It’s coming….


I don’t love Jim anymore than millions of other people love their spouses. When I say this, I mean it in a way that conveys understanding that others love just as I do. As we do.  Sometimes I find myself wondering what my life would be like if I hadn’t met Jim. If I hadn’t been forced to deal with Alzheimer’s Disease and become so involved in helping others.

When I try to envision a life without Jim, without our children and now, without being immersed in all things Alzheimer’s, I am left with a blank mind. I am unable to see my world without Jim, without Frances and Brad and now, without the friends, colleagues and support I have found through my Alzheimer’s world.

I have been blessed recently. I have been blessed with dinners, gift certificates, financial support, help around our home, notes of encouragement and with renewed energy to make a difference.

As I accept all of these blessings, I do so with a bit of guilt. Why? Because I don’t feel like I deserve anything. I know there are so many others going down this same path who are on their last rung, last bit of rope and they are struggling just as I am to hold on. Who is to say I deserve help more than they do because I speak out? Because I get an article in the paper and I have a blog and I have friends and family that come to my rescue daily?

I am only one of MILLIONS of people in this world travelling this downtrodden path. I have chosen to speak out and share because I can. Because MY personality lends itself to be able to. Why should someone who is more private or more soft-spoken or just plain shy not reap the same benefits I do?

There is survivor’s guilt (which I already have even though Jim is still very much here) and then there is spokesperson guilt. Who knew this even existed?

My question to myself is What am I going to do about it? I have a plan. I am going to help others. A LOT of others. But, I have to get my ducks in a row and figure everything out. If I can do this, not only will I help myself, I will be able to help so many others it isn’t even funny.

Give me a little bit of time. Give me some patience and some support. I have a desire and there is a need. We will work together to get this started and then get this done.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (6)

6 Responses to “It’s coming….”

  1. Marti C. says:

    God bless you on this new mission, you can do it!

  2. Kimberly Smith says:

    Hang in there Karen. I really appreciate your honesty. I have the same feelings. The guilt, sense of loss, the financial hardship that goes beyond comprehension. I feel like I’ve aged 20 years since this illness has taken over my husband and our lives. I do feel like today, at the age of 45, I have reached a level of maturity and strength I never knew I was capable of. Once again thank you for sharing, I look forward to your posts. As always, praying for a cure.

  3. Michelle Fox says:

    Bravo, Karen…you have grown so much since I started reading your blog.

  4. Elizabeth Brewer says:

    It’s not that anyone “deserves” it. It is truly that people DO want to help and that is the only way they can show it sometimes. That was one of the hardest lessons I had to learn because I was used to being proud and self sufficient. Dealing with this disease literally turned my hair from brown to white within two years. Be proud of what you are doing and know that people stand with you because they truly DO want to make a difference. You are the face and voice of that difference. Blessings today and a wish for some moments that give you peace and joy.

  5. Steve Haney says:

    You are right on target about needs and feelings of guilt!

  6. Maureen says:

    I sometimes wonder why you do it. Sometimes I wonder how you do it. I believe in spite of our experience being caretakers to such amazing men like both our husbands are, we have a need to maintain our sanity and to not lose ourselves or our souls. You should have no guilt because you are speaking for so many of us. You make a tremendous contribution to those of us who do not have the time or energy to do what you do. We are each on our own journeys through this horrific disease. But you have a way of bringing us together through your voice. All we can do is be the best women we can be. And, that’s all we can be. I also believe having gratitude for what we do have, as you have expressed, is what’s most important. Continue to speak on our behalf but more importantly for those we love who cannot do so for themselves! God Bless You on your journey!
    Love, Maureen

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