Losing a loved one is never easy. It is said that the hardest thing one will ever endure is burying a child. The second hardest is burying a spouse.
People say it is natural for parents to pass before their children, which I agree with wholeheartedly. I have lost a child.
But, losing a parent isn’t any easier. You can prepare all you want, but it's never easy. Death is something many of us never discuss. It is a taboo in our culture.
When you lose a parent, I think it has a lot to do with coming to terms with the idea of being alone. Who will you look to for advice now? Who are you going to share your thoughts with?
Of course, you are not alone, but when you lose a parent, a special part of you is lost. I was very prepared when both of my parents passed away. They died from cancer, and both were very, very ill. Both passed away about six months after being diagnosed.
Some say that is good; they didn't suffer long. But anyone who has seen what cancer does to a human being would never say such a thing. It was a relief to see both of them pass. My father was in his eighties and my mom was in her early nineties.
Unfortunately, pain management was not a high priority back then, and they both suffered excruciating pain. So, when they passed it was a blessing.
That brings me to my point. With dementia, you cannot see the pain that patients endure, and have endured long before they were even diagnosed. I had issues about five years before my official diagnosis and have had to deal with these things every second, every minute and every day since.
I tell people all the time, there is never a break from this disease. As a patient, I can tell you when you look at your loved one and they seem fine, they are not.
You cannot see the anguish that goes on with dementia. You cannot see the torment we go through. With cancer, you often lose large amounts of weight, your face sinks in terribly, and you most likely are in a great deal of pain.
There is no pain in the traditional sense with dementia. This is very important for families and caregivers to understand: there is no pain.
To say there is pain associated with dementia, one would mean that their brain hurts. It cannot and does not. You will never hear anyone complain of brain pain.
If you suffer a severe heart attack, there will be pain. If you have cancer, there will be pain. If you suffer from arthritis or any other crippling disease, you will have pain.
But this is not so with dementia. The pain that is associated with dementia comes from the symptoms of the disease, not the disease itself. But do not think for a second that dementia patients don't suffer. They experience pain of a different kind.
It is one that you rarely hear about, because not many talk or even think about it.
Our pain is within. It occurs in our minds, our hearts and our souls. I have not gone one single hour in the past ten years without having to deal with dementia. Not one single hour. It is the symptoms that cause us pain, not dementia. So, when you lose a loved one from this horrible disease, know this: they are at peace.
A peace they have not felt since this disease came into their life. They will be missed, of course. They will be grieved, no doubt. But remember this and it may perhaps give you some solace.
In my tenure in EMS and law enforcement, I have seen death up close and personal. I have seen things that are etched into my mind that have been there for years. But nothing I have done has ever or could ever prepare me for what I have been through with dementia.
In my case, I think I am just in the middle stages of this disease. I have my good hours, not good days. I have, like your loved ones, fleeting moments. Simple outings send me into a tail spin. I worry about things way before they even happen. I get upset over the “what if's.”
Looking at a menu in a restaurant, something all of us have done since childhood, now becomes a stressful event. I have long ago lost the concept of time, which we all depend on every single moment, but do not give this ability a second thought.
I miss not being able to read and understand what I have read. That, too, left me many years ago now. What do you do? You adapt or you succumb to this disease.
Yes, you will grieve when your loved one passes. But know this, they will be at peace—a peace that they have longed for since the very day this disease came into their life, and one that you have also longed for them to have. In the end, the horror of this disease will be over for them.
As a patient I have lost many battles with dementia, but I know that in the end I will win the war.
I have long ago made peace with the fact that when my time comes, I will have already lost any memory of my loved ones, who I am, or where I am.
I am looking forward to the day when I will be at peace, but I will continue to fight this disease every step of the way, “While I Still Can...”