Last week my friend, Kathy, shared a video with me that explains dementia so well that I wanted to share it. It’s a simple analogy but it is the best explanation I’ve been given for what’s going on with mom. Here’s the link if you’d like to watch it: Alzheimer's Society - Bookcase Analogy . In summary, it explains that while short-term memories may be lost, there are many that remain; however, those memories that remain may mean that her “now” is 1950 something. Interestingly, while the memories of what she did today may be lost, the feelings linger. She may not remember that we’ve just gotten her nails done, but she does know that she is relaxed and happy and it’s been a good day.
The humanness of her is still there; she feels all the emotions I feel with a bit more confusion and perhaps fear thrown in. I can see the confusion when she first looks at me or when she asks me where she lives. Who I am and where she lives comes to her eventually but that’s not going to last. I haven’t seen her afraid yet but I have seen her concerned. Perhaps being alone scares her and that’s why she leaves her room constantly in the middle of the night? I can see where that would drive her to want to sit in the halls and be around people. That may help me assign some understanding to her wandering but I still wish she would stay in her room; $800 extra because she roams the halls still seems awfully steep to me.
It’s tough to remember to boil everything down to how she feels, but I need to keep it in practice so it becomes easier for me to do. I know she likes it when I hug her or place my hand on her arm, she enjoys having me fix her hair and telling her how nice she looks. She loves putting on clothes that are still warm from my dryer - it amazes me how long they stay warm once they’ve been folded and placed in her bag. She likes how the afternoon sun comes in her window and lights up the whole room. It’s simple stuff that can get drowned out by all the noise of questions like why does she make piles out of purses and clothes, why does she all of a sudden hoard styrofoam cups, why does she always have those little cups of butter in her purse? I could ask her why every time I see her and she wouldn’t be able to tell me and, really, does the “why” matter? Not in the least.
Even though I have a better understanding of how my mom feels, it doesn’t mean that all of a sudden I’m going to be all zen every time I see her. I know I’ll get frustrated, but I also know how to handle that frustration. Instead of asking her why she has ten glasses from the dining room in her room I just gather them up and say, “mom - really???”. She smiles at me and shrugs her shoulders and I take them back.
While writing this post I thought about a book I read last year. I had heard about it on a podcast and the excerpt that was read seemed so relevant to what I’m going through with mom. Turns out that there are about two parts of the book that could apply, the rest of it is an exploration of marriage and the difficulties that come about as we change and grow as a person while trying to accommodate and appreciate the change and growth of our spouse. I’ve read enough of those for two lifetimes. Overall it’s a good book and a quick read, just not my usual choice.
Back to why I thought of this book. There is one passage I highlighted because it seemed to resonate with how I feel about change and expectation, what is happening with my mom, how I’m trying to fit my own life into my days, how I’m trying to consider what really matters, and the questions I ask myself every day.
What are the forces that shape our most elemental bonds? How do we make lifelong commitments in the face of identities that are continuously shifting and commit ourselves for all time when the self is so often in flux? What happens to love in the face of the unexpected, in the face of disappointment and compromise -- how do we wrest beauty from imperfection, find grace in the ordinary, desire what we have rather than what we lack? - Dani Shapiro Hourglass
I’ll let you know when I figure all that out.