You Gotta Have a Sense of Humor!

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in car     Sarters_young

I remember a day about 4 years ago, where my mother was in the rebel years of her disease, very argumentative, confrontational and angry. That was before the good Dr. Steinberg was on the scene making peace of our lives, with his very special and tailored to fit cocktail. This morning she got up on the wrong side of the bed and proceeded during the day with quite a chip on her shoulder. This was still at a time when we were trying to make sense of the situation and she was still able to be left alone. This particular day, we went out to do some food shopping on the weekend. The weekend time is very valuable in that we are at work all week long and only have 2 days to get it together to prepare for another work week…typically called the “rat race” and for a good reason. When we got home I went in to check on Mom, and I was presented with her, dressed in a pillowcase. That’s right, you heard right, a pillowcase…a white pillowcase. She cut a hole in the top for her head and two small holes on each side for her arms and stood there like a stuffed pheasant posing for a family portrait.

At first, I wasn’t sure what was happening. I just looked at her trying to make sense of it all. Then I realized she was in the middle of a dementia moment. She claimed that she had no clothes to wear and that was all that she could find in her closet. Of course there is a closet full of clothing for her to wear, but she didn’t see it that way. I wasn’t very diplomatic at that time and I definitely didn’t completely understand what was happening to my mother or our lives. I just knew for sure that my mother, was standing in her room, wearing a white pillowcase looking like a geriatric go-go dancer in a mini-dress. Not a pretty picture. Looking back at it now I find it really comical. Actually, when you think about it, she was very creative. Not sure I would have thought to do that in the event that I had nothing to wear. You have to think to yourself, “someday we will look back and laugh about this”. You really gotta have a sense of humor to survive this disease, seriously, both for the afflicted and the family of the afflicted.

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How Did We Get Here?

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Looking back about 6 years, the day started normally, going to work on a gorgeous summer morning, taking the back country roads that I like to call the scenic route. During the work day, I received a phone call from someone named Linda. She told me that she was the apartment manager in California where my mother lived and that she had fallen, broken her hip and rushed to the hospital after being found on the floor of her apartment, screaming for help. Not knowing exactly how to handle this situation from across the country, I asked for her opinion on what to do. She advised me to call the hospital to find out the status of what was going on and then make a decision on what to do. What she did offer, was to never let her get into the CA state system.

So, with that I called Scripts hospital in San Diego, CA and found that she had indeed broken her hip and needed a replacement. There was nothing that I could do now as she needed surgery and I was to call later that morning. She pulled through surgery with her new hip but after a few days in the hospital, it became clear that she was a sundowner, something that often happens to the elderly after anesthesia in turn expediting the onset of dementia. Not knowing that at the time, I couldn’t understand what was happening when listening to her paranoia and hostility on the phone. Apparently, she was giving everyone in the hospital a hard time, mostly towards the end of the day, making it very hard to provide her daily care. To compound the situation, she also suffers from a lifetime disorder called OCD which made her care even more challenging.

Still not knowing how to respond or proceed, I called my step-brother Dwight who lives in CA with his wife Aggie. He agreed to go down to San Diego and check out the reality of the situation and look for respite places for Mom to recoup before I came out to accompany her back to my house in NY. He was my hero…he came down,  filled me in on all the things that I needed to know, found a nice place for her to stay for a few weeks until she was able to fly, bought her a few little shmocks to wear in the hospital and rehab and then went home. Through him, I was able to understand that she was now a frail little shell of the woman that we remembered and that I shouldn’t be surprised when I see her. Mere understatement…leaving me still wondering, how did we get here?

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Reality Bites!

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As kids, we never think of the possibilities of what could be in store for us in the future, unless of course, we are thinking of the positive and wonderful things that could someday become the results of our hopes and dreams. The “I hopes” and the “do you thinks” of life. We, being the young spirited baby boomers that we are, never think about the end of life and what it holds for us and certainly not about our parent’s twilight years…that is, until they are on our doorstep coming to live with us. Reality hits…just like childbirth did for them so many years ago. Their lives were never to be the same, just as ours become a beautiful memory of the past. Now, we become their care-takers, actually, the roles have reversed. We are now their parents.

We take care of them as if they were children, but they are not children. It feels so wrong to be changing your parent’s diapers and arguing with them for hours about the reasons why they must take a bath and wash their hair. Is this some cruel joke being played on the both of us? Have we been bad people in our lifetime and this is our punishment, our karma? How can this be? What happens with our life now…will our spouse understand…will our job understand us arriving late and leaving early on occasion? How can we manage to keep a healthy balance in our new life?

As time goes on and the disease progresses, we see our parents descend into a void with everyday being a new day, never knowing what to expect from day to day. Mostly, it’s a very sad process to watch unfold and at times maddening.

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