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Active member
May 21, 2008
Loved one DX
Royal Oaks
My turn to vent. Friday, we went up to UCSF ALS center for a respiratory therapy visit. And my PAL end up staying in the hospital, because his breathing has become so weak and he has lost so much weight. That now they (the ALS team of Doctors) are talking about putting in a breathing tube and feeding tube.....things have been very sad for us over the weekend. I came home tonight to get clean clothes and to talk to my sons about their Dad's current situation.

My boys where very understanding....the worst of it all is that I have been waiting for my husband to try to make the best decision for himself...

Saturday, my Sister-in-law's girlfriend who she lives with, started a verbal argument with me, accusing me of keeping information from the family.....and today his other sister, started on me verbally and then told the doctor on duty that I am starving him and won't take care of him. And her out burst started because I ask her and the other family member who was in the room to step out for a minute while the respiratory therapist could answer some questions for my husband and I......about the breathing tube.

I am very upset and sad.....why do people have to act out when someone is dying.

Hi Christina - this is a very emotional time for you all and I hope you can find support from at least some of the family. If not, I hope your own friends and family are close by. Even a stranger from Hospice would be good at this point, since your husband's family is so emotional right now.

I hope you know that your request for privacy during a medical visit was not out of line. It is a shame some of the family cannot come to terms with with what is happening but they will have to face their behavior later. Meanwhile, you and your boys can take comfort in the fact that you can feel proud for all you are doing for your husband and the way you are handling this difficult time. Cordially, Cindy
Hi Chrisitina, first of all, my heart goes out to you, your husband, and your boys. May God bless each one of you. Sorry to hear about what your husband is going through. I am following you each step of the way, and it is such a shame that you are being treated so horribly by these people that know nothing about ALS. Do these people know what ALS does to a person that has been stricken by this disease? They need to look into this illness, before they start pointing fingers at you. You are doing the best you can, and this is one thing these people know nothing about. What makes them think that you are starving him to death? Just because he is losing weight? This is part of ALS, and they probably don't know it. Whatever they are doing Christina, they are doing out of ignorance.
I wish you the best Christina, and may God bless your family. Keep us posted on your husband's condition. You are in my prayers.

Your husband's family evidently knows nothing about ALS and that the weight loss is part of what happens in ALS. The weight loss is not all due to not getting enough calories, but it's also due to muscle atrophy and wasting. Could you ask a dietician or the doctor to sit down with some of your husband's family members and explain the process of ALS and how it affects the body? Having an understanding of what ALS does will help allay their suspicions that you are not providing adequate care for your husband.
I'm so sorry that in the midst of your struggle with your failing husband you have to endure such harsh criticism. I wish you well.
I still like the tee shirt that says "Google this: ALS."

Not to make light of your difficult situation. It just gets on my nerves when folks come out of the woodwork, thinking they know about something the average doctor does not understand.

I agree that it seems the family is ignorant or in denial about ALS. ( i have same problem w/ Hubby's family)

Maybe you could ask THEM ( the family ) what they would recommend to have your husband gain weight and "re innervate," in order to breathe and eat on his own. Maybe they know of some miracle cure we all have not heard of yet on the national news!

On the other hand, I can only recommend giving them something to read about ALS. Especially about breathing and eating. At a loss as what else you may do.

You really shouldn't have to be dealing with them at such a time as this!
Hi Christina,
As I'm sure you've already found - everyone has an opinion (usually uninformed!) about what you should or shouldn't be doing - we've all been there and had to listen to these stupid, know-nothing people (sorry if I sound a little bitter - have a nasty sister-in-law with a really big mouth!). CJ's advice is right on the money - put them on the spot the next time they start spouting - might make them think before they speak next time. You're doing your best in a really tough situation - hang in there!

You have every right to ask people to leave - your family is first and foremost - don't ever feel bad about it or what people say. You know in your heart you're doing the right thing, and so do all of us!
thank you everyone once again

We are finally back home and we are both very exhausted.......Friday we had an appointment with the respiratory therapist and she said he was in respiratory distress, so they wanted to keep him and after watching him over the weekend they wanted to put in a breathing tube and feeding tube.....the day of the surgery 2am in the morning George decided that he did not want to live that way and want to be at home. The oxygen that we was on was giving him bad Co2. So no oxygen only the bi pap machine for now on. Now I have to feed him, bath him, dress him and get him to bed. A medical aid will be coming into the house 4 hours a day to help him while I am at work. My Mom came in from Nebraska to help me out....George's family was treating really bad during the hospital husband's sister told the doctor that I was straving gets very sad when people are dying and sick and other people have to be so ugly. So that is the update for now....

I'm sorry you're at such a sad place right now. You've certainly had some heavy decisions to make and I think it's terrible for you to have to suffer criticism from people who seem not to have a grasp of what is going on. I'll bet you're exhausted!
No doubt your husband was so glad to get home again. There's no place like home! Thank goodness you have some help, though I'm sure that working and handling your husband's care now that he's home must be so tiring even with help. How nice of your mother to come in.
I'll be thinking of you with all your troubles. Be strong and hang in there.

I know you and your husband are probably so relieved to be home and in a peaceful environment. I'm sure your Mom will be a great help.

I hope your in-laws can in the meantime educate themselves about ALS and come to grips with what is happening to your husband.

Y'all are in my thoughts and I wish you the best. Please take care of yourself. Hope to hear how things are going for y'all.
Thank you so very much everyone

It is wonderful to have each ever one of you by my side. I love the fact that everyone is on the same page with this disease. If I could have just one wish, it would be to make this and all the terrible disease to have cures. I love you all, and thank you again for listening to me vent. Yes I am mentally and physically exhausted. Like I am sure all the care givers of the world are who deal with disease on 24/7 bases. This is the toughest thing I have ever had to do or see done to innocent people.

This is the toughest thing I have ever had to do or see done to innocent people.

That about says it all, Christina. So true, too! You will find the strength, though. Just make sure to get rest whenever possible. Maybe those in-laws could come over while you are at work and get a few lessons from the professional. After all, at some point you are going to need more that 4 hours a day and they might as well begin learning now, seeing as they are so far behind the curve!

Cindy took the words out of my mouth, I was going to ask do the in-laws ever offer to help!

To your question about the in-laws, no never offered to Mom has been her since Wednesday and has already gone and started laundry, took my kids to great america amusment park and spent time cleaning the kitchen for me and helped out cooking meals. Never in my 16 years of marriage have they ever offered to help us out.

Some family members are like that. Some pitch in without being asked and others sit and watch! But his family is going to have to learn for several reasons. First, he is going to need a lot more help as time goes by. Second, he is not, no matter what they wish to believe, going to get any better. They had best start spending more time with their son and their grandchildren, IMO.
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