Understanding grief and dementia

I’ve worked with many different family caregivers, and all expressed that they experienced a roller-coaster of emotions while caring for someone with dementia. Here are some things I often heard during coaching sessions:

• “Certain days I feel down a lot”
• “I am stressed and anxious, I’m a mess”
• “What is this thing I’m going through?”

I told them all the same thing: It’s probably grief.

“Really?” I found many caregivers only recognize they are grieving after they are told this is what is happening to them. “So if no has died, there is no reason to grieve. Right?” Wrong.  When caring for someone you love who lives with dementia, grief is very real.

While the person you are caring for is still alive, the changes in their personality, habits, and memory may make them feel like a different person over time. It can feel as if you’ve lost or are losing the person you once knew well.

What are the types of grief you experience when caring for someone with dementia?

Ambiguous loss: The person is physically present but is no longer the person they once were due to changes from the dementia.

Anticipatory grief:  The loss and grief that we anticipate will happen in the future because of our knowledge of the diagnosis and how it is likely to progress.

Compounded losses: Compounded losses are multiple losses building up over time. With dementia, one loss cannot be accepted or resolved before the next one occurs.

Disenfranchised grief: The grief which is hidden. It is not validated, appreciated or understood by others. It is not publicly acknowledged or socially shared, often due to lack of awareness or the stigma associated with the diagnosis.

Heartfelt sadness: Sadness for the losses experienced by the person with dementia, longing for things to be different, knowing the losses will continue.

Grief for personal losses: What the caregiver gives up in order to fulfill the caregiving role.

Worry and isolation: A sense of uncertainty about how things will turn out, combined with feelings of isolation often experienced throughout the dementia can lead to strong feelings of loss.

Famed grief counsellor and lecturer Earl Grollman, believes: “Grief is not a disorder, a disease or sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve”.

It is important for you as a caregiver to acknowledge your grief and claim the grieving process in your own way.

I recommend you seek assistance from a health care professional or grief counsellor if your grief is persistent and keeping you  from enjoying your everyday life.