The Decline
Hubby is singing “New York New York,” along with Frank Sinatra, via Spotify. Sitting at our dining table, he has resisted eating any of the recent meals we have given him. A hot dog and watermelon was declared “too sweet,” even though he loves sweets. Last night’s guests brought him a terrific box of Swiss Sprungli chocolates. In the past he would have dived into the box and one by one little chocolate dots would have disappeared. Last night we had to place one chocolate into his hand to get him to eat at all. He did not want a second treat. This is a major change in Hubby, one which is very concerning. You may remember from the two chapters about dining disasters and dilemmas that he has been difficult for many years in the food department. Now he is even worse, no longer recognizing that he really does like certain foods. He is rejecting almost everything put before him.
The music playing now is “What a Wonderful World.” Tears are welling up in Hubby’s eyes as he remembers his kid brother who died at the age of ten. It was a traumatic time and the memory returns at poignant moments. He asks if I remember his little brother, even though at the time I had not yet been born. It is too complicated to go back to basics like this. I simply shake my head “no.” How is it possible that he remembers his baby brother whom he adored, but not his daughter who died at the age of 18? They were both terrible traumas, and yet, only his little brother is remembered now.
Does the brain have different folders in it, like a computer? When one section of the brain is full after a number of years, does another memory section become available? Is it possible that the folder which stored memories of his first marriage and his daughter’s untimely passing are in a very different location than his memories from thirty years prior? How much do any of us really know about this incredible organ which stores all of our past experiences and makes it possible for us to think, analyze, and make decisions? How many of us actually appreciate the exquisiteness of our brains and their potential? Perhaps we only come to notice when someone we love no longer has full access to that which we all take for granted?
Today was a club day and Hubby was showered, dressed and ready to attend. With the help of his aide, he had walked down the twelve stairs to our front door and had just begun his walk down the block to the taxi at the end of our sidewalk. Six steps later Hubby declared that he could walk no further. He stood in the same position, with Violet, and refused to move forward. His legs hurt him, he announced. He could not and would not proceed. They turned around and returned home. This was a first. He had never refused to move forward before. Somehow, he was able to walk back to our door, but not in the other direction. Something else to ponder.
I succumbed to slumber at 1 a.m. last night. I slept for two hours before awakening full of stress. My head was full of the possibilities of Hubby’s further demise. Would Hubby survive until our 50th anniversary three months away, or would he, like my mother, die before being able to celebrate fifty years of our marriage? I found my block of sticky notes and wrote myself a reminder to call Dr. S. in the morning to come to the house to see if Hubby was at risk. Perhaps his meds need adjusting? Perhaps he is dehydrated and needs an infusion? There must be something to improve his condition?
Three full hours of trying to return to the land of nod resulted in a stiff neck, and a mind that felt like it was about to shatter. I played my favorite sleep app on my tablet. The music has always lulled me back to sleep. Not this time. I tried deep breathing techniques, distracting the brain, but nothing thus far had worked.
My last resort was my favorite bottle of rum. A few sips of the rum mixed into a diet cola and I felt my shoulder muscles relax. Can alcohol actually work that fast? A few more sips, a change of the music and within a few minutes I was in a deep sleep which lasted for four hours. Two plus four equals six hours of sleep. I will survive after all.
It is necessary to stay in the moment. When the brain spins out of control, bizarre thoughts become quite overwhelming. My brain began to make burial plans, which was the last thing I want to deal with before I absolutely must! Then I began to worry about whether it was premature to buy air tickets to meet up with our son and daughter in law in ten weeks-time in France. Should I tell them he is doing poorly? Would it change anything if I did? He is after all, now singing “I said Something Stupid…Like I love you” with Frankie. How ill can he really be? Don’t human beings actually require a certain number of calories to survive? Am I over-reacting? Under-reacting? Being foolish? When the brain begins to spin, it is very difficult to put it to rest.
One of the most difficult issues when taking care of an elderly loved one with dementia, is assessing their decline and constantly wondering if there is something we can do to create a “turn around” in their behavior. Many people with whom I share advice, are desperate to know how much time their loved one still has remaining on this earth. As of yet, even though dementia can be seen to have “stages,” one never really knows if the final stages will last weeks, months or even years. At 3 a.m. this thought became something best avoided completely.
Although Hubby is energetically singing “My type of town…Chicago is…” I am still hoping that tomorrow morning he will have the energy to place one foot in front of the other, to be able to enjoy the company of others at his memory club.
There are so many twists and turns with dementia, that sometimes one does not know what the trajectory will be. In spite of the medication which I recommend so highly for caregivers, deep seated concerns seem to surface in the wee hours of the morning. Stress is a demon which all must fight with creative solutions.
I am not an advocate for the alcohol industry, but one must give the devil its due. A bit of the hard stuff can come in handy every once in a while! My favorite bottle of rum will, however, likely last me a very long time!
