Below is what I believe to be an insanely necessary and important piece written by my lovely Aunt. I never said this project would be without tears. But sometimes they are good ones.
16 September 2016
Today was a “good day”. Today was a good day? It seems quite strange to consider this because of today’s series of events or series of moments or realizations. Dad had an appointment with his cardiologist and since yesterday was a heavy Alzheimer’s day – focusing on his heart came as quite a relief. As he himself noted today, Dad that is, he has a BIG heart! Although he did have open-heart surgery in the last decade, his heart is in very good shape. He has a “sticky valve. This makes it somewhat more of a challenge for his heart to pump the preferred amount of blood to his body. But with medication and a good doctor, it is doing a great job for its nearly 87 years on the job.
So we talked with the doctor about all the reasons he would never recommend that Dad have surgery to repair the value. His Alzheimer’s could and would likely be far worse after surgery. In fact, the doctor has never seen a case in which this did not occur. And of course surgery would require rehabilitation and physical therapy afterwards. In my mind I am picturing the daily mountain Mom climbs in trying to get him to walk up to the mailbox and back. So scratch the possibility of that. Plus, he will be 87 years old in just 9 days. And let us not forget that Dad is truly the worst patient in the universe and becomes a completely different and ugly being when he is hospitalized!
On our way into the doctor’s office and while sitting in the waiting room Dad regaled us with details regarding how each person we saw is always “there” each time we come this way or visit this office. The same goes for those who are crossing the street, standing at the corner, and in the parking garage. This is a scenario one can count on during any outing these days and I have learned to jest with him about his great sense of remembering people and that I had not noticed this before. He face tells me it feels good to be affirmed and to know something (even though we keep the fact that this is not the case to ourselves). What harm does it do to give him one small victory in the face of this thief of a disease?
Although his mind is failing him, his wicked sense of humor and flirtation remain well in hand. His discretion seems to be slightly less in recent days as he told one nurse (whom he said is always there in that spot every time we come to visit) that she is the beauty in the office. While chatting with Marty, his nurse, and after some well-timed jesting on Dad’s part, he looked him right in the face and said quite seriously, “You look much older than I do.” And he meant it although it was far from the reality. Being in his 50’s, Marty took his news quite well.
It is so strange and sad when that blank and lost look comes over Dad’s face. It is like he has left us in mind and spirit and has replaced himself as a confused little boy. Sometimes this is noticeable in just a change in his expression. A direct comment to him and a “right Dad?” helps him come back at least partially. I’m afraid of the day when that doesn’t work anymore.
He still makes “I forgot” jokes and is mildly aware that he has a true and lasting memory “problem”. When we go to the doctor who monitors his Alzheimer’s, we typically reach a juncture at which we need to ask “Do you remember Poppa, that you have Alzheimer’s?” He then looks at you with an expression that is equal parts surprised, sad, and afraid. And like clockwork, he makes a joke that he “forgot”. Oh, how I love his really bad sense of humor and mischief. I’m afraid of the day when that goes away. How I will miss those telltale signs that something devilish is brewing in his mind – the slight up-turn of the corners of his mouth and a definite twinkle in his eye. They belie him each and every time and well in advance of his actually saying what he has planned to say.
All in all, there has been no change in his heart since we last saw this doctor six months ago. His heart is doing well says the doctor and we all hooray and joke about those daily trips to the mailbox. Mom saying that he will need to keep it up then and Dad saying well then I guessed they worked and I can stop now. I’m afraid of the day when there will be no-more mischievous banter between them.
While Dad is getting himself together after his EKG, I follow the doctor out under the guise of needing to use the ladies room. I ask the doctor if I might be able to ask a question of him. I take a deep breath and let it out before I can’t make the words escape my mouth… “I am inclined to think that perhaps his heart will take him before we get to the end stages of Alzheimer’s. Is that a fair thing to say?” He looks right into my eyes, the world is breathtakingly still, “yes” he says, “that is very likely what will happen.” Once more I force words up out of my throat and think perhaps I might die myself when I hear the answer…”Do you have any idea of a time frame?” Again, the stillness. He smiles and looks up kindly and to the ceiling, “No, that is someone else’s plan, not mine.” “Ok thanks so much” and I head back into the room where the two of them are laughing together. I am afraid of the day when there will be no laughter together.
So, remember I said that today is a good day? The truth is - it is. My father will not greet death unable to eat, drink, move his body, or talk. He will likely not have to reside in a place where he is incapable of all things and experiences abandonment in a world that only exists in his mind. He will likely die of heart failure and it will perhaps be a much softer and gentler exit from this place where he is loved, adored, and cherished. And, selfishly, we will not have to watch that happen through to the end. This feels like grace indeed and at the same time I feel incredibly guilty that this is a pleasing thought. Before I can even address the thought of guilt another fleeting thought slips in – if we have to go there, we will be ok, we will all be ok. We can do this. God is good.
The sheer oddity of these events and thoughts is in stark contrast to the little girl who would tip-toe into Mom and Dad’s room almost every night and check to make sure they were both breathing. The anxiety of opening the door to face whatever state of affairs was almost crippling when I was small. And I have carried that anxiety and fear with me all my days. And now, here we sit facing death. Not death-bed death but the eventuality of death and the gradations of decline as acceptable and reasonable. I am not afraid of him dying anymore as we have lived a glorious life as father and daughter. We have said all there is to say and there is nothing left unsaid. What we do now is exchange love in conversation and deed and it is perfect and lovely.
As I leave them in the elevator to retrieve the car and pick them up downstairs, I wonder. I wonder what it is like to know that parts of your body are failing you, that repair is truly not an option, and your window is slowly closing. I wonder often what it is like to live inside yourself and know that you are quite literally losing your mind. That those who love you are caring for you, and trusting that they will help you get through. I wonder what it is like to suddenly have no idea what is going on around you or what people are talking about and being so sure that something happened or didn’t happen but learning that the opposite is true. I wonder how anxiety does not simply take over and engulf you in fear and loneliness.
So I am grateful, so very grateful for the laughter, the tears, the relationships, the connections, the raw depth of it all and the discomfort of saying it out loud. We are truly alive and things and feelings make good sense. We have it all, in this moment, today, and we feel it.