Monday, January 20, 2014

I Have No Answers, We need a Fix

I get so emotional with some of the posts here on Mp. The family/caregivers that have to deal with total chaos day after day, hour after hour.

There is never a break, for them or the patients. I so wish there was an answer here.

I see in the posts the frustration of some, which in turn often leads them to more frustration and then wanting forgiveness for that very frustration.

It is not unusual to be frustrated, beaten down, felt as if you are nothing more than a door mat of sorts.

Having to listen to some of the most vile things one could ever imagine. And then all you get is, "Well, remember it's the disease."

We say that here so very often cause it is indeed true. Common sense tells us our loved one would never act or lash out as they do if not for the disease.

But at three in the morning, after being up all night, and having to cope with the absurd things that come along with this disease, knowing or hearing that it is the disease that causes this is little to no consolation.

What we are looking for is a fix. We patients want something that would at the very least make our lives tolerable. The family/caregivers want to be able to cope with what happens day in and day out.

Neither of these things is possible. I am myself now into the mid stage of this disease. There are days, hours, that I simply have no idea what is going on.

I can't engage in conversations. I can't remember anything. I have no recollection of what happen an hour ago let alone yesterday.

We both, caregivers and patients are in need of answers. Indeed of a fix if you will. But right now, there simply isn't one.

I so wish I could tell the ones who are new to this disease that things will get better. I can't, cause they won't.

You will have good times. Not good days. There will be fleeting moments where you will once again see the loved one you have known forever.

These moments won't last. All I can tell you is relish them when they happen. The next moment, could be the very last.

I have no answer to as what you can do to bring back some sanity in your home because of this disease has now taken over. Chaos. That's the way I explain it to many.

Total and complete chaos. And just when you think you may have some sort of handle on things, something else occurs. It never ends. It never will.

Thinking it will get better is nothing more than a form of denial. I pray for each and every member here daily.

I pray for those who have not found us yet. I know how bad it is for you as caregivers, cause I know how bad it is for me as a patient.

Someday dementia will be only something we talk about. It will be eradicated just like AIDS was in the eighties.

When? That is the million dollar question. Not in my lifetime. I hope our granddaughters never have to worry about dementia. That is my hope. Is it a reality? Who knows.

Know this, in your darkest hour you are not alone. I am sorry that everyone here must endure this horrible disease as a patient, family member, or caregiver.

Someday. Till then we must carry on. And help one another through these trying times. As a patient I too at times feel defeated. All I want is for this nightmare to end.

But somehow I put one foot in front of the other, knowing that when the day comes I can no longer do this, my dear wife, family and friends will be there to see I go through this with some dignity.