Big questions about life, memory and covering the toilet seat...

Me in New York, asking big questions.

First, big discussion here. Does everyone use those paper toilet cover things in the bathroom every time you pee? Are they in men’s rooms as well? This is really important. My friends and I debated this and other bathroom issues over beers the other day and now I need to know what everyone else does. I put the toilet paper thing on there because I feel like I should and then watch it slowly fall into the toilet in the 4 seconds it takes me to sit down. What is the point anyway?

It’s possibly I’m not the classiest person though. I am 100% sure this was during the “drinking beach Olympics” and that part of this challenge was to yell “I’m trashed!” the whole time. Also, I still have that backpack.

Back here at this stage of life, where for right now I can only dream of my beach drinking days… were you all needing another reason why having someone you love with dementia sucks? Well, I have one for you. It’s the completely unpredictable nature of it. Mom is declining, and that is predictable and slowly happening. But this weekend, after weeks of being asleep or just not acknowledging any interaction I was trying to have, Mom seemed kind of awake-ish. I said “Hi Mom” like i always do. I usually try this first and then need to say “Hi Rita” to get her to respond to me. But this time she looked up at “Hi Mom”, smiled, and said “Hi Sweetie”. Well geez. I just cried a whole bunch. I can’t remember, for the life of me, if Mom used to call me “sweetie”. But it doesn’t matter as much to me as just her smiling and sort of recognizing that I was someone she cared about.

When I visit Mom sometimes I’m overwhelmed with a desire to do something for her. So I clean the windowsills, water the plants and sometimes brush her hair or teeth. It’s hard to settle in for the visit. A few things help- sometimes I’ll plan music I want to play her before the visit and then play it for her. Sometimes I bring work so I can just write, pay bills or do something else to just sit with her and be together.

I can’t really look at this picture without crying. Those are Mom’s hands and my husband’s hands. And this is a picture of love, in case you weren’t sure what you are looking at.

We are all desperately guessing at what will bring Mom to some sort of awareness of us visiting her. It’s a struggle even in writing this. I don’t know how much she is aware of. Getting reassured about what she does or doesn’t know is really just a guess. I had this powerful memory of her hugging me the other day. I could smell the way this yellow sweater she had smelled. When did she stop being able to hug me? When did her brain stop being able to send a message to her arms? A year ago? 6 months? All of these losses have happened that were not marked, not even documented in a chart. Not lifting your arms is important! Yet this skill slipped away, gone forever with no notice.

You better believe I went for a run the day after this visit. Finally got to run in that Central Park you all talk about.

I’m scared about what’s coming next. It’s hard to write about these things. Because it is a sad time- to be in this period of waiting and watching. But I have an example of what to do with this waiting time. Mom used to consistently get up at 5 and sneak downstairs to pray and write and wait for the day to start. She had a station set up- her journal, her bible and a pen- ready each morning in the living room surrounded by furniture that was purchased after her mom died and we inherited the money to pay for it. As a teenager I remember thinking this was really weird that she was getting up so early to waste time writing in a book no one would ever read. And now I see the brilliance of it. So I will write, and sit and try to get comfortable with the waiting.

My morning “station”. Special thanks to Mario who bought a coffee pot and got me addicted to coffee in one week. It’s so good!