Monday, February 10, 2014

Should support groups separate patients and caregivers?

Separating patients and caregivers in support groups. Does this work? Are you in favor of it?

I see so many different times the "professionals" say this is the only way to actually give support.

When you mix the two, the caregiver/family member will not ask the tough questions that need to be asked because of a patient sitting there.

Having a group with only caregivers? Or one with only patients? The Alzheimer Association does this. Their support group is geared to the caregiver.

Least it is here, at our local health and services dept. where they are held. They also have a curriculum they must go by, designed by the Alzheimer Association.

Let me tell you this, all you need to do is offer some refreshments and a place for support groups to be held and they will run themselves. There is no need to have a curriculum.

But if you are in a group that separates the two, all of this is fine. If it works for you. My question is, if separating the two groups is indeed beneficial, then how come there has been little to know changes in the last ten years when it comes to support for the caregiver, or the patient, for that matter.

I remember when I started Mp, I as told by a few "experts" that having both patients and caregivers on a forum like this would not work.

My response was of course, why not? How can caregivers lean to be better caregivers without the input of patients? How can patients live a better, productive life with this disease when they don't communicate to the caregiver what is needed to be done for them?

There are many groups who do not allow the two to be together. I think this is a huge mistake. There are some organizations that will not allow you to be part of their group unless you are indeed a certain age.

Again, this is absurd, but happens. I have attended group meetings where only caregivers were present and there was a tension. A mixed feeling of emotions.

They looked at me as a patient. Compared me to their loved. Something you simply cannot do. I am me. I am not this disease. This disease does not define me.

I never want to be remember as the guy with the dementia dog. I want people to know that even to this day I can string together a sentence to two. I can have an individual thought.

I can tell you exactly what it is like to live with dementia. Now how can any caregiver do that. How can any caregiver have an answer to why their loved one does the things they do?

That part of this disease can only be told by the patient. Not the doctor, not the health care worker, not the social worker, not any one but a patient.

Yet there are those who want to separate the two, because they may be some tough questions asked.

Let me tell you this, there is nothing tougher than living with this disease. There is no question that I have ever gotten that made me think I wish that would have not been asked.

Every person comes to this disease with a different approach, there are no two patients who are alike. Some may not be able to handle some questions that may be posed.

But should that keep everyone from working together and supporting one another as patients, caregivers, family members, or advocates?

Those who do separate the groups, and if it works for you than that is a good thing. However, you are missing out on a golden opportunity that is limited at best.

I will not be able to do what I do today much longer. There are days I would not be any good to any group. But there are days I can tell caregivers something that they will take home with them, that will indeed change their life.

It bothers me to see the two groups separated. Mostly because I know what is lost. What patients can give to caregivers and what caregivers can give to patients.

We don't separate the two here, and never will. We learn from each other. We are all in this together. We will support one another, regardless of what side of this terrible disease you are on.

Together. As it should be. As it will be. "While I Still Can..."