One of the questions I get asked often is, what stage of Alzheimer's is Dotty in? I am very familiar with the stages of Alzheimer's, but I can't answer that question. I just don't know.
Alzheimer's caregivers often ask, how long will it take before the person living with Alzheimer's gets to the end stages. I can't answer that one either.
It does hurt when a caregiver asks, why is the disease progressing so fast in my loved one living with dementia? This usually happens when the person seems to be in a more rapid, easy to see (perceive), rate of decline.
I know caregivers that watched as their loved one declined rapidly, in a year or two.
And, I know a caregiver that has been caring for his wife for 18 years. She is currently in a care facility and bed ridden. He goes to visit her every single day. This man is 88 years old.
Rose Lamatt, author of Just a Word: Friends Encounter Alzheimer's , went 14 years I believe. I learned a lot from her book. It really did help me to get mentally prepared. A lot of lessons to be learned.
They say the general rule of thumb is 6-8 years, with an outside boundary of 20 years.
As best as I can tell, there are three major patterns of cognitive decline in dementia patients.
Patients diagnosed with Creutzfeldt-Jakob disease (mad cow) decline very rapidly. Patients with Frontotemporal Dementia often experience the loss of moral reasoning and sense of self. There might be as many as 70 different types of dementia. This in part helps explain why it is so hard to put a "time frame" around cognitive decline.
It is also so true that after an autopsy, doctors often learn that the patient is suffering from more than one type of dementia. In about 37 per cent of cases, an entirely different diagnosis was made after the patient's death.
One reason why this happens is because the patient might experience additional neurological damage after the initial clinical diagnosis. This additional neurological damage sometimes explains why a given patient all of a sudden, starts to go downhill fast.
In other words, there are possible triggers that "go off" over time and change the trajectory of cognitive decline. And sometimes, the diagnosis is wrong. We just don't know enough about the brain and dementia right now.
I am reminded of our own case.
In the beginning I was often asked by family and friends, how long do you think you will be taking care of Dotty? I usually answered, another year or two.
At first, it seemed to me that Dotty was declining very fast. One example, she was falling down all the time. She even fell and broke her finger.
This lead me to believe that it wouldn't be long before she was bed ridden. Wouldn't be long before I would be making the decision about whether or not I would have to put her in a "home".
As it turned out, I cured her of the falling by taking her into the gym. The stand up sit down exercise did the trick along with the workouts. That was seven years ago. Dotty has not fallen since, although she did trip two or threes times.
It was around the four year mark that I stopped saying, another year or two. I finally started saying when asked how long, at least one more day.
That is how Dotty and I roll, one day at a time. For those of you that know me well, you know there have been many occasions when I said, "this it it". Only to be proven wrong by Dotty.
I understand why Alzheimer's caregivers can be so thoroughly disconcerted day after day.
We just don't know. This is hard to swallow and hard to accept.
Dealing with life and life's problems is hard enough when you know what you have to do.
Dealing with constant change and the "unknown" is hard to do. It is stressful, disconcerting, and often gut wrenching.
We do it though. I guess this is another thing that makes Alzheimer's disease, and Alzheimer's caregiving so very different than anything you could ever experience.
If you read the articles listed below you will gain a better understanding of Alzheimer's and dementia.
More Insight and Advice for Caregivers
Original content Bob DeMarco, the Alzheimer's Reading Room