Coping with Ambiguous Loss Caused by Alzheimer's

Has your loved one with Alzheimer's changed so much that you barely recognize them anymore? Is it hard to reconcile the person sitting next to you with the person they used to be before they got sick? Do you find yourself grieving the parts of your loved one that no longer exists?

If any of these questions resonated with you - you are probably dealing with ambiguous loss or ambiguous grief. Ambiguous loss occurs when there is a loss without any closure. This is common when caring for someone with Alzheimer's because the person declines to a point where they are no longer the same person you have always known. But since the person is still alive, there is no sense of closure surrounding the loss.

My experience with ambiguous loss

I experienced ambiguous loss when my mom was diagnosed with early-onset Alzheimer's. As the disease progressed, my mom became a person I no longer recognized.

While she had always been a social butterfly, she became very socially withdrawn. While she had always been sweet and warm, she sometimes became agitated and suspicious. My mom also lost the ability to do many things we once enjoyed doing together, so our relationship changed significantly. Because of this, I missed my mom immensely. I missed her while she was still sitting right next to me.

When you're a caregiver coping with ambiguous loss

When you lose someone, you have a desire for some form of closure. Your search for a reason or explanation for the loss and want permission to move on. But with Alzheimer's, there is no closure because you still have to care for the whole person. Meanwhile, their physical presence is often a constant reminder of all they have lost and will continue to lose as the disease progresses. You cannot just move on with your own life.

There is no way to escape the pain of ambiguous loss and the grief that comes with it, but I have found a few ways to cope. First and foremost, I think it's important to acknowledge the loss and the grief you feel. Pretending it's not happening or ignoring the intense sadness you think may be easier in the short term, but it will only hurt you in the long term and prevent you from healing. Talking to someone or journaling about the things you miss about your loved one can be beneficial. It is helpful to process the loss and validate your feelings of grief.

Put a voice to your feelings

Although your loved one is still alive, parts of them have already died. It's okay to acknowledge that you miss those parts of them and want to hold onto those memories. In addition, talking about the things you miss about your loved one and remember who they were before they got sick can help keep their memory alive. It can also remind you of your love for your loved one when caregiving becomes more challenging.

Finally, finding ways to honor the best parts of your loved one—the things you miss about them the most—can also help keep their memory alive and remind you of the love you share. You can try making their famous recipe or participating in their favorite hobby. You can watch their favorite show or listen to their favorite music. You can keep a framed photo of your loved one from before they got sick and talk to it when you're feeling sad. It may feel strange, but it can help you keep a sense of connection to your past loved one. You can imagine what you would say to your loved one about what you're going through if they were to come back for a day. Or better yet, imagine what your loved one would say to you.

Coping with ambiguous loss

It's devastating to watch your loved one decline and change so much. There is no way to avoid the pain of ambiguous loss. It's important to acknowledge and talk about your loss and the grief surrounding it. Keeping the best parts of your loved one alive and finding ways to honor them can help. It won't give you closure, but it might give you the strength to keep going.