Bulbar ALS & Dramatic Psychological Changes

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thankstoo

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Thanks in advance for your responses. I will give you my father's history with ALS:

- 74 yr old, diagnosed in April 2009
- currently on feeding tube, has not spoken in well over a year. Other muscles have diminished but not significantly.
- first 2 yrs of disease he was very active, constantly keeping busy working in handyman trade-oriented tasks and enjoying doing so.
- over the last 6 months his zest for activity is diminishing quickly, no interest in many things we think he could/should do.

He was the friendliest most outgoing man you could ever meet, immensely popular . Over the last few months he has retreated significantly, and shows little or no interest in being around people, content to just sit and watch TV.

I know this disease is very difficult for anyone one to endure. He was recently put on anti-depressants that showed some signs of working but most recently he seems to be fading even more rapidly and becoming more ant-social.

Does this sound familiar, any thoughts, suggestions.

Thanks again.
 

trfogey

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What does he say when you ask him about it? You have asked him, haven't you?

What kinds of activities are you suggesting that he "could/should" do?
 

Katie C

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Is he ABLE to speak? If he has speech but is not communicating I would ask his neuro for a cognitive evaluation. If he has lost his speech, perhaps he simply needs to learn to use some type of communication device. Either way I would bring your concerns to his neurologist.

If it IS cognitive, then sitting watching tv and not interacting would not be unexpected. Suggestions to go out and do things that once were favorites of Glen's, and that he was still quite capable of doing, would be met with a silent glare. On another day... he'd be willing if grudgingly.

Are there any other behaviors combined with the silence? Is he agitated easily? When he does converse does he have trouble finding words? Are there things he obsesses about that seem odd? These are things to pay attention to and take note of before you give his doctor a heads up about your concerns.
 

thankstoo

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He is completely unable to speak, has been for well over a year. He gets frustrated when he tries to communicate. He will write down his thoughts only when we ask him to. He uses hand signals and draws letters in the air but gets frustrated when we say we can't understand and ask him to write it down.

When ever we ask him how he is feeling or his thoughts he points at his mouth and says his mouth his dry, says very little and seems reluctant to express what is going on.

This past May he was still golfing (18 holes), doing small renovations (which he always loved doing for his family) and relatively active. By June, he said he was too weak to golf and has not picked up a tool since. He is golfing occasionally now in Florida (9 holes on small course) but his buddies tee it up for him and pick his ball out of the hole.

He does not like to attend functions of any kind and is content being alone with himself and wife watching TV alone.

Thanks again.
 

penny1

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I have mentioned this idea before under tips, use the contact list on a non working cordless phone to store words instead of names and numbers. Then the PALS can scroll the contact list for what he is trying to get accross to you, food, water, bathroom, move left arm, etc

Not to high tech he may just go for it, good luck

penny1
 

trfogey

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It would be nice and perhaps even helpful if you would identify yourself as either the son or daughter of your father. Not sure why you are withholding that information -- it is a bit strange.

He is completely unable to speak, has been for well over a year. He gets frustrated when he tries to communicate. He will write down his thoughts only when we ask him to. He uses hand signals and draws letters in the air but gets frustrated when we say we can't understand and ask him to write it down.
Sounds fairly normal for someone who's lost their voice. I note that you make no mention of an augmented communication device. Does your father have one? Has he ever been evaluated for one? If not, why not? If so, have you asked him why he doesn't use it?

When ever we ask him how he is feeling or his thoughts he points at his mouth and says his mouth his dry, says very little and seems reluctant to express what is going on.
What are you expecting him to do in response? Write you a 500 word essay in response to the "How are you?" question?

This past May he was still golfing (18 holes), doing small renovations (which he always loved doing for his family) and relatively active. By June, he said he was too weak to golf and has not picked up a tool since. He is golfing occasionally now in Florida (9 holes on small course) but his buddies tee it up for him and pick his ball out of the hole.
What happened in May and June and where was he living at the time that caused this shift in behavior? Not that there is anything wrong with his behavior as far as I can see, but it is interesting that he will play gplf on a short course with buddies who accommodate his limitations while refusing to play "normal" golf under unspecified circumstances.

He does not like to attend functions of any kind and is content being alone with himself and wife watching TV alone.
Given his communications limitations, that seems perfectly reasonable.
 

Katie C

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I have to agree... what you describe do not seem like cognitive changes but normal reaction to his physical changes. He's not a young man and the extra amount of work it is taking him to do the simplest things is probably taxing his resources more than you realize. Try this experiment... take 2 - 3 hours and don't talk. Communicate only by hand signals, written word, gestures. See how exhausted you are after only a few hours, and knowing it's temporary. Then maybe you'll have a better understanding of what your father is dealing with.
 

Katie C

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And by the way... what great golfing buddies that they will adapt to his abilities! We should all have friends like that!
 

trfogey

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I have to agree... what you describe do not seem like cognitive changes but normal reaction to his physical changes. He's not a young man and the extra amount of work it is taking him to do the simplest things is probably taxing his resources more than you realize. Try this experiment... take 2 - 3 hours and don't talk. Communicate only by hand signals, written word, gestures. See how exhausted you are after only a few hours, and knowing it's temporary. Then maybe you'll have a better understanding of what your father is dealing with.
Exactly where I was heading, KatieC. Although I would add the additional condition to your experiment: do it at a lunch with your four or five most talkative friends. That's a much better simulation of what the father here faces every holiday, with his participation (or lack thereof) in the most recent of which being the probable spark for this particular thread.

Though I still wonder what happened back in the late spring that seems to have triggered such a drastic shift.
 

susanf

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I've retreated too since my speech is hard to understand. I'm not depressed or have FTD, I just like to stay home unless I go with my husband or daughter.
 

thankstoo

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Thanks again for your responses.

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.

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.

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.

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.

Thanks again
 

trfogey

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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.
 

joni51

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My husband will not go anywhere anymore, I know it is the speech, plus being embarrassed about choking, coughing, and drooling. It just sucks.
 

tammyg

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My dad was the same as in Joni51 above. It like they don't want people around from the coughing . droolong ect. My dad sounds like the same as your yours. Can't talk, feeding tube ect...With my dad always writing notes to communicate, by the time he would get written out what he wanted to say, people were on another conversation all together. And people that have not seen him for a long time are like "what the hell is wrong with him? You tell them and here we go explaining the disease to the world. You know if they are not looking at their cell, or a door to exit. My dad was also very acive, in the American Legion, Mustangs ect. After ALS he was so tired, he was sopose to wear a neck brace, he wouldn't , so he had to hold his head up on his fist all the time.They gave him leg braces to add stability, he would not wear them eighter. Instead hold on to the walls and stuff. He figured if he didn't go with the program ALS would go away or something.He had to have his breathing/ sleeping/ suction machine though. They told him to order a skooter(BULBAR could still walk)He said no, I will be gone by the time I need it. As usual dad was right again, he passed 2 weeks later. You are not alone, we are here for you:)
 

tammyg

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Me again, I did talk him into going to my son's 8th grade graduation. He said yes. I could not believe it. This was a biggie for my son. He has Dyslexia and went there for 4 years. This was a real BIGGIE for us, CHING, CHING . I think my dad had no intentions to go though. My dad passed away to the "Party in the Sky" June 15 @2 am, and my son graduated June 15, at 6 pm. I will never forget his little sad face on the stage that day, the biggest day of his life turned into one of the worst. Dad could have just told he did not want to go, i would have understood. :(
 
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