first time with the disease but it would be the hardest.  We were a family in the trenches.  Over night it felt like we were in a war zone and we were fighting to save her.  The toll it took on all of us, I simply cannot express here.

For three years, following the heart attack, we watched the candle slowly fade and there was nothing we could do.  We watched her forget how to walk, forget our names, and stare blankly off into her own world.  We watched, helpless to stop her decent and all we could do was support her.  We could hold her hand, walk her around the halls of the nursing home, and fight fight fight the system for her.  When any of us would walk in, you could see the nurses cringe, but that was how we liked it.  It meant that despite everything, we were doing what we could.  She never went a day without visitors and that meant something to us.  It meant that we were repaying her for all those moments of our lives she was there for.  We would walk her to the duck pond, kiss her forehead, and make her giggle.  That was our life for three long years.  Was it hard on us?  Of course but I would do it again today.  If I could just kiss her nose one more time, I would go through it all again.

It’s hard with Alzheimer’s disease.  You can’t see the disease ravaging their brain and they look rather healthy.  It’s hard not to just shake them and beg them to just snap out of it.  It truly is that devastating.  The toll it took on all of us is beyond explanation.  In the years since she has passed, there’s not a day that I don’t think of her, long for her, or talk to her.  We have all been physically sick with our grief and there are large portions of the time right after she passed that I simply don’t remember (Christmas that year for one).  I do, however, take comfort in knowing that we did everything we could for her.  We were there with her and held her up when she was falling.  We fought an entire system of doctors and lazy nurses for her.  We were her biggest supporters and loudest cheering squad and I think it mattered.  I think it mattered to her and even when she forgot who were were, she knew we loved her.  She may not have known why we loved her so much but I am content in knowing that she felt loved.

I always think of the old man we would see there every single day.  He would come and stay throughout the day with his wife, who also suffered from Alzheimer’s disease.  He would walk her around and around the hallways, spoon feed her her dinners, and be at every single family event.  When she was dying, as inevitably happens in those places, he was constantly by her bed.  He would hold her hand and talk to her as if she was still perfectly fine.  You could see the toll it was taking on him but you admired his devotion to her.  That’s the love story I want.  Not the Romeo and Juliet, the lust, I want the love story that ends with him holding my hand in the darkest of days.  The devotion of an aged loved.  That’s the love story that should be written about.  Anyone can experience lust and passion, but very few people are blessed with the true unconditional love this man gave to his wife.  I think of him often and wonder where he is now.  I want to thank him for renewing my faith in the human heart and for the joy he brought us in watching his love for his wife.  It spoke to me on such a deep level that there has to be some cosmic way of him knowing that he touched so many people.

If you are dealing with this debilitating disease, please lean on those around you.  Share the burden, the heart ache, and the guilt.  It will bind your family in a way that nothing else can.  Mostly, please read the above image and know that what you’re doing matters.  They may forget everything else but the feeling of being loved, truly loved, is a universal truth.  They will know the feeling well.

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4 Comments

  1. I’m sorry you and your family had to go through that. Your beautifully written piece here is a tribute to your grandma and your love and support for her. I must admit I teared up at the bit with the old man coming to visit his wife. Thank you for sharing.

    • You’re very welcome. It was definitely a hard piece to write.

  2. Having been through this personally as a caregiver for my mom, I can identify strongly with your post. I’ve always said that there is no way anyone can truly understand the day-in-day-out lives of those of us caring for and watching the ones we love go through the devastation of these diseases.

    • It is one of the most heart wrenching things I have ever witnessed in my life. It’s just devastating. I take comfort in the fact that Grandma knew she was loved and that’s the most I can get from it. We actually went through it twice. Once with my Grandma’s sister and then with her. If her brother had not gotten ill from a surgery, we’re almost certain that he had the early stages of it as well. I am just praying that they come up with some form of treatment before I get to that age, I can’t even imagine my son having to go through it with me. I wouldn’t want him to.

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