Tuesday, November 24, 2015

Dementia, Expect The Unexpected

"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 we were like everyone else, until this disease comes into you 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 is a problem, until it is indeed a problem.

I have told many a caregiver to expect the unexpected. In other words you will not be able to know what is coming in your wildest dreams when it comes to 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 book.

That doesn't mean there aren't any books written on the subject, there are thousands. The issue is these books are largely comprised of situations and how the author would deal with them.

That is not reality. What you read in a book on Tuesday at 3:00pm is not going to help you one bit on Thursday at 2:00am when all hell has broken loose.

Many times I have heard people say they are born to be a caregiver. Well, that may be, but not a caregiver for a dementia patient you're not.

Think about what it takes to care for a elderly person, then think about what it takes to care for a new born, then think about what it takes to care for a person who don't recognize you, where they are, or what is happening.

Then combine all of these and you will have glimpse of what it is like to care for a dementia patient.

"This isn't what I expected". That is because of the stigma of this disease for one. Most people think of dementia patients as someone in the eighties, sitting in wheel chair, staring out a window and drooling.

They don't realize that some patients especially in the early stages can still be productive. They do have hours, 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. Neither does a heart patient look as if they are having a heart attack.

People have been diagnosed with dementia in the 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.

You will see and hear things you can't even imagine when dealing with a dementia patient. And this can be in the very first hours they are up in the mornings.

No, indeed, this isn't what I expected. For those who tell you what to expect, have no idea what it is to begin with.

I have a brain disease. A disease that is 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, its an educated guess at best.

I live with this disease 24/7, and have for many years and I have no idea what to expect. Never have. Never will...

© Rick Phelps  2015