The last week has been a blur, a very difficult blur. When my other dad went into the hospital after suffering what appeared to be a stroke late Sunday night, I was numb, hearing the words, understanding them intellectually, but not in my heart. I thought I was prepared for the inevitability of his decline after my other mother, “MOM,” died last year, but he seemed to be maintaining much better than anyone ever dreamed he would. He and Mom came from that generation where she did everything for him; not only did she keep a spotless home, care for the two kids, volunteer in the community and work full time (until she was 77 and diagnosed with pancreatic cancer), she waited on him hand and foot, managed all the finances, and in general, managed his life. He never really learned how.
On the one hand, it’s admirable that she took such good care of him, but on the other, it crippled him to a significant degree. At 86, he had no idea how to go grocery shopping, take care of finances, or prepare himself a simple meal. Before she died, Mom took care of everything that she could to make his life without her simple, including turning all financial matters over to her long-time friend and financial advisor. His main concerns are paying the cleaning lady, simple shopping, heating food in the microwave, doing laundry and remembering to take all of his medicines. Doesn’t really sound like much to those of us younger and accustomed to doing those things and much more, but for a guy thrust into the situation of having to take care of himself, it can be overwhelming.
There is nothing that can really “prepare” anyone for a sudden and precipitous decline of the sort this delightful, bright, funny, loving man has undergone in the last couple of weeks. The sense of complete powerlessness is raw.
Rather than an actual stroke, the medical professionals believe he suffered a series of Transient Ischemic Attacks (TIAs). A TIA is like a mini stroke; all by itself it’s bothersome, but not so alarming. However, TIAs rarely come all by their lonesome selves, rather, they are a series of episodes that taken together, may cause serious impairment of even death. It’s difficult to tell exactly what has happened, since there are a several factors that conspired to create the perfect storm.
When something like this happens, quite often, loved ones fall into two types: those who understand that there is a problem that needs to be addressed and set about solving it, and those who like to tell the caregivers what they should be doing, although they have never volunteered to help, let alone call or stop by when someone is ill and needs help. On one coast, we have a daughter who seems to “get it” and will discuss rationally the options presented to her. On the other coast, we have a son, her brother, who doesn’t seem to think that the problems are really as serious as they are. There’s a fair amount of cognitive dissonance there, probably because over the years there was not much contact. Since mom died, he has done a better job of keeping in touch and visiting with Dad. He is the type who will find fault with the actual caregivers, mostly because we aren’t doing it his way, the “right” way.
I’ve given a lot of thought to what will happen when he leaves rehab in two weeks’ time. Both the kids will be here and it’s a decision that Dad and his kids must make. Should he move back to the east coast with his daughter, or go out to the west coast with his son? Today, he was doing a lot better, so we talked a little bit about his choices. He can stay here in a progressive care facility, or he can move to either of the coasts with his kids. He worries that if he has to choose between living near one or the other of them, the one not chosen will feel hurt and alienated.
We had a little talk today, since he seemed much more like himself and better able to communicate.
“Dad, you are 86 years old. At any age, we have no way to know how much time we will have left. This is not the time for you to be worrying about offending anyone. This is the time for you to decide how and where you would like to live out the rest of your days in the way you choose.If someone is upset by that, it’s their problem, not yours. On a practical level, if you decide to stay here, no one here has power of attorney and you won’t see your kids very often. Both will have to fly in from the coasts and it’s very hard for them to coordinate coming here at the same time so that you can all be together. You won’t be able to see any of your grandkids, or your older brother, or the rest of your elderly relatives.”
He nodded as though he understood, and I assured him that he didn’t have to make up his mind now, but that his kids would talk it over with him soon. This is, perhaps, the hardest part for me. I am here, seeing him every day, talking with all the doctors and nurses (with HIPAA permission), and I know, better than anyone else aside from them, what symptoms he is exhibiting, how much cognitive impairment he is suffering, how frail and small he is and how he has declined so rapidly. Never a tall man, he has shrunk from 5’8″ to 5’2″. I’m now taller than he is. He is very weak and frail, and it hurts my heart to see this very articulate, well-educated man struggling hard to find words to express himself; to know that he cannot even get up to use the bathroom without assistance; to see how poor his short-term memory has become. He has also suffered some degree of hearing loss, which could be responsible for some of his odd responses to questions. He misinterprets; in his head he makes up something that seems to make sense, but is really gibberish.
I believe that to some degree, his decline has to do with the loss of his truly beloved wife of 58 years. It’s almost as though he has been holding his breath ever since, and now that all hell has broken loose, he is exhaling. He is depressed, but this is not unusual after such a loss. In my heart, I know he needs to be near one of the kids. This is a time for him to try to regain as much strength and mental acuity as possible, so he will be strong enough, of sound enough mind, to make the choice that will be best for him. I love him, and my goals for him are to make him feel loved and appreciated, to provide him with the care he needs to thrive, and to do my best to assure that he is comfortable. (That’s why I brought him his NY Yankees pajamas and travel pillow—a little bit of home.)
I also know, in my own heart and mind, that much as I love him, I have my own life to live, my own physical struggles to deal with, and if I wear myself out in the process of caring for him, I will fail him in the end. He deserves the reassurance that as he approaches his last years, someone will be there to care for him and assure him the dignity he deserves. I can’t guarantee that with all of my own health problems. (Some days, I can barely walk.) Mom made me promise at least 100 times that I’d take care of him if something ever happened to her. I’m trying to honor my promise. Mostly, I’m standing in the gap for his kids and happy to do so until they can take over the responsibility, themselves.
And now, at nearly 1:00am, I am going to try to sleep. Early tomorrow I have to go to the apartment to find his cell phone and charger. In the nine days he was home after his holiday trip to California, the house progressed from being reasonably clean and neat on arrival to looking as though a cyclone had gone through it. I’m leaving it this way, rather than attempting to clean up. I want his kids to see, with their own eyes, how overwhelmed he has been, how much he needs them. Perhaps the reality check will result in the best decision for his future.
As for me, I can always hop a plane to visit. I’ve been wanting visit New York again, and I do love the warm California sunshine. Goodnight, all.