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. Read the rest of this entry
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? Read the rest of this entry
Hang out on a support group page and you’ll hear the word “Journey” used repeatedly by caregivers as a way of describing their experiences while dealing with LBD. Considering most people think of a journey as a pleasant experience, why would caregivers use that term for something difficult and often torturous? I thought about that for some time before finally landing on a possible explanation. The experience of dealing with a disease like Lewy can be envisioned as a journey through the highs and lows of a sometimes hostile terrain. For most, the journey goes something like this… Read the rest of this entry