Jun 14, 2010

Three Generations of Alzheimer’s: A Tribute to Carolyn

“Bobby, you just have to face the fact your mother is nutty as a fruitcake.”....

By Carol Blackwell
Alzheimer's Reading Room

Carolyn 1944

Carolyn Blackwell, my mother-in-law, turned 96 yesterday. Happy Birthday, Mother! She did smile at the cake (her wonderful recipe for sour cream cake) and smiled at her son. I think she enjoyed the moment. Unfortunately for her—and for us—she won’t remember it. Carolyn has had Alzheimer’s for 20 years and can no longer walk or speak.

I met Carolyn in 1966, a year before I married her son, Bob. She was born in 1914, the fourth of five sisters and married Bob Blackwell in 1934. She was a sweet lady and always treated me very kindly even though someone overheard her at our wedding say, “I never thought Bobby would marry a YANKEE.” Not long after our wedding, we moved to Atlanta and lived across town from his parents.

I do remember Carolyn and her sisters huddling to determine what to do with “Mama” after their father died. I wasn’t aware of anything wrong, but there was talk that Mama had become ‘senile’ (age 84) and they weren’t sure of how to care for her.

Mama had a brief stint in a nursing home (lasted only a few days as I recall) and then remained in her own home with a series of caretakers. I only remember two. One woman came with outstanding references, but didn’t last long. One night, in a drunken stupor, (no one had a clue she imbibed) she fell into the bathtub and Mama (who weighed 85 lbs soaking wet) had to help her out. The last caretaker was a God-send—a wonderful person—who stayed with Mama until she died. No one mentioned the word Alzheimer’s---becoming senile seemed to be an expected part of aging.

Carolyn had a good life. She was devoted to her husband, Bob, and he adored her. He ran his own business, building stone patios, etc. and she took care of the books. In addition, he coached little league football and she was known as “Mrs. Coach.”

Her sisters lived nearby and they had many friends. Carolyn was active in her church and doted on her son and only child, Bob. We lived in Atlanta for 6 years, and moved to Washington DC in 1975. Bob’s parents came to visit at Christmas and we went to Atlanta at least once a year. Carolyn was a good cook and one of her best recipes was her sour cream cake which she took to many gatherings---6 eggs, 3 cups of sugar, 2 sticks of butter—well, you get the picture!

We had no clue there was anything wrong until 1990 when our daughter was to meet Carolyn at the Atlanta airport to travel to a relative’s wedding. Our daughter told us she couldn’t find her grandmother and they only connected when a stranger showed up with Bob’s mother in tow saying she had become confused. We were concerned, but not overly upset. After all, she was 76, but that wasn’t really that old.

After that, we noticed more things. She stopped taking care of the books from Bob’s father’s business, she stopped cooking and she neglected to clean the house (she was always a meticulous housekeeper). When we went to visit, we found the bills piled up and unpaid, and she had dozens of magazine subscriptions, paid up until later than 2000 (this was in 1993!).

I am not sure when we took her to the Dr. I remember the visit. Bob and I were trying to explain some of her behaviors and her Dr, a family friend, stopped us and said,

“Bobby, you just have to face the fact your mother is nutty as a fruitcake.”

Yes, he really said that---still boggles my mind. He was not only a Dr, but their friend. Go figure. I am not sure they gave her any medicine---I don’t think Aricept was around then. The word Alzheimer’s DID come up then, but no one knew much about it or why she might have it.

Bob’s father died in 1997 and we were stumped as to what to do. Should we take her to live with us? Even though she couldn’t do a lot of things, she knew where she was and she insisted she wouldn’t leave Sandy Springs, the suburb of Atlanta she lived in. I have never seen her so adamant. In addition, both Bob and I had jobs we loved and which couldn’t be replicated in Atlanta, so we were stuck.

At first, we tried to hire 24 hour care for her in her home and manage it from Virginia. That worked for maybe a week. One night, around 2AM, we received a frantic call from the organization that supplied the caretakers. They had a shift change, Bob’s mother awakened and thought the new shift worker was a burgler. She took the broom and chased the person around the house and out the door, called a taxi and took off in one. We still don’t know how she had the frame of mind to call a taxi!

Of course, we were beside ourselves, calling friends and relatives in Atlanta to try and find her. Someone located the taxi company and got her safely home and stayed with her until the next day. Clearly, keeping her in her own home wouldn’t work. Carolyn still knew enough and INSISTED on staying in GA, so we found a facility in Sandy Springs and she was happy there for 5 years. She went to activities and a kind man named Mr. Paul, decided he would help take care of her. That enriched her life and, as his sister later said after he died, enriched his life as well.

Carolyn finally got to the point where she didn’t know where she was and then we moved her to Virginia so she would be closer to us. She lived in an assisted living facility with a lovely Alzheimer’s unit –large windows with rocking chairs facing a garden--until she ran out of money.

Carolyn and her husband had saved all their lives, but 8 years in any facility will eat up any savings except those of the most wealthy. She ended up on Medicaid and now lives in a nursing home nearby where she receives very good care.

We are not able to bring her to our house as she is in a wheelchair and we can’t navigate either her or the chair. In the early years, we did bring her to our house often, but she became more confused and seemed to be more content staying where she is. It is so hard to know the right thing to do! And, guilt, of course, is always present! We did the best we could at the time, but I still wonder if we should have done something different……

It wasn’t until Bob was diagnosed with Alzheimer’s in 2006 that we discovered there appeared to be an AD gene related to the Chastain family (Bob’s grandmother’s maiden name) By that time, Carolyn’s sister had died of Alzheimer’s, so there was definitely a pattern.

I guess we have made progress since science now knows about Alzheimer’s, has some medications to treat symptoms, slow down the progress of the disease and improve life. We only hope a cure will come soon. What seems frightening to me is we know so many people with Alzheimer’s in the family who were diagnosed at ages at least 10 years younger than their parents. As we move forward, are we also moving back?

We hope a cure will be found soon---it can’t be too soon for us! It is already too late for Carolyn.

But for today, Happy Birthday, Mother.

Subscribe to the Alzheimer's Reading Room
Enter Your Email Address

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.

More About the Alzheimer's Reading Room

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,565 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

The Alzheimer's Action Plan

300 Tips for Making Life Easier

Original content Carol Blackwell, the Alzheimer's Reading Room