Oh my goodness: still when I dwell too closely on my mother’s last few years, the tears well up as I wish so much that I could have been more prepared to care for dear Katie-Mom. Here I am again, in tears, as my latest Menopause or Lunacy blog post has brought me face to face with Katie’s later life vision issues. Without a doubt, I treasure the fact that I take after her in many ways, and there is no doubt that I am her daughter. However, I would be quite content to not take after her quite so much when it comes to her vision struggles, which I now too clearly understand went hand in hand with her fear of just about everything, and her apparently inability to keep things straight in her head. If by reading this blog post, you become interested in my current foray into diminishing vision, I invite you to visit Menopause or Lunacy…That is the Question, and check out my blog post on that site. For now, in the here or now, perhaps you will gain insight into the affects of diminishing vision or eyesight, for your own sake and/or for that of a person for whom you are giving care.
As I look back at Katie’s rocky road to some major vision loss, I wish so much that if I was destined to follow a similar path to my mother’s path, why wasn’t the timing such that I could know what she was experiencing, and therefore know better how to help her? Mind you, her experience was significantly different than was mine, especially further down the road, given she also experienced dementia, but let’s jump into the similarities, which might be useful to you.
Katie often wore out of date glasses as a cost saving measure, so I think she grew used to rather fuzzy vision. Once she had surrendered (more or less) many of her health decision to my brother and I, we got her to the optometrist who got her to the specialist, who determined that she needed cataract surgery and new lenses that were to be transplanted at the time of the surgeries. The first of these surgeries went well, and the recovery proved to provide Katie with the best vision she’d had for years, and maybe even decades. However, the second recovery did not seem to go so well, and in retrospect perhaps that was due to the fact that all the requisite after-care did not happen as diligently as was the case with the first surgery. So, Katie was left with double vision in her one eye, a situation we attempted to correct until a fateful day for her vision arrived. To make a very long story short, suffice it to say that we learned that Katie had had a brain aneurism that caused her to suffer a significant event that damaged her ocular nerve and rendered Katie blind in that eye.
It was about that time when Katie’s dementia was diagnosed, and Katie’s life changed significantly, as you can imagine. In fact, it was very difficult to ascertain if it was the vision impairment or the dementia that was most severely affecting her actions and reactions, along with her constant fear of just about everything. As her dementia deepened (if that is the right word to use here), we all tended to place more emphasis on that ailment, and not so much on her obstructed vision, and the effects it had on her overall well being. But now that I am walking the road to very poor vision, I can see extremely clearly that Katie’s situation was anything but clean-cut. Not unlike Katie, my vision is causing me trouble because of four separate conditions, which work together to create a very challenging way to conduct life, which sees me writing in front a very large and clear computer screen, but still unable to see clearly enough to allow me to function well. For example, despite all of the aids, such as magnifying lamps that give me the most advantageous spectrum of outdoor light, I still can’t really and truly see much of anything clearly. So I squint and bob and weave my way through my days, hoping beyond hope that the documents I am producing are error free, or at least that they reflect clearly enough what I want to say, so that proofreaders and perhaps even editors don’t feel the need to change them to the extent that they no longer are my creation. Many times each day, I end up in tears of frustration and fear that I will not be capable enough to continue to build my new business, which is a dream business for me, which will help others increasingly as the business grows. And, as my vision troubles have increased, I experience and truly understand the fear that accompanies vision loss.
When I worked with CNIB (formerly called Canadian National Institute for the Blind) almost seven years ago, I would ask my colleagues who had lost their vision how it felt to go through that process, not suspecting that I would travel down that road, to an extent. For me, the prognosis looks good, and I look forward to once again seeing well. But still I go back to my former CNIB colleagues, every one of whom spoke of the fear that accompanied their loss of vision. And, I think of my own mother, Katie, who I suspect never did understand fully what was happening to her, and I think about how deeply frightened she must have felt as her world darkened and became every more confusing. And so it was with fear that I confided to the man who will operate on my own eyes, that I often feel as though I am experiencing a somewhat learned dementia, and how I am afraid of that being my reality. As he explained to me the inextricable link between poor vision and confusion and discombobulation, I felt relieved for me, but felt so very sad for Katie-Mom…and by extension for everyone who travels this road. I can only hope that through my experiences I can help you bring some new information into your world of caregiving, which may prove helpful now or into the future.
Yours in Caregiving …