My husband went into the hospital for an elective hip replacement. Four days later he was on a ventilator because of gall bladder major infection. Came off ventilator 13 days later unable to swallow at all. Everyone, including the doctors, thought it was a temporary thing caused by the tube in his windpipe. Now, 1 1/2 yrs. later, he has never swallowed successfully and has since been diagnosed with PSP.
Looking back, there were signs of impending crisis but he was always able to explain them away. Dragging one foot was because of his hip. Not talking was because he didn't have anything to say. Clumsiness was just tiredness and aging (72). He was cleared for the hip surgery by his Primary Care doctor and his orthopedist. Actually I guess there was not really any correlation between he surgery and the eventual diagnosis. Just coincidence.
We now look back even further. He has had two shoulder surgeries from falls he sustained in recent years. PSP? His ex-wife found him wandering around in the airport as if he didn't know what he was looking for. This was five years ago. Who knows how long he has been battling this awful disease.
He has been on a feeding tube since 4 days after his hip surgery. It runs 24/7 and is the bane of our existence. He does come off it for trips to the doctor. Otherwise it has been like a tether that keeps him pretty isolated from the world. Initially, I could take him out and drag all the equipment. Now his walking is unstable even with walker and assistance. He sleeps 16-18 hrs. a day or more. He moves from his bed to his recliner - keeps his eyes closed and his head back. He is mostly incontinent of urine.
I now understand that some of these things are common to the disease process. The Q & A part of this site and the blogs have been extremely helpful - comforting in some respects, dreading in others.
I asked hospice to come evaluate him and they did. He put on a real show for them. Perked up, answered all their questions (not always truthfully), made eye contact, made jokes, etc. At first they said yes, but the Medical Director said it was "too early." Home Health only gets paid by Medicare for "improvement goals met." So we are back to private pay for any help we get.
I hate this disease - as we all do. The inability to communicate easily and the lack of things for him to do are so frustrating. He used to be able to read and did. Now he only watches TV and sleeps. We are looking into talking books to see if that will interest him.
Thanks to EVERYBODY who has participated in the blogging and the Q & A. You have been such a great help and support. I'm so sorry that your loved one is going through this awful disease and that you are struggling to care for them and yourself. God willing, we can make it.