I have been debating about this blog. Sometimes I think should delete it and merge with my professional website and sometimes I just want to use it to write and store articles about dementia and caregiving. And sometimes, like today, I want to make it into an actual diary to give people a glimpse of what it’s really like to be a caregiver for someone with Fronto-Temporal Dementia. I wish I could say I have the time or fortitude to post every day or even to keep it going, but the truth is that I probably don’t because caring for someone with FTD is exhausting and we’re not independently wealthy, so I have to try to slip in freelance work in between. Honestly, there is never enough time to work or clean or anything else.
The conundrum is that I am private. I don’t like people up in my grill. I don’t want my mom’s privacy compromised or to share anything that would embarrass her. But I also think our story could really help people and raise awareness as well, and I know she would have wanted to help people before this awful disease took hold. Perhaps we’ll just try it for a month and see how it goes. The truth is that I need a place to vent as well.
I can’t go to an in person caregiver group, because there’d be no one to take care of my mom while I went. I belong to a few Facebook dementia groups, but they honestly sometimes suck for venting. You have 500 people, all of whom are caregivers themselves, and because they’re all doing it too, they will want to tell you what you should do instead of just listening.
Even though they generally mean well, the truth is that most people have poor boundaries. There are times when advice is awesome and welcome, but there are also times when a person just needs someone to hold space and LISTEN.
I know I need a break.
I know I need to take care of myself too.
I know I need to ask for help when I need it.
I know I spent my 401k on care for her.
I know that I left a career to care for her.
I know the I somehow have to find the time to take care of her and earn money.
I know I can’t afford to get my car fixed.
I know that a lot of “close” friends fade away but a few golden ones stay.
I know my loved one has a disease and it’s not her fault.
I know it’s ridiculous to expect someone who can’t control their behavior to do so.
I know she has a disease that inhibits her impulse control.
I know that I monitor everything she eats, counting her calories more obsessively than any dieter.
I know I keep a log of her moods and good days and bad days to help with doctor visits.
I know that I don’t want to buy your new overpriced MLM cure.
I know my mom’s doctors know more than a salesperson.
I know she has a TEAM of doctors that I’m in contact with regularly.
I know she will go through a hundred different moods today.
I know we will dance and laugh to Sam Cook.
I know she will want to sit by me or where she can see me.
I know at some point she’ll probaby call me a bitch.
I know she’ll probably give me the stinkeye sometime today.
I know at some point she will look at me and say “I love you.”
I know she will laugh if I tell her our Jack-in-the Box Joke or our German “Fartville” joke.
I know if I cry she’ll likely say, “You’re my daughter. I won’t ever leave you.”
I know if I ask her to take a shower right now she will likely get angry.
I know when she’s about to have a meltdown.
I know when she’s happy.
I know the average life expectancy of a person with FTD.
I know the latest research on dementia.
I know what my mom has may be at least in part genetic.
I know my mom is going to fade away and then she will die.
I know that I miss her already.
I also know that sometimes I need to express the anger and frustration and grief that I try not to show in front of her and to be able to say “I fucking hate her,” even though I don’t. I love her more than anyone. Always have. Always will. But that doesn’t mean it doesn’t hurt.
And I know that sometimes we all just need someone to listen without judgment or advice or platitudes about “God” never giving us more than we can handle.