With apologies in advance to David Byrne and others who wrote the song Same as it Ever Was, and which I recently heard, I was prompted to change “ever” to “never” for this post. Better stated, perhaps in the context of this post, it is perhaps Sane as it Never Was. As has been written in prior posts, Melissa and I have dealt with, and are dealing with, aging parents in whom dementia has reared its ugly head. Or many heads. My brothers and I now are in the position to respond and react to a variety of never before, for us, scenarios. For example, last week we had a care conference to discuss my Mother’s decline. During that meeting, someone mentioned that Mom sometimes wears non matching shoes. Other times, she’s walking around the health center with only one shoe (which is closer to her preferred barefoot state than wearing 2 shoes, matching or not). A few days later, she was found sleeping on the floor of another resident’s room. The resident said Mom told her that she wanted to lie down there, so she did. The insanity of dementia is in full view. I’ve spoken with many others who have lived through the turmoil it creates. And, different forms of dementia bring different perspectives on sanity and insanity. It is not that the different forms are not equally bad, but they are different. Friends have reported similarly strange events. And, those with my Dad are different still. As the disease progresses, the brain changes and the changes can bring all sorts of surprises, few of which, if any, are positive. In fact, I do not like the fact that the medical professionals talks in terms of “progresses” – it seems more like “regresses” to me most of the time. Each significant change brings life to a new definition of reality, of sanity. Thus, my song title changes. The lyrics of the song, with some thoughts of the parallel universe of dementia, spoke to me when I heard them recently:
And you may find yourself
Living in a shotgun shack
(Or maybe an assisted living facility)
And you may find yourself
In another part of the world
(Or, not sure what world you live in)
And you may find yourself
Behind the wheel of a large automobile
(Hopefully not – take the keys away)
And you may find yourself in a beautiful house
With a beautiful wife
(Maybe no longer living in your house
and, maybe not living with your beautiful spouse any more either)
And you may ask yourself, well
How did I get here?
(I don’t know sometimes how we got where we find ourselves, or where things will go next…)
I don’t write these posts to seem insensitive or to make fun of anyone or the situations. The point is to share the realities we have experienced so that people in similar situations do not feel alone. It is a difficult road!
Everyone experiences dementia, and other psychological maladies, differently. In addition, families and friends of people with psychological problems react to the changes in their loved one’s behavior in their own, unique, ways. There are no two people who are alike and this truism applies to coping with mental health issues in oneself and one’s family. Some people, when they develop dementia, experience marked personality changes, for example, becoming introverted and reclusive after living their lives as extraverts. Other people with dementia have short term memory lapses, however, their ability to remember things that happened long ago remains intact. Siblings may agree on how to care for their parent who can no longer care for himself/herself or, more commonly, they may fall into childhood behavioral patterns, agreeing to disagree on just about everything. Some families include one person (usually a female, according to research on care givers) who engages in the lion’s share of care giving duties, such as accompanying a loved one to physician’s appointments, ensuring medications are taken, etc., while other family members lament that they cannot help because it is too upsetting, inconvenient, or whatever lame excuse they can muster. Long term family dynamics, established decades before a family member is diagnosed with dementia, play an important role in how the dementia will be addressed. Speaking from personal experience, I have always been the type of person who gets things accomplished. Whatever the task is, I am almost always ahead of the curve in completing it, timely, and with excellence. When my brother, Frank, who lived with my mother, told me she had gotten lost while driving to an appointment with her hairstylist, who had been in the same location for decades, I didn’t say, “Oh, my, poor Mom. I hope she made it to her appointment on time.” Instead, I said, “Frank, there is something wrong, very wrong, with Mom” and we agreed to pay attention to other warning signs that are indicative of dementia. Soon, it was obvious to both of us that her problems weren’t limited to forgetting where she was going when driving. I moved quickly to schedule an appointment with the memory clinic at a hospital in Fort Myers and in doing so, was able to place Mom on medication that maintained her quality of life for several years longer than had her cognitive decline been ignored. David’s family operates in a vastly different manner than mine. Instead of adopting a proactive approach when addressing their parents’ obvious cognitive decline, David and his brothers usually have a “let’s wait and see what happens” mindset. Although this attitude allows their parents to maintain some control of their health decisions, it is not necessarily in their best interests, particularly because they no longer possess the mental acuity required to conduct themselves responsibly. There is no “one size fits all” approach to being a care giver for a parent, spouse, friend, or other loved one who has lost the capacity to care for himself/herself, but I prefer to move quickly, to do something instead of ignoring the problem in hopes it will solve itself. It won’t.