Thursday, April 28, 2016

Dementia Happened, Ask A Patient

We have a lot of posts lately about your loved one doing something they never did before.

Be it, eating something they never liked before, wearing their favorite coat in the heat of the summer, or drinking their coffee black, when they have used creamer for 40 years.

These things are red lights. Meaning they are things that are so apparent and easy for you to spot.

"Mom loved to cook. Now she can't even make toast right. What happened?"

Dementia happened. That's what happened. I don't care what any body says, this disease effects everyone different, yet so many the same.

What I mean is if you have lewy body, or vascular dementia, or Alzheimer's...whatever diagnosis your loved one is diagnose with, we all deal with many of the same symptoms.

Dementia is as we know the "umbrella" and other types such as Alzheimers, Lewy Body, EOAD, Vascular Dementia are just types of dementia.

In other words, we all suffer from the same thing, just different causes. Vascular dementia is most the time attributed to lack of blood flow to the brain, hence the term vascular.

When your loved one does something, no matter if is putting cream & sugar in their coffee, or forgets the first thing about cooking, we must understand these are symptoms of the disease and nothing is going to "fix" it.

In the whole scheme of things, I like to tell people as alarming as it is Dad now drinks his coffee with cream, when he never did...or Mom puts the dishes where the pans go...all these are little intricacies that are going to happen, yet aren't really the end of the world.

If you are new to this dementia thing, it's a shock that Dad no longer wants to have anything to do with fishing. This to you is a real game changer, but in the whole scheme of things it really isn't.

We think of it as they are progressing, and they very well could be. But sometimes it nothing more than reverting back to what they did in their childhood, or an earlier part of their life.

Many times our loved ones won't recognize you, let alone know you are their spouse. They have no idea that they have any kids, let alone three.

These things, the little things, and the huge differences you will notice are going to happen. Get ready. Cause if they haven't, they are coming.

I can tell you from experience, I don't hoard or hide anything. What I do is put things where I think they belong.

Remember that next time you find silverware in a sock drawer, or milk in the cubbord.

90% of patients are not hoarding things, they are simply putting them where they belong. I have challenged many folks on this. To me, a patient would have to consciously have to realize the item they want to hoard, or hide, and then do that very same thing over and over.

Patients just can't do that. They don't have the ability to to think "I will hide this for later." There is no later for them, thus they don't consciously hide things to retrieve later.

In my opinion, which I can be wrong, but what I do is not hide anything. I simply put things where they go. Sometimes it's right, most generally it's not.

But if I did not do what I am doing right now, explaining that I indeed put things where I think they go, everyone would indeed assume I am indeed hoarding things, or hiding things.

That isn't the case with me, and my guess is most of the time it isn't with your loved one either. We have been told all our life about people hiding things or hoarding them when they get older.

What I am saying is just because this was instilled in you for your entire life, does not mean this is what is actually happening.

I am not an expert in dementia symptoms or what one patient may do versus another. But I can tell you this, I am a patient and as a patient I have sat on my hands in many a symposium chomping at the bit, not being able to get up and explain that what was just witnessed there was, to put it nicely absurd.

I hate it when non-patients are the experts. I always have, I always will. If you car breaks down, do you call a mechanic, or would you call your doctor?

If your standing in a gymnasium, that doesn't make you a basketball player. If you want information on the weather, you don't watch the History Channel.

In other words, if you want information about dementia why would you go to a person who has never had dementia? I am not saying doctors don't know what they are doing...I am saying there are people out there who claim to have all the answers as a caregiver.

They don't. No one does. This is a huge money making business this dementia thing.

Like I said, there's big money in dementia. And people pay sometimes thousands of dollars to get certain speakers in. And not a one of any of these "experts" have dementia.

Not a one...so be careful who you put your money on. There are very good people out there, doing very good things. But there are and there always will be charlatans.

Someone making a buck off of someone else's demise. Just listen to your heart, and perhaps a patient now and then. I will guarantee you won't go wrong...

©  Rick Phelps  2016