Friday, February 28, 2014

What is the Difference?



Whats the difference? There is a huge difference. I am talking about the way I am treated, a dementia patient.

The people who know me, are around me treat me as if nothing has changed for the most part. We are for the most part included in anything that may be going on, be it family gatherings, social events and such.

Most tell me when it comes to my cognitive deficits, "I do that. I forget things all the time."

They are trying to reassure me that what I have, as bad as it is, they to have experienced some of it as well. Of course they haven't. But they try to convince me they have all the time.

Then there are those people who don't know me. Aren't around me, never have been, chances are never will be. The difference in these people are their understanding of what I go through also.

They are what I classify as the ones who know everything, but in reality know nothing. I have had total strangers tell me of the hazards of me driving.

Now keep in mind, they don't know me, but they know because I have this disease, there is no way I should be driving.

That is what we call stigma. There is indeed a stigma that goes along with dementia. There are those who think you have to be at least seventy years or older to have dementia.

They picture a dementia patient sitting in a nursing home, staring out the window in a wheel chair with drool running down there chin.

How could you possibly drive? I have had "experts" in the field of dementia tell me this. And I am not talking in passing. This has occurred on a national radio station where the host and the other guests are indeed "professionals" in the field of dementia.

It's a situation where I as a patient will never get them to understand that I am not their Dad, their grandfather, or aunt who is in the later stages of this disease.

All too often we patients are classified as those who have the disease, and those who don't. There seems to be a huge space that not many recognize that some patients can and do still lead productive lives.

Then there are those people who I meet either through my speaking engagements or something pertaining to dementia. Those who for whatever reason will never admit that they or their loved one have a cognitive impairment.

Denial. Not only are they in denial, but they try to put me in that category as well. These are the people I don't have time for. Nothing you say or do will ever convince them of the struggles I go through, and what their loved one is experiencing.

They will have to see for themselves. Some do, some never will. Time is my enemy when it comes to this disease. No patient knows if they have six months, six weeks or six days when all hell will come crashing down.

They for lack of a better term, will slip into the darkness and simply won't ever come back out. This is what we patients live with daily. That is why when someone I'm around anymore who is in denial of some sort, I try to just listen or in fact change the subject.

These people are as defiant as you will ever see. Keep in mind that the people from the "great" generation are as proud and private as you will ever get.

Some of these people, our fathers, mothers, grandfathers, grandmothers, they are not in denial. It is simply the generation that they were raised in.

But, if those who are in denial were half as committed to giving their loved one the care they deserve as they are of carrying the torch of denial around with them, they would indeed be better off themselves as would the patient.

When you are in denial, you take people down with you. If you are a patient the family tells everyone don't dare mention dementia to Dad. If you are a family member, you again don't dare mention the word dementia around these people either.

Everyone loses. I try to surround myself with clear thinking individuals. No one need have the same beliefs I have, but I don't have the time nor the fortitude to be around negative thinking people and those who are indeed in denial.

There are three types of people in my life. Those who know everything. Those who can tell you everything, and those who listen to me...the patient.

Granted, the day will come when I will make no sense what so ever. Sometimes I think that day is already here. But for now, I can explain this disease to both other patients who are just being diagnosed, and to those family members and caregivers who are just starting this journey.

Getting them to listen? Well, that's on them. I will only stop talking when this disease takes that ability from me. Could be in five years, five months, five weeks or five days.

Till then, I will tell you exactly what a patient lives with daily and what you the caregiver can do to make things easier on the patient and yourself.

I am not an expert. But I am a patient...one that will never quit talking about this disease until the very end. While I Still Can...