Grieving is an odd process, especially in American culture, especially if you come from a family with an eclectic cultural and religious background who has no faith-based practices or community. We have no cultural norms about grieving other than keep it to yourself and get over it.
With dementia, the anticipatory grief is tremendous, experiencing the loss of your person little by little over the years. I’ve written about this before (click on the ‘anticipatory grief’ tag…). Now, thirteen years past diagnosis, we are still grieving the losses but also so conscious of the need to keep living in the moment.
We’ve had a few friends pass in the last year so we are joined by people around us in a different sort of grief. No matter the age of the deceased, whether 55 or 86, and no matter the length of illness, the surviving partner goes through their own unique silent whirlwind of grieving. They all are doing ‘it’ in their own way.
The book, It’s OK that You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand, by Megan Divine, has a great list of how friends can support the grieving person.
The list looks familiar to me as it is also a good list for supporting people who are in our situation – partners and other family and close friends to a person with dementia.
1. Grief belongs to the griever. It’s important not tell them how to grieve or live with dementia. They are experiencing their reality and it’s important to honor and respect that. You do you. Let them do them. There is no ‘should’ with grief – we all experience it individually. Within the family and close friends, it shouldn’t be a competition, everyone should have the space to grieve as they see fit and not conform to the expectations of others. We are all losing different things with respect to our relationship with the person we are losing.
2. Stay present and state the truth. It’s hard for some to avoid saying things about the past or future. We don’t know the future and the past is gone. In this category, I would also put the comments about how good he looks and how fine he’s doing. Assuming that he’s fine totally misses our reality and invalidates our experience. Even if you don’t see how he’s not fine, saying that just tells us that you don’t see the present truth of the situation.
3. Do not try to fix the unfixable. We had a caregiver who kept suggesting that the dude should eat more avocado and take fish oil and do that and do that and he’d get better. We kept that person around much too long. You cannot take away the pain or the disease. That is the truth of the situation.
4. Be willing to witness searing unbelievable pain. We’ve lost a few friends since we’ve been on this dementia ‘journey’ – not because we had a falling out but because, for whatever reason, they slowly (or rapidly) disappeared due to the difficulty of not knowing how to deal with the situation – or not being able to cope with it. Being around people who are living with terminal illness or who have lost their person is hard. We may want to fix it or ignore it but each day is precious and should be lived with attention and intention.
5. This is not about you. For me, this relates back to #1. And it’s probably the most important thing I would want people to know. Coming into our world and making it about you and your feelings or your anecdotes is not what grieving people need. We have enough to do and don’t often have the bandwidth to care for others who feel bad because our pain reminds them of their pain. There is a time to talk about you – but not when it preempts, delays, or replaces discussion about the loss for those who are living with it.
There are six more items on Divine’s list. They all focus on what people can actually do to support their friends who are grieving. It’s a good book. I recommend it. We all know – or will know – people who are grieving because their person is gone or that person is in the process of going.
As Benjamin Franklin said, failing to prepare is preparing to fail. If one wants to be truly supportive to their people who are experiencing loss, learning how to do so effectively is a good use of time.
Photo by K. Mitch Hodge on Unsplash
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