Wednesday, September 2, 2015

The Truth Of A Dementia Diagnosis

What is going on? Why is your loved one acting like they are? What can I do to help, or stop some of these outbursts? What am I to do? 
We get many questions like this, and they are all very legit questions. We all want answers. 
Every speaking engagement I have ever done have all in one very important way been the same, people come there for answers. 
The story I tell, of our struggles since this disease came into our lives does make them think, which is the intent. But, way before my part of the program even begins, people, dozens and dozens of people stop us in the convention center, the hotel lobby, the restaurant, or when I am outside with Sam, to ask questions.
I found in doing these speaking engagements that most, not all, but most people just want to vent. They want to tell us what they are going through in hopes that they find out they are not the only ones living this nightmare.
The truth is, I don't have any answers for these people. And what happens is I listen. That's what they want. They want to tell their story. They want to let me know that they are trying their best, but its just not good enough.
Once I was doing a speaking engagement in Illinois I believe it was. We were standing in the hotel lobby talking with some friends and I seen a couple out of the corner of my eye that I knew wanted to talk to us.
We finished up our talk with our friends and were heading out for some dinner, when they stopped us and introduced themselves. 
They had come from Las Vegas, NV. to be there for this conference and could not wait to here my story. They had came for a wedding as well but came a few days early to hear me speak. I asked them if they would like to sit down and talk for a bit, to which they were thrilled. 
I won't go into detail about what we discussed. But we sat there and for close to two hours talking, listening, and just letting them vent. 
The gentleman had dementia, early stage and what they were wanting is answers. Like everyone. This is so sad, the fact that ten out of ten families who have dementia come into their lives have not one idea of what lies ahead.
How do I know this? Because we were one of those families. I was diagnosed and sent on our way in all of seventeen minutes. That is the title of the first chapter of my book, "While I Still Can...". Seventeen Minutes. 
It never ceases to amaze me how one can get a diagnosis of dementia, a disease to which there is no cure, a disease to which it is progressing, and there is nothing to slow the progression, and last but most important it is terminal. 
There are many things that happen when one is diagnosed with dementia. Memory loss is the one everyone thinks about, but there is much more to this than just memory loss.
I often think if it was only memory loss, it would be much easier. This disease takes away your ability to reason, your ability to make decisions, you ability to have common sense. 
What used to be things you would never give a second thought to are now things that you constantly struggle with. The things for example you used to be able to do. 
Could be the simplest of things. Sewing, craft making, wood working, reading, going to a restaurant, getting you hair done, washing the car, going to church, or just carrying on a conversation.
All of these things, and tens of thousands of others we do without hesitation, we have done our entire lives, but suddenly, without notice these are all taken from you.
Is it any wonder one suffers from depression, anxiety, and stress with dementia? There is a whole host of things that go hand in hand with having dementia. 
And the sad truth is, no one tells you this at the time of ones diagnosis. Most you will hear is "You have dementia, probably of the Alzheimer type."
The truth of the matter is there is not one doctor or one neurologists who knows what to tell you, so they tell you nothing. They know you don't know enough about dementia to ask at the time, so they are basically off the hook.
It appalls to know that these doctors know exactly what the patient is in for, yet say nothing. Why? Because what if they are wrong? They all are scared to death of being sued. And there is no way of being 100% sure of a dementia diagnosis without a autopsy of the brain. 
So, they are vague. They don't tell you anything, unless you ask, and your not in the frame of mind to do that.
Every doctor who has ever diagnosed someone with dementia should be ashamed of themselves. Because I can tell you this, they don't give you any answers. They don't tell you what lies ahead.
This is where the fraud of dementia begins. From the time you or your love one is diagnosed it is one fraud after another. Unless you are fortunate enough to have a doctor who will tell you the truth, or fortunate enough to find us here at Memory People™.
We will tell you what we can. We don't sugar coat anything here. We tell you what you need to hear, not what you want to hear. You can be sure anything you see here on Mp is not conjecture or not something that someone just thinks up.
I started this site with that premise in mind. Why? Because I could find it no where else. Sure there are sites that profess to give out information about dementia, but they don't.
When you find a site that won't even use the real names of the people there, that to me is a problem. When you find a site that is for caregivers only, if that works for you than that is fine.
To me, you are only getting one side of the story. The caregivers. How can a caregiver get better at what they do, if they don't include a patient into the equation?
We have both here, and always will, because it works. So, in closing, know this...you cannot change what is coming. The very best you can do is have a plan, then have another. Deal with situations as they arise. What works today may not tomorrow.
Celebrate you victories and learn from you defeats. There will be many defeats.
If you can answer these three simple questions, questions that you will never hear from a doctor then you are doing the very best you can.The three questions are:
Are they safe?
Are the pain free?
Are they content?
If you can say yes to these three questions to a degree of certainty then you are doing the very best you can. Getting the person on the right meds for the symptoms is something else that one needs to know, but is seldom told.
I could go on and on about what is not told to you from a doctor. But you have to get educated about dementia. You have to understand the disease before you can hope to help your loved one.
Sadly, too many times, know one is told what to expect, let alone what to do. Everything I post here on Mp is indeed the way a dementia patient is. How do I know this? Because I too live this every single day.
I am but one patient, but when I speak of what I go through, you can rest assured it is not something I have read somewhere. It is something that I deal with, and share with you in hopes it may help you be a better caregiver, or at least give you a glimpse into the mind of a dementia patient. 
© 2015 Rick Phelps