Grieving Your Family Member With Dementia While They Are Still Alive

By Lisa Pahl, LCSW

Recently, I met with the wife of a hospice patient. As a hospice social worker, I tend to spend a great deal of my time providing support to the caregivers.

The wife shared with me how challenging it is to watch her husband’s dementia continue to advance.

She told stories and shared pictures of the life they had together. Of the travels and fun they had. The parties and cruises.

“Now, he just lays there in bed. He can’t even talk to me anymore.”

There is so much grief in dementia. We grieve the losses. We grieve the future. We grieve the person they were and how they used to make us feel. This grieving while a person is still living is referred to as anticipatory grief. 

People who love someone with dementia will typically experience a great deal of anticipatory grief over the course of the disease progression. 

If you are caring for someone with dementia, consider asking your physician if it might be time for hospice, as this is an incredible way to increase your support.

We also encourage EVERYONE to consider completing a specific dementia directive form to state your preferences for care should you be diagnosed with dementia. 

And, don't forget the conversations. Talking now before a diagnosis  about end-of-life preferences increases the likelihood that your wishes will be followed. We've created The Death Deck and The E•O•L Deck to help start these very important conversations.