What changes after 6 months of no visits

I’ve been slowly separating from a life where I have a mom. I wrote about the slow, painful loss here and here. But this period of not seeing Mom has changed everything. I haven’t seen her in about 6 months. This summer the place where she lives briefly opened for outside visits. I wrote about those here. The visits were 15 minutes, outside, six feet apart and with masks on. And there were those window visits…

It’s totally wrong timing because I’m wishing my mom happy birthday through a window, but my hair looks good here. Like it’s been cut, highlighted, washed and blow dried (this was almost a year ago).

But it’s been months now that I haven’t shared a space with her. I haven’t been able to care for her, or straighten her room, or check her outfits to see if she has enough socks. Because when you are caring for a family member with advanced dementia, this is all you have left. You don’t talk, because you are just talking at the person with little to no response. You would never call a person with dementia. That is so confusing to them. Most people with advanced dementia have long ago given up cell phones and land lines. They would ring and the person would not be able to place the ring, let alone answer the phone.

You don’t usually write letters to someone with dementia. What would you say to jog their memory? How can she connect the letters on a page read by someone else to this child that you raised and love? Who would read it? Do you want to write your heart out and have the activities person read it? I did this once. I wrote a very emotional card to Mom when she was getting sick and I thought she was going to die. The next time I had a “virtual visit” with Mom, the activity person asked if I had a counselor. Great. Yes, I have a counselor. But also, it is okay to feel the weight of this and write your mom a really sad card.

Maybe I would have sent her this winner of a picture. Valentine’s day out with my love. And I do mean “out”. It’s 24 degrees and we ate outside.

Sometimes I send pictures for the staff to show her. Pictures of life on the “outside'“. I send pictures of hikes and kids smiling and birthdays and anniversaries. Because these are all happening “outside” of this world she is in and I don’t want her to miss them. But she does. And we miss out on her. I have to channel what I think she would do or say. I try to tell my kids stories about her- “Oh, your grandma loved to read. She read to me every night and let me play with her hair and put a million barrettes in it. She was probably exhausted but I don’t remember her saying she was tired”.

I’m pretty sure Mom would agree that this unicorn sled fell into this “absolute necessity” list at Target. You can find it here.

No visits means I lose out on this time with my Mom. And I can’t get it back. This is the time we are given. This is her lifetime. I miss being in her space. I miss feeling any sort of connection to her. Maybe I would sit with her and read her something. Or maybe just cry so much it would make the staff uncomfortable. Or maybe I would be a real jerk about the whole thing and just feel bad for myself the whole time. But I don’t get the opportunity to do any of that. For those of us with family that have dementia or family that are in the hospital- it’s loss on loss on loss. Not visiting together, not sitting together and looking someone in the eyes and saying goodbye, or I love you… I wanted to write this down because I know there are others like me- hoping for our allotted time to stand still while the world figures out a virus.

I also wanted to write this down to remind myself that it is okay for me to hope to see her again, even though I’m aware that I might not get to do that. Hope is scary because it means being vulnerable and really saying what you want when you might not get it. I’m so glad I named this blog “trying for joy”. If I had named it “sad goodbyes and pictures of things I bake” that would have been okay too, but right now I’m appreciating the nudge toward joy.