Mom couldn’t get camping with a campfire until October, the weekend of the 7th to be exact. There are many moments from that part of our trip that mean a lot to me, but the one that truly messed with my head was strong enough to leave me a little stunned at the time and unable to fully process ever.
Right from the moment anyone has someone they love and are close to starts to deal with cognitive issues you will wonder what the person actually understands, what they experience, what they go through. Mom had her aneurysm in 2005 as she was turning 65, and that question has existed for me ever since. During the years that she was at a near-full recovery, I would occasionally try to discuss this. It seemed very difficult for her, and I got the distinct feeling it was not going to be ‘satisfying’ for me. The main thing she could offer clearly was her feeling of lost confidence, which was painful for anyone but something I knew was harder for her, having her independent confidence being her own conscious construction in her lifetime, and she had built it.
Of course, here in 2017 her confidence has changed, and one of the things I feel is my role is being ‘stand in confidence’; If she is trying to figure out something of importance she will almost always seek me for either help or confirmation. It may be entirely predictable given the level of time I have with her, but it’s still very special. However, when she is given the chance to be in places and situations where she is confident and feels she belongs in, she will push her limits and make more happen for herself.
This renewed confidence has negative and positive aspects: When she is healthier and more confident from a few good months as she is these days (end of October, 2017) this also leads to her attempting to do more on her own, such as get up in the morning, change her clothes, make her bed and so on. She can get very close, but she is still incontinent and close but no cigar in trying to achieve what I just laid out can lead to a heck of a mess. It also means more apprehension when going to greet mom in the morning, but not as much as when she fully gets up before me.
Since the start of the summer, increasing in the home alongside us getting out of it together was mom trying to leave on her own. In the time since I had one morning where she left and ended up completely in front of the apartment building, shocking neighbours and scaring me. Helping her back inside, at least the weather was decent and she grabbed a sweater to put over her pj’s. After that, up to and including last night I now move a shelf from nearby in front of the door, stacking loose cans on it. She has made a Hell of a noise there twice to waken me, when I could then get up and help.
The better she is doing the day before, unfortunately the more likely that this follows the next morning.
However, confidence I can see is one thing, figuring out how her ‘new’ brain works and what I can do to feed it is another, but trying to get a glimpse of what is going on is a whole separate field. I got the glimpse into this, and like it or not, I think it was one of the most insightful moments I have had with her in these 3 years of co-habitation and 12 years since the struggles began for mom.
Perhaps the biggest question for me about where she is at has been “Do you know whats missing? You are unable to participate in the kinds of long, deep conversations you used to. Does this bother you, or is it ‘out of sight/out of mind’ now? A common way people reconcile themselves with putting their loved ones in a nursing home is “well, they don’t know what’s going on anyhow…” and while I have long known that to be grossly overstated, I’ve wondered to what level it is accurate. How much of mom is trapped in her spirit, unable to come out– and how much has already received release?
Mom finally got her campfire, and had some good food. She also had a couple of drinks of OJ mixed with vodka; I got her a 200ml thing of it before we went even though she drinks maybe four times a year now. The fire took w little while to build up coals, but ultimately it was a heat producing, useful & real campfire. The moon came out, brighter than a child’s face on Xmas morning. Mom was extremely within her element. She started to try and ‘go deep’ in the conversation. She was coherent on a level much higher than normal– and she politely wanted to know why “You don’t tell me how you’re doing– how you’re REALLY doing anymore.” She was never specific, but she went on with this theme for a good couple of minutes. I admit, with our friend there as well, I couldn’t really get back into it with her on the spot. But the main point I got was this:
Mom feels, notices and misses the longer, deeper connections to people– in specific, me, as I’m always around– in a manner almost identical to how I miss her, as she is right in front of me. Make no mistake, this is probably bad news for many and no scientist would accept what I said as solid. But for me it’s ironclad. I know my mom, she had her fire, she was warm, she had a vodka buzz, she was comfortable in her skin and herself. So, naturally, she wanted to talk about the little things that make us go bump in the night.
Roughly six months before she got her flu that knocked her off from her ability to maintain her independence, I had a personal problem that I wanted her feedback on. I dropped by her place, we talked for a couple of hours before I then went home. That was the last time I went to mom as her boy needing advice and knowing I’d leave feeling better & clearer. I, of course, have missed this so much since, and have mostly wanted her advice and help on what to do with her! But I really wondered to what extent she misses these things as well.
Well, she called me out on it. She is forever trapped, with those feelings under the surface and her brain refusing to put the ideas together enough to share them. I have received a huge sense of this from her before, particularly as she looks at me when she is desperately trying to get an idea out. The word ‘desperate’ is not one I choose lightly or would normally invoke for my mother. In this case, however, she could be trying to find a drink because of a cough, and can’t get the word, or she is trying to alert me that a cat is doing something dangerous (I get a steady stream of play-by-play of what the cats are doing) or something else. She will get this alarmed look, like she is choking but someone needs to get the obstruction out for her. She literally looks like the communication she is trying to make is choking her and she wants help.
But thing is? Almost all things about what was going on ‘in there’ felt like speculation. Like ‘pop psychology’ alongside ‘pop neurology.’ Her declarations to me at that campfire determined it. She knows and senses all the things she is ‘missing’ by her own standards. This is painful, but it is real and allows me to prepare things accordingly. The simple fact is this: At this level of her cognition, which would loosely be labelled ‘moderate’ dementia, beyond early or borderline– she is aware of things she cannot speak to. She would score about 10-12 on a 30 point mental eval scale, for those who understand that system. But she is fundamentally aware of her basic surroundings (i.e. Me, her cats, other people who come in and out of her home, etc), routine and more. But she is also aware of her loneliness. She is cognizant that she has emotional needs that are blocked by her own brain.
However, I can also add this. She is also very aware of me. She gets my role, what I am tying to do. I have also seen strong hints of this in other ways: The nights after she has had a particularly enjoyable, ‘fun’ days I get the most demanding hugs at night. Mom is shy about such things, her exuberance comes of her mood. When she is heading to bed from a really good day, I can’t tuck her in without being (happily) mauled as I tuck her in (the usual order is: tuck mom in bed, fix her Star Trek show, feed and pat Mollie, remind mom of plans for next day, give mom big hug, turn out lights.). In the most stiff of Welsh ways she is often uncomfortable with physical affection. But on a good day’s night it’s several hugs, super squishy, kisses and declarations of love from someone who didn’t do so as much prior. I used to think it was a compensational thing, and I still do, but I now think that moreso it is what we can always remember as to how to be grateful, show love and show feeling loved. She is more expressive with her emotions because it’s how she can be more expressive. “I can’t explain why that was such a good day, but I CAN hug him harder than ever!” that seems to be a lot of it.
This short little pair of minutes in front of the fire confirmed for me in a way what nothing else has. Our loved elders are there, and they know they are trapped. They also know you are just outside, knocking on the door, or they know you are not. I don’t need the door to get answered, Mom just has to keep hearing me knocking. I’ll keep knocking. I get it, you just need someone to tell you they know you are still home. Here, in your apartment with your boy and your cats, but also in there, behind that smile that has never held less guile.