WOKKA WOKKA Pacman eating the little dots while he chases the ghosts.
Hub and I were driving somewhere the other night and we were talking about my mom. Lots of my thoughts and conversations right now are centered there, so it’s no surprise. Bless my wonderful husband for just letting me talk when I need to and not getting frustrated that I keep bringing things up.
Anyway, I was telling him how weirded out I was that I’m not panicking all the time and feeling anxious about the whole situation. I’m sad…I mean, so far beyond sad that I don’t even know a word to describe the feeling. I understand wholly what is happening, but it’s been happening in these Pacman chunks, so I think it’s been easier to absorb. Not that any of these things are easy to come to terms with, just that I haven’t been faced with all of it at once…so far.
I started this post on March 28th at 9:20 in the morning. My mother went into the hospital that evening at 5:30. Initially I was going to let this post go to the trash bin, but today it struck me again, and I wanted to continue with it from this side of her passing.
I miss my mother intensely. I think of her all the time. Things happen all day long every day that I want to tell her and so it hurts me when I realize over and over again that I can’t share my days with her. I’m sad.
I lost my mother in these Pacman chunks. She took her first real downturn just after Christmas day. Those were when the brain metastases made themselves known. Mom’s attitude changed, she became uninterested in engaging with anyone, and she was throwing up a lot. It was at that point that Mom started withdrawing from her normal activities…with others and with me.
We used to talk every night at 9:30pm, for as long as I’ve been living outside of her house (that would be 22 years) with the exception if one of us was away on vacation. When the mets started, she stopped calling me on a daily basis. Besides the 9:30 call, we would also talk on the phone periodically during the rest of the day, but now she stopped making and answering any phone calls. We took Mom to brain radiation, which resolved some of her symptoms–most importantly she was able to recover from the vomiting and motion sickness every time she moved–but she really never resumed calling me on the phone. Of course we saw each other daily because we live nearby and I was at her house all the time, but in the evenings after I left to go home, I wouldn’t speak to her until I went back to her house the next day. Sometimes she would answer the phone if I called, but sometimes not. The first chunk was the phone calls.
A couple of years ago, I introduced my mother to the game Words with Friends. I used to play against one of my brothers and other random people, and I told Mom about it. She asked if she could play against me–she and Dad used to play scrabble all the time but she said he tried to cheat, so they stopped playing–but the only way I knew to play WWF was either on Facebook (which she refused to join) or on an iPad. Hub and I had two iPads that came from one of his bosses. One was an older iPad, the other slightly newer. So we loaned Mom the older iPad, taught her to use it, logged her into WWF, and we began playing on a nightly basis. When she would go up to her bedroom in the evenings, she would play her turn. I would go up to my bedroom around the same time, and I would play my turn. Through the evening, we would play back and forth on my laptop and her iPad. We could pretty much make it through a full game in one night. Even after she stopped calling me at night, she would still play WWF every couple of days. When I saw her during the day she would apologize for not playing very much the night before, or for not playing at all. I would tell her to play when she felt like it and not worry about it. Eventually, and not too much time later, she stopped playing altogether. The second chunk was the WWF games.
Somewhere along the way, around the time the mets in her brain kicked in, she stopped wanting to get out of the house. Since this past fall, she’s been in and out of a wheelchair. Initially, she had a deep muscle spasm in her back that left her unable to bear weight on the leg on that side. She was moving around in a wheelchair because she couldn’t stand. Even then, though, we were going out with the wheelchair. I got pretty good at getting the wheelchair in and out of our minivan or her car (if my father was driving), so we still went shopping at the grocery store or at the craft store or at the yarn store. We even went to some craft fairs and such. I know she hated the wheelchair, but we made it work. Shortly after the radiation for the brain mets, the lymphedema in her legs got bad, so she wasn’t able to walk around…and that left her in the wheelchair full time. The fatigue from the radiation contributed…she never really recovered from that. At some point, she was only going out to her radiation appointments, then after that only to her lymphedema appointments, but that was it. She stopped wanting to go to the store, or even going outside at all. Over the last months, I could barely get her outside onto her expansive deck–when it was warm and sunny enough–which was something she loved to do. The last thing we did was when Hub and I took her and my father to see some botanical gardens. It was a week before she died, and it was a beautiful if tiring day. But up until that day, she hadn’t been out of the house for anything other than medical appointments for months. The third chunk was spending time outside the house.
Everything seemed to really go downhill after the brain mets appeared. Even after the radiation, which helped a lot of her symptoms but seemed to leave her exhausted and drained, she only got better in certain ways. The symptoms of the brain mets dissipated for the most part, but her energy and her interest were both low. She was having more trouble seeing things, concentrating on things, and finding motivation to do much. She seemed to be pretty concentrated on the lymphedema…not terribly surprising considering it was in both legs and it impacted her ability to move around as well. But other than the lymphedema and the wrap appointments, she lost interest in everything else. Including her crochet. She made a few attempts at a project that was supposed to be a baby gift for my cousin, but it didn’t go very far. Even trying to talk about that project, or the projects I was working on, didn’t hold her interest. Crocheting is how we got through most of her illness…the surgery, the recovery, the chemo, the days where she was too exhausted to move, the days where we sat outside in the sun and crocheted. The chemo hats we made, the preemie hats we made. We talked about crochet almost every time we were together. We crocheted a lot of the time we were together when she didn’t want to (or couldn’t) do anything else. She crocheted on the last cruise she took with my aunt and uncle. She crocheted through her first pelvic radiation. Through recovery from the pelvic radiation. Through the next sets of chemo…on and on. Crochet was how we spent time, how we passed time, how we shared time. The fourth chunk was crochet.
She stopped engaging with me even when we were in the same room as she got sicker. Weaker. She would sit on the couch or in her wheelchair and stare at the television. I’d try to ask questions or just talk and sometimes she would respond, most times she would keep looking at the television. I knew she could hear me, I knew she understood…this was when she was very lucid and I was sitting close enough for her to hear me. She just seemed to be removed. She refused to talk to most anyone on the telephone and if we asked if so-and-so could come over to visit, she would say no. If my Aunt and Uncle came over, she would engage with them on and off, but sometimes not even with them. Too may people in the room and she got overwhelmed and shut down even more. Even when it was only the two of us in the room, more often than not she would keep her gaze trained on the television and not respond to me. The fifth chunk was responding and engaging with me when I was in the room with her.
Good, bad, or otherwise, she really didn’t start losing lucidity until the last few days of her life. By this point, even though she had been lucid and aware of us talking with her, she wasn’t really engaging. So the lucidity was a change, but it didn’t actually change much. We were still having one-way conversations with her, we just weren’t sure how much of it was getting through. Sometimes she would turn her head to look toward one of us, but most times not. Her blood sugar was spiking (I almost feel like that was her body’s way of shutting down in a painless way), which left her looking and acting more and more drugged. But still I held her hand, I touched her, I rubbed her feet with lotion. I stroked her arms. None of these things had any kind of real response. The sixth chunk was the lucidity.
Then I lost her physically. The final dot. The final chunk.
Wokka wokka wokka. I lost her that way, like little dots being consumed by a yellow sideways pie-head. These things happened over the course of three months (give or take), so I had some time to grieve those losses. I had some time to try to get used to the changes. Even so, I still grieve the losses, I still feel the changes. Make no mistake about that. I just wonder if Mom tried to disengage in this way, to make it easier on the people around her. Consciously or unconsciously.
I don’t know. I know I miss her. I know I miss each of the chunks…and the chunks that I didn’t focus on in this post.