Severe dementia and end of life: stomping my feet in the hopes of some grace
Walking around the property where Mom lives trying to focus on anything else.
We had a scare with Mom this week. She spiked an unknown fever and had some other concerning conditions. She’s recovered now and seems to be about the same as she was.
This is what I ate when I got home. As someone who tries to eat less cheese I can assure you that this did not go over well right before bed.
But I am not. During this scare Mom’s doctor said that Mom would not survive a big infection and that we should prepare ourselves for that. So during rush hour traffic I drove the hour drive to where she lives. I left my children with my neighbor and just ran out. I cried almost the whole way there, preparing and expecting her to pass away soon. (I originally typed “expecting the worst” but then thought better of it. Because the “worst” for Mom, has already happened.) In my head I was planning who to call when she passed away, debating details of her funeral and praying to Dad for comfort. I got there and ran up to her room. I went to be with her and sit by her bed. After talking to the nursing staff it seemed like she was going to be okay for now.
This is good news, right? RIGHT? This is the part where you might want to duck out if you haven’t loved anyone with late stage dementia. It’s not good news. Mom has been gone for years and now this body that she worked hard to take care of through Pilates, long walks and late night cheese and wine snacks is failing us the way her mind failed her. Her body started this dementia road strong and “young” compared to other dementia patients. I feel horrified at the idea that she might live months or years this way. I’m so tired of this disease and feel like there have been so many losses. And yet I feel drained an unprepared to also have this final goodbye- not wanting to pour on more sadness.
Loss 4372847328947, loss of sleep. This kid is so happy to make this creation and was so happy to show me. But he is also awake because he couldn’t sleep until his mom came home because his mom ran out of the house crying and that’s upsetting to this baby bear (and most humans).
One of the losses for me is faith in some magical cosmic balance that says that if my mom has to have this awful disease that it matters that she was a really kind and loving person. That the person in charge of the cosmos will not allow her to linger in this horrible state of disease, unable to even say if she is in pain. I want to stomp my feet and demand that she is given more grace than this. That her passing will be one of dignity and not of exhaustion by everyone around her. I am not recovered from thinking my mom was dying on Tuesday. That’s a rough sentence to type, let alone a day to go through and then have to come home and function/be a parent/be kind/make dinner.
The other one, the snuggle bunny. The next day all he wanted was to lay around.
The only way out of loving someone with Alzheimer’s is to say goodbye to them. There is no cure, there are no pills to take or numbers to manage or meals to make even. Despite my 8 year old’s insistence that Grandma should just get “a bunch of flu shots and see what happens”, her passing will likely not involve an emergency room visit or a rush of activity. it makes me so sad to think about Mom suffering in any way and so sad to think about how long we will get phone calls like this about her.
As I stomp my feet like a child and try to control the world with my thoughts there are others that are showing me how to be full of grace. The hospice team comes faithfully and cares for Mom. Her caretakers show her kindness and love by their music choices, comfort measures and attentiveness. Her family prays with her, sings with her and supports us. That’s where the grace is and I need it to carry me through.