You’re probably grieving, but don’t realize it

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Dementia By Day Podcast Season 4

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*Content warning: this is probably a tear-jerker, just because we’re talking about grief and loss.

When I started working in this field, I recognized that I’d be dealing with a lot of death and dying, and, therefore, grief. I wrongfully assumed that the only challenging part of the job would come into play when someone died. Quickly, I found this to be far from the case.

I realized quickly that many of my residents’ family members were grieving, even if their loved one was still walking, talking, making friends, and being active. Now, years later, I host support groups and workshops with care partners all over the country. I recognize grief in a way that I didn’t before.

Anticipatory Grief

Anticipatory grief takes place when you feel that a loss is coming, and you are already grieving this loss. This makes a lot of sense in dementia caregiving: you see the small losses over time, but you know a larger one is coming. This happens with many people caring for a loved one who is sick. 

Ambiguous Loss

There is also something called “ambiguous loss.” Dr. Pauline Boss, a psychologist, describes ambiguous loss as knowing that, while the person is physically present, they are emotionally and psychologically altered. Your relationship with them has changed, and that presents its own form of loss. Unlike other diseases, where you can sit and talk to your loved one about how they feel, dementia presents a different sort of situation. Now, you’re the one feeling the loss. In a lot of ways, your loved one living with dementia is probably unaware of how much they’ve changed. 

This is why it’s so important to give yourself the space and the time that you need to grieve in a way that works for you. Recognize that you may be experiencing signs of grief or ambiguous loss, and that this is okay and a very normal experience. 

I recommend Dr. Anne Kenny’s book, “Making Tough Decisions about End-of-Life Care in Dementia” as a read well before it’s time to actually make those decisions. She is incredibly compassionate and writes about legal and financial issues, as well as grief and ambiguous loss.

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of two published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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