The Stages of Caregiving

There have been countless articles written on the stages of decline for those with dementia, but very little given to the stages caregivers go through while dealing with a disease like LBD. Recently, one of my support groups worked together to organize a description of the stages a typical caregiver goes through during the years of caregiving duties. It was difficult to separate emotions from actual stages, but the list below seemed to fit most of the participants. It was agreed that (as with the stages of grief) it’s possible to bounce back and forth between some of the stages and to experience two stages simultaneously, particularly the last two.

Stage One: Confusion

The caregiver knows something is wrong, but doesn’t have a diagnosis yet.

An Attitude Of Gratitude

People often tell me they can’t believe how well I’m handling our situation. This never fails to shock me since I know the real me and the moments I want to run away and never return, but whenever I hear their comments, they cause me to reflect on how we deal with Lewy Body and life in general. I think most of our ability to cope comes from a core belief in an attitude of gratitude that came from my mother. No matter how horrible a situation is, there is something hidden inside that we can be grateful for.

It’s a mind game of sorts, but it works something like this:

Instead of thinking: “Oh no, he needs a walker.”
Think: “Thank goodness there are walkers and wheelchairs to help us.”

Why can’t I stop crying?

Ambiguous Loss and Grief

“It’s odd that I miss my husband so much when he’s still sitting right beside me.”

Sound familiar? If you haven’t felt those emotions yourself, visit an online support group and you’ll see similar statements every day from caregivers who don’t understand why they’re feeling such grief when their loved one is still alive. Psychiatrists refer to this as “Ambiguous Loss” and it’s very common with those who have loved ones with dementia, stroke, or traumatic brain injuries.

When you love a person, you love their thoughts, personality, memories, and the experiences you shared with them. So what happens when all those things are no longer there and you are left caring for the shell that used to contain the essence of your loved one?

Tips For Those Starting This Journey

Recently, I asked an online support group for advice they could give to someone just starting this journey. Below are the tips they suggested:

Dealing with Doctors and Nurses
•Research everything thoroughly, but go with your gut, even if it’s against doctor’s orders.
•It is also good to keep a notebook for doctor’s visits or what meds don’t work well for Lo and the good advice you get from this site that you may need later. Would be lost without my Dr. notes
•Don’t be afraid to question doctors. They know very little about LBD.