I know I promised you a blog on alternative methods of handling pain but life intervened. It will come eventually. However, you have a treat, in guest writer, Lisa Cooke. This week's and next week's blog entries were first in her blog, Lewy Warriors. Lisa is an active LBD caregiver--and a wonderfully expressive writer. We are grateful that she allows us to repost an occasional blog of hers here.
“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?
The situation is even more complicated when dealing with an illness like Lewy Body Dementia because there are moments when the personality claws its way back to the surface for a brief visit, teasing the caregiver with memories of the way things used to be. The end result is crushing grief for the caregiver even though their loved one is still alive.
Grief is a complex process each person must go through in their own way and in their own time. It would be very difficult to find someone who hasn’t experienced grief of some sort in their lives, but ambiguous loss throws a curve that is hard to explain to an individual who has not experienced it.
Ambiguous loss is open ended.
There is no specific beginning and no specific end. It starts gradually as your loved one slips away in little increments. It may begin one day when your loved one can no longer discuss a movie you just saw, or you suddenly realize you can’t go on a trip to the mountains because your spouse can no longer hike. Maybe you find yourself afraid to go to work because you’re not sure if it’s safe to leave your loved one alone for that long.
For some reason you can’t put your finger on, you feel sadness as though something is missing, but that makes no sense, right? Your loved one is still here. He isn’t in the hospital and he still answers questions when you ask even if he rarely initiates a conversation.
The process occurs so slowly, you don’t see it creeping up on you until something triggers a flood of tears, or at least, a feeling of deep sadness. It might be a commercial on TV showing a mother and daughter laughing with each other. It might be the older couple sitting in the booth next to you in a restaurant, sharing a meal and a smile. Whatever the trigger, you find yourself slammed with grief that your friends can’t understand.
“You’re so lucky he’s still with you,” they say, not understanding that in actuality, he isn’t.
They don’t understand that you’ve found yourself in a relationship where all the rules have changed.
Your parent or spouse is now your child.
Unlike a typical death, ambiguous loss last months or years with no end in sight. The caregiver cannot begin to heal because the wound is torn open each day. The relationship the caregiver had with their loved one no longer exists, but they can’t simply walk away and start over because the physical body is still alive and needing care.
According to Paula Spencer Scott, author of, Surviving Alzheimer’s, “Dailey care isn’t the worst part of dealing with Alzheimer’s or other dementias, grief is.”
The Visiting Nurse Service of New York recommends 5 things you can do to help cope with ambiguous loss and grief. Lisa used their list as a starting point for the suggestions that will be in next week's blog. Next week she will expand on the following:
•Realize that your grief is real and is experienced by most caregivers.
•Accept and try to identify the new parameters of your relationship with your loved one.
•Allow yourself to grieve even though your loved one has not passed away.
•At least once a day, look in the mirror and say, “My life is important too.”
•Think, “My loved one is BOTH here and not here.”
•Find an excuse to laugh every day, even if you have to watch silly internet cat videos to do it.
Thank you again, Lisa, for allowing us to share your blog.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.