So, ambiguous loss & anticipatory grief… it doesn’t mean that your loved one has to be at end of life stages. I would recommend reading about this actually pretty early on in a dementia journey because there’s a lot of great info. So she talks about a couple of different things. And one is about the concept of ambiguous loss. Ambiguous loss is a term coined by Dr. Pauline Boss. And it means the difficulty is that the person is physically present but psychologically gone, and the relationship that you’ve always known is altered. So this can apply to a lot of different situations. If you have someone, for example, who has an addiction, there is a degree of ambiguous loss there, right? That person has changed and maybe they feel gone to you.
They maybe have not passed away, but the relationship is altered because they are altered. We also see this with anticipatory grief. You can see this in many situations that aren’t dementia. Anticipatory grief is the process of experiencing bereavement in advance of a loss, usually death. It may last for years in families, living with dementia as a function in cognitive decline in caregiving needs to increase during anticipatory grief, especially for care partners. For people living with dementia, they’re constantly anticipating more loss, right? It’s ambiguous because the person is still there, but the relationship has changed and they’re anticipating constant more grief because every time, you know, the person declines a little bit, they stabilize and then there’s another decline. Months, weeks, years later, burnout is very, very real for care partners. You know, when you’re exhausted, but you don’t want to let the person living with dementia down, you may feel angry and frustrated.
You may feel hopeless. Feeling these things means it’s time for you to get help for yourself and for them. And help comes in the form of many different ways. One of these would be getting actual physical care for your loved one living with dementia, getting somebody in the house, transitioning them to a care community, trying respite care, or trying adult daycare to give yourself some space from being the 24/7 caregiver. It also means doing stuff like this, like what you’re doing now, finding resources to learn and to communicate with other caregivers who are very much in your boat or very adjacent boats.