[Trouble22]

My boyfriends dad is dying of Lou-Gherigs disease. It is to the point now where he doesn't have much time left to live. My boyfriend has never been good at dealing with his emotions or talking about his feelings. He usually bottles it all up inside for so long that eventually(maybe once every couple months)he breaks down and opens up to me about it all. I am the only one he has talked to about this whole thing with his dad. He pours his heart out about how much he loves him and how much his dad has taught him and how bad he feels for the unresolved issues they still have between them. He is having such a hard time dealing with this and is hurting soooo bad inside. The thing is, I have NO IDEA how to be there for him! I don't know how to help him deal with this. I never know what to say to him when he comes to me in tears. He just says how hard it is to watch his dad suffer and widdle away to nothing! I just tell him how important it is to spend as much time at home with his dad as possible and try to keep the family in good spirits. Well, lately he has been running away from all of this. He is spending more and more time away from home and avoiding spending one on one alone time with him. His family is getting so frustrated with him because he isn't helping out as much anymore. The thing is, he tells me how much he WANTS to spend time with him, but then doesn't. The rest of his family has no idea he feels this way because it doesn't show. I ask him if he ever tells his dad the stuff he tells me- all the good things. He says he cant. He doesn't even say I love you to him. His dad has NO idea how he feels, and he is hurting because he wants more quality time with his son. I want so badly to tell his dad the things he tells me, because HE won't. Him and his dad never had that type of relationship where they talked on a personal level. He never even had that with his mom. He talks to NO ONE! How do console him? What kind of advice can I give him as far as how to handle this himself? What kind of things could he do to show his dad how he feels without having to talk to him about it? I don't want him to regret not saying the things he wanted to say because he didn't feel he knew how. How can I TALK TO HIM ABOUT THIS when he starts to cry? I FEEL COMPLETELY HELPLESS and I want sooooo bad to beable to console him. I neeeeeeeed someone's opinions or ideas on what to do and how to be there for him. Also, how do I let his family know the things he says to me? HOw do I let his dad know how he REALLY feels? HIS FAMILY DOES NOT LIKE ME!!

[Wondergirl]

My great aunt died of ALS (Lou Gehrig's disease) so I understand a little of what your boyfriend is going through. The disease usually begins at the feet and slowly incapacitates the body while moving upward. My aunt's brain worked just fine but eventually she couldn't communicate with her voice.

Is your bf's dad this way, that his brain is working OK but he can't talk? There are other ways to communicate--with hand squeezes and eye blinking especially. The main thing is that your boyfriend is there. I know it's very hard to watch a loved one fail in such a horrible way as with ALS, but your boyfriend will hate himself later if he avoided his dad.

When your boyfriend is upset, hug him and hold his hand, and then together read up on ALS, especially about someone who is near death and how to relate with them at that point. Remember, the dad's brain is probably working normally; this isn't Alzheimer's.

I'm sorry about his dad, and I'm even sorrier you can't be part of your bf's visits to his dad. Your presence in your bf's life has to be a big comfort though.

[Trouble22]

Thank you so much for responding. His dad is at the last stages in the disease. He just got a feeding tube put in, he is too weak to talk so he has a microphone attached to his shirts, he is on oxygen, and he hasn't been able to use his legs for a long time now. I know a lot about the disease, mainly from the book/movie "Tuesdays with Morrie." He is progressivly getting worse. The problem is that my boyfriend IS avoiding his dad. Well, he is around of course to help him go to the bathroom and each night to help him into his bed, but he's not really spending quality time with him(even though he wants to). He just is having a hard time facing it so he avoids being around him as much as possible. I understand he doesn't want to see him suffer, but at the same time, I wish he would spend time TALKING with him... showing him how much he loves him... and TELLING him that.

Maybe you're right, maybe we need to read about how to relate with someone facing death. Maybe it will help him to TRY, THANK YOU SO MUCH. Let me know if you know of any good websites that would help.

Also, I am sorry to hear about your aunt. This is an AWFUL disease.

[ChihuahuaMomma]

My father passed away of Esophageal Cancer about six years ago. I finally got to go visit him (what turned out to be three days before he died). I was only fifteen. Seeing my Dad at 80 pounds (he was noramlly around 200) and in a hospital bed nearly unable to talk. It was the most difficult thing for me to see. I was very close to my Dad. I sat next him his bed the day I got there, it was just me and him. I told him everything that I knew I needed to say to him for the rest of my life. I told him he had been a great father, shared many secrets with him, reminisced. This was NOT easy. I cried. He cried. But it was necessary. He was my hero. Could I let my father die without him knowing that? NO. The thing that lifted my spirits after his death, was the fact that he was at peace and that there was nothing left that I wished I could have said to him. He didn't die without me getting one last hug, one last kiss, one last "I love you". You should tell your boyfriend that those are all the things that he will be thankful for after his father is gone. If he continues to behave in this manner where he's afraid to talk to his father, he WILL regret it later.

[ChihuahuaMomma]

I wish you, and your boyfriend all the best. Happy Thanksgiving.

[Wondergirl]

An idea -- tell your boyfriend to sit with his dad and recall stories of when they went on family vacations or went shopping together or went to church -- any memories he can come up with that are not only funny or sweet but also infuriating (e.g. when Little Brother spilled the gravy all over the carpet at the beginning of the meal so no one got any gravy... ).

It will be a monologue for your boyfriend, but talking about the past will help him as well as his dad. (Tell him to watch and talk to his dad's eyes.) I know it's hard for guys to just sit and ramble like we women do, but practice with your boyfriend and make a list of memories he can share with his dad and roleplay before he spends time with his dad. Once your boyfriend recalls the memories and has talked about them with you, it will be easier to share them with his dad. (And it will get easier the more he does this memory-sharing thing.)

[Wondergirl]

Another idea -- when a coworker was dying of emphysema and was bedridden with a feeding tube and an oxygen hookup so she couldn't talk, we bought her a lightweight communication that has simple pictures on it for basic words (http://www.bindependent.com). The one we bought was the child communication board for $17.99, Item #SNC102. Either our ill coworker pointed to pictures, or we did as we talked.

Another idea -- music. Did the dad have favorite hymns or big band tunes or a favorite singer(s)? Play recorded music for him, or if your boyfriend can play a guitar or other stringed instrument, he should do so--and sing softly too, if he can do that. On the oncology (cancer) floor at my local hospital, several times a week a volunteer comes in to play her harp for 2-3 hours. The stress level of patients as well as nursing staff goes down to zero, so calming is the music.

[missplaced]

I have the same problem. The difference is that my boyfriend is the one that's sick. I don't even doubt that he'll survive but it will be very long time, maybe up to 2 years till he's fine. Yesterday he was sooo lost and kind and loving but today he was extremely nervous and cold. He also keeps everything locked up and I never know how he really feels and then one day he brakes and tells me everything. I too don't know how to react in those moments. He doesn't want to be consoled and he miss understands or denies every single positive thing I have to say so I usually let him do the talking and hug him a lot. And I'm talking about the period before he got sick. Now I really don't know what to do so I can't give a good advice. I just wanted to say hold on and be happy that you're the only one person he trusts.