First published on April 7, 2014.
We all picture Ronald Reagan’s family as bravely soldering through his Alzheimer’s, fighting for a cure, standing strong to make his long goodby dignified. They have been at the forefront in fundraising for the disease – but in the entirely wrong way. Stem cell research, which Nancy Reagan advocated for years, is not the way to go. The cure is not going to be found there. The cure will be found elsewhere.
This is not a discussion about a cure, but how badly they damaged the role of the Alzheimer’s patient, by locking the former president up, like he were an drooling mental patient, refusing to allow him to be seen by anyone but a select few. They set the standard, which continues today. When someone is diagnosed with the disease, they are to be put away, hidden out of sight, not to be allowed out into the world, to have a remotely viable life with the time they have left.
There are caveats to this. Some individuals with the disease can be violent, and need to be kept calm, docile. With the exception of the violence angle, is it entirely possible the very same reason someone with Alzheimer’s must be kept docile is the same reason busy and bright, normal boys must be drugged as hyper-active – because society doesn’t want to deal with them?
When we do see someone with the disease, out in public, they almost always have this vacant look about them, dull, their eyes dead. Quite often that is not the product of the disease but the horrible medications well meaning people give them, hoping for a miracle cure. Unfortunately, as my family discovered, that horribly expensive medication for a miracle cure is being considered for treatment of hyper-active children. In other words, we are drugging what little life and brain activity is left in them, to keep them quiet and pliable.
In many ways, so much of this is involved in how we treat the elderly, once they become an inconvenience for us. Just shove them out of the way and hope they die. That’s how my other has expressed herself, how she has been made to feel, and she’s in good shape. Let someone be elderly and cognitively impaired and they are to be neither seen, heard, nor treated well.
When my father was told he had Alzheimer’s Disease, he was given the option of how he wanted to go about life. He told my mother that he wanted to continue doing what he was doing, going about in the world until he started drooling. Then lock him up. He’s now 90. He’s in Stage 5, pushing into Stage 6. He’s happy, active, and physically in good condition – for his age. Mentally, he’s in another orbit, and much like a naughty three year old. But – he is a viable person, with thoughts, and feelings. He has ideas, and moments of lucidity.
I remember listening to Michael Reagan wax on and on about how his father no longer recognized him, and how hard it was. Sorry, but big, fat, hairy deal. It is part of dementia. It happens. It’s life. You feel sorry for what has been taken, but it is no different from any other disease. And – that’s where the Reagan family truly hurt people dealing with this disease.
It is not anything to be treated with shame, the way they have done. Just because a person isn’t firing on all thrusters, needs assistance with a few things, and may not make it to the toilet in time is no reason they are to be shunned, shut off from the world.
My mother has been fretting over my father. She’s had kept him in a precious little cocoon, making sure that his life is perfect – and killing herself in the process. She is so exhausted being the perfect care-giver that she did not realize that she was robbing him of one of his great enjoyments in life – being a social butterfly. This weekend, while she has been in the hospital, I saw the difference. I had to impose on friends to baby-sit. He had a blast. He is so happy!
I don’t give a rip how society views my father. When he goes out for a meal, he is so happy, eats better. He needs people, friends around him. Within parameters of him being 90 years old, he needs to be as active and busy as possible. This requirement that Alzheimer’s suffers be kept quiet and watch the mental stimulation is entirely wrong. The mental stimulation is what makes his mind work. Excitement fires the synapses in the brain. Sugar makes him think!
Just because a person has Alzheimer’s Disease is no sign they need to be cut off from the world. It’s a disease, like cancer. You don’t shut off cancer patients. You don’t shut off people with other diseases. They’re not shunned, looked upon with wretched pity, and given no rights or dignity. Neither should the person who has Alzheimer’s Disease.
For those of use who have family members with the disease, who are determined to give them as normal a life, as possible, what the Reagan family has done, is almost criminal. The more I think about it, the more disgusted I become. Just think what they could have done for families who are dealing with this disease, if they had not locked the former president up like he was some sort of criminal.
So they drool. So what if they don’t make it to the toilet on time, there are a heck of a lot of people without Alzheimer’s who don’t. They’re not locked up, with the key thrown away, a humiliation to the world. Neither should the person with Alzheimer’s Disease.
I don’t mind saying there are many who just don’t understand the fact that we are trying to keep my father busy and happy. People don’t want to talk to him on the phone. The won’t visit. They refuse to talk to him, to interact. You deal with someone who is Downs, or mentally ill, or who has been in a tragic accident. What’s the difference here?
Well, there’s no difference, only the stigma of Alzheimer’s Disease.