Alzheimer's Disease: Family Stories

Julia Sessions: We've been married 52 years. And we have four daughters. And we have 11 grandchildren and 2 great grandchildren.

Bob Sessions:  And they all look like me.

Julia: I want to say the best thing that he did for me was to say, I want this to be an open process. And as soon as he got the diagnosis, we slowly began not making a big issue of it. But telling our friends telling our Sunday school class, calling the groups that we were in, And we have participated very willingly in clinical research, because first of all, Bob’s mother had Alzheimer’s, and that was very painful to watch her decline, his mother sister’s had Alzheimer's, and now he has it. And while we never been told there’s a genetic component, I think there that's obvious that there is something related there. As president of the college, as Dean of the graduate school, the school teacher, he was always in control, and to find that you're not in control of things that you used to it's got to be terribly hard.

Bob: I don’t apologize for memory lapses, but I just go one and do the best that I can.

Julia: I think the biggest challenge is maintaining patience, because there's an awful lot of repetition, and it's easy to get irritable, and you have to pull away some times to regain and regroup so you can be patient.

Bob: I have to give a lot of credit to Julia, because she is made life very meaningful for me and get me going. And when I might even given up.

Julia: Now is the time that so critically important for us to fund as fully as possible research because we don't know enough about the disease. There are no drugs that that are available for stopping there are drugs that will slow the process of slow the symptoms, but not the disease.

Art Taylor: So our story was one of a short term situation where mom was we noticed that something wasn't right with her, she was distant. And then later on, it got worse where we saw that she had actual dementia where she was hallucinating and so we thought she needed to be with us. She was literally seeing things that no one else could see. I tried to leave her alone in the house a couple times, and they were very, very harrowing experiences for her. She was afraid paranoid that something was going to happen to her that one of these visions that she was seeing was actually out to get her and you're sitting here watching this person in almost disbelief.

I got a phone call from the local police, and it was about two in the morning and they said, “Do you know, Matilda Taylor?” And I said, “Yes, I know, Matilda Taylor. She's my mother.” She says, “Well, we have her.” I said, “What do you mean you have her. She's here in the house.” It was three miles. She had walked in the middle of the night. And they brought her home to me. And the policeman tried to explain to me before they brought her in what her condition was. And she was just a mess. She was convinced that I, her son, who she gave her whole life to raising was going to kill her that night in that house, she was visiting with my brother and mom had a bad night. And my, my sister in law, saw what was going on. And she tried to secure mom in the house. And knowing that she would walk away. Well, mom decided that at all costs, she had to get out of the house and actually climbed out of the second floor window and fell to her death.

I don't know how much more tragic it could possibly get. And I know people are working really hard to try to figure this puzzle out. But we've got to put a lot more into it. So that we can find answers, because they're going to be a lot more to Tilly Taylor’s out there. We have to live in the moment with them, or they will separate from us and we will lose them all together.

Lisa Spikel and Kelli Magnarelli

Lisa: Eight years into the disease was when all the light went out.

Kelli: She just really enjoyed life. She loved life, she loved her family, and she left her friends.

Lisa: You don't know that they're going to become violent and agitated, and not be able to be in social situations that have been comfortable to them for their whole lives.

Kelli: Once in a blue moon, you would have a moment of greatness. Like, she would see one of the grandchildren and call them by name, which we were like, wow. But for the most part, this woman who lit up a room turned into an empty shell laying in the bed. it was my younger brother, who said that disease sucked every bit of light out of her. And as a nurse, I have never seen anything like it. And I have 32 years nursing experience.

Lisa: This disease just ravages a family and, and it starts with the person who has the disease, and it permeates through all of the relationships that individual has. The last two weeks of her life, she was surrounded by all of her children, and all of her grandchildren.

Kelli: It has the first time in all my years of nursing I ever felt helpless and hopeless

Lisa: This is a disease that is going to affect more and more people. And the level of incidence is going to be younger and younger. And we have to really focus on how we can help the individuals who have the disease, the families that are caring for the loved ones.

Kelli: Our mother was diagnosed with Alzheimer's when she was 58 years old. And 11 years later, just after 70th birthday, she lost her battle with the disease.

Grace Frisone: It puts a lot of strain on relationships. However, it also is very bonding because I found that my husband and I had a really good relationship and it made us stronger. When my mother started sliding, he would make me laugh when it seemed really dire so because you have to have a sense of humor in this. She was sauntering in the neighborhood. And someone from the porch said, “Oh, Good morning, ma'am. Where you going?” And she said “to Brooklyn.” And since she was in New Orleans, he knew that she wasn't going to make it pushing a walker all the way to Brooklyn. I needed to stay in the moment with my mother and not think about where she was and how she was before or where she was going, or how is going to be. If my mother taught me anything. It was to, to be present in the present moment, and to accept and to be accepting to accept her the way she was. I was in denial about this disease. What it does is alter your entire life. It changes the family's life, it changes the person's life, it it's the magnitude of it is indescribable. There's a stigma associated with the disease right now. And what we have to do is remove that stigma, we have to come out of the closet so that we can acknowledge that this disease exists. To the extent that I believe it does. What I think is vital is learning with the signs are and also knowing that that 50% of the population over 85 get some sort of dementia that means we're all at risk. Now is the moment that we need to fund research to find a cure for this disease right now is the time to do it.

This content was last updated on: August 22, 2013