By Rick Phelps
"This isn't what I expected." Many of us have said this either to ourselves or out loud.
As a patient, I didn't have any expectations about dementia, because my wife and I were like everyone else. Until this disease comes into your life, you don't give it a second thought.
That is the problem. It's not that people don't care, it's that they are literally oblivious to dementia. It simply isn't something that hits close enough to home to be a problem. That is, until it is a large problem.
I have told many a caregiver to expect the unexpected. In other words, you will not be able to imagine in your wildest dreams what your loved one will do, how they will react, and what this disease will do to them and your entire family.
I have said for years, "have a plan, then have another,” because the plan you have may not work. Something as simple as getting your loved one to take a shower can end up being a nightmare.
Those of you who are caregivers know this. Those who are not will learn. There is no set of rules to go by to be a caregiver. There is no guidebook.
That doesn't mean there aren't any books written on the subject; there are thousands. The issue is that these books are largely comprised of hypothetical situations and how the author would personally deal with them.
That is not reality. One isolated perspective that you read in a book on Tuesday at 3:00 PM is not going to help you one bit on Thursday at 2:00 AM when all hell has broken loose.
Many times I have heard people say that they were born to be a caregiver. Well, that may be, but you certainly weren’t born to be a caregiver for a dementia patient.
Think about what it takes to care for an elderly person. Then think about what it takes to care for a newborn. Lastly, think about what it takes to care for a person who doesn’t recognize you, where they are, or what is happening. Combine all of these and you will have a glimpse of what it is like to care for a dementia patient.
Now back to, “this isn't what I expected.” Expectations are partially due to the stigma of this disease. Most people think of dementia patients as drooling eighty-somethings sitting in wheel chairs and staring out windows.
They do not realize that some patients, especially in the early stages, can still be productive. They do have hours, perhaps even days of confusion. But there are times that you can put four complete strangers in a room and you could not tell which one has dementia just by looking at them, or even talking to them for that matter.
I would love to have a dollar for every time I have heard, “you certainly don't look like you have dementia.”
I always wonder if a deaf person looks deaf. Of course they don't. You can’t tell that a person has high blood pressure, diabetes, chronic pain or depression just by looking at them.
People have been diagnosed with dementia in their fifties, their forties and even in their thirties. It's rare, but it has happened.
I can tell you this, there is not one other disease known to mankind that is close to being like dementia is. There is no cure. It is terminal. There is no slowing the progression, and there are no survivors.
No, this is not what I expected at all. And those who tell you what to expect have no earthly idea themselves.
I have a brain disease. A disease that has taken over the most complex organ in the human body. The one thing I know to expect is, when someone tells me what is happening or what is going to happen, it is an educated guess at best.
I live with this disease 24/7, and have for many years and I have had no idea what to expect. I never have and I never will.