Here’s another piece that I wrote for an evening of live storytelling. The theme of this evening was “Power”:
Caring for someone with Alzheimer’s disease is to live with the dichotomy of absolute power and absolute powerlessness. You have complete power over every aspect of the life of another person, but no power at all over the disease and its symptoms. The power you actually want is forever out of your grasp and instead you get crushing responsibility. As you probably know, there is no cure and really no adequate treatment for Alzheimer’s and Dementia. And most of us will get one or the other. I recently went to hear some experts talk about the disease and, apparently, 1 in 3 people over 85 and 1 in 9 over 65 will suffer from a memory disorder. My parents both have it. The odds aren’t good. I went to hear this talk as part of my futile struggle to gain some power over not just my parents’ fate, but my own. But there isn’t likely to be any good news any time soon.
My Dad is 95 and physically healthy. He’s outlived most of his friends, has had to give up most of the activities that made his life enjoyable and interesting, and his confusion scares him into sitting on his couch most of the day. He is stuck much of the time in a bewildered fog – and he knows something is terribly wrong. And he still has enough pride that he won’t be seen on the street with his aide. He will only go out after she has left for the day. Then he makes his way to the familiar places in his neighborhood – the bagel store, the coffee shop, the Irish Pub, the barber – like a blind person who knows where the furniture is. As I watch his life contract, I take a deep breath as he repeats every conversation on a continuous loop because he can’t remember what happened 2 minutes ago. When he calls me 20 times in a day I assure him each time that I’ve hired someone to pay his bills and he won’t get kicked out of his apartment. That I have transferred money into his bank account, but he shouldn’t take any out because we can’t keep track of where it goes. When he asks me if I am seeing anyone, I remind him that I’ve been married to Kevin for 20 years and that he has a grand daughter in college. When he tells me he is lonely, I can only nod in sympathy. And when my father, an old school gentleman considered by all he meets to be a mensh doesn’t recognize his aide when she shows up in the morning and rages that he wants “that cunt” to get out of his apartment, I catch my breath and explain to her that it’s the disease talking. Not him.
My mom is 9 years younger. She is bedridden from a conflagration of illnesses that left her in need of some strenuous physical therapy in order to recover. What we didn’t realize at the time, is that it was probably the beginnings of dementia that contributed to her unwillingness to participate in any real way. She always had an excuse and insisted that she would do it when she felt better. I any event, here we are, several years in, and she is completely helpless. She still thinks she’ll get better first and that’s when she’ll go out or sit up or eat at a table. She has no idea how many years she’s been in that bed watching CNN all day, every day, and usually doesn’t think she is in her apartment. She is trapped in a delusional cycle where she doesn’t recognize her surroundings and wants to go home. She is completely convinced that there are several identical apartments with identical furnishings in different locations that she is moved between. Sometimes she owns them all, sometimes she is in medical facilities that are largely deserted. She is physically disabled and can’t go anywhere unless someone gets her dressed, puts her in a wheelchair and takes her there, so she has to listen to people deny her reality and there is nothing she can do about it. What must it be like to be completely certain of a reality that is denied by everyone around you? She also believes that Matthew McConaughey is her personal driver (there’s an upside), that her mother, who died when I was 16, is still alive, and that her father died of Mesothelioma and we should join the class action suit, as advertised. She will ask everyone she has access to in turn for agreement and becomes more and more angry with each denial of what she knows is true. There is nothing to do except patiently endure her anger and frustration and wait for it to pass.
She has also morphed from someone who was extremely proud of and fastidious about her appearance into someone who can’t be bothered to get dressed or bathe. She has to be coaxed and cajoled into having her hair washed. I mean… She was a corporate CEO.
Both of my parents have felt power over their lives slip away, which has led to depression and denial. How could it not? This slow leaking of reason and perception and mental function and control. This slow retreat and return to infancy. The crushing indignity.
When I became a parent I understood that, for a while, my power over my child was necessarily absolute. It is an awesome responsibility, but I chose to do it and knew going in that I was agreeing to be the party in charge in order to ensure my child’s safety and wellbeing. It’s also finite. Eventually, if you’ve done your job, they start learning how to take care of themselves and make their own decisions about the course of their lives. And, in my experience, it is a relief when that day finally arrives and it’s not all on you.
But nobody asks you if you’d like to take care of a parent with Alzheimer’s. There is no choice, unless you are an unrepentant asshole with no conscience who hates their parents. There is a diagnosis. They become less and less able to deal with the daily activities and responsibilities of life and somebody has to help them function. Gradually at first, but then one day it just happens, you are entirely in charge of an adult human being and all eyes turn to you.
Their bills must be paid, bank accounts monitored and investments accounted for. This usually involves some degree of policing. My Dad likes to withdraw cash from the bank and I have no idea what happens to it. Neither does he. So I have to come up with schemes to keep him away from the teller’s line. I have regular conversations with stock brokers and wealth managers to decide when and what to do in order to protect their finances and provide cash to pay bills.
Households must be managed and In Home Care must be arranged, whether they like it or not. And the answer is “Not” for both of my parents. I work with an agency to provide aides for my Dad, but he thinks she’s a cleaning lady and doesn’t understand why she doesn’t appear to be doing anything much of the time. I have gradually increased the help in one hour increments so he won’t notice. Because he won’t be seen outside with them, sometimes I have him followed at a discreet distance to make sure he gets where he is going. My Mom went through 25 women before we finally found the right 3 to take care of her. It is a relief to have them, but I still have to manage their schedules and vacations and make sure she doesn’t bully them.
Medical appointments must be made and kept. Medication must be approved, monitored and administered.
Rules about personal hygiene must be made and enforced. My mom would go six months without washing her hair or cutting her nails if I let her, and my dad would wear the same pair of pants and underwear every day. It is easier for most of the aides to acquiesce than enforce the rules, so I have to manage and remind them from 3000 miles away.
I have to decide if they should be allowed to stay in their own homes and for how long. If and when the time comes when that is no longer practical, I will have to choose a place for them to live, move them in and dismantle their homes.
If there is a question or problem with Medicare, I am the one who answers the call.
I know for a fact that neither of them would want me to be this familiar with all of the details and intimacies of their day to day lives, let alone call all the shots. On the one hand, I am holding all the cards so nobody questions my decisions. On the other, it is a full time job if I let it be. And I have to deal with making choices that make them unhappy.
Power of Attorney. Sounds like something kind of glamorous and very adult. Sounds like something you might like to have.
It is power that I don’t want and I don’t want my daughter to someday have it over me. See, that is what this is all about in the end. This generational transfer of power and surrender to mortality. It is happening to all of us all the time, but Alzheimer’s makes you think about it. Alzheimer’s makes you bear witness, both as the patient and the caregiver.
Thank God for Power of Attorney. And Fuck Power of Attorney.
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