Thursday, August 10, 2017

Sad or a relief?

Music therapy has long been touted as something very beneficial to dementia patients whether it's listening to their favorite songs from their youth to, in Glen Campbell's case, playing it for as long as humanly possible.  A factor that according to Glen's doctors, allowed him to plateau in the degradation of his faculties far longer than most patients with mild to moderate dementia.  This seems like such a small thing in the grand scheme of things but it literally costs nothing if you already have the songs on hand and a device on which to play them.  If you don't, believe me when I tell you that you will regret it when the decline comes faster than you could've imagined because you didn't do something as simple as have them listen to music every day.

When the news came of Glen's passing, I saw a flood of social media posts with sad faces, RIP's or even some who obviously didn't know what he had said: "He looked good until the end."  As someone with the most important family member to her suffering from dementia, the first thing I said out loud when I read that was "aww, Glen Campbell died...thank God...he's free."

It's a sentiment that is echoed by many not only going through dementia/Alzheimer's but those who have witnessed a family member or friend go through any devastating disease that has robbed them of who they are.  The kind of disease that is so powerful and alters them so much at the end that unfortunately for those in the thick of their lives becomes the more dominant memory of them.  This is part of the reason, I believe, that my grandma told me not to visit her anymore if she didn't know me.  This disease terrified her to the point of such absolute denial that nothing about it could be spoken because acknowledging it meant our current situation was her fate.  I understand her fear...it is a fear I now live with every time I find myself searching for a word or wondering why I walked into a room.  It's the stuff of memes for most middle agers and the stuff of terror for those who may have a family disposition.

(Stuff like this used to make me laugh....now?  Not so much.)

You get to a point in a disease where it kills you to see the person suffering, even if in our case, they may not know they are suffering.  I hope that the disease does truly take away her entire awareness of all things she knew before.  Because the thing that wakes me up sobbing at night is thinking she's trapped inside herself, fully aware of what's going on and never able to communicate it.  Imagine that for a moment...knowing you're in pain and can't ask for medicine, knowing you have to go to the bathroom but can't tell anyone, knowing you're hungry but can't ask anyone for food.  Imagine seeing the faces of your family and not knowing them but your heart knows they're important but don't know why... and what does important mean?

Worst. Disease. Ever.

So yes, when I hear of someone like Glen or a friend's grandma who recently passed away from this, the first thing I think of is relief.  (Which was echoed by my friend)  Relief for the person suffering who is fully restored in their new life and feels all of the love they didn't recognize in the end.  Relief for the family who is likely irrevocably changed in ways they didn't expect and may not be able to find their way back before the glue of their family passed.  Of course, we don't want the person gone. You love them.  They are a huge part of your life and maybe even who you are and you can't imagine your life without them.  But there comes a time in health situations where peace for the person becomes the prayer at night and you make peace that your mutual love for each other transcends their ailing physical body being here and suffering.

It is spoken in hushed tones if ever spoken at all, with an immediate shame but comes from a place of deep, intense love.  While it sounds horrifying to some, that reaction shows that they have not been touched by a disease that does something that horrible to someone and you almost feel envious of their naivety.  You wouldn't wish them knowing what point you have to get to with a loved one to type those words.  So "judge not..." and all that jazz.

While I know Glen's family or maybe even yours if you're suffering from a recent death relating to dementia, is going through an immense sadness,  it is important to not feel guilty if you feel some relief.  It in no way says that you wished them dead!  It says they meant enough to you to wish them peace and to wish their suffering come to an end.  Remember the good times, the laughter and the things that made them uniquely them.  (My grandma had a few words she always mispronounced no matter how many times we tried to correct her.  We all would look at each other and try not to laugh. We weren't laughing at her but it was so cute that you couldn't help but smile.)

They would want us to remember them for the life they lived, not the way they died.

Have you ever felt relief over the passing of a loved one?  (Yes, pets count if you haven't gone through disease with a person.)


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6 comments:

  1. I had no idea Glen's family was doing that for him but it is great that they did. Makes me even more perturbed that we could not get our family on-board with such a simple task. Anyone feeling any guilt about wanting someone to be free of pain, or worse, from any disease need only think about the fact that we do the same merciful things for animals. Our instinct as humans is to put any suffering animal out of its misery if we can. So I think it's only natural to feel the same way when we see especially loved ones either suffering or in a state of dementia but the difference is that society runs counter to this instinct when it comes to humans. I fail to understand why that is but it does seem like things are changing for the better. Talking about it, like you are here, is one of the ways we change things for the better though.

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  2. So well-said. I couldn't agree more. I have been following Glen's journey because I've loved him since I first heard his voice. We even saw him on his farewell tour and I will cherish that memory forever. His daughter had to help him with the words and you could just feel love. I know music helped him so much. I am glad he's free. My family went through the same feelings when my Mom got sick with cancer. In the end, all you want is for their suffering to end. The love never ends, it just gets stronger. God bless everyone dealing with this in their life....

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  3. I've never commented before, but yes I have felt relief when someone passed. My mom was young, only 59. However, she suffered many years was sickness that can't be labeled. It's been almost 8 yrs. I miss her like crazy but wouldn't want her here suffering like she was either.

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  4. So well said. Yes when my mother passed (it took 11 years-as she was diagnosed at and early age of 59) it was such a relief. Sad but a relief and I still feel rather guilty saying that out loud.

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  5. I understand what you are saying. Of course we are sad to lose our loved ones, but sometimes they are lost to us long before they pass.

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  6. I was grateful that my loved one's passing ended her horrendous suffering. It came much faster than we realized it would, so there wasn't the time to prepare as much as I had hoped, and we never did get to say our goodbyes or have those final moments, and I carry a lot of regret about that. Her friends have told me it was probably a blessing they didn't see her in that condition because that's not who they remember, and they are right. I am still very much haunted by her deterioration, along with the final moments, along with the coroner, and along with the body bag being zipped as my last memory. I had no idea then the price I would pay emotionally being a part of all of it, but I can say without a doubt that I'm glad I was there. It was nothing, absolutely nothing, compared to what she lived with on a daily basis. One of her friends kept protesting and telling me I didn't need to be in the room -- and insisted I shouldn't be -- because "she would understand." Nope, not okay with me. She had the courage to face this disease the likes of which I've never imagined possible, so I needed the courage to face it with her. She was there for the beginning of my life so I felt I should be there for the end of hers. Do I wish I had had support there those last couple of days, and in the room, and when the coroner was gone and the oxygen machine was turned out and the house was so eerily quiet? 100%. But that wasn't my reality and I had no choice but to accept it quickly and do what needed to be done. To know that her suffering came to an abrupt end is the ONLY thing that kept me from completely falling apart. I was so thankful that the struggle was over for her and she could finally rest.

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