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Old 07-18-2008, 03:52 PM   #31
GDUL
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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
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Old 07-18-2008, 07:04 PM   #32
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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
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Old 07-18-2008, 09:25 PM   #33
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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, !)
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When life gets tough, we go to WDW!!
1991 - CBR ; 1995, '99, 2004 - Off site
2005 - July 3 - 6 off site, 7 - 10 POFQ
2006 - 3 trips this year - all Disney'd out for now.
2007 - another wonderful week at WDW (off site)
2008 - the saddest year of my life - DH has ALS; AKL for his final trip.
2009 - DH passed on 1/3 - "memory trip" 3/5 - 3/9 with his daughter.
Memory trip 6/28 - 7/4 POFQ - first solo trip, a little rough
F & W Festival trip - 9/24 - 9/29 with sister-in-law - AKL
2010 - 6/19-25, DTD hotel - carried DH in my heart, had a lovely trip!
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Old 07-20-2008, 04:23 PM   #34
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Quote:
Originally Posted by Elfstar View Post
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
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Old 07-20-2008, 06:09 PM   #35
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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
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Old 07-29-2008, 09:32 PM   #36
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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.
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When life gets tough, we go to WDW!!
1991 - CBR ; 1995, '99, 2004 - Off site
2005 - July 3 - 6 off site, 7 - 10 POFQ
2006 - 3 trips this year - all Disney'd out for now.
2007 - another wonderful week at WDW (off site)
2008 - the saddest year of my life - DH has ALS; AKL for his final trip.
2009 - DH passed on 1/3 - "memory trip" 3/5 - 3/9 with his daughter.
Memory trip 6/28 - 7/4 POFQ - first solo trip, a little rough
F & W Festival trip - 9/24 - 9/29 with sister-in-law - AKL
2010 - 6/19-25, DTD hotel - carried DH in my heart, had a lovely trip!
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Old 07-31-2008, 07:52 AM   #37
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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!
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Old 08-02-2008, 10:44 PM   #38
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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.
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When life gets tough, we go to WDW!!
1991 - CBR ; 1995, '99, 2004 - Off site
2005 - July 3 - 6 off site, 7 - 10 POFQ
2006 - 3 trips this year - all Disney'd out for now.
2007 - another wonderful week at WDW (off site)
2008 - the saddest year of my life - DH has ALS; AKL for his final trip.
2009 - DH passed on 1/3 - "memory trip" 3/5 - 3/9 with his daughter.
Memory trip 6/28 - 7/4 POFQ - first solo trip, a little rough
F & W Festival trip - 9/24 - 9/29 with sister-in-law - AKL
2010 - 6/19-25, DTD hotel - carried DH in my heart, had a lovely trip!
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Old 08-03-2008, 05:26 AM   #39
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Elfstar, you have such a wonderful attitude. What a wonderful caregiver you must be. I know it has to be hard.
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Old 08-05-2008, 08:44 PM   #40
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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!
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When life gets tough, we go to WDW!!
1991 - CBR ; 1995, '99, 2004 - Off site
2005 - July 3 - 6 off site, 7 - 10 POFQ
2006 - 3 trips this year - all Disney'd out for now.
2007 - another wonderful week at WDW (off site)
2008 - the saddest year of my life - DH has ALS; AKL for his final trip.
2009 - DH passed on 1/3 - "memory trip" 3/5 - 3/9 with his daughter.
Memory trip 6/28 - 7/4 POFQ - first solo trip, a little rough
F & W Festival trip - 9/24 - 9/29 with sister-in-law - AKL
2010 - 6/19-25, DTD hotel - carried DH in my heart, had a lovely trip!

Last edited by Elfstar; 08-05-2008 at 09:31 PM.
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Old 08-08-2008, 11:44 AM   #41
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to you! You are dealing with this soooo well. You are incredible!!
My father went through this very same scenario last year. (died on 8/20/07) Except, his ALS progressed so fast we bearly knew what was going on. He wasn't diagnosed until 1 month before he died. We thought he had a stroke but he never recovered and the symptoms just kept coming so fast. First his voice was slurred, then he had trouble walking, then holding his head up. Lastly he had breathing difficulty and then he was gone.
Really wish we would have known more and cherrished those last few weeks.

Just keep making your DH laugh because, you're right, that laughter is like a magic wand.
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Old 08-08-2008, 01:01 PM   #42
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Hi Elfstar just checking in. You are on my daily prayer sheet. I hope you are hanging on and getting a couple of minutes for yourself. I know when I have trails my favorite place is my shower. I can talk or cry and no one hears me. Just me and God. Prayers
I am sure everyone is telling you that shingles is from stress so I won't go there. I have had shingles and you get more prayers, I just wanted you to know your friends here haven't forgot about you.
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Old 08-08-2008, 10:14 PM   #43
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D&DDisney, I'm so sorry about your dad. This disease is so hard to understand - some people live with it for years; others, like your dad, and maybe like DH, go so quickly it's hard to believe. And thanks for your kind words - I fall apart when I'm alone, like Kimi says, in the shower for example.
But outside, I will keep them laughing! I've got God and my friends here and at work to keep me going!

Kimi, the shingles have shown me the true meaning of the word annoying!! With the medicine I was given, that's all they are now but aargh! If they don't hurt, they itch; when they stop itching, they hurt. And don't sweat, then they do both! And Heaven forbid someone tries to hug you!!!

DH loves his power chair; we went for a walk when I got home from work, and reveled in doing such a simple thing that we used to take for granted. His regular wheelchair was not comfortable. The power chair is made to live in 24/7. Then he supervised while I put down pavers from the driveway to the ramp. The feeding tube is great - the procedure went well, he's tolerating it well, the incision pain is already gone. The stress this took off of us all - his mother and I to prepare food that would tempt him to eat, then run it all through the food processor and take 1-1/2 hours to feed him at each meal; the pressure on him was to eat enough to keep him going, and that's very tiring when your chewing and swallowing muscles don't work well. Now we just pour his "formula" in the tube and it's done with in a few minutes. And, we can make sure he gets enough water now, too. And he can still eat, or just taste, food for pleasure if he wishes. What a relief!

Thanks for checking up on us!
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When life gets tough, we go to WDW!!
1991 - CBR ; 1995, '99, 2004 - Off site
2005 - July 3 - 6 off site, 7 - 10 POFQ
2006 - 3 trips this year - all Disney'd out for now.
2007 - another wonderful week at WDW (off site)
2008 - the saddest year of my life - DH has ALS; AKL for his final trip.
2009 - DH passed on 1/3 - "memory trip" 3/5 - 3/9 with his daughter.
Memory trip 6/28 - 7/4 POFQ - first solo trip, a little rough
F & W Festival trip - 9/24 - 9/29 with sister-in-law - AKL
2010 - 6/19-25, DTD hotel - carried DH in my heart, had a lovely trip!
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Old 08-10-2008, 11:56 AM   #44
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I just want you to know that you and your husband are in my thoughts and prayers. Noone can understand how you feel, but know that others -people you don't even know care.
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Old 08-18-2008, 07:22 PM   #45
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I just found this thread tonight and Elfstar, you are such an inspiration. What an amazing attitude you and your DH have. I don't know that I could handle a similar situation with such grace. I will keep both of you in my thoughts and prayers, and want to thank you for reminding me that I need to stop and smell the roses every day.

God bless you!
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