By Ilean Zamlut
My mother was diagnosed with Alzheimer’s in 2012. At the time, my father and I were given a roadmap of what to expect and how the journey, as a family, would look. We were made aware of all the hurdles and how to adequately prepare for each one. What no one prepared us for was the concept of anticipatory grief and how it would both help and hurt us.
Anticipatory grief is the feeling of grief or loss someone might feel before the loss actually happens. From our experience, here are three tips for your care journey.
- Allow yourself small chapters of grief. This is a long process that has many steps and changes along the way. This concept of “pre-grieving” my mom came in stages. Since Alzheimer’s is known as the longest goodbye, we grieved each loss as it came. We grieved the loss of her ability to write even the most basic list, to shower on her own, have a coherent conversation and express any emotion physically. At each stage, my father and I would repeat to ourselves that “this was the process’ while each of us mourned the stage in our own way. My dad reduced his work commitments to dedicate most of his time to his wife of 50+ years. This was how we grieved my mom, even though she was still here with us. These small chapters of anticipatory grief, I think, helped to soften the blow of what was happening to us, and especially to my mom. The grief was not sudden or jarring. It was little incremental losses that we had to say goodbye to, over the course of 12 years which felt helpful and manageable.
- Seek help to understand anticipatory grief and how to work through it. Hospice was a tremendous resource, providing names of therapists that are specifically trained as grief counselors. I also became active with the Alzheimer’s Association who helped us to manage challenges and access local resources. If you are a caregiver, I encourage you to call their 24/7 Helpline at 800.272.3900.
- Show yourself grace and know that you are doing the best that you can. Grief looks differently for everyone so don’t compare your grief expectations and experiences with others. This last year has been hard. The losses have come faster; the ability to communicate, the ability to walk and the ability to even stay awake for more than an hour at a time. She seems further and further away with each passing day. These losses don’t feel incremental, helpful or manageable. For me, this is where the anticipatory grief has been hurtful. I find comfort in knowing that nothing has been left unsaid but, I also wish that her suffering would end, knowing I have said my goodbyes. This anticipatory grief comes with tremendous guilt. What kind of daughter am I to wish that for my mom, knowing what it means to have her suffering end? Shouldn’t I want to hold on to her forever? After many conversations with therapists and friends I have come to understand that I am ready for her transition because we said our goodbyes a long time ago.
What most people experience in a flash, we’ve been experiencing for 12 years, and it has a name. While I may have felt guilt initially, what I know now is that anticipatory grief is normal and natural and can be a gift. Goodbyes don’t have to have a timeline, they come as we need them, maybe even before the actual physical loss has occurred.
If you or a loved one needs help, call the Alzheimer’s Association 24/7 Helpline at 800.272.3900 or visit alz.org.