My dad has ALS/Lou Gehrig's disease....scared

[jacksonsmom]

I am so thankful for all your prayers and kind words.

Thank you for sharing your personal stories. I am so sorry so many people had to deal with this. Like I said I never heard of ALS before this. I had no idea what Lou Gehrig's disease was except that it was named after a great baseball player.

I am in my research--"fight" mode now. I know my dad is still absoring the shock of it.
I am not sure how to approach him with all this research I am finding.
See when I say my dad is independent, I really mean it. He hates asking for any kind of help. He is just one of those type of people that he wants to do things for himself. Even down to changing the oil on his truck.

I am so worried this is really eating him up inside and he will go into a deep depression and that will affect his over all health.

I remember many years ago we were just talking about life support type questions and he said to me "if I can't breathe or eat on my own, I want people to just let me go" Now this was many years ago so I really don't know if that is how he still feels. I know that is something that has to be talked about. But I am so scared he will just "give up"

I am giving him a little bit of time to let him come to terms with this before I talk to him deeply about everything. I think part of him is hoping when he goes back to the dr in May that they will say "opps, we made a mistake you don't have ALS" But I just know deep down that won't happen.

Also he doesn't want family to know right now. I can understand that. The only ones that know are his wife, myself and my DH. Although my mother and him are not together anymore they always reminded friends. I know this is going to be a huge shock for her when she finds out. I wish he would tell more people but I can understand why he doesn't. I do think he is holding out hope that in May the dr's will say it isn't ALS.

I just think it is going to be a big blow to him when he goes back and the dr's don't say that.

 

[missypie]

I am so thankful for all your prayers and kind words.

Thank you for sharing your personal stories. I am so sorry so many people had to deal with this. Like I said I never heard of ALS before this. I had no idea what Lou Gehrig's disease was except that it was named after a great baseball player.

I am in my research--"fight" mode now. I know my dad is still absoring the shock of it.
I am not sure how to approach him with all this research I am finding.
See when I say my dad is independent, I really mean it. He hates asking for any kind of help. He is just one of those type of people that he wants to do things for himself. Even down to changing the oil on his truck.

I am so worried this is really eating him up inside and he will go into a deep depression and that will affect his over all health.

I remember many years ago we were just talking about life support type questions and he said to me "if I can't breathe or eat on my own, I want people to just let me go" Now this was many years ago so I really don't know if that is how he still feels. I know that is something that has to be talked about. But I am so scared he will just "give up"

I am giving him a little bit of time to let him come to terms with this before I talk to him deeply about everything. I think part of him is hoping when he goes back to the dr in May that they will say "opps, we made a mistake you don't have ALS" But I just know deep down that won't happen.

Also he doesn't want family to know right now. I can understand that. The only ones that know are his wife, myself and my DH. Although my mother and him are not together anymore they always reminded friends. I know this is going to be a huge shock for her when she finds out. I wish he would tell more people but I can understand why he doesn't. I do think he is holding out hope that in May the dr's will say it isn't ALS.

I just think it is going to be a big blow to him when he goes back and the dr's don't say that.

I am so much like your dad-never liking to ask for help with anything. That is why the thought of ALS is so nightmarish for me.

One thing that his loved ones may have to struggle to come to grips with is that he MAY just want to give up. I don't mean not fight it, but if it comes to not being able to breathe on his own, it may be his sincere, heart-felt wish to be allowed to go at that point. I'm sure it's hard to sort out "not wanting to be a burden" feelings from "really wanting to go" feelings, but I bet that professionals can help you through this.

I've thought about this quite a bit, given the dad at my kids' school. I always think that I would want to go as soon as possible if I was immoble and without means to communicate, but when I think of my kids, I can see where a person would want to hang on as long as possible to see them grow up as much as you can.

So absolutely heart breaking.

 

[missypie]

One more thing...Has anyone read an explanation of WHY Stephen Hawking has hung on so long? Obviously, the disease progressed pretty far, but then I guess it has stopped. Did he have any treatments that helped, or is it just luck?

To the OP, as you progress through this journey, if things don't go well for your dad, I hope you will use the opportunity to educate us on how do deal with friends and acquaintances with ALS. It's one thing when you're close...but with mere acquaintances, you don't know whether to visit or not, whether to ask the spouse about them every time you see them (or whether they would just like to NOT TALK ABOUT IT once in a while), etc. Lots of people want to do the right thing, but just don't know what it is.

 

[MickeysMommy]

 

[HomeSweetDisney]

 

[Deb in IA]

I am very, very sorry to hear of this sad news.

 

[hentob]

One more thing...Has anyone read an explanation of WHY Stephen Hawking has hung on so long? Obviously, the disease progressed pretty far, but then I guess it has stopped. Did he have any treatments that helped, or is it just luck?

Missypie--My guess would be that Stephen Hawkins has lived so long b/c he is on a ventilator. Realistically, many people w/ALS can live for a loooong time if they are vented and have a fabulous support staff. Mr.. Hawkins is lucky that he is independently wealthy and has doctors and nurses 24/7.

Understandably, many people do not want to go the vent route and just allow the disease to take them to heaven.

 

[Debbie Jean]

I lost a dear friend and coworker to ALS last month.

I will keep your dad and your whole family in my prayers.

 

[wdwoldtimer]

It's a tough disease, my MIL had it....check your PMs.

 

[KLAIT]

Hugs and prayers to you and your family.

We are personally going through this ordeal with 2 members of our immediate family. I, like you, had not a lot of understanding of the disease until it struck so close to home. I cannot imagine a more curel disease as what we have seen our members go through in the last year. To be trapped with a fully functioning mind and a body that is completely shut down is something that we cannot even imagine.

That being said, it truly believe that having a good support line is critical for the family members that are dealing with this. I also am an only child and do not have brothers and sisters who are going through the process with me. It is so important to talk about it with dealing with the whole process.

There are a lot of stages in ALS process and as horrible as it is to talk about, it is important to discuss your fathers wishes with him to make sure there is an understanding of what he truly wants.

Good luck and another round of prayers heading your way.

 

[AuntRoeRoe]

 

[Chattyaholic]

We lost my MIL about 6 years ago to the disease, so I know what you are going through. I was quite close to her, and they lived right next door to us.

For her it started with her speech. She started slurring some of her words, it sounded like she was drunk. Then she lost the use of her arms, then her hands. She was a fighter and had an extremely positive attitude and trusted her life to God 100%. When she started losing the use of her arms/hands she would find different ways of doing things. She kept walking, and would use an exercise bike in the house to keep her legs strong for as long as possible. She ALWAYS had a smile and I NEVER saw her shed one single tear over what was happening to her. She knew there was a reason.

She had a feeding tube put in on down the road (a year or so after it was actually recommended for her) and she lived 5 years longer than the doctors thought she would.

She was a very wonderful, courageous person and she passed away in the early morning hours with her family by her side.

My prayers go out to you and your Dad.