Feb. 12, 2012, Bangor, Maine~
Seems that since Stanley has gone to live at Golden Rest Haven, life has been a mixed bag. Some of it has gotten a lot better, but then again, some of it has only gotten worse.
For one thing, I miss having Stanley around. He was (IS) my soulmate, my partner for life, my husband. He treated me like a queen. Then around two, nearly three years ago, he started having problems with his balance and other issues. It got to be to where he could barely walk and suffered numerous falls, some so bad, he would have to go to the ER to get stitched up.
His body was covered with bruises; it got to be very embarrassing for us when we would go in public. People stared or made ridiculous assumptions.
Well, it got to be so bad I took Stan to the doctor (Dr Tanner, who has been our doctor for years). He popped my husband into the hospital, where he underwent a battery of tests. Things like myesthenia gravis, Lou Gehrig's disease, and multiple sclerosis were ruled out. It ended up that he had a progressive neurological disorder known as super progressive nuclear palsy (SPNP).
In layman's terms, it was like Parkinson's disease, but with a more rapid progression rate of symptoms, and it was fatal, with most of its victims dying within seven years after first symptoms started.
Eventually, Stanley would end up totally bedfast, unable to blink his eyes, eat, move his head, or move his body. It would be as if he turned into a human statue, unable to do anything for himself. It is a horrible ordeal; nobody should ever have to face what Stanley (or myself) have been facing these last few years!
Anyway, Stanley has since lost all ability to walk: he is now in a reclining wheelchair. In addition, because of his problems with swallowing or chewing, Stanley has had a G (gastrostomy) tube placed into his stomach, so to make eating easier.
To feed him, one hangs a bag of nutritional suppliment on an IV pole and lets gravity do the rest. It takes about an hour to feed him this way. He has this done up to five times a day. His "meds" are delivered the exact same way.
Stanley still can acknowledge my presence. Whenever he sees me come in, he blinks his eyes and smiles warmly. It's just that he just can't talk any longer. It makes me sad because he had such a wonderful manner of speaking and had a beautiful singing voice. Now that has been silenced and it truly aggrieves me deeply.
Since getting the tube placed, Stan hasn't had any more episodes of choking or with pneumonia, so that has been a huge blessing in disquise.
The staff at Golden Rest Haven have been fantastic with my husband. He looks healthier now than he has in months, ever since this journey with SPNP first began. I am very pleased at how well he looks.
Our sons have been able to visit their father on several occasions (Thanksgiving and Christmas). They are dismayed at what has happened, but they are grateful that I have been by his side. They thank me every day for caring for Pop. They call daily and write letters almost weekly, asking for the latest news. They wish they could see him more often than they do, but they have their own lives. I understand that.
Well, I have just gotten back from Mass and it's time for me to grab a bite to eat and go see my darling Stanley. Hopefully he is having a good day today; I pray with all my heart and soul that he is.
I will write in here again soon with another update. Just keep us both in your prayers; this is a nightmare that is ongoing and one that I wish would go away! It isn't easy for either one of us!
~Alice.
