Pain with a side of happiness

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Part of our journey with Alzheimer’s Disease is accepting help. Damn, it is hard. Help with not just financial things, but emotional needs and just relying on my friends to help me with the most mundane decisions. Decisions that I once had a partner 24/7 to throw things at and see what stuck and what didn’t. Decisions I could do blindfolded with one arm tied behind my back while falling asleep. Now, just something as simple as what to fix for dinner or which load of laundry to start next can be ginormous.

I really miss having that partner; someone that knows my history, my family, my friends, my desires and my dreams. Actually, not MY desires and dreams, OUR desires and dreams. Someone that has the same goals in life and we would work on figuring out how to make our family decisions based on reaching our goals together. Together. Now, I often feel alone and my goals have changed immensely. New goals that are intertwined with something out of my control and right now beyond my reach. They are more confounding short term and much more solitary long term.

I just returned from a very enjoyable trip to San Diego. I LOVE San Diego and Southern California. I was able to go because I was asked to speak at the American Society on Aging 2014 Aging in America Conference. I first got to visit with a very dear friend of mine, Jen. We met almost 20 years ago while we both were living in Las Vegas. She has 3 beautiful daughters and a great husband. They now own Serious Cycling,  a fabulous bicycle shop and graciously gave me a tour. Somehow, we had managed to let over 7 years pass without seeing each other. Thanks to this opportunity to visit in the area, we were able to have a quick but very satisfying visit. I had forgotten how much we had shared through the years. I had forgotten how much Jim and I had enjoyed our visits with them. But over the course of a few hours, wonderful memories came flooding back and they were so bittersweet. I had forgotten our camping trip to San Onofre Beach (Jen is the one who took the picture of Jim and me on the beach that is on the Missing Jim Facebook page) While we were chatting, her husband mentioned what a fun trip that was. Bam! It felt like I was hit in the gut. Yes, it was a great trip. WE had been a fun couple. WE had plans to have more fun trips. WE wanted to do that again someday. In an instant, I was elated that someone had thought doing a camping trip with us was a fun event and so stricken with sadness that it would be wasted breathe to suggest doing it again.

Jen and I together again! March 2014

Jen and I together again! March 2014

While Jen helped her daughters with homework, I sat outside on the back porch swing, (after laying on her luscious green grass) enjoying the Southern California Sunshine and warm gentle breezes while gazing at their pool. The pool that Jim played with the kids so much in during our numerous visits. The adorable play house that we had decided Jim should try to replicate back at our home. The ping pong table where they had first taught us to play Beer Pong (long before it became a fad) The Jacuzzi we had sat in for hours, enjoying the stars, the friendship, great conversations and thinking that our lives were perfect and would be that way forever.  I sat in that swing and for the first time in a very long time had an opportunity to really reminisce about our life: years ago. Not our life now or our life in recent memory. It had been so long since we had been there that these memories are not part of any thoughts of Alzheimer’s Disease. When Jim and I were visiting Southern California and enjoying ourselves, Alzheimer’s Disease was not in our regular vocabulary or on our radar. I have been so caught up and focused in our day to day life and trying to figure out our future, I hadn’t really thought about our past, our FUN past.

I believe that no matter what struggles you face in life, you get overwhelmed and downtrodden with burdens and it becomes nearly impossible to see a silver lining. It is impossible to remember happier times while remaining in your stagnant environment. It is invariably unfeasible to see a brighter future while enduring constant darkness and pain. It is a struggle, but during this thing called life, we all must keep pushing forward while keeping close the wonderful memories we have to sustain us thus far.

So it was because of Jim’s misfortune that I was lucky enough to visit my friend and get a respite from my current world with Jim. The irony is suffocating.

There have been many instances where my life has been filled with wonderful, enlightening gifts recently due to our circumstances. There is no question that I would rather have Jim back to his old healthy and happy self,  but if we must endure the pain and agony, at least we also have bits of sunshine and comfort along the way.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

10 Responses to “Pain with a side of happiness”

  1. Karen you, Jim and your children are so young to have to face Alzheimer’s. There are so many highs and lows in one day it makes our head swim.
    Today I wondered where did my life fit into to the constant change of the disease, how to keep a happy face, and watch my world spin out of control.

  2. Jennifer Johnson says:

    My dearest friend, Karen! I love you so much and am so glad we had a couple of days to reminisce, laugh out loud, feel the tears in our eyes and enjoy each other’s company once again. Our friendship is so special that even after 7 years, it felt like I had just spent the day with you yesterday! You are a true hero to your family, your friends and the world as you share your struggles, your fears and your daily accomplishments with this horrible disease. Continue your efforts, as you have done good my dear and God has placed you in this situation for a reason – may not be what we all wanted but he does have a plan. Love ya, girl! and keep sharing!!!

  3. Karen you are amazing your power of the written word is mighty. As I bike across this country I think of your family and many others only hoping I can make a small difference. Love, Rona

  4. Linda says:

    grab and savor the joy whenever/wherever/ifever you can

  5. Maureen says:

    Thank you Karen. On October 10, 2004 I married the love of my lifetime! This October we will celebrate our tenth anniversary! Five years ago or half our marriage, my husband was diagnosed with early onset Alzheimers. Our newlywed years seem like a dream today. This whole thing is surreal. But like Jennifer said, I believe God has a plan. I am thrilled you had a great time! And thank you, again, for carrying our message!
    xoxo Maureen

  6. sherri williams says:

    Take all the help that is offered and don’t feel guilty. You are doing your part to bring our way of life to the attention of the world and the help you receive is payment for that work and your openness. Thank you!

  7. Kimberly Smith says:

    Karen, I’m so glad you were able to reconnect with your friend and get some much needed rest. Thank you for speaking for all of us. This has been a very emotional week for me. I took my husband for a check up at UAB, with his neurologist on Tuesday and I it confirmed what I knew, he had declined quite a bit. They added another medication and were told to come back in six months. On Thursday, I took my Mother to her neurologist and he started her on Aricept, for Alzheimer’s dementia. I knew the diagnosis wasn’t young to be good, but to hear it was another thing. I’m 45 years old and a full time caregiver to my husband, who is 57 and now my Mother, who is 73. At times I feel like I can’t breathe. It’s all so overwhelming. It’s sad. My husband is much more advanced in the disease than my Mother. She can still do things that he lost the ability to do long ago. I know the feeling of not being able to make decisions, feeling lost, it’s almost more than I can do at times. Both of their doctors told me to be sure I take care of myself. Because of the level of stress of being a caregiver can cause serious health problems. You are blessed to have wonderful parents to help you. I hope the rest of your weekend is a peaceful one. Hugs, k

  8. Kimberly Smith says:

    Karen, I’m so glad you were able to reconnect with your friend and get some much needed rest. Thank you for speaking for all of us. This has been a very emotional week for me. I took my husband for a check up at UAB, with his neurologist on Tuesday and I it confirmed what I knew, he had declined quite a bit. They added another medication and were told to come back in six months. On Thursday, I took my Mother to her neurologist and he started her on Aricept, for Alzheimer’s dementia. I knew the diagnosis wasn’t young to be good, but to hear it was another thing. I’m 45 years old and a full time caregiver to my husband, who is 57 and now my Mother, who is 73. At times I feel like I can’t breathe. It’s all so overwhelming. It’s sad. My husband is much more advanced in the disease than my Mother. She can still do things that he lost the ability to do long ago. I know the feeling of not being able to make decisions, feeling lost, it’s almost more than I can do at times. Both of their doctors told me to be sure I take care of myself. Because of the level of stress of being a caregiver can cause serious health problems. You are blessed to have wonderful parents to help you. I hope the rest of your weekend is a peaceful one. Hugs, k

  9. Ray Wiseman says:

    I am a caregiver to Alzheimer’s. My sweetheart was diagnosed W AZ in 2006. She is 81 & I am 86. I am with her 24-7 except 1/2 day. It sure has taken a toll on my life. I pray and cry a lot. I have recently got info fr a friend and have called on a retirement home & VA ass’t. And called on my home Senator to fund monies for AZ.

  10. anne says:

    So glad you got a few days in beautiful San Diego. What helped me a great deal was learning to accept the disease instead of fighting against it constantly. I put the focus on what I have instead of what I’ve lost. It helps to write a daily gratitude list — thank God for my health, life, home, the support, loving friends and family. Yes, I still feel terrible at times but have much more serenity than before. God bless

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