Last May my brother moved out of the home he lived in with his wife of more than 40 years, and moved into a long-term care facility that specializes in patients suffering from Alzheimer’s disease and other cognitive impairments.
He is seven years older than me, and my only sibling. He has always been one of the first people I would call when something big happened in my life. We have had so many good times together over the years, and we have been through some really difficult ones as well.
He was diagnosed with macular degeneration, six years before me—an unlikely genetic lottery we both lost. Then only a few years ago a neurologist diagnosed him as having “mild cognitive impairment. ” As we would learn later, Mike suffered from early-onset Alzheimer’s, a particularly aggressive form of the disease. In what seemed like a very short time, my brother went from a man who saw himself as suffering from “typical age-related memory loss” to late-stage Alzheimer’s.
In a moment of vulnerability, not long after hearing about his cognitive impairment, my brother told me, “Chris, for all my life the two things that I have feared the most were losing my eyesight and losing my mind. Now I am losing them both.”
I can only imagine the horror of knowing you have a disease that will grow inside you until it has robbed you of everything you had in life, everything you have wished for, and everything that made you who you are. And there is nothing you can do to stop it. My only hope is that with his declining cognitive abilities, that realization was short-lived.
What a horrific disease. It doesn’t limit its terror to just the Alzheimer’s patient. My sister-in-law has suffered more than anyone. She endured my brother’s irrational anger, as the disease first took hold of him. She has watched him slip away, each day, one piece at a time. I imagine it is like having your heart torn apart bit by bit each day, with the only reward she can look forward to being a life without the man she has loved since the day they met in college in the early 1970s. Marilyn has been an inspiration to me. Her strength is unimaginable, and I can see why my brother has loved her for nearly half a century.
It is almost impossible for me to know what is on my brother’s mind these days. He can barely put together a single intelligible sentence. He has hallucinations and is frequently agitated. I wish I knew how much of who he is or was, is still accessible to him. Sometimes I see him smile on a FaceTime call, and I think He’s still there. Other times I am certain he’s not.
The other day, my sister-in-law, who has been by his side every day through this horrible journey, called to tell me that Mike’s caregivers believe that he has begun a steep cognitive decline. One they say he will not bounce back from, as he has done several times previously. This slide, they believe, will only end one way.
Will somebody please tell me, if that is good news or bad?
How can I wish for my brother to die, and how selfish is it to wish for anything else?
Maybe the Mike I have always known is already gone, but how can I accept that when I can still see him, and talk to him?
His wife says she feels as though he may only be with us for a few months, although it is impossible to know. My brother’s physical health, beyond the obvious challenges of the disease, has been good, but now his caretakers believe that it is coming to an end as well.
I keep putting off a trip to Texas to visit him. There is always some other priority I have to deal with first. I rationalize it by saying, he doesn’t even know who I am anymore. If I thought there was something he needed from me I would be there the next day, but there is nothing I can do for him.
I know the truth. My procrastination is about me trying to protect my heart. I know how emotional it will be so I bury my head, and my heart, in the sand, hoping everything goes away. But, pain can be patient. It can wait for years before it catches up with you, and I have learned firsthand that when it does, it can have a devastating impact on your life.
At this point, the trip to Texas is no longer just a visit. I know it is about me saying goodbye forever. I have no idea how I will do that. All I know is that I will walk away with a broken heart and a void in my life that could never be filled.
I imagine Mike will just smile, wave goodbye, and wander off to lunch, and that somehow makes me smile too.