Grief...

It's not just about death

I feel like I’ve had this conversation a lot lately. Now that the weather is nicer and people are getting out of the house, it seems like we become more aware of all the things we’ve lost and continue to lose while living with dementia. Friends, family, freedom. It’s like the longer we live with dementia the more we lose and the more we have to grieve.

First, know that it’s OK to grieve all of this. All of the loss that comes with dementia. The loss of your loved one as you’ve known them. The loss of vacations you always dreamed about. The loss of relationships with friends and family. The loss of your own freedom to go where you want and do what you want WHEN you want. The loss of your home without extra locks, handrails, and equipment. The loss of companionship. The loss of your own sanity while you try to deal with someone who is illogical more often than they are logical. The loss of you. Grieve it all.

Second, know that grief theorists acknowledge that this grief is as painful as a physical death IF NOT MORE. In accepting this, it can really help us move through the grief. When we argue with ourselves that we shouldn’t feel this way or we should just stay focused on the positive and ignore these feelings, it really does a disservice to ourselves. We are allowed to feel what we feel. We are allowed to cry when we need. We are allowed, no, permitted to grieve.

Third, I can hear you from here. Becky, what if I start grieving and can't stop? It can certainly feel that way. Once we allow ourselves to feel grief, there might be so much built up it feels like a never-ending fountain of tears and misery. I’ve had more than a few caregivers tell me that they don’t allow themselves to experience grief because of this. Because they are worried that it will make their loved one with dementia upset, their children upset, their parents upset, everyone upset. I hear that. I truly do, but if we don’t find a way to release these feelings they can lead to physical ailments, depression, anxiety, anger, and other issues for us.

So what’s the plan? The plan is to find a way to express these feelings that work for you. I have a kickboxing bag and gloves in my workout room. Somedays I just need to release these feelings by punching something. I used to have a “run and bitch” partner where we could get in a few miles and complain about anything and everything. I LOVED that and miss it dearly here. Sometimes it’s listening to sad music and giving permission to let the tears flow. Maybe it’s joining a grief group that’s specifically for dementia grief. Maybe it’s finding a therapist or coach (they’re all online now so you don’t even have to find a sitter) to help you navigate these feelings and find productive ways to work through them. Perhaps it’s just finding that one friend who will either let you cry and talk it through or will sit with your loved one while you take care of you.

Whichever you decide, know that you are fully deserving of this comfort and care. As caregivers, we are wonderful at making sure that our loved ones have everything they need and truly ignore our own. I’m giving you permission to grieve. I’m giving you permission to acknowledge your own feelings about all of this and finding a healthy way to express them. I’m giving you permission to take care of you because you deserve love and support too.