Dementia is perhaps one of the worst diseases to afflict a person and their body besides cancer. In some ways, it is even worse. While all diseases affect both the afflicted and their families, dementia seems to have a greater effect on the afflicted person's family than on the afflicted themselves. I don't want to say that one disease is worse than another for all diseases in their own right are bad, however, as I am currently dealing with a family member who is living with dementia, I will say from my own perspective, it is the worst. This person is my grandmother, Baba, whom I have talked about before in my blog. Over the past week, her dementia has taken a serious turn for the worse and she now seems to be on a very steep, slippery, downhill road. In some ways, I almost wish that another disease would have taken hold, leaving her brain in tact, even if it meant that she would pass more quickly. However, life has dealt her an ugly hand to deal with, in fact our whole family, and now we must struggle through. The downward spiral really took hold the day after her birthday a little over a week ago. According to my parents, when they arrived home from being out and about, Baba had set the table for dinner and told my parents that her family was coming over, most of whom are either passed away or not even close enough to come for dinner. After their real dinner, my dad was playing the piano and Baba had no idea who he was or who my mother was. Needless to say, the whole evening was a mess and ended up with Baba turning aggressive, waving her cane around and threatening both of my parents. The night culminated with my parents restraining her and taking her to the hospital. Two days later, it happened again where she turned aggressive and had to be taken to the hospital. It turned out that last Monday was her last day at my parents house. After a few days in the hospital under observation by a few doctors, psychological evaluations, and a slew of tests, it was determined that the best place for her going forward would be in an assisted living facility.
She was moved to a short term care facility in Westport late last week until the whole situation could be sorted out. According to my parents, she is comfortable there and it looks like they might opt to have her stay there as more of a long term care situation instead of moving her again. I personally can't imagine what it must be like for my grandmother going through this. Part of me wants to believe that she knew this was happening to her a few years ago and perhaps that was the reason she had such a desire to die at that point. Perhaps she wanted something else to take her life instead of going through this nightmare of a disease. From an outsider looking in, it seems like dementia is akin to a slowly creeping toxic fog, lurking in a forest. It comes and goes, reaching in to snag a piece of your memory or to take you over and debilitate you in such a way that you are unrecognizable to everyone else around you. Like that fog, creeping insidiously along the forest floor, there are times when it is clear, you can see the forest around you, the trees both in front and behind you until you pass a point where it suddenly encompasses you, leaving nothing to be seen, only distorted images of a forest that you think you know, but often times don't. It must be frightening on some levels, not knowing when that fog will overtake you again, dragging you down into a pit of emptiness from which it is harder and harder to climb out. Over time, the trees begin to lose their definition, the fog becoming more and more permanent until one day, all you see is fog and nothing else. There are no distinct forms to be seen, no memories to bring you back to your former life, only a fog swirling and swirling and swirling. I wouldn't want to go through that and hope I never have to. From someone looking in from the outside, the perspective is totally different. Since I am on a forest and fog analogy, I will continue to use it.
For those family member close enough to witness this decline, it is like standing on top of a fire tower in the forest, in ways on omniscient fire tower that rises just above the fog. From that tower we can see Baba stumbling through, attempting to escape the fog and grab hold of the trees, her reality, her life. As she continues on, despite our shouts of direction to her, the fog becomes denser and denser, killing any sound that we might make, keeping it away from her. To see her stumbling from our fire tower is like watching a baby waddle towards a busy street with a bus coming, all while standing in a packed store with no exit. No matter what we do, no matter how hard we bang on the glass or shout out warnings, we know that it will not make a difference. All we can do is simply hope that the baby stops, or in more matter of fact terms, we hope that the fog will dissipate and relinquish its grip on Baba. Yet for all our hoping, for all our shouting, for all our direction we try to give, nothing will stop the fog. No spot light we might shine from the tower will penetrate the fog, there are no stairs to reach her, all we can do is watch and hope for the best. Don't get me wrong, the fog of dementia has not reached the point where our family is completely un-recognizable, but it is getting closer and closer with every passing day. Unfortunately, there is no stopping the fog, there is no ability to turn back time and go back to better times, there is only dealing with the advancing disease and its effects. However long it lasts, it will not be easy, in fact, it already isn't easy. There is no easy way that I know of to deal with the veritable loss of a family member while that family member is still around. I wouldn't wish this upon anyone. It is one thing to hear about another person's experience with a family member and dementia and it is a whole other thing to actually deal with it yourself, to see the slow disappearance of a person that you have known your whole life. As it is, I will probably be writing more and more about Baba and her slow decline as time progresses. I still hope that one morning I will get the call that she passed away quietly in her sleep. More than myself, I don't want her to have to deal with this disease any more than she has to.
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