Grandma is having trouble remembering.
When I first met her she was having some trouble, but it's become much more profound over the past few months. I have moments when I'm afraid we moved her one too many times, because every move was harder on her; but then I remember that we moved her home so that she wouldn't wind up in a nursing home and that is still a very good reason. Actually, I'm increasingly relieved we moved her when she did because if we were to try to do the same thing now the upset would be exponentially harder on her, I think. The loss of memory is fairly normal, people keep telling us, and eventually it gets to the point that changes in routine of any kind so throw a person off that it can be weeks before they're not confused by the change anymore. "That's just how it works," people say. "Your mind just changes as you get older, and these things happen."
Still, it breaks my heart almost every day.
Imagine living in Grandma's place. She wakes up in the morning and has trouble knowing what day it is, even with three carefully crossed-off calenders placed in all the spots she can look at them. She does not remember exactly who the people she's living with are. She's not even sure how many of us live here. When she's reminded it's just Ben and I, that we're her grandchildren and we're expecting, she's shocked and hurt because we didn't tell her we were pregnant and everyone else knew it first. She's troubled when she can't remember why she walks with a walker and thinks it was just a little fall that crippled her, so she's terrified of what will happen if she has another little fall. She feels that I'm a know-it-all because when she asks why she has a walker and I tell her the whole long story, she can't remember the details I'm telling her and she thinks I'm either making it up or somehow deceiving her because she can't remember.
Sometimes this is frustrating (probably a hundred times more to Grandma than it is to me!), but to be honest most of the time it makes me really sad. Because one of the most terrifying things I can think of is to not be able to remember. At first I was getting mildly annoyed when Grandma would ask for the fifth or sixth time that day what day it was; but then I started catching on that it wasn't just absent-mindedness. It was true memory loss and it was really a new question each time. As that has progressed to more and more things - and even as Grandma has gotten more irate with me for things like remembering how she walks with a walker when "you weren't there, how do you know?" - I've actually become more and more patient with it. Because somewhere along the way I've realized that it's our (Ben's and my) position to be Grandma's memory. Not to be her teacher and not to lecture her on the things she's forgotten, but to be a sort of walking, talking notebook keeping track of all the things that Grandma wants to remember but just can't.
When we were in Pennsylvania, Mom's cousin Sandy gave us a piece of advice gained from experience of caring for her own mother for 30 years: "When she asks over and over about simple things she can't remember, she needs mostly to know she's safe. Someone will always be available to remind her of the thing she wants to remember."
There are a few things we've been doing to try to help. We've begun a project where we're putting together some small book-sized photo collections entitled things like, "Why I Walk With A Walker" because when Grandma sees photos, she remembers. This is when Mom's penchant for documenting everything - even holiday meals - is rapidly becoming even more valuable than it already was. I'm also trying to write every little thing that I know is coming up on a desk calender by Grandma's chair. She reads it like a book every day, sometimes a few times a day. Whenever she asks a question, I answer it fully instead of just the brief answer you would normally give someone who can remember all the back details that might go into the question. If Grandma asks, "What's today?" she wants to know the day, the date, and the year, and probably anything we were planning to do that day. When she asks, "Where does everyone sleep?" she needs to know who's living in the house, how we're related to her, and to be reassured that we are there every night while she's sleeping.
It's a whole facet of life that I've never had close contact with before and it's an astonishing thing to witness. It's requiring thought and patience and care that I've never had to summon before. It's actually requiring more love than anyone has ever needed from me before. It's a tricky thing, being someone else's memory. But Grandma needs it, if only because if someone can be her memory, then she can feel safe.
Yet amid all of this, Grandma is living a life I don't think she ever imagined possible. Last Saturday is a good example. She woke up in the morning, had a leisurely breakfast (with berries on her cereal, which she really likes), then got in her transport chair and was wheeled next door, where she spent the afternoon watching her great-granddaughter playing on the floor, sharing lunch with Mom and her two granddaughters, watching all the centerpieces get put together for her youngest granddaughter's wedding, and watching TV with her son-in-law. Her children and grandchildren and great-grandchildren were in and out all day. She had her favorite macaroni and cheese for dinner. People made sure she was cool enough or warm enough and took care of getting her medication to her on time. She looked through stacks of photo albums from when her grandchildren were younger (one of her favorite things to do). When it was time for bed, she went next door to her house and went to bed in her own bed, not in a room she's just visiting while she's in town.
I hope she still has the memory that allows her to know how special this really is. Because it's perfect. It's how life should be. And I am very blessed to have a piece in making it possible.
Wife of Benjamin and mother to two wonderful little girls who are getting bigger every day. Enjoys writing down thoughts and discussions we are having within the family and sharing them with whoever is interested in reading.
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