I wish I could have the old Stanley back: the one who used to dance, make me giggle like a little schoolgirl, or crack jokes.
The Stanley I know now is rapidly becoming a shell of his former self. This Stanley is becoming weaker, sicker, more forgetful, and I don't like what is happening to him. If I could do something to take away his suffering, I would, in a New York nanosecond!
My husband started having problems about two and a half years ago. At first, it was nothing more than an occasional loss of balance (Stanley'd bump into something or someone, or take a tumble; he's brush himself up as he popped back up, saying: "Whoops!"; he'd then laugh about his mishap and go on), or turning morose and angry when watching the news, but nothing more than that.
We both just dismissed it as "old age", a normal part of the aging process.
What got me concerned was when his falls or loss-of-balance episodes became more frequent. It seemed that each day that went by, Stanley would suffer more in the way of falls. Some were so bad he's crack his head open and he'd have to go to the hospital to get fixed up. His head, arms, and entire body soon became a sea of bruises, cuts, and scrapes. My husband would try to make light of his situation by calling himself clumsy or tell everyone that I (his wife) hit him or beat him up!
After his last bad fall (which resulted in a concussion and two days spent in the hospital), I decided I'd had enough. I took Stanley to the doctor's (against his wishes). It was there where our physician suspected that something more was going on. He suggested that we see a specialist in the neurological field; he suspected that something neurological was going on.
This began the start of a scary and often unnerving experience with tests, more doctors, and worsening diagnoses. My husband was diagnosed with everything from Lou Gehrig's disease, myesthenia gravis, and Parkinson's disease. Somehow, none seemed appropriate because Stanley was acting like he had the beginnings of Alzheimer's disease (he was becoming rather forgetful by this point), and he was losing his bodily functions one by one (most notably with his urination control; he was starting to have "accidents"). This scenario went on for at least six months to a year and a half.
At this point, we were no closer to a diagnosis. Both of us were becoming increasingly frustrated. I was getting angry at Stanley for having to put me through so much hell, and Stanley was annoyed with me because I was always on him about the least little thing, and I shamed him whenever he fell or had another accident in his pants.
It was not a very good time for either one of us.
Then came the day when one neurologist who'd tested my husband gave us the news. The news was not good. Stanley had the symptoms of progressive supranuclear palsy, or PSP, a rather new degenerative disorder involving the gradual deterioation and death of selected areas of the brain. Dr. Tanner said that males and females were equally affected, and that six out of 100,000 people had the disorder.
He also said that my husband's symptoms (the falling/balance problems, personality changes, dementia, vision difficulties, etc.) matched the symptoms of PSP perfectly.
While the news was bad, it was not as bad as if he had been diagnosed with Lou Gehrig's disease. While patients with Lou Gehrigs died a year or two after being diagnosed, Dr. Tanner said that Stanley would live upwards to seven years after being diagnosed, but in time, his symptoms would worsen to the point to where he would be bedfast and totally paralyzed, unable to move, talk, or even blink his eyes.
He said that there was really no treatment or cure. All I could do was try to help Stanley whenever new problems arose and be there for him, support him in any way I could. He then sent us on our way.
Both of us were too stunned to speak. We didn't know what to make of it.
It's now been two and a half years since D-Day (Diagnosis Day), and I continue to watch Stanley worsen. He's now having problems with his eyes (he cannot look up or down; this is probably one of the biggest contributors to his falls), and he is having more in the way of difficulty in swallowing. I have to be careful on what to give him to eat, or else he could choke and wind up in the hospital with pneumonia. He may eventually have to have a tube placed in the long run if his swallowing problems continue to get worse.
In addition to the above, Stanley is having facial contractures and is having trouble holding his head straight, especially when upright (it keeps tilting backwards). It is frightening to see, especially since there is really nothing I can do to help him through his illness except be there by his side.
We are both dreading the day to where Stanley will end up in a nursing facility, but we both know that this day is coming. My children and I have been discussing the possibility of having him placed into a nursing home, where other, more skilled workers can help care for my sick husband because I am having more problems with worsening arthritis and it's getting harder for me to get around (I use a cane for walking).
I know Stanley will be angry with me for placing him in a nursing home, but I have no other choice. My sanity is at stake. Stanley is becoming increasingly difficult to care for, and right now, everything is falling on my shoulders. Our children (three strong, strapping boys) have other lives to live, and they live out of state (one lives in Florida; the other two in Alaska), and it is too far for them to travel to Maine on a regular basis. We do most of our communications by phone, when Stanley is asleep from the plethora of drugs they've given him to manage his symptoms.
So this is where we are currently at. Knowing that Stanley will continue to worsen, and trying to find a nursing home that we can afford, so I can get my life back to where it was prior to his becoming sick.
*To be continued.*