new to this...

[coffeegirl]

Hi All,

I was searching on the net last night for some type of support network and couln't be happier that I found this site.
A very close friend of mine's father has had ALS for just over a year now, and the decline is getting worse. He is now fully confined to a wheelchair, no longer able to walk or use his hands.
He is fine in himself, and is such a positive person considering. I am very close to his family and it breaks my heart to see such a wonderful and close knit family go through such a terrible disease.
I don't want to sound selfish, but like most people going through this, it seems that everyone takes it differently. He doesn't talk to me about the situation, and the only time I can associate myself with how his father is doing is when we are over at his parents house. He gets angry when I try to talk about it, and when it does come up in conversation, he tells me to stop talking...its a really touchy subject and he doesn't want to talk about it...ever. I want to be supportive and show him how much I really care about what is happening in his life, but he continually shuts me out.
The problem I am having is that it is really concerning me with the way he is dealing with it. I don't know what to say or do that is right. Everything I try to do seems to go the other way, so when he does talk about it...I just don't say anything back... I just don't know how to deal with this and I need some advice...

[LindaH]

I don't have ALS not just yet and have not been diagnosed with it but do have a severe Neuropathy going on causing major disabilities. Have trouble walking and seeing myself in a wheelchair soon. Hands get tired. I get choked alot while eating. Short of breath. Maybe just not talking about it is the right thing to do for him.
Bring up other subjects but don't mention his disease. Trying to make him laugh and giving him love and joy is the best gift to give him right now. If he wants to talk about it, he eventually will! But give him time! Right now he needs time!

[fiddleplayer51]

coffeegirl,
I'm so sorry about your friend's father. It's obviously very painful for your friend.
I think that the more you try to get him to talk about, the more resistant he will get and possibly even start trying to avoid you. He's evidently not ready to talk about it. Let him be the one to initiate dialog about it. It seems to me that by honoring his reticence to discuss it shows that you respect him. There are other ways to show you care.
I'm sorry it seems to be this way for you. I wish you wisdom in handling this situation.
Take care,
Jane

[laurel]

Linda H.
Are you receiving treatment? My husband has CIDP MADSAM and he receives monthly IVIG and is getting better. Just concerned that you may not be as you say you are heading for a wheelchair.
Laurel

[Al]

Hi coffeegirl. Just be a good listener when he wants to talk about it. It's good that you are learning about the disease but he may not have read much about it himself so be careful how you come across when talking about it. Some people don't want to know what is going to happen. Your friend could be one. Take care.
AL.

[coffeegirl]

Hi Al,

Looking through these posts, it looks like you are such a wonderful support member for so many people. Words cannot express how hard this is...it's like you are completely helpless with what to say or do to make someone feel better when they are going through this terrible terrible terrible disease with their family.
I knew that just listening when my boyfriend wants to talk is the way to deal with this, but I just feel like he is in so much pain internally about his father. He doesn't want to face the facts so chooses to shut the whole situation out of his mind...and as I have learned through this forum is that everyone deals with it differently. I must just respect how he wants to deal and be there for him as much as I can when he wants me to be.
His father is now having troubles breathing, which is definitely taking a toll on the whole family as he deteriorates even faster.
Do most people choose to completely shut the issue out in a way to deal with it so that they do not have to face it right now? I worry for what will happen when his father passes away...I just think that he doesn't want the reality to be a reality...therefore just ignores the entire situation all together.

[leegardens]

Coffeegirl,

My family is going through the same thing. My husband has bulbar onset October 07, diagnosis confirmed March 18, 2008, with dementia. My 30 year old son does not want to talk about what is happening to his father, although he participates 110% in helping. He does a lot of phone calls and emails to help us here. He is in DC and we are in Atlanta. Our daughter lives here and has two babies. She can talk about it all the time and it is not as painful for her as it is for her brother. My son is suffering just like your boyfriend. Sometimes he can talk about it but many times he cannot.

Everyone is different in how they deal with this type of serious health situation. This disease is a nightmare. None of us are really prepared for the reality of having something like this and how it affects the whole family. Just being there for him, talking when he wants to, and being silent when he can't talk about it but letting him know that you are there is the best way. I am sure that, like my son, he feels that he is living a nightmare. The reality is there, he sees it every day, even though acceptance is difficult. My son is very angry with G-d for 'doing this to his father'. Each of us reaches acceptance in a different way and in a different time.

There is no one right way of accepting what happens in life, but acceptance comes with time. Eventually you have to make peace with your journey through life. Our group with ALS, we are all living a difficult journey. You can tell from the posts that everyone has a different method of dealing with their problems. It isn't easy, that's for sure. Every single person in the world has problems and difficulties, no one is immune. We just got a bad break.

Your boyfriend is not ignoring this, this is the elephant in the room. He can't get away from it, which may be why he doesn't want to talk about it. Is he spending time with his father and his family? If he is involved with his family's struggle then he is not ignoring the reality. His coping mechanism is in overload right now and just one more thing is more than he can handle. Just keep on being there for him. He will want to talk when he is ready. And if he isn't willing to talk, that's okay. Time will take care of that too. You can't run away from life. Everyone is giving you good advice in this thread. Just be there for your friend.

Lee

[fiddleplayer51]

Lee,
What a great reply! You summed it up perfectly!
Peace,
Jane

[coffeegirl]

Thank you to everyone!
I really appreciate all of your help and opinions..I thought as much but felt that I needed someone else to speak their mind on the whole situation as well.

I am so happy I found this forum...words cannot express how much it will help me.

[MtPockets]

It might help you some if you understand the steps most people go through when facing a terminal illness like this.
Denial
Bargaining
Anger
Depression / Anxiety / Grief
Acceptance

As we go through these sometimes we back up and start over again. Some of my family members are stuck on the first step.

[fiddleplayer51]

Glad you're finding these forums helpful, coffeegirl.
Take care,
Jane

[PDaddy]

Good list MT;

1 Denial
2 Bargaining
3 Anger
4 Depression / Anxiety / Grief
5 Acceptance

In my case, I'm past 1 and didn't do much 2. 5 came along pretty easily, 3 wasn't too bad, but 4 keeps rearing its ugly head!

[Al]

Glad we could help coffeegirl. Just ask if you have questions.
AL.