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hunpy66

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Aug 19, 2009
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Friend was DX
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NY
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Rochester
OK...last night I spent the night with my friend who as ALS...I did so to give her husband a little break for sleep. When I arrived at 10pm as her aide was leaving...my goal was to climb into the bed next to her wheelchair and got to sleep. She insisted on communicating and complaining for almost 2 hours. I understand as a friend I should listen and be there for her...but we really needed to sleep. We finally got to sleep at 12:30, she awoke 2 times requesting pain meds, and needing the bed pan. She was not very nice to her husband when he was getting ready to leave for work this morning. It's just not good. I am sure that she feels angry, scared, worried, etc. I have attempted to address these issues though most recently she would rather complain and tell me details about disagreements and other things that are occurring. I don't know how the family is doing this. I am exhausted after one night. I can't imagine where this is all going and where she will be spending her last days. Thanks for listening and allowing me to vent.
 
I'm so sorry you are going through that. I completely understand what that's like. Do you think she'd agree to be medicated in any way? Maybe something to help her sleep at night and something to ease her anxiety during the day. If she had some help with her emotions that would make it easier on you and the family caring for her.
 
It was wonderful of you to give her husband a break, and allow her to communicate with a sympathetic friend. Imagine the PALS out there who have no friends to talk to. I'm sure you're right that she is angry, scared, and worried, plus she's clearly in pain and helpless. "Addressing" the issues doesn't always help people work through their fears ... sometimes they just need a friend to talk to.

I'm sorry it was so hard on you; this is why all caregivers go to heaven.
 
BethU states, "I'm sorry it was so hard on you; this is why all caregivers go to heaven."

Beth, I don't mean to get sidetracked, but I heard that statement you made before somewhere. I don't want people misled thinking that their good works alone will get them to heaven, because it won't, according to my Bible.
 
Jake, I appreciate your point of view. However, I was speaking metaphorically, not making a theological argument for or against good works. There is a thread for people who want to discuss ALS in Christian terms, if that is your religion of choice.

Fortunately, our caregivers don't seem to be carrying these heavy loads hoping it will pay off with pie in the sky, but out of love, compassion, strength of character, friendship in some cases, a sense of duty in some cases, and in all cases a belief that it is the right thing to do.

Thank God for all our caregivers.
 
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Beth...you are seriously an amazing writer. You handle yourself with such grace...even dealing with members that pop in just to hassle. You summed up the definition of a caregiver in the most amazing way...I am going to save it..and show it to my friends. Please know that I think about you and your hubby all the time...please know that your writing..gives me strength.
 
Kelly,

I'm not here to "Hassle" anyone. I said what I did out of concern for people that might actually believe a statement like that. I thank God everyday for my wife that cares for me. Without my wife I would'nt be able to take care of myself. Caretakers are an angel sent from God.
But my wife realizes that being a caretaker for me isn't what is going to get her to heaven.
 
Beth you are so much better a person than I... without your good example I would have just gone with a sarcastic comeback. You took the high road, and for today, I shall choose to follow your wisdom and keep my mouth (er... fingers...) silent.
 
Katie ... if it had been an "in-person" exchange (and I were still able to speak) it would have popped out very differently! :razz:

And Jake ... Thanks for the compliment, but the day anybody turns to me as a religious authority on biblical matters, we are all going to be in bigger doo-doo than we are now. I **sincerely** don't think anybody will argue at the Pearly Gates, "But BethU said I could come in."
 
Wow BethU you have an angel's tongue, you devil you. I just can't handle religious ideologues at all, of any persuasion. I just look back at history right up to the present day and see how much mischief they and their goofy beliefs are responsible for. See, I told you I couldn't handle them.
 
Can I too say well said BethU. I too am not of the religious persuasion, though did go to sunday school etc. My husband has also been religiously raised and his parents were and are communed regularly, played the organ in church, always the most giving of people etc. The things my mother in law has gone through over the years - we have nearly lost her on numerous occasions, has made my husband now go if God could do this to someone as devoted as his mum...well you can follow the rest.

I think the type of person it takes to be a caretaker, would be the type of person who throughout their lives would live in a way to get them to heaven.
 
Why are we arguing over religion?

If anyone wants to discuss this topic then go to
https://www.alsforums.com/forum/people-als-pals/4711-christians-here-help-you-talk.html
You have the right to chose to not believe in God, Jesus, or whatever, but why attack someone who expresses an opinion like this concerns me?
As Rodney King said, "Can't we all just get along?"

To give you another perspective of why I CHOOSE to be a Christian go read my Blogs at:
https://www.alsforums.com/forum/blogs/mtpockets/
I have spent over 20 years now with chronic low back pain due to an airplane injury. I have woke up at night screaming in pain that no pain meds could touch. Why? Who knows. Now I have ALS on top of that.
If anyone has a reason to be mad at God it is me. I do not play the blame game with whatever life throws my way. I trust that my creator will mold and shape me with whatever means He decides to use.

Yes, there have been a lot of things done that were very wrong in the name of Religion. I agree. Just because someone says they are religious does not mean they know God or have a personal relationship with his son Jesus Christ. Millions have been murdered over the years in the of religion, but does that mean the bible and what it says is not true?
I am not religious, I am a Christian and I consider that something totally different.
I leave you with this parting thought:
Matthew 7:21-23
21 Not every one that saith unto me, Lord, Lord, shall enter into the kingdom of heaven; but he that doeth the will of my Father which is in heaven.
22 Many will say to me in that day, Lord, Lord, have we not prophesied in thy name? and in thy name have cast out devils? and in thy name done many wonderful works?
23 And then will I profess unto them, I never knew you: depart from me, ye that work iniquity.
John 14:
6 Jesus saith unto him, I am the way, the truth, and the life: no man cometh unto the Father, but by me
 
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Well said Al. Since this has already been brought up for discussion, I will make one point and if anyone wants to discuss it further Al has already given the link to a thread devoted to this kind of discussion.

God did not do this to any of us. We live in a fallen word and the god of this world (satan) is the one who inflicts us with bad things. Yes, God has allowed things to happen to us but did not initiate them. He gives us the strength and grace to deal with them if we ask for and accept His help. I always find it amusing that we spend, as a nation, all our time telling God to stay out of our lives and then get mad at Him when something happens. We can't have it both ways.

If I have upset anyone with what I have said and you want to discuss it further, please respond in the above mentioned thread.

Just know that God Loves you! And so do I.
 
Getting back to hunpy66 and the telling that the patient complained..... I'd like to say, who has better reason? Just try to turn the complaining around to finding things to be thankful for. It is a great gift to give any caregiver a break.... but staying up past midnight listening to complaining is a breeze. Wait 'till you see what is likely to come and put yourself into the shoes of that person in wheelchair or bed.

I only had 2 1/2 hours of sleep the other night.

Yes, there should be (and maybe there are) classes to take on being a PALS or a CALS.
There is much to learn.... much to know. Let's just strive not to have any regrets.
 
hunpy,

That was a great thing you did by allowing your friend's husband some relief from caregiving.

Have you spoken to the husband about what he is experiencing? Perhaps he is really used to his wife's complaining, but they both need some help in getting rest. As we all know, without rest we can really be grouchy!

Is this the first time she has ever complained about her husband and their disagreements? I would venture to say, probably not even pre-diagnosis. That's what a real friend's ears are for - bending. It just seems worse when they are totally dependent on someone to care for them.

I do understand your concern and agree with asantiago about meds to help her mood and maybe give her a sound night's rest and in return her husband can rest as well.

Thank you for being a friend to someone who needs you.
 
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