For the last number of weeks, as I have struggled with my mom on my own (her caretaker was taking a much needed vacation), I have not had much motivation or desire to post on this blog. For those who have followed my reports of my mom’s alzheimers here, it won’t come as much of a surprise that her journey has become more treacherous and precarious. Whereas in the past she had moments of relative calm, peace, and near total clarity, now there are constant waves lapping up against her frail life. Most often the waves are rough, mercilessly tossing her about wearing and tearing on her physical health and also taking me for a sad, often desolate ride that probably is still no where as rough as her own because I have the capacity to maneuver and control my motions and reactions, in a way that she cannot do on her own.
At times the waves are really large, sweeping her entirely away. Other times, the waves small and choppy, causing nagging constant discomfort, but bearably so. More rarely we have caught and ridden some waves and have experienced moments of ease…
Since I moved far to Edmonton, I had not seen my mother for over 6 months, the longest period away from her in 3 years, which is why I came and stayed for so long (a month). And unsurprisingly I landed home to find my mom’s bridge between her world and the world of my experience, in a greater state of decay. She can cross the bridge or I can meet her halfway, but I am afraid it will soon crumble entirely given the very stormy weather. For example. the first 3 days of my visit, she asked for micah, who has usually come during the time of year… (and granted, who would not want him here..?) But after explaining that he went to see his family and was not in PR, over and over again, she finally got it. One day, she asked if I were her daughter, which of course, stung hard.
Alzheimers is known as a disease of the mind but the physical symptoms are trumping many of the so-called mental ones. In fact, she still has a joyful, almost childlike streak to her that when she is not in physical discomfort comes out for a visit with just a little culling.. She loves to joke and play and loves to express her joy and, especially excitement, when she is blessed with a good and clear idea (and I have some video of her excitement following her ingenious plans for my future career and I will upload the video soon and here is a photo capturing her vivaciousness). I am sometimes amazed at this outpouring. But it is hampered and sometimes entirely vanishes by her physical discomforts.
The worst of her her physical symptoms are due to her some difficulty swallowing, which causes saliva to accumulate in her mouth and throat. For some unknown reason (and I need to talk to her doc about this week because in her case drool, however seemingly unsightly and undignified is much better than her state right now) and because there is so much saliva that she does not swallow, she starts to choke and gag. She then spends up to 2 hours spitting and heaving in the bathroom over the sink, at times crying and wishing out loud with a lot of “oy, oy, oy” a short and quick passing away.
We have tried a few drugs but none have brought an ounce of relief. This week we go back to her ears, nose, throat specialist to possibly try one more medical intervention and also get a machine that sucks the saliva out her mouth. If this bring some relief, indeed, her quality of life will dramatically improve.
Otherwise, her emotional and mental life is marked my a mix of loss, desire, and a surprising drive to rationalize. Those things she has lost, like her baby son, are still with her, and I doubt they will ever leave. She also clearly still desires a better day to day life or much harder for me to hear is that she desires to leave this world.
One thing that has become pronounced is a hyper-drive to rationalize, which measured objectively, of course, may strike as quite irrational. For example, everything is “new” (the coffee at the supermarket, the bread that she now loves to eat, the streets) and many things are “bad” (when she does not like some meal I give her, she claims it terrible, infested with saliva). Even if this perceptions are incorrect from the measure of so-called objectivity, from the vantage point of her actual experience, in which the past is non-existent or hazy, in which many experiences are new, in which a meal can be experienced as totally lousy because face it, her life is lousy, well, she is rationalizing as you and I do too. And it is a reminder that while there may be some objective layer to life, this is mediated, always, by the the vicissitudes of experience, and this will most certainly texture how we form our rationalizations. And again, I am amazed that the inclination to place some order in her chaotic world is still here and I wonder if this will go (it seems awfully strong, sometimes frustratingly so!).
I too find myself needing to rationalize react, and recalibrate to and against and with the influx of rough waves that are also my reality, my experience with her, and and this ride has been especially trying, not only because she is worse but I was her sole caretaker for over 2 weeks. It is tiring, in the fullest sense of the word, in which the body needs more sleep (I would wake up with her a night during her horrific spitting-fests), the mind is frazzled and fried by trying to process so much, and the soul gets easily drained of joy and purpose.. Given her state of being (and knowing she is in no way alone) stormy clouds seem to follow me around in an otherwise sunny and tropical place. But this is nothing new for the dark clouds gather every time I visit and they do always seem to part given a little time…
Thankfully even within the storm, there have been some pretty amazing times here with family and friends, new and old (and one who came to visit…) and I will write a little more about those things here soon.. You know, to balance things out.