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coffeegirl

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Hi All,

I posted a few months ago when I was going through a really tough time on this topic of ALS.
My boyfriends father has ALS and he still refuses to ever talk to me about the issue.
His father has become a lot worse over the past three months - now having to wear a breathing mask at all times.

It breaks my heart that I can't talk to him about what is happening...I know he is trying to deal with it on his own but every time we visit I walk away feeling so upset and depressed.
This Christmas I am spending it alone with my family (my parents live out of town) and he wants to be with his family but I just want to tell him how much I support him and want to be there for him. I know this is the worst time of year when we are supposed to be thankful and happy but I just feel his pain and want to be there for him.

I don't know what to do. I know when I made a post last everyone said just give it time, but nothing seems to have changed and I feel I need to make him open up about it so that he doesn't feel so alone.

I would love some advice...thank you.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
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Country
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Hi coffeegirl. Has he made any mention of going to the Toronto support group? It's for family members of the patients as well. He might feel more like opening up around others in his situation. You can find them at www.alsont.ca

AL.
 

laurel

Very helpful member
Joined
Jul 19, 2007
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DX UMND/PLS
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07/2007
Country
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BC
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Vancouver
Hi Coffeegirl,

I know you want to do the right thing and help. However, from what you have written there a few things to think about. Your boyfriend's father may not know you well enough or feel comfortable enough to talk with you about his condition. And he may be someone who just hasn't ever talked about his feelings. There are lots of people who don't, and there may be generational factors involved too. Today's generation tends to be more open and emotional. My generation much less so. He doesn't need to open up to feel less alone. He can receive comfort from the fact that his family and friends are around him loving and supporting him. For some talking about a bad situation makes it too real and too painful. Suppressing and denying are coping mechanisms too--maybe not healthy ones, but they work for some people. Some people fear opening the can of worms. I'll give you an example from my life. My best friend had terminal lung cancer. Never at any time did she wish to discuss this with me or with anyone. We were both nurses working together in the mental health field. I took her to doctor's appointments, to the cancer clinic, I wiped up her vomit when she was ill, I changed her when she was incontinent. But she never once asked her doctors or asked me any questions or ever talked about dying. I did not expect her to talk as I had known her for years and knew that this was how she was as a person i.e. very private, very non-emotional. Two days before she died I was wheeling her in her wheelchair around the palliative care unit. She asked me stop in the hall out her room, and she looked up at me and said, "I'm dying aren't I?" I responded, "Yes". I asked if she wanted to talk about it and she said no. That was the only time she acknowledged her situation verbally. That was her decision and I respected it. Me, I am a talker and would want to discuss the meaning of life until I drove everyone crazy <g>. You just have to follow the cues from the person you care about and not step over their boundaries. Those boundaries are long established and it isn't fair for us to expect someone to cope in the way we would cope.

It may help for you to see a counsellor to talk about the grief and depression you are feeling. You sound young and very soft hearted so it may help you. Best of luck to you.
Laurel
 

kylisa

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Sometimes all you need to do is just be available for when he needs some support. I know this hard to hear but the time frame is as different for people to accept support as the progression rates of ALS sufferers.
 

MtPockets

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Joined
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Ms
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How informed is he about ALS? It might be an idea to download some articles about ALS and print them out, lay them where he can read them and see that you are interested in the subject. The more informed you become about the disease, the more he might be willing to discuss it with you.
I pray you will find an answer to this problem and be able to help him cope with this.
 

coffeegirl

New member
Joined
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Friend was DX
Country
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Thank you for your encouragement and help during a really tough time such as this.

In one aspect, I am truly very concerned about my boyfriends well being when he does face the realities of his dad and something happens.
You are right - to pry and make him talk about it would really make matters worse and I don't want to do that. I will choose to wait...he knows that if he ever wants to talk, I am always here and that is what matters the most.

I am so glad I have support like this...not quite sure what I would do without this!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
We'll help in any way we can.

AL.
 
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