DH has ALS (Lou Gehrig's disease)

[Mrs. M. Mouse]

Oh elfstar. I'm so sorry to hear your news. you and your family will remain in my prayers!

allie

 

[TheDisneyGirl02]

 

[catsrule]

Thank you, Elfstar, for the kind words. Unfortunately it will be too late for my nephew also. This is his 3rd year with this crap, and they are giving him six months as well (that was 3 months ago). He can no longer walk or talk, and can barely eat. He refuses a feeding or breathing tube. He will be leaving behind 3 little ones (12, 10, 6). No one in our families has ever had this, so quite a shock dealing with this. He has signed up with Hospice now.
Prayers and thoughts back at you, Elfstar.

 

[kimis]

Elfstar I am so sorry!
Catsrule I am so sorry!
All of you are in my prayers!!!! I was wondering (I am not trying to interfere) but has hospice been called in either situation? If not you might think about it, they are a great help in just about any area you may need.
Again you are in my prayers.

 

[catsrule]

Yes, my nephew is now signed up for hospice. He has been in a facility also. Hospice comes by a couple of times a week and checks up on him.

 

[jacksonsmom]

Oh Elfstar, I am so sorry to hear the lastest news My heart is breaking for you.

ALS sux! I hate it so much. I wish someone somewhere would find a cure or at least something to help these people that come down with this disease.
The disease just seems so hopeless.

My dad isn't doing good at all right now. I won't get into all the details, but basically he developed a cold/cough. It's hard to say if he will be able to fight this. Right now his lungs are clear, but the dr said it could change at any time. They are watching him very closely.
It's been very rough and hard on everyone

I hate ALS with every fiber in my body!

I am so sorry so many are dealing with it.

 

[Suzimom]

I'm so very sorry. I've been trying to think of something else to say, but that's really all it comes down to at this point.

I know your husband must be very sad for you, and not just for himself. It sounds like you are both (as well as his family) devoted to supporting each other through this; I truly get the impression that you and he have had a strong, loving relationship through your years together.

It's so good that you are hooked up with a support group. Friends and acquaintances can give a lot of love and sympathy, but people who REALLY know what you're going through are so important for you and your family right now.

God's Blessings...

Susan

 

[mjwolfe]

Elfstar,
I am sorry to hear this latest news...

you are in my prayers.

-Marti

 

[Elfstar]

Thank you all, all prayers and suggestions (Kimis, hospice is coming soon - but had we not already been aware of them, I'd have been so grateful for your question - that was not any kind of interference - every little bit of information can make such a difference) are so welcome. I'm heartsick at all of this, and tonight we discussed and confirmed Jim's wishes for himself and his belongings. It was so hard to discuss but I'm so grateful it's covered - it goes to the lawyer this week.

I asked Jim if he had any last wish to go somewhere or do something while he's still reasonably able - he's getting a power chair in the next week, so that will make things a little easier for all - more comfort and less exertion for him, less exertion for his parents (83 and 77) and me - I'm only 56 and was an EMT for 17 years - I thank God everyday for all the training I had that comes in so handy now - lifting and moving him without hurting him or myself, general medical and emergency care. He did have a wish, so I've asked for an application for one of the wish granting foundations and am keeping my fingers crossed. It would be nice to get away one more time but he's losing ground at such a pace I don't know if it will happen.

Jacksonsmom, I'm so sorry about your dad, and you're right, ALS is simply inhumane. I wouldn't wish this disease on my worst enemy. I hope he gets through his cold without too much trouble. I'll add him to my prayers.

Suzimom, my name is Susan, also. And thank you, Jim is very sad for me, he says constantly that he worries about me, and he said last night that I shouldn't worry, that his love for me will still be here with me even when he's gone. And I was trying sooo hard not to cry in front of him but that did it!

Antmaril, and mjwolfe, thank you both, I know you also have your own trials. I'm here with two ears and s for all of you, too. Thanks for listening.

 

[catsrule]

I'm so sorry Elfstar. I know what you are going through and how difficult it is. Prayers for you and yours.

jacksonsmom, I feel the same way. Prayers for your dad.

 

[GDUL]

I would like to say that I'm sorry to hear of so many of your family members that have this dreadful disease. If they are having problems coughing out their pulmonary secretions, you might want to look at the Cough Assist. It's a machine that moves secretions out of the lungs noninvasively. Basically, it gives the user a positive pressure breath and follows that with a rapid shift to a negative pressure exhalation. The shift from positive to negative pressure is a cough (or helps a poor cough). It has to be ordered by a doctor and will be set up by a homecare company. Here's some information on the Cough Assist:

http://coughassist.respironics.com/default.asp

Gary

 

[Cruella 66]

I just want to say how sorry I am this type of thread has to be out here...so many good people have struggled with ALS and lost. My grandfather in 1985 and now my mom on July 13th. All is still fresh but, elfstar, she went as fast as your husband is progressing. My mom didn't want feeding tubes, intubation, IV's, etc. She was 58. Love your husband, share the fun memories, and even though it's hard for him to communicate to you, talk to him. It's a beautiful thing you're doing by taking care of him. Cindy

 

[Elfstar]

Gdul, thank you for the cough assist info - that may come in handy.

Cruella 66, I am so sorry for the loss of your grandfather and your mom. I'll keep you and your family in my prayers. If your mom went quickly, all the better for her. Until they leash this monster, that's all we can hope for - minimize the suffering of the patients. Yes, I say this now but I will be devastated when I lose him, even though he'll be better off.

I do talk to Jim, we're making a game of what I think I hear versus what he really says. It keeps both of us laughing. His mother has even joined in a little bit. And when he's being serious, I do listen hard. And we have the communication device now, that helps when we can get him to use it.

And I couldn't not take care of him - and really, while we've been together for 17 years, we're not legally married. But we are true partners, I love him so dearly, and I wouldn't think of doing anything else. I wish I didn't have to work and could take care of him full time. But, there's a house to support and bills to pay. If it comes to the point where it's too much for his parents to care for him during the day, and if hospice can't relieve the strain, I will do just that. I won't consider putting him in a facility unless it absolutely can't be helped. Once he's gone, I'll have enough empty time on my hands so I'll probably want a second job anyway. That will make up for any time I've had to not work. (I buy a lottery ticket now and then but am not holding out any hope from that direction, !)

 

[jacksonsmom]

And I couldn't not take care of him - and really, while we've been together for 17 years, we're not legally married. But we are true partners, I love him so dearly, and I wouldn't think of doing anything else. I wish I didn't have to work and could take care of him full time. But, there's a house to support and bills to pay. If it comes to the point where it's too much for his parents to care for him during the day, and if hospice can't relieve the strain, I will do just that. I won't consider putting him in a facility unless it absolutely can't be helped. Once he's gone, I'll have enough empty time on my hands so I'll probably want a second job anyway. That will make up for any time I've had to not work. (I buy a lottery ticket now and then but am not holding out any hope from that direction, !)

That is exactly how my dad's wife feels. She takes care of my dad and I can see it is hard work, but she would never think of putting him in a nursing home or anything like that.

He does have a health care worker come in M-F for 2 hours a day, so that helps a little bit.

My dad's wife still has to work (those bills never stop even when someone is very sick), she wishes she didn't have to but what can you do?

Not to hijack the thread, but some good news on my dad. His cough seems to be getting better. So we might be starting to get over this hurdle. He is still coughing, but nothing like he was doing and his fever is gone too.
One day at a time with ALS

 

[Cruella 66]

That's exactly how I took it with my mom...one day at a time. She was on her way down though. I finished the school year here (I'm a school nurse) and went to help dad take care of her. We had hospice but there was only so much my mom wanted them to do. One was only a bath two days a week...she was comfortable with us doing it the other days. Two and this was a HUGE help...a massage therapist would come to the house. I highly recommend this as it really helped my mom. She reached the point where she was choking too much and stopped eating. After 10 days she stopped drinking (even then it was only sips) and it was then we started measuring the time in hours. Best wishes to everyone, Cindy

 

[Elfstar]

Hi, friends,

Jim's still trying to stay cheerful but is visibly fading. Everything we try to get him to eat has to be run through the food processor and well diluted with broth or stock of some kind and really coax him to take it. He's got an appointment with a surgeon on Thursday about the feeding tube placement. I only hope it can be done quickly because it's difficult to keep him hydrated right now and he's still losing weight. He takes frequent five minute naps and then can't sleep through the night.

The nicest thing happened to me at work - I got called into a "5 minute standup meeting" last Friday - which was actually a "we love you" to me from the folks I work with. They told me how much I mean to them and how they're all willing to help us in any way they can. They presented me with a "caring" basket containing bath products, candles, a book, a soothing music CD, snacks, chocolate, several gift cards for stores, gas, a restaurant, and a gift certificate to a spa and another for a manicure and pedicure. The topper was a photo album with "All About Him" on the front for me to fill with memories for later on. As you can guess, I cried. What a lovely, lovely thing for them to do. Jim was touched, too, at the love and generosity shown us.

 

[kimis]

What awesome coworkers! That was so nice! You keep hanging in there. You have more strength than you realize. We all are praying for you!

 

[Elfstar]

Thanks, Kimis, and everyone else. Yes, my work "family" is wonderful. I'm going to remember that when someone else is going through a hard time - it really gave my spirits a boost!

Jim got his feeding tube installed, it was done late yesterday. I'm sleeping in his room because the nurses can't understand his speech.
The procedure went well, he's tolerating it perfectly, and we go home tomorrow.
I'm relieved that this is done - one more hurdle behind us. His power chair is supposed to arrive Monday, so that will be another one. Even though he has really no use of his hands, we were guaranteed that he'll be able to control the chair and having a little mobility will certainly cheer him up. Things may be looking up a little bit.

 

[safetymom]

Elfstar, you have such a wonderful attitude. What a wonderful caregiver you must be. I know it has to be hard.

 

[Elfstar]

Thanks, Safetymom, I'm trying my best, and trying to take care of myself as best I can while I'm at it. It's easier to take some time each day for positive thoughts than just to dwell on the down side each day. Besides, every time I make him smile, I tell myself he'll last that minute longer! Oh, don't I wish I really had a magic wand!

Oh, and to top it all off, I have the shingles - life is NEVER dull around here!