Losing Mummy, Finding Me

I had a terrific conversation the other day, with a woman in a similar position to mine. Her parent's illness is different from my mother's, but the end result is pretty much the same: the long goodbye.

The thing I took away from that conversation though was this: in the course of this illness, I will lose Barbara (my mother) certainly, but it is actually I who will be found at the end. This is not an outcome I had anticipated or even considered.

My friend said to me basically that the pain we feel in this process is that of ego burn.  I'm not sure that I'll do justice to the incredibly intelligent understanding she has of this process, but I'll try. Her contention was that first, we need to recognise that the process isn't not about the well, but about the ill. Obvious, yes, but not nearly as easy to grasp emotionally as perhaps we might hope.

Second, she suggested that the long goodbye is actually a journey to the center of self. If we choose, and it is indeed a choice to take the journey, we will find that the person we are at the end is very different from (and perhaps an improvement over) the person who started the journey. The pain, the whining, the wailing, the resistance, she suggested to me, were all in response to the burning off of the ego. If I understood her correctly, her take was that the ego, which wants all things bright and beautiful, pretty and flowery, resists its destruction. But ego is a stumbling block on the journey to self. Ego interferes with the process and must therefore be burnt away. Hm.

In light of that, I've changed the name of the blog to Losing Mummy, Finding Me because that may more accurately reflect where this is all heading.

Tears

And in today's developments in Alzheimer-land, "What is your name?" asks mother. I respond, "Mary Smith". "Smith? That is my name," she responds. "Yes," I say, " I am your daughter." Her response was a facial expression that said, "I have no idea what you're talking about."
 
Today, I blame the heat, dehydration, changing weather. I'll blame anything but the disease.
 
This has happened before, of course, but this is the first time episodes have occurred so close together. Tears are available but cannot be allowed to fall freely. Not time for tears. Yet.

Knowing.....or not

This morning, my mother didn't know who Mary (my sister, and no, that's not her name) was. Granted, Mary wasn't in the room when I was talking about her, but typically, when a parent hears their child's name, they know of whom you speak.....except if a parent has Alzheimer's Disease. I assumed, correctly as it turned out, that if she didn't know Mary, she probably didn't know me either. That was a 9:00 am. It's now 4:45 pm and Mummy's asking me where Mary is. This is how we roll. Well, it's how AD rolls.

The only way to survive this disease, I have decided is to figure out which response is required in any given circumstance: wing it or weep. I tend to *wing it* a lot. By this I mean I work hard at not responding to what's in front of me. I'm using smile; go for the cheap laugh or ignore as my coping mechanism. On a day like today, when Barbs clearly doesn't know me, my thought process is basically, "What's the point of getting overwrought about it? Either it will pass or it won't. Just keep on moving."  Don't get me wrong. It's not like this has been an easy skill to acquire, but I've had three plus years. I'm getting there........slowly. So today, I simply ignored it and kept on moving.

I don't know that anyone can warn you about the emotional impact of care giving. Even if they could, there can be no real preparation. Care givers simply have to learn as they go. What I've learned is that I'm not in control of the situation, all I control is my responses, so I have to manage those. I do not always succeed but the trying keeps me young I guess.


Whether we are known or not is a pretty small thing in the grand scheme of things. I don't know what the average life span of an AD patient is, but I do know that the average life span in my family is about 90 years. Given that reality, I just have to hunker down and make the next 15 years of my mother's life the best I can manage. For that to happen, I have to choose either wing it or weep.

I'm taking the wings. Flap, flap.