The World has Ended……The Diagnosis

Our world just ended. That was my first thought on hearing my husband’s diagnosis of Alzheimer’s.....
By Carol Blackwell

"Dr. Blackwell, the test results are back. You did very poorly on them—not at all what would be expected from someone with your education. You have dementia and it is probably Alzheimer’s, based on your family history. There is no cure for Alzheimer’s.

We will try some medicine, but it may or may not work. You won’t be able to work anymore…maybe you could volunteer somewhere. You should go home and put your affairs in order. Here is a sheet on the Alzheimer’s Association. You may want to call them. You might want to consider a clinical trial. We will see you in 6 months."

Our world just ended. That was my first thought on hearing my husband’s diagnosis of Alzheimer’s.

It really wasn’t a surprise, as the Drs had ruled out everything else through a variety of tests. It was still a shock. How could he have Alzheimer’s? He was barely 64. His mother was 77 when she was diagnosed. How could this be happening?

We rode home in silence, both of us trying to decide how to tell our children and what to do next.

I very clearly remember thinking: “There are 5.3 million people in the U.S. with Alzheimer’s. How come we feel so totally alone?” But we did.
We had no idea where to go or what to do next. What did “putting your affairs in order mean? Planning a funeral? Picking out hymns? How long did Bob have?

We came home and just sat there. I couldn’t find the sheet the Dr had given me with the Alzheimer’s Association, but started looking at clinical trials on the Internet.

The google search showed a website with what seemed like thousands of trials -— it was overwhelming, so I clicked out of it. Bob and I looked at each other and thought, “So,what now?” That was four years ago.

Looking back:

What I wish the Dr had said: "Don’t be too upset. Come back in a week and you can have a counseling session with those who understand the disease and who can help you and your husband. You will still have many good days left."

What I am grateful she did say. “We will try Aricept and then Namenda—it may help. “

Now, almost 4 years later, what I wish I had known;

  • The world didn’t end. It just became a different world. Aricept and Namenda were a Godsend.
  • We found a clinical trial. Through a convoluted manner, Bob’s cousin in Atlanta found a clinical trial at Emory University looking for the Alzheimer’s gene in the Chastain family---Bob’s grandmother was a Chastain. Through that trial, we found some leads on clinical trials at Georgetown University Hospital.
  • Dr Turner and the people there have been absolutely wonderful. He has been in a vaccine trial since December 2007 and is now in an open label extension.  We look forward to each visit.
  • Our family and friends have been so supportive. In addition, we have made new friends—other people with Alzheimer’s and their partners. No one seeks to join the “Alzheimer’s Club”, but once you are a member, you find wonderful people who also are members. We are not lonely anymore.
  • Bob and I have become advocates in fighting the disease. It gives our life purpose. In addition, Bob, who still misses working, has started his own photography business and is finding meaning there.

Life is good. It isn’t the life we planned after retirement, but then, life never is, is it?

We are members of the 5.3 million living with Alzheimer’s and we are not alone.

Carol Blackwell lives in Northern Virginia with her husband Bob. Bob was diagnosed with Alzheimer’s in 2006. Carol is a part time leadership coach and instructor. Both Carol and Bob are active advocates in the fight against Alzheimer's disease. Bob and Carol also blog on the USA Today website.

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Original content Carol Blackwell, the Alzheimer's Reading Room