Question about ALS

[BethU]

You will be a great nurse! And in a position to do so much good for PALS and others who are suffering, too. I am in awe of your energy and strength!

BethU

 

[Debbie53]

Hi TRLESH,

I know exactly what you mean. My dad was recently diagnosed and neither he nor anyone else in my family really wants to know what to expect, but I sure do! How else can you make things as good as they can be? I want to scream, get doctors' attention, work on this round the clock (though I can't). I feel like everyone around me is in denial - and I know that's their right, but it is frustrating.

Don't give up! Debbie53

 

[brendapals]

Beth,

Please don't be in awe of my energy-right now I feel like a wooped pup! Yes, tonight was the first night of class, and even though I've been a nurse for 8 yrs, I felt like a freshman all over again!
Can't wait to hear back from the instructor about having a student in class with ALS.

I actually had a retired nurse ask me today when I thought I could start "getting a blood transfusion before it goes all the way into leukemia"- not sure at all what she meant by that, but I got to do my usual little 10 minute speech about ALS.

hugs to you,
brenda

 

[Wayne in Nova Scotia]

For Debbie 53

Hi Debbie I am a volunteer caregiver and most recently have worked with two ALS sufferers and their families - the one contrast I found that stood out the most was that the first individual was an avid typist/computer person while the second was not, thus closing off a large part of their outside world.
I think that most sufferers agree communication at some point becomes one of the most difficult challenges and anything that can be done to encourage someone diagnosed with ALS to develop these skills will definitely benefit 'everyone'.
It may also take someone from 'outside' the family for your dad to connect with and eventually open up.
Lastly, take care of yourself.
Wayne

 

[califsand]

Good point about many healthcare workers NOT knowing what ALS is! When my Dad lived with me and visiting nurses and even hospice nurses came in, I found myself explaining over and over what it was. I eventually printed out a bunch of info about the disease and would just hand it to them to read when they got here because it was almost always someone new.

Wayne in Nova Scotia... maybe I'm the only one but I have to say that your soliciting here really makes me uncomfortable and bothers me. I suggest starting your own blog where people have the choice whether or not to get involved in your discussion about what you want to do. These posts here are for caregivers to talk about what they are going through and to get support from others who are going through it as well. I think that there is a fine line between helping and using and for me it feels you are crossing that line. I'm not trying to be rude, it's just how I feel. There are advocates available to us through ALS, MDA and Hospice... you could maybe talk to those organizations about your ideas & see what they think. I don't think that this room is an appropriate place for you to do a study group. Maybe there is another part of the forum where it would be appropriate. I'm sure that one of the moderators could discuss with you the best place and way for you to get feedback.

 

[CindyM]

Well, we certainly do not want you to feel uncomfortable, Sandy. You are right that we want people to feel supported. :-D

That said, others here have asked for help with various ALS-type projects and sometimes they find people interested in what they are doing. But now that we have the blog system, that might be a good way to go.

A lot of times people post their email addresses for anyone who wants to particiate, but I don't advise this. To many people read and see these boards and it leaves the address open to the world.
Hope this helps, Cindy

 

[califsand]

Thanks Cindy, I feel bad to say that someone in here is making me uncomfortable. But he's not here for the reasons we are and it feels like someone is peeping in on our pain. Am I the only one that feels that way? I'm a bit sensitive this week, maybe overly but can't help but feel our pain is being used for someone elses gain.

What we go through on a daily basis is so hard. I just got home from my nightly visit with my Dad and feel the nightly pain of seeing him so disintegrated and helpless because he is helpless and there is not much that can be done now but medicate. Nobody can fix it, nobody can help it, the only thing to do is watch and try not to self destruct in the process. It sometimes takes too much energy to even try... I got written up at work today for absences, my fault but I'm just so tired & overwhelmed from watching my Dad go through this for so long now. It's horrible and I hate to think it but while I'm scared to lose him I'm even more afraid that he will be in this state of limbo for the rest of my life and I can't have any kind of life while I experience this with him. I'm losing my mind! This is private pain... you know? It is not for someone to use!

I think that if someone wants to post a blog about something they are researching that is appropriate... I'm sure that lots of people would be interested.

 

[BethU]

Thanks Cindy, I feel bad to say that someone in here is making me uncomfortable. But he's not here for the reasons we are and it feels like someone is peeping in on our pain. Am I the only one that feels that way?

Sandi, I agree with you and was glad to see your post. I, too, felt there was a bit of a hustle going on.

I can't imagine the pain you are going through with your dad ... If my dad had had to suffer like that, I would have lost my mind. I hope there is some way you can get some rest and relief from your 24/7 care. I know your dad would not want you to be going through this agony on his behalf!

Please find some time and space for yourself. You aren't responsible for keeping your dad alive. ... that is beyond human control. All you can do is keep him as comfortable as possible, which you are doing magnificently, show him your love, which you are also doing magnificently, and release him when he is ready to go. As Al suggested, let him be the one to make that decision.

Blessings,
BethU

 

[califsand]

Thanks Beth, I'm glad that it wasn't just me that feels that way seeing those posts. I feel bad to get off the topic of the thread here as it is! This thread isn't about me...

Dad is in a hospice house now. He did live with me for a year but he got to a point of falling upwards of 4 times per day and I had to call the fire department each time to help me pick him up. I was so tired & in pain from how much physical care was involved! He's been at the hospice house almost a year now! Every day he is thinner and more helpless, has new symptoms and my evening visits are the highlight of his day but work me over more and more. It's horrid to watch him die this slow, painful and humiliating death. My brother, who usually visits him a few times a week, has taken two back to back vacations so hasn't been around for 2 weeks now. I think that may be what is making it even harder... he is the one that helps and he's not here so I'm there twice as much and envious at his ability to go away. At the same time, I adore my brother & I'm glad he has the opportunity to go away. Talk about conflicted! ha, I'm a mess of mixed emotions!

Hopefully Wayne will create his own thread or blog & allow people to go talk to him out of their own desire.... I'm all for finding ways to help.

 

[BethU]

I hope your brother gets back soon and gives you some relief. I am praying for you and your dad ..

BethU