Insert Foot Find Love

Well. I’ve finally done it. Put my foot in my mouth and done an interview that is getting NATIONAL attention for our cause, but at the same time coming across (understandably) as a cold, uncaring, unloving and selfish woman.

I went to DC and did a fantastic job speaking for all of us at the Living with Alzheimer’s Roundtable at the National Press Club. It was emotional and hard. It was draining. Being immersed in all things Alzheimer’s really wipes you out emotionally and mentally.

Then, I went back to the Alzheimer’s Association’s office for a phone interview with someone from CNN.com. Here was my chance to REALLY share our story. Really let the world know how difficult and frustrating and lonely and scary this path we all walk can be. Not just for Younger Onset, but for all of the families struggling each day as they watch a loved one slipping away.

So, I answered her questions and did so with a lot of candor and honesty. Honesty is the best policy, right?

As I was driving the 3+ hours home, I replayed my answers and the days’ conversations with the various people I had interacted with at the roundtable. My head was full of it all. Then it hit me. Shit. I think that sentence I said was not said right. I don’t think I put it the right way. I think if that gets printed, it is not going to sound good. I think it will overshadow the purpose of the interview in the first place.

By the time I arrived home and gave hugs and kisses to the kids and Jim, the article was up. CNN.com. National. And, yes, there was my quote. Without the emotion. Without the love. Without explanation of the measures we are taking to stave off symptoms and prolong Jim’s life while he is able.  Without mention of the countless hours we have sat in doctor’s offices, the hours of driving to appointments, the hours spent on my bedroom floor in pure agony and filled with the terror of losing Jim and the kids losing their father. Crying until there was no sound left to come from the depths of my soul.

No mention of the supplements and medications Jim has taken throughout the years. There was no link to my blog so readers learn more about our story. To see that I do love Jim. That I don’t want to lose him. That I want to keep him with us as long as I can. All readers will see is that I want him to hurry up and die and get all of this over with.

So, lesson learned (I hope). When giving interviews, make sure you don’t say anything that can be written independently and come across so uncaring and cold.

I am sorry. I feel like I have let so many of you down. I know I did a great job at the roundtable. I did what I was supposed to do. I gave them emotion and tears and some of the tears were theirs. That is what I was there for. This CNN gig was an added opportunity that I feel like I blew……

Fast forward a day. What an unbelievable response.  To quote the reporter from an e-mail she sent me: Your story has touched many readers today. I’ve never seen a story receive so many supportive comments.

It has been an emotional time for me. Worry. Stress. Relief. Emotional highs and lows. Crying in front of Jim and telling him I was sorry, only to have him hug me and tell me how much he loves me and what a good job I am doing. The e-mails and messages from so many friends and strangers that are supportive and loving and full of kindness and sadness at the same time. Thank you. Really. Thank. You.

All of this being said, I will not stop talking. I encourage EVERY single person that has Alzheimer’s or other forms of dementia that are able to, please speak up. Be heard. If you are a caregiver, a care partner, a loved one, a friend; SPEAK UP!! Our voices need to be heard. We need to make Alzheimer’s something that doesn’t carry a stigma. We need to make Alzheimer’s something that doesn’t put families in financial ruin. We need to demand a cure and treatments that work! Call your Congressman/woman! Write a letter to the editor. Talk to your friends and co-workers and neighbors. There is nothing to be ashamed of by dealing with this terrible disease. But living with shame and trying to hide it and to keep this battle inside of you is not helping yourself, your loved one or others that are going through this too. Let us all have our pain and loss heard. Even if it means being misunderstood and misrepresented.  If I can do it, so can you.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (15)

15 Responses to “Insert Foot Find Love”

  1. Cia says:

    Don’t beat yourself up. You are doing an amazing job and as a fellow traveler on this journey with a loved one, I appreciate it more than you’ll ever know. Sending love and support, Cia

  2. Michele says:

    Karen, we all have that one moment where we feel we have “opened mouth and inserted foot”. I also am sole caregiver to my husband and what you have started here is pretty amazing to me!! Keep going forward!! One day we will reach a cure!!

    Michele Overcast

  3. Sara says:

    Karen: I have just read the CNN article and thought you were honest and clear. I have been reading your blog for awhile, and have a somewhat similar situation, only mine is later in life and a bit less complex. My husband is 61 and was officially diagnosed with early onset dementia a year ago. I have quit my job to be with him and I am fortunate that our daughter is grown now. I so admire your strength and courage as you go about making a good life for your children, caring for your husband ( as every responsibility shifts to your shoulders!), and being the bread winner! Thank you for speaking out with clarity, truth, and for not sugar coating this challenging journey you, and your family, are in the midst of!

  4. Lee Ann says:

    I just read the CNN interview and thought you did very well. Everybody that is in the spotlight feels the same. You are your own worst critic. Because you did great. And even tho I know you only through your blog, I was so impressed, “Oh wow. This is someone I know!” Never knew anyone on CNN before. Ya did good, kiddo.

  5. OMG Karen, I do totally understand your statement. I have actually thought that way myself! I know Curt would NOT WANT to be remembered for who he is now, he would be mortified with the current Curt. So much of him is gone, and i know in my heart of hearts he would hate people seeing such a strong, confident, dynamic, humorous, athletic man depending on his wife to wipe him and get him his food. It sucks, I am thankful you are out there getting our word out. Someday when life slows down a bit trust me I will be out there with you! Keep fighting girl, it’s all good!

  6. Wendy says:

    Karen, you did what I believe so many of us would have done. Not one of us in this community doubts the profound love you have for your husband. We all share in these losses in some form or fashion. You are doing a great job, don’t even think that you have let anyone down!

  7. Karen, please don’t beat yourself up…. you’ve done us proud, just as we knew you would! xo

  8. Michelle Fox says:

    Karen, you do so much. You are much too hard on yourself. What you do for the cause is tremendous. As we have spoken in the past, sometimes you do come off negative, but, that is not knowing your backstory, your fears, your love of Jim and the kids, the passion you possess. We all sometimes think…I just wish it was over. I can’t take it anymore and then quickly push that thought away. No worries, you are doing a fabulous job. You are a loving wife, mother, daughter and advocate. Congratulations on your success!!!

  9. Mary Osborn-Dixon says:

    You simply said the painful truth, and if it is taken as anything else, it’s their opinion, not your truth. The path you are on is long, dark, scary, and with only one outcome. Calling a spade a spade is not insulting the spade. It’s simply reality.
    None of us want to be judged by our worst moments. We want to be kind, generous, good and wise. But when reality is none of those, it’s not a bad thing to notice it.
    You are brave and strong, despite the long dark path.

    • 12th Man says:

      If Mary Osborn-Dixon is reading this, i saw her at a Sears store in Bellevue, Wa. in 1982 where we chatted about the Vancouver Canucks playoff run. Note that she was a member of the Seattle Seahawks Sea Gals at the time. Let’s hope Seattle beats New England in the Super this Sunday & that the Seattle Mariners win the World Series in 2015.

  10. Peggy Strange says:

    we all know that feeling that have a loved one with alzheimers of feeling that people are judging us badly , I deal with this every day but anyone that reads your post knows you care , you write from the heart

  11. 12th Man says:

    I meant to sea Super Bowl.

  12. 12th Man says:

    I meant to say “Say”.

  13. John Doe says:

    12th Man, the Hawks lost to the Patriots in SB49 late in the 4th Quarter on that go ahead TD attempt which N.E. should of been called for Pass Interference. Furthermore, Mary Osborn-Dixon is reading this, we also want the NBA back in Seattle. Now, The NFL came to Seattle in ’76 when the Seahawks began playing, Baseball came back in ’77 when the Mariners began playing, the Sounders came back in ’94 while the Stars came back in ’03, now we want the NBA back.

  14. John Doe says:

    I meant to include “If”.

Place your comment

Please fill your data and comment below.
Name
Email
Website
Your comment