Monday, February 23, 2015

I'm Not Gonna Miss You

I hope I say this correctly, and with the dignity it deserves.


Alzheimer's Disease is something I fear. I think it's a disease everyone is terrified of -- to not know who you are, where you are, or who's around you. I don't have Alzheimer's, but when I forget what I'm talking about, when I forget the names of things right in front of me, when I struggle to think of the right words ... even though I know it's because of neurological Lyme disease and can sometimes be reversed, it still scares me. It's not as simple as getting older; there's a definite difference between who I was three years ago and who I am now. Adding to the fear is I also know that people with neurological Lyme have a greater chance of getting Alzheimer's, ALS, Parkinson's, MS, and similar diseases.


The brain is an amazing thing. It's also a mysterious thing.


This year Julianne Moore won an Oscar for playing a woman with early-onset Alzheimer's in the movie "Still Alice". I read the book when it first came out, and I have to admit to crying while reading it.




In 2014, Glen Campbell's documentary "Glen Campbell...I'll Be Me" was released. His last song, written for the documentary, "I'm Not Gonna Miss You", was sung last night at the Oscars by Tim McGraw. It's a poignant, gut-wrenching song about perhaps the one good thing about Alzheimers - if you don't know who people are, you can't miss them when they're gone.



As I write that, I hope you understand I'm not trying to gloss over the agony of Alzheimers to the person afflicted with it and the family watching this tragedy unfold. I've listened to the song several times, read the lyrics, and this is the part that hits me the hardest:


You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna miss you
Not gonna miss you


I write journals for my men -- one for my son, and one for my husband. I don't write every night, but I write about things I remember so I don't forget later. Things they did that day that made me happy, things we've done together that I hope I'll always be privileged to remember. There have been times in my life when I thought it would be better to end it. Lately, I've had some really good days, days that make me think my fight with Lyme is over ... and then I wake up and cry when I stand, grit my teeth until I get Zack to school, and come home to fall apart a bit.


Then I take a deep breath and I write. I keep on. I can't quit. I may want to, heaven knows. I hate the rollercoaster life my family has to deal with; I hate being a burden (even when they say I'm not); I hate losing time.




But I love too many people. And I love my life to much. I don't know what will happen but that's part of the thrill, and part of the fear, too. But I've been given this life and I'm going to see it through to the end.


I respect people like Glen Campbell and Alice Genova. I respect how they're brought attention to Alzheimer's and to the people whose names we don't know and the people who care for them.


If you are interested in learning more, are caring for someone with Alzheimer's Disease, or would like to make a difference, please take a look at http://www.alz.org/ . It's not just an "old person's disease"; it can affect people in their 40's and 50's. If you're interested in joining Heather and my Art of Awareness Blog Hop, the color for Alzheimer's Disease awareness is purple. You can learn more about the hop here and here.

Your bead can include any word or name, and a customized awareness ribbon stamped on the back.


I hope I've said what I meant to say (today isn't a "good brain" day, and it's one of the reasons why I don't blog nearly as often). I hope it's understood that the more people know, the more compassion can be shown, and even more importantly, a cure can be found. It's out there.


Someone just has to find it.



Lori Anderson creates jewelry and bead kits as well as collaborative mixed media art with her son, Zack. Visit her shops by clicking on the right side bar of this blog (please and thank you!). She is also the creator of the Bead Soup Blog Party® and author of the book "Bead Soup" via Kalmbach Publishing.

12 comments:

  1. I have a friend taking care of 2 parents with A. It is dreadful. Losing my mind is my biggest fear. Many family members have mental illness in my gene pool.


    Big hugs and hang in!

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  2. Alzheimer's is one of those diseases that scares the you-know-what out of me! I had a close friend-a retired MSGT in the USMC- who received the dreaded diagnosis of early onset Alzheimer's, married to a fellow retired marine, they had one child. He was fiercely independent. When he received his diagnosis, he hopped on his Harley, drove to Skyline Drive in the ShenandoahMountains, and killed himself. No note. He was 50. This was 10 years ago,and I still grieve for him and his family. He did not want to be a burden. It is a disease that remains under-funded, research-wise. I cannot read that book or see the movie...I just cannot. I cried listening to Tim McGraw last night.

    Powerful post you wrote today...and necessary, too. Thank you.

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  3. I think it's very well written and very heartfelt. I am very lucky in that the majority of the people I have lost were not affected by Alzheimer's. I try not to read books or watch movies that make me cry so I probably will not jump on the book but I do know a number of people who've dealt with parents or grandparents who have suffered from this and, in some ways, I think the lyrics are very true.

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  4. Wonderfully written and eloquent post, Lori.

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  5. Thank you, Lori. This was powerful.

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  6. I think that you were well-spoken, Miss Lori. Alzheimer's is a bitch. You lose your parent many times before the end of their life with this, a little more each time you see them. They slip away and become like a faded photograph, the edges are still there and you can just make out their outline, but there is no life behind the eyes and they become a hollow shell. You know my mom has Alzheimer's. She was diagnosed about 9 years ago when she was just 60, but we all suspected something prior to that. What if she had been diagnosed earlier? Would that have put her on treatments that would have prolonged where she stands now? We placed mom in a care center almost a year ago. I always say that it is where she needs to be, every day is a new day. She is well-fed, she is safe, there are activities and people around all the time. I go to visit almost every Friday, and I have started sharing art and craft with the residents, once a month. They really look forward to it. My mom, however, really has no clue about what I am doing. But she still seems to know that I am someone to her, even if she has no words (although last Friday she actually said a complete sentence to me, something I haven't heard in about a year an a half - "Wow, those are beautiful!" in response to seeing my pewter Danskos. She was a shoe-hound... I find this rather funny!), she does hug me and kiss me. But other residents, who are far less mobile, have much sharper minds. A whole table of ladies have decided that they should adopt me and I am adopting them. I am doing all I can for this community, this population of sufferers, these caregivers. I have a book I put out last year, 30 Words: 2014 and for every 50 copies I sell I am donating $500 to Alz.org. I haven't sold 50 yet, but I hope soon. The Oscars has brought a lot of attention to this disease and I hope that it will continue. I have already lost my mother, but my biggest fear is how many more good years I have left. Thank you for sharing this, and I think your hop is a wonderful idea, it will be really great to see how everyone shares their causes. That picture of you smiling is one that I think is important for your family to remember. Keep on smiling, Miss Lori. Enjoy the day. Erin

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  7. ah, my sweet. as always, you get to the bone. you are brilliant, a wordsmith, and oh, so brave. bravery doesn't mean you're not scared; it means you embrace the terror and keep doing what you're meant to do. you, my friend, do it. love you.

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  8. Very powerful post Lori. Thanks for sharing!

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  9. I too was touched by Glen's song. My Dad had Alzheimer's. When he was in his 80's he could still remember how long a board he had cut for a high school project was. It was so hard to see him fade away from us. Thanx for your caring post.

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  10. Wonderfully written! I agree, those people fade and it's one of the hardest things to watch this with nothing you can do. Enjoy the good days, Lori! :)

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  11. Very powerful! Been there with my Dad (may he rest in peace). It is scary to think of the genetics. Praying for a cure! Hope you are cured, too! Thank you for sharing your beautiful writings and God bless you, Lori.

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  12. Jackie Locantore12:06 PM

    I lost my Wonderful, creative mom to Alzheimer's. The one thing that stuck with me was this - they are never gone! They are still in there somewhere, they have just lost the ability to know it and say it. The last time I saw my mom, after a 3 year struggle, she reached up and brushed the hair out of my eyes, just like she always had. I knew that she knew me. She had reached out and touched me one last time. I will always treasure that moment. For those of you with loved ones suffering through this, read to them, talk to them, hug them, and SING TO THEM! Music will reach places that mere words cannot.

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