I indicated in my first post that it was my father, I am his son, I thought it was obvious, if not it was an oversight.
thankstoo, It was clear to me in the first post that you were a child of your father -- it was whether you were a son or a daughter that was unclear. Typically, it is a daughter who registers here as the caregiver, not a son -- even for a father. And since I am of a generation that was raised to temper one's speech when speaking to a lady, I prefer to know, rather than guess, so I asked. Thank you for clarifying the issue.
The whole family knows how difficult it would be if we were confronted with his limitations and we have tried all the tests that some of you have mentioned. It is very difficult and we feel for him more than you can imagine.
Here is the first problem I see -- the first sentence in the excerpt above. My answer to that statement: no, you don't know how difficult it is for your father to have this disease.
Not. Even. Remotely. Do. You. Know.
I've had this disease for five years and am functionally quiadriplegic and even I wouldn't state that I know how difficult it is for your father because 1) your father and I have completely different personalities and 2) I can still speak and eat by mouth. For an able-bodied person to say "I know how difficult it must be" is simply laughable. Worse yet, it is condescending and demeaning to your father, even if your intentions
are good.
And, the condescending attitude comes across so clearly in your posts that I imagine it's absolutely unbearable to abide in person. "No interest in many things we think he could/should do." Who the heck is "we" and when did "we" presume the the right to tell dear old Dad how he should spend his time? Where in the name of sweet Fanny Adams do you get off saying something like that about a man who demonstrates more courage and dignity each day by not blowing his brains out than you are ever likely to see for the rest of your life?
Buy that man a laptop and an Internet connection and help him help him register on this website. It sounds like he could really use the support.
The decline or behavioural change was so dramatic from May to June. Prior to June he seemed to go out of his way to prove how strong he would be. He was playing 18 holes of golf, worked full days doing things like installing a central air conditioning unit, renovating a bathroom and laundry room etc..
Than instantly he stopped all that and quit the game he has dedicated his life. Simple things like playing gin rummy with some friends that stop by are no longer of interest.
Here is the key -- something happened. Probably not directly to your father, but possibly around him. It might be as simple as him seeing one of his so-called friends mocking him behind his back because of his impaired speech.
You are not going to know what that "something" is until you ask him. However, you'll need to make a better show of being on his side than you have here.
When we met with the neurologist in October he indicated that although there was some minor weakness in his shoulder and arm he said the decline was not significant but that the disease is moving from his mouth and will eventually travel to his lungs. He indicated in a very nice way to my father that he would likely see the disease attack his lungs versus his other limbs and that his mother (neurologist's mother) had similar symptoms to my dad and that she just passed peacefully in his sleep.
Confronted with his mortality at this point seemed to bring about changes again. He had difficulty breathing and sleeping after this appointment and from this point on his reclusiveness increased.
Yumpin' yiminy! With caregivers like this, no wonder your dad's heading for the bed. Everybody around him seems so obsessed with his former life and his death-to-come that nobody's encouraging him to live his life the way he wants to live it now.
"Confronted with his mortally." What a marvelously pompous phrase to use. Have you guys started the betting pool for date of death yet?
And who initiated this conversation with the Dr. Mengele wannabe neuro who has the bedside manner of the Marquis de Sade and the personal charm of a used condom? "No, Mr. Doe, you won't have to worry about your arms getting weaker -- because you're going to suffocate to death before you lose the use of your limbs." Can't understand in the least why your dad might be a bit blue after receiving that considered opinion. On top of what happened in June.
Seriously, buy your dad a laptop and an Internet connection and direct him to this website. Here, at least, he'll find people that are interested in helping him live, instead of killing him with kindness. Heck, we'll even teach him how to turn that laptop into a talking machine so he can tell Dr. Mengele (and anyone else who needs it) to take a long walk off a short pier.