There is no getting away from it, battling the monster, Alzheimer’s disease causes grief on a number of different levels. It’s extremely complicated, but it’s also necessary to acknowledge and work through.
Alzheimer’s related caregiver grief begins long before the affected person gets near death. That in and of itself is problematic because you may feel guilty for grieving when your loved one is still alive and maybe not even near death as yet.
The first thing to remember is that grief is not just related to death, it is related to LOSS, and as the disease progresses it is clear that you are experiencing some significant losses. You may grieve the loss of the original relationship. Roles are often reversed or at least revised. Children and grandchildren take on the role of parents. Sometimes spouses, who were once on equal footing- slowly see a metamorphosis whereby one takes on a more protective and “in charge” role. While the affected one, in the initial stages, may or may not readily accept the change in roles. This loss of relationship as you know it is reason to grieve. Yes, your loved on is still alive, but it’s not the same.
I remember crying on Mother’s day and feeling horribly about it because my mother was still alive. I’m ashamed to say it, but that’s not the mother I wanted. I WANTED MY MOTHER. Yes, I was grateful that she was still alive, but I wanted her alive in her fullness. I wanted her to be able to laugh with me. I wanted to see that twinkle in her eye and hear one of those quick little quips. I wanted us to cook late into the night and talk later into the night. So, for years, I grieved the loss of our relationship while she was alive. And honestly, I beat myself up a lot because I didn’t understand it.
Please, give yourself a break. If you can understand that grief is related to loss and not only death, then you can give yourself permission to grieve the losses that you are experiencing. I would say this though. Try to strike a balance. Give yourself permission to grieve, which is normal. At the same time, be grateful that you do still have your loved one, even if it’s not on your terms.
How to grieve while your loved one still lives
- Take time to explore your feelings. It’s okay to cry and be angry.
- Understand that what you are feeling is normal.
- Talk about what you are feeling with a trusted friend or counselor. Consider keeping a journal.
- Know that your grief won’t end per se, it will however change faces as the illness progresses. Give yourself time.
- Celebrate the positive and hold on to your good memories
Most of all be patient with yourself and know that even if your loved one can’t say thank you. Your gift of caregiving is appreciated.