Dr. Daly: Take my keys out... I’m going to be changing your medicine a little bit.
It’s a disease that takes so much away. At first memories.
Alzheimer's patient: Change the magazine.
Dr. Daly: Change your medicine, to see if we can get you resting.
Eventually, even the ability to walk and talk.
Lisa: Why don’t you want to tell them you have Alzheimer’s disease?
Alzheimer's patient: I don’t want them to. Already nobody likes me to be abroad, and now they’re going to say she put it on her self. She didn’t want to stay in France, something like that.
Snyder: These men and women have Alzheimer’s. Many are not so old, still active in life – all facing a diagnosis that is frightening and confusing and overwhelming.
Lisa Snyder is a social worker who runs this support group.
Snyder: Many people tell me when they hear that word Alzheimer’s they immediately think of end stages associations. We focus so much on the late stages of the disease and that deserves focus. But when you’re sitting there newly diagnosed, high functioning, out in your community perhaps still driving, engaged in activity you sit there and you think that can’t be me, that’s impossible.
Carl Hopkins is 74 years old. A former Navy man and broadcast technician, married to Sue Holloway for 20 years. He was diagnosed with Alzheimer’s more than four years ago.
Hopkins: It was very frightening. I thought my God, where am I going with this? I can’t handle this the rest of my life. I never thought about suicide or anything but I thought there’s go to be something done to make sure I can live on and carry one, and so fort, and so forth.
Hopkins: How long has it been since you made a pot of coffee…yesterday your foot.
Sue Holloway: Dan is coming tomorrow….so I changed the calendar.
Carl’s wife Sue noticed he was repeating himself. That lead him to the doctor, a number of scans and neurological tests later, he got the diagnosis. To a stranger, it’s not obvious Carl has Alzheimer’s, until he’s in conversation and he repeats himself.
Carl: So I started writing things down that I couldn’t remember.
Carl: Like I said I write things down.
Carl: Like I said I’m writing things down.
Carl: Like I said I write things down.
Hayden: Signs of forgetting are subtle, and easily disguised.
Hayden: That’s okay.
Don: I was having spells very briefly of being down a familiar street and suddenly not remembering where I was, to just have fleeting moments of, still recognizing things, but I couldn’t remember if I was suppose to turn at the next street, it was just like I had drifted off the earth. I was in space and lost it”
His wife Jane went to his doctor when Don started getting angry for little reason. Over the past two years, Don has coped well with the disease, so well he’s been unable to meet the requirements to take part in clinical trials of experimental Alzheimer’s drugs.
But Jane notices his decline.
Jane Hayen: I had placed a new debit card the bank had sent, and it was his ton I put it on his chair and he wanted to know what it was and he said what am I suppose to do without it…send us a new one…I’ll get mine another time…this is your new one…am I suppose to call and activate it. And that was very sad that it was moment he had forgotten what that was and . .
Forgetting is normal. You might forget someone’s name, or even why you walked into a room. But forgetting often and forgetting recently learned information is one of the most common signs of Alzheimer’s.
Both Carl Hopkins and Don Hayen describe moments of confusion, of being lost while driving on the freeway.
Don: I’d pull over because I was so frightened by it, it was extremely unsettling then I’d recover and I do on.
Carl: My brain said if I was going north, so I’m going south. One day, I just pulled the car over to the side of the road, looked around, and see the trees, click, now I’m going south.
Daly: Alzheimer’s disease or dementia is a diagnosis. Alzheimer’s being the most common, cost Medicare about $90 billion a year.
Dr. John Daly is a geriatrician. He diagnoses and treats Alzheimer’s patients.
Daly: More often I see the individual where the family has noticed something going on or friends and they’ve brought them in for evaluation and say I’m fine. Until you really start doing some testing and it becomes apparent.
Alzheimer’s disease has seven progressive stages that span between an average of 8 to 12 years. From no visible impairment to very severe decline and ultimately death.
Daly: It soon progresses to the point where it affects other areas of the brain other than thinking and memory. People become immobile, they forget how to walk. They forget how to feed themselves. And it’s that type of deterioration that leads to death.
Don Hayen is acutely aware of how the disease will eventually progress.
Don: I’m not fearful of dying, I want at least the best shot I’ve got at maintaining my awareness because being alive and being a zombie just isn’t being alive. I’ve watched patients, I’ve had patients with Alzheimer’s. I sue to make visits on them they had bed sores, all that kind of stuff. It isn’t a good way to die. It just isn’t it. The diagnosis brings fear, sometimes embarrassment, and isolation.
Holloway: It’s a very lonely disease, a very lonely disease.
Holloway: Many times it feels like it’s just the two of us. And I know poor Carl has to deal with a lot of boredom when you can’t do what you use to do. He’s bored. And that’s the other thing lonely and bored; we spend time trying to find things that Carl can do.
Carl and Sue avoid social situations and at times, friends from the past have avoided them.
Sue: Carl is like the elephant in the room, that everybody, the elephant is in the room but nobody wants to acknowledge the elephant is there. So you know, he…it doesn’t have to be that way. It doesn’t have to be that way.
Alzheimer’s patient: Many people are curious about how you reacted to a diagnosis of Alzheimer’s and if you decided to tell other people about or not.
Alzheimer’s patient: We’re maintained breathing and consuming long into being dysfunctional and that is a social societal decision we’ve made in our plentiful civilization and I don’t know that it’s the best.
It's a question Don Hayen has already answered for himself.
Joanne Faryone: You said you’re not afraid of dying, so are you more afraid of not being aware?
Hayden: Oh absolutely. I would like to have the opportunity to have the available tool to make myself go away at the moment I think my wife no longer, I can no longer recognize my wife and kids, at some point I could say this is the point at wish I should just be gone. I shouldn’t be around anymore. It would be nothing but a burden. A patient who dies this way spends three years dying and most of that time they have no awareness of anything. They don’t even know they’re alive. That’s what makes Alzheimer’s so scary and it really speaks to having methods to get rid of people that way. It’s almost inhuman to keep them alive.
