I used to think there was one kind of grief: the kind a person experiences when a loved one passes away. Now I know better.
As an Alzheimer’s caregiver for more than 10 years, I’ve learned about “anticipatory grief.” It’s that sadness you feel when you know a loss is coming. Most times, it’s associated with the loss of experiences. Early in Elaine’s illness, I couldn’t help but think of all the shared events we would miss – a European vacation, anniversary celebrations, our grandchildrens’ graduations and weddings. I’ve called Alzheimer’s disease “death by a thousand cuts,” which makes anticipatory grief something caregivers live with for several years.
Elaine, pictured earlier in her Alzheimer’s diagnosis, and Marty Schreiber, enjoy a supportive family.
At this point in my wife’s Alzheimer’s, anticipatory grief is giving way to what I’ve heard called “unconventional grief,” that is, grieving someone who is still alive. I’m grieving for the loss of a person. My First Elaine is gone; she is still here in terms of a physical body, but in essence, she has left this world. I’m a widower who still has a wife, and there was no funeral to help me process this loss. I work through my grief every single day.
I’ve come to appreciate how far we’ve come to understand grief and grieving through time. Thank heaven we no longer follow Victorian era practices, with widows expected to dress in mourning clothing for two years.
To cope as an Alzheimer’s caregiver, you must give yourself permission to grieve. Surviving the experience may come in different ways, at different times. Seek others to talk to who are in the same situation. Get counseling at the Alzheimer’s Association. Be open to finding joy in your Second Elaine. Accept that you deserve to find joy in life, period.
If you know an Alzheimer’s caregiver, try to understand that your friend or relative’s emotions are in turmoil. Acknowledge the pain the caregiver is experiencing. Talk about the good times. Try to be a good listener.
Grieving is an ongoing process, not a limited-time event, especially when it comes to Alzheimer’s disease.
Thank you to the American Academy of Bereavement for providing helpful suggestions.
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Thank you so much for this, I am seven years into this free fall
I’m sorry to hear, that Becky. Keep listening and learning. Knowledge really is power. And please don’t be afraid to share it with those that don’t understand. We’ll be thinking of you. And remember, we’re in this together.