Friday, February 28, 2014

There is nothing like caregiving for a dementia patient

Vent alert! This post as always are just my thoughts. And today, I am pretty fired up about these so called people who know more than you do about your loved one...

When your car need repaired would you take it to a car wash? When you need information about how to fix a plumbing problem, would you call a dentist?

If you want to know about this disease, why would you ever listen to people who no earthly idea about what they are talking about?

I have seen posts where someone stated we are all caregivers from an early age. Leeanne Chames covered this quite eloquently.

We care for our children since birth, we care for our siblings since we knew the meaning of caring. We care for our parents. Our spouses.

This is all very true. But when it comes to being a caregiver for someone with dementia that alone brings on a whole new meaning to the word caregiver.

This is nothing like anyone has ever experienced. You think that you cared for a loved one in the final stages of cancer, so how hard can this be?

There in no comparison. None. I am not diminishing what a cancer patient goes through, or say someone on dialysis has to do. But until you have began the journey of caring for someone with dementia, you will not know and cannot possibly understand what it entails.

This disease came into my life about five years before my diagnosis. Those were five, long hard years for me. And me alone. No one would listen, everyone just kept saying, "It's normal to forget things."

What people fail to realize, and you never will know until dealing with this disease is memory loss is but one part of what is going on.

It's what everyone talks about, how their loved one forgets this or forgets that. But until you are a full time caregiver for that person, you haven't a clue.

Remember this the next time a sister, or brother, or friend tells you how to deal with a situation with this disease. They mean well, but have no idea what they are talking about.

Know this, I have had the privilege of being around some very so called important people in the dementia business. And that's what it is, a business.

A very big business. But I can tell you without hesitation some of them should stick to what they know, cause it isn't caregiving. And it's not because I say so, I am nobody.

But there is some common sense that goes along with this caregiving thing and to be blunt some don't have any.

I posted a week or so ago about "Where's the Manual?" I received many personal messages about manuals that they some have seen that work very well for them.

My whole point was missed. Of course there are manuals about caregiving and this disease. The point I was trying to make is some of them aren't worth the paper it took to print them.

You cannot have a set of rules when it comes to caregiving. I say again, you cannot have a set of rules, when it comes to caregiving.

IT doesn't work like that. To think this way one would have to believe that every patient reacts to what the "manual" says and to do what is suggested will work.

There are no two patients alike. Just as there cannot possibly no one manual that will work for all caregivers.

I think this is something that was born out of the Alzheimer Association. The same organization that will not accept patients in a support group unless they are of a certain age.

I'm not kidding. Unless you are a certain age, you cannot attended some group meetings that they put on.

You will never hear me bash the Alzheimer Association. What I am telling you is fact. It's just the way they do somethings.

The Alzheimer Association was a God send to us. They gave us answer when we didn't know where to turn. But that alone doesn't mean they have the corner market on this caregiving thing.

For two years or so, they have not done in home visits. Comes down to money. And I can understand this. But you need to have priorities and not doing in home visits for example you leave out tens of thousands of people who will not be helped.

So...don't let anyone tell you they know what and how to be a caregiver. Unless they have walked in your shoes, they don't get the opportunity to have an opinion is my thinking.

If someone around you says to do this, or do that...ask them where they got their information. Every answer is the same. "Well someone said that." or " I read it somewhere".

Don't let these so called professionals tell you how to care for you loved one. There is but one manual you need to go my. And that my friends can be found in your heart...