A small bit of clarity

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.

Nothing stays the same

No matter what fate chooses to play, there's nothing you can do about it anyway -                          Jackson Browne, For a Dancer

Mom has always written reminder notes to herself, they were all over her apartment when we moved her out. Because this is what she’s used to, she asks me to write down when I’ll be there next on the notebook by her phone. The notes are simple: “Melissa will be here on Thursday at 12:00 to pick you up for Thanksgiving” followed by my phone number. Or, “Melissa will be here on Wednesday at 1:00 to pick you up for your manicure/pedicure appointment. Bring flip flops”.

But for the past few months, she doesn’t remember to read the notes I leave and every time I show up it’s a “surprise”. This Thanksgiving she called me in the morning and said she needed to know “what’s going on” with a concerned tone to her voice. I told her I was going to be picking her up for Thanksgiving and asked if she still had the note I had left by the phone. She did, and she read it back to me. The thing is, before she called me, she had to look at the note to find my number; I just can’t understand the disconnect between her wondering what she’s going to be doing, looking at some words, and making her way to the bottom of the note for my number. I know there’s no “understanding” what’s happening to her, but that doesn’t stop me from trying to figure it out.

I know why she doesn’t “see” things like notes the way you or I would, I know she can’t help it, but it irritates the hell out of me sometimes. Every time she is “surprised” to see me I have to remind myself to not tell her that no, it isn’t a surprise, I wrote it down. Why continue to write down anything if she’s not going to read it?? I know the answer: it’s because, in some small way, that note by the phone is comforting to her even if the thought process to use the information on the note is broken. It still irks me even though I know the hows and the whys. Mother Theresa would be appalled.

Back to Thanksgiving. An hour after the first phone call, she called back which is normal for her; once she recognizes her schedule is going to be different she gets a little anxious. I explained again that I would be picking her up at noon, etc., and she said she was looking forward to it.

When I got to her place, I headed for the common area where she hangs out. I knew they were going to be serving lunch around that time so I expected her to be at her table with her friends. I was right, she was there - eating. And, when the aides saw me they all started saying things like, “look, Pat, there’s your daughter. We told you she’d be here”. She had obviously been concerned or feeling sad, although I’ve never not been there when I said I would be. I hugged her shoulders and she looked right through me - she had no idea who I was, even when I asked her if she’d like to come to my house for Thanksgiving. I think she sort of recognized me after I spoke, and the aides and her friends identifying me as her daughter probably helped her put it together.

We got to the house and I finished getting dinner ready. I poured her a glass of wine, we took a few pictures and then ate. She pushed the food around her plate, ate a couple of dinner rolls and waited for dessert. While we were eating, the kids decided to have a bit of fun with grandma and tell her that they weren’t the only children I had, there were more. Five more. I don’t know what got them started but Bill joined in and told her that he had other children as well, all over the world - most of them he hasn’t had a chance to meet yet. None of it is true, at least as far as I’m concerned, but she seemed tickled by the idea that she had a bunch of grandchildren. Then Leah or Logan told her that I had just had a baby but it wasn’t here, I laughed and said I gave it away because it was too loud. Mom’s answer to that was “Well, sweetie, you look really great for just having had a baby!”. I reminded her that I’m 52, a little past my baby hatching days, and she replied that I was holding up well. Mercy.

Some people may think it’s a little mean to tell stories like that to my mom but it seemed to entertain her and keep her engaged. My kids can ramp it up in no time and have everyone going in a good way - I think it was just what she needed. She was laughing and joining in and that’s way better than watching her push a spoon around waiting for ice cream. Besides, she’s not going to remember any of it anyway.

When she was done with dessert she said she was ready to go back to her room. I grabbed my purse and started heading for the garage and she asked where I was going. Um...to the car so that I can take you home? She got a confused look on her face and said, “I live here, don’t I?”. Ah, so this was new. I told her no, she had her own place not far from here and I pick her up and take her back. She still wasn’t getting it, I hadn’t seen her look that confused for a long time. I explained that once we got in the car and started driving she’d recognize what she was looking at. I don’t think she believed me but she got in the car anyhow.

We started driving and she started her usual chatter, remarking about the weather, asking how I was doing, how the kids were doing, did we have any trips planned, and how are the dogs. It’s a fairly tight script that she follows every time we’re together. I answered her like I always do but I did show her the pictures we had just taken of her and the kids and me. She asked when the pictures were taken. She had already forgotten and we were not even 10 minutes into the drive. She started running down the script again and I started answering her questions again but this time, I left out the pictures.

She seems to be doing well, she’s happy and doesn’t complain and she has friends who are always around her. The way her dementia affects me, however, seems to be changing. I know that there’s no recovery from this and I know that it’s only going to get worse; I’ve resigned myself to those facts. And I’m ok with her not recognizing me right away; I knew it was going to happen and it’s not going to get better. But lately when I’m going to see her, after I leave, and now pretty much all the time, there’s a new heaviness in how I feel. I’m trying to figure out just where it’s coming from in regards to mom because that’s what I do - I look for patterns in everything and try and put the pieces together in some way that makes sense to me. Once I do that, and the “thing” is figured out, I can put it on my mental shelf and move on.

But this is a whole different animal. There are no connections to be made, and even if something seems to fit one day, the next day or week it doesn’t. And it’s mildly unsettling - I think that’s the best way to describe it. I see the other “kids” of the residents and I recognize the look, I think we all have it. The half smile, the concerned and tired eyes, the yep, you’re going through this too and I get how you feel and it really sucks sometimes expression. So here we are, in our own special group. The membership dues to this exclusive group, though... man, they are a killer.