Where we are

A picture of mom and me taken in 2015 popped up on Facebook the other day. It’s a great picture of her - I remember having dinner with her that night and how happy she was that we were there. Not so long ago, but just thinking about everything that’s happened since that picture was taken makes it seem more like ten years rather than four.

In April of 2015, I was still eight months away from my Bachelor’s degree; it had been a very long road but now that I was hitting the home stretch, I was loving every minute of it. I even loved Statistics because it was a challenge. A HUGE challenge. I had recently been dealing with worse things and, as long as I gave those tough classes whatever amount of time it took to get it right, I could prove to myself that I was capable of just about anything. And, at that particular time in my life, controlling the outcome of something was extremely satisfying and strangely comforting.

In April of 2015, I was still able to talk to my mom about my classes and what the family was up to and have a semi-conversation about what she was doing with her day. She was still able to remember that I was in school and she would tell me often how proud she was of me for going back. I would write on her notepad what time I would be there next and, without fail, she would be at the front door waiting for me. If I was even a few minutes late, she would call me to make sure I was still coming.

I remember getting irritated at little things she would do like the four or five calls leading up to my visits, which were at least every other day, just to confirm when I was going to be there. Sometimes there would be several calls in a row in the middle of the night telling me “there’s something going on here that I don’t like”. She could never be specific but I’m guessing what she didn’t like was the staff telling her to go back to bed since she had, and still has, a habit of wandering the halls at night. I never expressed my irritation to her but people who know me may have heard a word or two.

Four years ago, we could still talk about my dad and our memories of him, she still remembered her friends from Illinois, and we could still laugh about certain silly things that had happened in the past. Mom still asked about my children, Leah and Logan, and made sure she had birthday and Christmas cards to give them. However, even then she didn’t call my son Logan by his name; she had been calling him “grandson” rather than his name for a couple of years prior. When she started doing that I thought it was strange but, in hindsight, I think I knew what was happening - the pieces of memory that fall away are so odd, so random.

Now, four years later, mom doesn’t always know who I am but she does tell me how much she appreciates what I do for her. She no longer remembers she has grandchildren, even when I show her pictures, although she always comments and seems to enjoy looking at them. She has asked me on more than one occasion if I am married and when I tell her “yes and it’s been almost thirty-one years”, she smiles and says “good for you”. If I take her to get her nails done, she forgets what we did within minutes but she does tell me that we had a good day.

Now, we have the same conversation every time we’re together; “How are you?”, “Is everything ok at home?”, “Are you going on any trips soon?”, and “When are you going to take me out of here?” - I answer, ask her a few questions that I hope she knows the answer to, and the loop is repeated.

Mom and me April 2015

A lot has changed. She doesn’t call anymore and she stopped waiting for me at the door a long time ago. She doesn’t look the same and the light that used to be in her eyes doesn’t show up as often. But she still laughs at my stories and enjoys the occasional outing. I know it could be so much worse and I do appreciate that she’s pretty easy to deal with but, no matter how you look at it, it’s not where either of us ever wanted to be.

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.