Dementia Sucks

Apr 6, 2015 by

Dementia Sucks

You may know him as John, or maybe Bill. It doesn’t really matter if you call him uncle, or friend, or dad, or grandpa, you probably know that he is an incredible guy. To me he was Bapa, which evolved later in life to Papa, and he has always been my super hero.

I remember moments in my life where I’m absolutely certain he had super powers. Click To TweetHe could climb the tree in the front yard higher than it seemed that gravity would allow, while we waited breathless on the ground below. He’d quickly transport himself from the ground to the very top, balancing precariously on the delicate, slender branches, and gaze down at me, laughing at my panic. He could perform amazing acrobatics in the living room as he tried to teach me how to backward summer-salt (he did) and could chop wood and heft his axe better than I imagine Paul Bunyan could. I was in awe of his strength, his talent, and his ability to do pretty much anything I asked of him. I remember watching him throw apples farther out into the neighbor’s field than anyone else could and skip a rock across a pond as though it were weightless. He helped me catch salamanders and crawfish, build dams, make mud pies, design roads for toy cars and fences for plastic horses. He was my favorite playmate. Throughout my childhood, he was always an unbelievably strong, courageous man whom I admired and worshiped. It never dawned on me that this man who never cried, who never complained, who never showed any fear or weakness could change. It had never crossed my mind that this man, whom I idolized, could ever weaken.

For me he was truly even more than that, he stood in when my own father was absent. He was there the day my mother was helping me learn to ride my bike, running alongside until I got the hang of it, and helping to retrieve my bike when I toppled over into the grass. He taught me to play checkers ruthlessly, build a roaring campfire and use a hammer without smashing my fingers. He taught me how to skip a rock, identify deer tracks, color inside the lines. He helped with math homework, taught me to divide and helped with science fair projects. He spent countless hours one vacation as we shopped for the perfect prom dress and was there to see me off and even gave my boyfriend the required stern looks as we drove away to prom. He’d sneak candy into church in his jacket pockets, eat the last of the vegetables off my plate when grandma wasn’t looking, and always be the first one to open the cookie jar when he thought we wouldn’t get caught.

This is the man who taught me about life, about what it means to be a part of a family, about how a person can treat love as a verb. He is the one man in my life who has never let me down.  I can probably count on one hand the number of times I heard him say the words ”I love you” to me, but I never once doubted that he did. Because Papa lived his love for us, he showed it in the everyday things he did. He’d remind us all to change our oil, take note if our tires looked low, never let us leave the house without trying one of grandma’s newly baked cookies…He’s been my partner in crime, my example of what it means to be a man, and my lifetime cheerleader. I spent half my childhood tagging along after him in the garage or yard, his constant companion.

I spent a lovely week at home visiting my family last month and it reminded me that we are losing him. Slowly but surely the man that I idolized is being replaced by a man that I do not recognize and who, in turn, does not recognize me.

And it sucks.
It helps to say it out loud sometimes. To get those feelings out, even if no one is listening but me. Dementia sucks and I hate it. I hate it with every ounce of my being. I hate it to my very core. I hate it, I hate it, I hate it.

Watching this illness slowly take away his ability to be independent is not only heartbreaking, but it may be the single most difficult thing I have ever faced. He’s a natural story-teller that now struggles to find the words he needs to explain what he is thinking. He’s ambitious and curious and funny, yet can’t communicate the joke he’s trying to tell. He likes to do things his own way and enjoys being able to complete tasks by himself, and yet he cannot remember how to perform the most mundane activities, like buckling his seat belt. He easily misunderstands everyday conversation and is quick to anger as his frustrations with his limitations get the best of him.

And so, to help me just get it out. Here are the reasons why I need to shout from the rooftops that Dementia Sucks:

 

1. Because the person’s body can live on well after the mind has stopped working. It’s hard for me to come to terms with how much dementia sucks. Like, literally sucks the life right out of a person, one memory, one life skill, one broken heart at a time. The English major, writer inside of me can’t think of better words, the truth is: it just sucks. I would much rather lose him to a disease that takes him all at once, and not a disease that just leaves the shell of who he once was behind.

 

2. Because sometimes he just looks sad. It doesn’t seem like he’s in a happy place or thinking happy thoughts or even following basic conversation. He seems bored in a room full of people, as if he knows he is missing out on something but he’s not sure what it is.

 

3. Because it hurts (way more than I would like to admit) when they don’t remember who you are, even though it’s not their fault. Papa’s never been great with names. In my childhood both of my grandparents would run down the list of names before getting to me, naming me all of my aunts before they finally got it right. When calling me to set the table I remember being “Sally-Sandy-Molly” and never minding that I was usually their third try on names. It didn’t matter because they knew me. Now, it’s painful when he looks at me as though waiting for an introduction. He recognizes my face but can’t quite place to whom I belong.

 

4. Because I miss him even when he’s sitting right there, and I’m so sad my husband won’t get to know him. After this last visit I mentioned to my husband how sad it made me to see him like that, and my husband didn’t understand. He replied, “But he was great! He told jokes and he smiled a lot and seemed to have a great day.” To him, that was correct. Papa was great and seemed happy. But to me, he wasn’t himself, not the man I remember and not the man I wish my husband was getting to know. This version of my grandfather is not the real one, this is an imposter. The magic spirit of Papa is already mostly gone and I hate that growing up I totally took it for granted. Completely. And even though I knew this illness was there, that it was coming, it still all happened so fast. So fast, and it is starting to get to the point where his personality is much too quickly becoming a distant memory.

 

5. Because it’s just not fair. Its really unfair. And I hate what it is doing to someone so special to me. Human beings don’t lose their minds easily, it isn’t peaceful. We go down sniping and angry and lonely. These are not the memories I want to keep of this man.

 

6.  Because it’s just not fair.

 

papaI was reading through the mountains of old blogs on the web about Alzheimers and Dementia… everyone really has the same sentiments. No one really has any brilliant advice for dealing with the emotions that come along with this illness. Patricia over on her blog Laughter and Forgetting notes that “the families of people with Alzheimer’s go through the same grief process as anyone dealing with loss. Denial, anger, sadness, acceptance. For the person going through the dementia, I think they are going through this process all the time, every day, because they’ve forgotten that they went through all these emotions just yesterday.” That sucks. Have I mentioned this sucks? I cannot imagine what it must feel like. Is this what drowning is like? Knowing that you are slowly sinking and now being able to get your head back above water for another gulp of air? Is this what drowning is like? Knowing that you are slowly sinking and not being able to get your… Click To Tweet

As I think about how cyclic this is, and each day repeating itself. I wonder if there will be moments of clarity for him, or days when things just go well as my grandmother suffers through being his caretaker now, rather than his partner. I am particularly drawn to these parting words of Nancy Wurtzel on her blog. “Because when the next day rolls around, it all happens again and it will still suck.  Then, suddenly, there might be a bright spot.  Something shiny, uplifting, happy. I grasp onto this little slice of happy and think: Yes, I can do this. Even though it sucks.”

So we will cling to the bright spots and to each other and not take one everyday moment for granted. I know that before long he is going to forget my name. I know that my family will face countless challenges as this illness takes its toll on the man that we love. And it’s ok that he forgets…. I just don’t want to.

**My grandfather is suffering from vascular dementia. Vascular dementia is a decline in thinking skills caused by conditions that block or reduce blood flow to the brain, depriving brain cells of vital oxygen and nutrients.

 

 

Vascular Dementia and Alzheimer's |www.lovetheeveryday.com

 

 

 

15 Comments

  1. Oh my heart is just broken for you! I lost both of my Grandpas now but they passed quickly and I can’t imagine having to deal with the heartbreak every time you visit him. I have not dealt with dementia personally but I can only imagine that the deep love you give him blesses his heart. <3

    • Thanks so much Kayla. It is for sure one of the biggest mountains I’ve ever had to climb. <3

  2. So freaking hard. Dealing with it myself. It is the staring off or staring at you that is really hard for me. The loss of vibrancy as well.

    • Oh Heather, I’m so sorry. I agree, the loss of vibrancy is sometimes so shockingly different from their original demeanor. It’s just hard to process, and there is no way to prepare.

  3. My grandmother had dementia and it difficult, confusing and so sad to see her change from being a capable, independent woman to someone who was confused and frightened at times. Dementia definitely sucks.

  4. So sorry! Dementia is so hard. <3 My grandma started to have some dementia before she passed last week. Sending you lots of love.

    • Thanks so much Lisa. It’s such a drain on my family, emotionally, financially, etc. It makes my heart hurt. I’m so sorry to hear about your grandma’s passing. Hugs and prayers to you during such an emotional time!

  5. Molly,
    I have tears streaming down my cheeks as I type this. My mom is struggling with this same issue. I dread the day this woman who is so full of life who gave me birth can’t remember my name or that I am her daughter.It breaks my heart beyond anything I’ve ever experienced. It is a horrible disease and not one many people are willing to talk about. I’m sorry for your heartache and for every person who is dealing with this issue.

    • Sheila, I’m so sorry. My heart breaks for you. I hope you find strength and peace through this process. I’m not sure I can imagine how I would feel if it were my mom battling this illness. Please feel free to reach out if you need some prayer or a sounding board to rant to. <3

  6. I’m sorry that you’ve had to experience this. I can’t imagine watching someone you love suffer from dementia. Always try to remember the brighter days.

  7. Susan Waldroupe

    Molly, This is so beautiful, you said it so well, I too am having an terrible time with this, I miss him more than you know, as like you he taught me all those things and more. I also followed him everywhere he went. He is my DADDY!It breaks my heart that i have missed so much of his life, having moved away. I am going to try to get home soon. I Love you Kiddo!

  8. My great grandmother had dementia real bad, to where she was nasty to everyone and very volatile. It was so sad to see. Dementia sure does suck!

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