Friend with ALS

[claire1308]

Hello Everyone. I'm new to the group though I've been poking around here for quite awhile. I have become very close to a fellow graduate student who has ALS. Her family is not terribly supportive. I think partly because she wants to be independent, but I am very worried about her health and her decision-making. I hope that doesn't sound condescending because I love her dearly and think she is one of the most brilliant people I have ever met.

My friend lives alone still and should be living alone, maintaining her autonomy. My concern is that she always pushes herself so hard. The most recent case of this that scared me so badly happened today but has been culminating over the last week.

It started as a terrible cough and cold but quickly progressed. She still kept pushing herself even coming to class on Thursday night with a fever of 102 degrees, no voice and the shakes from the high fever. She ended up in the hospital on Friday. Called herself and got herself there without contacting loved ones. Was there until Sunday morning. They determined that she had pneumonia.

Still she came to class today with a fever again and the shakes and kept using the rescue inhaler they prescribed for her. Tonight, I came over to keep her company and her breathing was shallow and her breath rate up to 36 breaths per minute. She kept insisting she was fine and that she knows when it's too much. She would momentarily lose consciousness. She said she was falling asleep, but I honestly don't believe her. I've seen her fall asleep and I've seen her lose consciousness (her shoulder has popped out on a number of occasions and often she passes out afterwards).

I didn't want to disrespect her autonomy, but I was really worried about her. I still am. I am currently sitting in her living room (while she is trying to sleep in her bedroom) typing this to help process the experience. I still want to call her doctor just to see about getting her a breathing aid (whether it's oxygen or something else). But she won't let me nor give me the number. She thinks they'll make her go to the hospital and says she doesn't need to. I am worried about leaving but know it makes her uncomfortable for me to be here and worried. I'm not her family nor am I her doctor or case worker. (her breathing has calmed down since I helped her to bed)

I understand (empirically, I cannot fully feel and comprehend) that she hates the hospital, that she hates being sick (with ALS and a complication such as this), that she wants to be better and not in the hospital as much as possible since she doesn't know how much time she has, that she is, pardon my language, but a grown-a** woman that I can't tell what she should or shouldn't do. And ultimately I have to trust that she knows her limits. So. I don't know what my question is. I know there's nothing really I can do except love her like I do, but I'm worried about how hard she pushes herself in these situations. I worry that she is putting herself in danger.


Any thoughts? any similar situations? I really want to stress that I'm not pretending to know what's best for her. This is coming from a place of the utmost love and respect. I love her like a sister and, well, I'm just really worried.

Thanks Everyone!

 

[Zaphoon]

Claire,

Your friend needs some serious help. ALS is no ordinary sickness and the progression of the disease can be very rapid. The pneumonia episode should tell you at the very least that your friend does not know when to quit or give things a rest.

You are probably correct in your assumption that she was passing out, not falling asleep. Either your friend doesn't understand what she has or she is being careless to the point of wreckless with her life.

At some point very soon, she is going to have to accept the fact that living on her own is unwise (stupid!). Perhaps she doesn't understand the stupidity in her recent behavior.

Tell her that depriving her brain of oxygen will serve only to diminish her mental capacity. She probably needs a cpap or bipap so she'll have enough oxygen to function properly.

She needs help!

Zaphoon

P.S. I have an idea - make certain to check in on her on a daily basis. When you can't do this, ask a friend to do it. Don't worry about annoying her. She has to see that people are rightly concerned for he well being when she's trying to live alone.

 

[Al]

Hi Claire. Sorry your friend is so stubborn. She needs to realize that many ALS patients die from pneumonia. Pushing herself as you say she is makes me wonder if it is sub conscious self destructive behavior. Depression is most often an offshoot of an ALS diagnosis and can go unrecognised. I'm no doctor but I think your friend needs to face some hard facts. If she won't let you help maybe you can get her to seek professional help.

AL.