I have been struggling with what I would write about this week. I have several partially-baked ideas but none of them has been able to force my attention in their direction so that the baking can be finished. Perhaps I still suffer from that post-Thanksgiving torpor where I would rather be dozing in a recliner after eating too much.
But then I noticed that a reader of this site had pulled up something I wrote early this year. Last November my sister and I drove my mother to the place of her youth so that she could see her old homestead and visit the small cemetery where so many of her family are buried. Has it only been a year?
If you have never watched someone close to you suffer from dementia, well . . . I don’t recommend it. Although I suppose that things could always be worse. Anyhow, I looked at that piece I wrote in February and see how much has changed since then.
Mom is now living in a facility that specializes in memory care. Which is poorly named, because it is actually lack-of-memory care. It is so easy for those of us who have it to take our memory for granted. I often joke that I can’t recall what I had for lunch yesterday, but this is only because yesterday’s lunch was so not memorable. (I actually do remember, it was half of a leftover Philly cheese steak sandwich. A good Philly cheese steak is always memorable.)
But what if you couldn’t remember your most recent meal today, or whether you had even eaten one? Or if you put something away and forget that you even have it? That is my mother’s life now.
For awhile she really wanted to go home. Where is home? Not the house where she last lived and not the one where my sister and I grew up. “Home” is where she grew up. “I want to go home – I have friends there” is a conversation we have had multiple times. She doesn’t understand that she has not lived there since she went off to nursing school in the fall of 1951. And that most everyone she knew there is no longer around, having moved or passed away.
These days she knows that she doesn’t want to be where she is, but doesn’t know where else she would go. My mother was always a fighter but she has become increasingly docile as she navigates her day to day life, with ever-increasing help.
One of the greatest frustrations for my sister and for me is Mom’s thing about missing possessions. In this miserable feedback loop, any time she cannot find something, there is no other possible explanation than that it has been stolen by the staff. “This place is a den of thieves!” she will sputter, proving that she still has some of her old fighting spirit. This “constant thievery” leads her to hide things. Which means that when she goes to look for it, she cannot find it. And . . . you can see where this is going.
I should add that the staff has been really wonderful there and that not a single item has ever gone permanently missing. Sooner or later one of us will find it, squirreled away in some ingenious little hiding place.
On recent visits we have noticed that her room key has become a problem. She has generally worn it on a stretchy band on her wrist. She checks for it there. But one evening Marianne and I arrived to find Mom in a rant because her key had been “stolen”. Being familiar with the drill, Marianne and I begin the Level 1 room search. Level 1 is my term for the kind of search where you hit all of the normal, easy hiding places, and which takes maybe ten minutes. We looked in pockets, in shoes, in drawers, but no key. “What about under the mattress?” Mom asks. “Eureka!” I think to myself, she has taken to hiding things under the mattress! But no.
A trip down to the nurse to ask if there are any new hiding places (“try inside of some socks or stuffed into a box of Kleenex”) and I head back again to move our search up to Level 2. About that time she needed to scratch an itch and found the key . . . which she had hidden by stuffing into one of her undergarments. Nope, no Level 2 search conducted by me would have turned that one up. Ever. “Good grief, Mom, put that key back around your wrist so you can find it.” “No, they will come in and steal it from me at night.” I avoid the temptation to ask why anyone on the staff would want her key since they all have one of their own. I asked that once and was met with “Probably so they can sell it.” So back inside it goes. Whaddayagonnado, other than clue the staff in on the latest hiding spot.
But dementia brings the occasional good thing too. She has reconnected with a lifelong friend. At least in her mind. Edna (not her real name) is definitely real, and she and my mother spend hours visiting together. They are about the same age and come from similar backgrounds. They have known each other for perhaps five or six months. But each of them is convinced that they have been friends for many decades.
When we visit, we are always sure to peek into Edna’s room on the way to Mom’s. At least half of the time, there they are, just chatting away. “Edna, have you met my son?” Mom asked recently? “Oh yes, but I don’t think I have seen him since he was wee little” Edna replied with a big smile. Unsure how to respond, I smile and say “Oh, I think we’ve seen each other once or twice since then.” Because it is true but vague enough that she can take it any way she wants – as a reminder, as a joke or as me being the one who doesn’t remember. She nods and says “I guess you’re right.”
Dementia has taken so much. It is good that it can give back a small gift once in awhile.