Last week, our guest blogger, Lisa Cooke, explained ambiguous grief and how it affects the LBD caregiver. If you haven't already read it, go back and read it now, before you read this. This week, Lisa expands on her list of ways in which a caregiver can cope with ambiguous loss and grief.
Prepare for the future. Use the grief to spur you toward taking care of legal issues, such as power of attorney, updating wills and other things to secure the future for both you and your loved one. If your loved one is able, discuss end of life issues like if he wants a feeding tube when he can no longer swallow. These questions are uncomfortable, but it will make those decisions much easier when the time comes if you know his wishes.
Educate yourself. Learn everything you can about the illness and the treatments available. Knowledge is power and caregivers need all the power they can get.
Join a support group. Everyone needs someone they can talk to. If there are no local support groups you can join, find an on-line group. There are several available and they offer not only support, but information. Most of what I’ve learned about LBD I learned from other caregivers. (There are some links for caregiver groups on Lisa's Lewy Warriors site under “Helpful Links and Groups” at the top of the page.)
Get help and continue to live your life. This is a tough one, right? Won’t other people think you’re horrible if you hire aides and get some time off? First, no they probably won’t because they don’t know what you’re doing anyway. And secondly, if they do think you’re horrible, who cares? Your life is just as important as your loved ones. That doesn’t mean your loved one doesn’t need your help, it only means that you need your help too. According to Healthline, half of people providing care for someone with dementia becomes seriously ill or die before the patient does.
Don’t let yourself be in that 50%. If something happens to you, who will oversee the care of your loved one? Hire some help. Take a break when you need it or, better yet, before you need it. You can’t put your life on hold for what may be years of caregiving responsibilities.
Find Moments To Enjoy. Try to find things your loved one can enjoy, whether it’s watching movies, looking through photo albums, or enjoying a sun set. A close friend who is suffering from Parkinson’s Disease told me she looks for an excuse to laugh out loud every day. That’s some great advice.
Accept that your relationship has changed. Instead of thinking, “My loved one is either here or gone,” think, “My loved one is BOTH here and gone.”
Ambiguous loss is particularly difficult when the loved one is your spouse. If you are caring for a spouse, not only do you grieve the past you shared, you grieve for the future you will never have. For most, a caregiver’s spouse is the one person they go to when they’re upset or needing support and advice. Your spouse is the person who holds you when you cry. What are you supposed to do when they are the reason you’re crying?
One caregiver said she was suffering extreme grief with the “loss” of her husband until she accepted the fact that relationship no longer existed. He no longer remembered who she was.
“I was trying to hold on to something that was gone.”
She moved into another bedroom and removed her wedding ring. “From that point on,” she said, “I became his caregiver instead of his wife.” For her, withdrawing from the romantic relationship she once had with her husband was the only way she could cope with the difficult duties of caregiving.
Another woman said she allowed herself to grieve whenever her husband advanced to another stage. “I lit a candle and cried each time he had a major decline,” she said. Accepting that her grief was real and needed to be acknowledged helped her continue forward.
•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.
Some more excellent advice can be found on the Alzheimer’s Association website. http://www.alzheimer.ca/en/Living-with-dementia/Grieving/ambiguous-loss-family
Thank you, 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.