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Good morning friends!
Not sure if anyone has heard of FTD with ALS? It has something to do with some ALS patients becoming mean because of changes in their brain. Not sure if my DH is possibly going through this or if it is just frustration. The good thing is it isn't all the time.
Elston, I know. He does apologize sometimes and he means it so that does help. I do know he loves me.....so I suppose that is what gives me my strength--that and all of you!
Old-Cold---thanks for the song!
TL...as always good advise and thoughts. Thanks.
......He pulled over on the way home and asked me to drive the rest of the way home....he knows he is not doing well and I am sure he is scared. I just need to not take everything so personally and put it all in perspective. Not always easy with someone you love.....
Cyn, I'm still here. It's so seldom that I have anything to say because others do it so wonderfully. I know people post to encourage you, but you'd be amazed to know how much their support of you has had a positive effect on others (including me).
The words in bold jumped out of the page at me. That was a HUGE admission (concession?) on DH's part. I'm not in his shoes by any means but I can only imagine what must have been going through his mind when he did that. It must have felt like giving up one more piece of himself to this awful disease. I sometimes don't understand his anger and mean spirited comments, but this time my heart hurt to read those words.
I did go look up FTD with ALS.....and you are right it has to do with Frontal Lobe Disorder.....and it can be associated with ALS (not exclusively)....and it has behavioral changes. The case I saw had more to do with poor judgment and specifically a poor lady whose husband had accessed the bank accounts and made bad investments and used credit cards and bankrupted them. There was a lot of research....but the reporting was too technical for me.
I think the research is academic and isn't related to treatment---just like Alzheimer's disease; maybe someday. If it helps to think that his temper and unreasonableness is a function of FTD.....then it serves a purpose. If his behavior has always been a bit rough around the edges.....then probably not. The stress alone of having ALS is probably enough cause and reason to be irritable and unreasonable in the face of his vulnerability.
Cyn, I'm still here. It's so seldom that I have anything to say because others do it so wonderfully. I know people post to encourage you, but you'd be amazed to know how much their support of you has had a positive effect on others (including me).
The words in bold jumped out of the page at me. That was a HUGE admission (concession?) on DH's part. I'm not in his shoes by any means but I can only imagine what must have been going through his mind when he did that. It must have felt like giving up one more piece of himself to this awful disease. I sometimes don't understand his anger and mean spirited comments, but this time my heart hurt to read those words.
Know that I keep you both in my daily prayers.
Lily....you are a good woman....and more empathetic than I was able to muster yesterday! Thanks for helping me understand a bit more. (Although it still makes me angry).
Lily....you are a good woman....and more empathetic than I was able to muster yesterday! Thanks for helping me understand a bit more. (Although it still makes me angry).
Maybe it's a situational anger, so to speak.... you care deeply for Cyn and it hurts you to see someone, anyone, but especially someone she loves and is doing her utmost to care for striking out at her, and hurting her like that, whether or not he can help it.
I think we can all identify with your perspective on this.....
Big huge tears are coming--but it's okay,,,,,I have been told God knows how each day will be and I suppose he choose this to be this way..not sure why but I will do my best to make everyone happy..maybe even myself someday....
You don't have to make them happy, Cyn, that's something a person has to decide him/herself in reaction to surroundings and interactions with others around them. You know you're doing your utmost to care for and to be with your DH, whether he's happy or grumpy.....
So easy for me to say, so hard to do, especially when you're inclined to think you're responsible for everyone's happiness, and you're in such a rough situation. But you can't beat yourself up for someone else's being unhappy, because basically, no matter what you do, you can't change that especially when someone's unhappiness comes from a source that's beyond anything you can control....
I think the best thing you can do, is to take care of yourself -it's not selfish, it's re-energizing and replenishing yourself for what lies ahead for you both......
Good afternoon one & all I received this in my email today immediately thought of this thread. How many times in a day can we lose focus on what is really important.
The 'L I T T L E ' Things~
You might remember, the head of a company survived
9/11 because his son started kindergarten.
Another fellow was alive because it was
His turn to bring donuts.
One woman was late because her
Alarm clock didn't go off in time.
One was late because of being stuck on the NJ Turnpike
Because of an auto accident.
One of them
Missed his bus.
One spilled food on her clothes and had to take
Time to change.
One's car wouldn't start.
One couldn't get a taxi.
The one that struck me was the man
Who put on a new pair of shoes that morning,
Took the various means to get to work
But before he got there, he developed a blister on his foot.
He stopped at a drugstore to buy a Band-Aid.
That is why he is alive today..
Now when I am
Stuck in traffic ,
Miss an elevator,
Turn back to answer a ringing telephone ...
All the little things that annoy me.
I think to myself,
This is exactly where
God wants me to be
At this very moment..
Next time your morning seems to be
Going wrong ,
You can't seem to find the car keys,
You hit every traffic light,
Don't get mad or frustrated;
It may be just that God is at work watching over you.
May God continue to bless you
With all those annoying little things
And may you remember their possible purpose.
Have a blessed day by counting your blessings everybody.
You don't have to make them happy, Cyn, that's something a person has to decide him/herself in reaction to surroundings and interactions with others around them. You know you're doing your utmost to care for and to be with your DH, whether he's happy or grumpy.....
So easy for me to say, so hard to do, especially when you're inclined to think you're responsible for everyone's happiness, and you're in such a rough situation. But you can't beat yourself up for someone else's being unhappy, because basically, no matter what you do, you can't change that especially when someone's unhappiness comes from a source that's beyond anything you can control....
I think the best thing you can do, is to take care of yourself -it's not selfish, it's re-energizing and replenishing yourself for what lies ahead for you both......
(((Cyn)))))
Travelassie.....so well spoken.....you are so insightful and give such grounded advice to our friend cyn.
I think yesterday I was so angry because it played out in public.....which added so much more to the humiliation and hurt, at least in my opinion.
I would have felt... "Can't you at least wait till we are home....please don't show the world how much you devalue me and how useless you consider me. I would never do that to you....even if you were incontinent, or fell and couldn't get up.....I would try to help you hang on to some dignity....well...I want the same from you". (I would be tempted to add.......if you ever do that to me again....I am going to walk away and just leave you there until I can compose myself.
Good afternoon one & all I received this in my email today immediately thought of this thread. How many times in a day can we lose focus on what is really important.
The 'L I T T L E ' Things~
You might remember, the head of a company survived
9/11 because his son started kindergarten.
Another fellow was alive because it was
His turn to bring donuts.
One woman was late because her
Alarm clock didn't go off in time.
One was late because of being stuck on the NJ Turnpike
Because of an auto accident.
One of them
Missed his bus.
One spilled food on her clothes and had to take
Time to change.
One's car wouldn't start.
One couldn't get a taxi.
The one that struck me was the man
Who put on a new pair of shoes that morning,
Took the various means to get to work
But before he got there, he developed a blister on his foot.
He stopped at a drugstore to buy a Band-Aid.
That is why he is alive today..
Now when I am
Stuck in traffic ,
Miss an elevator,
Turn back to answer a ringing telephone ...
All the little things that annoy me.
I think to myself,
This is exactly where
God wants me to be
At this very moment..
Next time your morning seems to be
Going wrong ,
You can't seem to find the car keys,
You hit every traffic light,
Don't get mad or frustrated;
It may be just that God is at work watching over you.
May God continue to bless you
With all those annoying little things
And may you remember their possible purpose.
Have a blessed day by counting your blessings everybody.
Your post bore repeating, so here it is, again! So true, and thanks for sharing it.....
You are each and ever single one so one so perfect and wonderful! Thank you! Elston your caring hit me very hard in my heart and as a rule I never let anything get to me like that--you are very special!
I made DH's appointment for his peg in the hospital for April 2nd! Major accomplishment!
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