alzheimer's help

Please try to imagine something for a few minutes. Imagine you are not quite middle age, with fairly young kids starting to get involved in lots of activities. You have a fairly good social life, with a tiny bit of disposable income. Your marriage has weathered plenty of storms and the two of you have decided to stick around for the long haul while working on re-connecting. You are just cruising through life with your own fabricated worries each day. You work part time because you want to be able to take care of the kids when they are out of school. Your husband works full time and travels quite a bit so you get some time by yourself as well as time together.

Now imagine that your spouse starts saying really strange stuff. Not all the time. But just enough to be really annoying and become increasingly worrisome to the point he starts going to doctors and getting lots of tests. The two of you start therapy to no avail.

Now picture sitting across from a doctor, in uncomfortable chairs not really sure if you should be holding hands or taking notes. You hear words that you aren’t familiar with but are being said in a way you know means something is bad. Really bad. You want to cry, but your body has decided a form of shock is more productive than tears. You ride home together without really acknowledging what just happened. You search your mind for something positive to say. You want to revert to the old standard,” We will do some research and find a cure. We will beat this.” But you just heard things like, ”no cure” “no current treatments or course of action” and “start looking into power of attorney paperwork”. The two of you get home in time to pick the kids up from school and start the normal routine of life. But you have this new underlying thing ticking away inside of you. You know that you need to talk. You know that you need to plan. You know that you should be falling apart at this very moment, but instead you are planning dinner and checking homework. You stare blankly out the window in front of you, above the sink, cleaning chicken as your 5 year old is singing. Something about wheels on buses. You don’t really acknowledge any jokes or smile. The kids don’t understand. But you can’t tell them. You can’t burden them with your new secret. And you certainly don’t want to finally open the floodgates in front of them.

All of a sudden, your whole world has been turned upside down. Or you know it will be. Right now, everything seems pretty status quo. Nothing has really changed a whole lot. That will come in minuscule increments over the coming years.

Imagine waking up the next morning and each morning for the next 4 years,and as you slowly come out of the fuzziness of slumber, you have a flash run through your mind. The doctor. The words. The emptiness that is growing inside of your chest becomes larger and common. You heart aches and breaks each day as you helplessly watch your husband morph into someone you don’t recognize and don’t know. Can you feel the pain of holding them as they cry? Can you see the scared look in their eyes?

Can you picture the tears that start to fall when you least expect it? Now when you go to the Hallmark store to purchase a card, the words printed on the card seem like ironic, bitter wounds that are so painful you can’t even grasp not feeling the pain. Aren’t there any cards that don’t have something about “forever”  “grow old together” or “dreaming of the years ahead”?

The kids start to notice things. You finally must tell them. You aren’t sure what words you should use to spare them pain but at the same time provide knowledge and understanding. You start to worry. About everything. Ruining the children and their childhood. Finances. Relationships. Your home. Finding a job. Long term care planning. Research trials. Wills. Directives. Then one day it hits you so hard, so fast and so thoroughly you are not sure that you can move, breathe or think; this disease that has no cure runs in his family. The kids. More research, more questions and a mountain of worry fill your world.

How would you feel if you were no longer in the position to dream of a better life? What would you work hard for and plan for if you thought it was hopeless? Can you put yourself at a social gathering, trying to explain to friends that don’t understand, don’t see what you see and who suddenly seem a million miles away? Can you feel the heartache and the excruciating loneliness that starts to seep into your core? Do you really care anymore about anything? Are you able to see outside of your own world of pain and hurt and anger and isolation to remain a stable, sane part of society?

Eventually you are trying to navigate the very arduous social security disability tightrope, which is like having to deal with the DMV but with 100 times more paperwork, follow up and waiting. And when you finally hear back from them, it isn’t because you are done, it is because they need more paperwork and have more questions.  By this time your body is in perpetual slow motion and your brain is constantly feeling as if it is in overload and trying to shutdown. You wake up only when you have to. Suddenly you are working full time while your husband stays home. You quickly realize that your life before had been pretty damn good. Those days of volunteering at the kids’ school are gone. No more jogs or walks during the day. No more TIME to clean the house. Can you see yourself flipped upside down and shaken to the core while trying to work, manage a home and make every single decision in your family’s realm?

What would you do to pull yourself out of your fog? How would you smile and laugh and dream and feel love if you always had thoughts of death and disease running through your mind? How long could you live, knowing your future was going to entail watching your spouse simply forget who you are, who your children are and how to care for himself? But you don’t know how long the process will be. You could endure this for a couple of years or maybe 20 years. You think to yourself; I will be a widow when I am 53. But only after a very long road of watching him suffer and simply stop being himself and having to take care of him. Then I might have to take care of the kids. The nightmare doesn’t seem to have an ending.

You stop returning calls or attending parties. You can’t find words to put together to make a sentence that anyone would want to hear. Imagine going through the motions of life and feeling it is a waste of time to plan for anything past the next 5 minutes.

Now, feel the strength from within you finally breaking through, like a baby chick pecking out of its’ shell to begin life. It must search slowly, looking for the right place to start and eventually jabbing faster and harder and stronger until it can break free and see the light and the world around it. You are only able to do this with invisible arms reaching through to help wrench you out of the sticky mess while you are being pulled back into the darkness. The arms that surround you are family and friends who do not let you stay sucked away in your own misery and depression. The hands grab you: lovingly and forcefully tugging you towards something that has reason and meaning and life.

You have a mission. A cause. A purpose. You had never known you could do this. But you must. There is no other way to keep moving forward. You must be part of the solution, not part of the problem. It is the only thing that will allow you to find happiness, purpose and self worth again.

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 “Imagine”

  1. Jeff Watson says:

    Thank you for sharing your heart and your story with us. May God watch over and bless your family as you move forward together!

  2. Becky says:

    Raw, utter honesty. Thank you for sharing the tale of your journey. Thoughts & prayers to each of you.

  3. Diane says:

    Beautiful, heart felt expression. Thank you for bearing your soul. God bless your family.

  4. Renee' Lange says:

    Beautiful job again….it’s like you have read my mind. I felt all those things also. Just as we were getting to retire our world got turned upside down. You work your whole life for the “golden years” and in one doctors visit, it is wiped out. Take care, you are in my prayers.

  5. michelle says:

    Living the same life. Thanks for your posts. You are a very good person. I hope I do half as well.

  6. Maureen says:

    One of your best! xoxoxo Maureen

  7. Margie says:

    My heartbreaks for you. I know the pain of a spouse with
    AD. I so admire your ability to share your deepest feelings in such honest words.
    You are helping others including me.

  8. Lisa says:

    Your beautiful words give me solace in knowing that I am not alone. I, too, am living the same life. Prayers to all of you.

  9. Steve says:

    It is like your talking about me! We don’t have young children now. We were getting close to retiring, enjoying life as we could, and growing old together. Now I find myself going back and forth to a nursing home and wondering if I will live long enough to look after my wife until the end comes. And the thought of being alone when my life comes to an end.

  10. Kimberly says:

    I appreciate you sharing your thoughts. I am going through the same thing with my husband. Prayers for you and your family.

  11. Karen , I am so glad that Jim has you for his wife . You take care of him and the children . You have a long hard road ahead of you but I believe you can do it. Jim was such a fun kid when he was young. He became my third son and I loved him.take care of him Karen and hopefully he’ll get better . My prayers and love to you a

  12. Jonnie says:

    I follow your blog, because I can relate to so many of the things you write about. My husband is 4 years in at 57. I know I am not alone by the number of people who respond to your posts, but sometimes I think it would make me feel better to be the only one dealing with this. It just makes me sad to know that so many of us are living with this anticipatory grief. God Bless you.

  13. Mary says:

    Very well written, Karen! I’m so happy for you that you have broken out of the despair and embraced your mission. A good place to start would be to take a look at how much the U.S spends on HIV/AIDS compared to what it spends on Alzheimer’s – and then start asking the powers that be why that is the case. I’ll be praying for your efforts.

  14. Janie says:

    Hi, I know you will probably think this is off the wall , but just wanted to mention in researching one family member who has Lyme, I came across some research from Dr.MacDonald on Lyme. He has done autopsies on Alzeihmer patients and he states he has not found one that did not have the Lyme spyrochete in their system. You might want to research this and also note that the tests for Lyme don’ t always come back positive. . One a positive note. A recent research by Eva Sapi New Haven. University (which was taken down) noted that Stevia, which is available everywhere.(sugar substitute) killed Lyme cysts better than Doxycycline. You could maybe try using this sugar substitute , and see if you see any results.

  15. Kim says:

    YOU are amazing! JIM is amazing! FRANCES & BRAD ARE AMAZING! Live in every moment. My mom passed away from Alzheimers a few yrs ago & my brother passed away from early onset Alzheimers last February, at age 58. ALL of you are making a difference – WITH ALL THAT YOU DO!

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