The Complicated Grief of Dementia
By Pam Leonard, LBSW, CDP
After my grandmother passed away from Alzheimer’s disease, it took two years for me to be able to cry and mourn her death. Before I could really feel the loss, I needed time to replace the images of her suffering with memories of happier times with her. This grief was different from that I'd experienced with other loved ones' passing. For me, it raised the question: What is healthy grief after the loss of someone with dementia?
Working with families affected by dementia, I have I heard caregivers share similar sentiments. “You know I really lost my wife two years before she died,” one caregiver told me. And the experts agree that memory diseases present loved ones with serial losses.
November is Alzheimer's Awareness Month and it is a good time to remember that family members of those afflicted by dementia often go through a long and complicated grieving process. “Alzheimer's disease and other dementias are unique disease processes in that the person with the disease dies what is referred to by Alzheimer's families as "two" deaths: the slow psychological receding of the person they know over years and their eventual physical death,” Dr. Kesstan Blandin writes on the website dementia.org.
Watching the decline of a loved one over the years can be extraordinarily painful for caregivers, and they can be affected in profound ways. Caregivers may experience many types of loss: the loss of their loved one’s companionship, the loss of a partner’s help in making financial and personal decisions for their shared life, the loss of physical and emotional intimacy, the loss of a loved one’s humor and the loss of a shared reality.
At the same time, caregivers are devoting more and more of their time to the care of their loved one and less time to simply spending time together. As their loved one gradually loses the ability to function independently, caregivers may increasingly feel that the person they love is slipping away. For caregivers, the process of saying goodbye often occurs slowly, a little bit at a time.
Dr. Blandin lists specific strategies for those coping with the unique grief faced by caregivers of people with dementia. They include:
- Engage with a community of other Alzheimer's families, in a local support group, online or both. Support groups provide an opportunity for healing, Dr. Blandin writes, in the company of “people who understand your position from the inside out and do not need you to find words to describe what cannot be articulated.”
- Grieve in your own way, whether "with a support group, being near the ocean or going to church.” There is no “right” way to grieve, Dr. Blandin writes. "Some people need to cry, some need to revisit happy memories, some need to pray, some express grief creatively and some need to be active and feel useful.”
- Dr. Blandin also recommends meditation and mindfulness techniques. “It may sound odd that a powerful tool is to learn to be present, tolerate and accept the grief. But it's important to understand that dementia grief simply is a part of your life," Dr. Blandin writes. Grief is painful because you loved someone - and that's normal. "There is nothing to resolve, nothing to fix, nothing to do with the grief itself, except to recognize the impact on you.”
CJFS offers a free monthly support group for caregivers of people with dementia. The group meets the 3rd Thursday of every month from 1-2pm, and all are welcome. The Licensed Clinical Social Workers of CJFS also provide individual and family counseling for people of all ages and income levels. Contact Stu Jaffe at firstname.lastname@example.org or 205.879.3438.
Pam Leonard is program director for CJFS CARES, an engaging respite program for those affected by memory and movement disorders. To learn about CARES, contact email@example.com or 205.960.3411.