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Old 09-16-2008, 06:37 AM   #61
safetymom
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I understand too. I hope you are able to take your trip. You are a great woman for all you do for him.
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Old 09-16-2008, 07:28 AM   #62
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ELfstar I understand what being a caregiver is. I took care of my mom when she was dying from cancer. It is so hard on the caregiver. Hang in there.
All of your friends here will listen to you and pray for you.
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Old 09-16-2008, 09:44 AM   #63
TammyNC
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Just coming back to the boards after being off for a long time and saw your post. I want you to know that I will be keeping you in my prayers daily.

My dad was 51 when he passed away from ALS in 1999. He did last about 15 months after being diagnosed but he progressed very quickly. Thankfully, my parents only lived 5 min away because mom had to continue to work and I would help with feeding, etc. while she was away during the day. We would have to go over in the night to help pick him up when he started falling. My brother is in the Air Force so of course couldn't be around as much.

I have to say that I learned so much from my dad during that time though. He never ask those questions, why me, etc. It changed our life because you really do realize how precious each day is and how you need to live it to it's fulliest.

I am sorry that you are having problems with his father...I know we all show our anger, frustration, etc. differently but hopefully he will realize soon that he needs to control it so he can have peace when all is over. Will be looking for updates about your wedding and praying that you can get a least a few days in at AKL since that is one thing that he wants to do.

Sounds like the tube, chair, and all is helping him do a few more things that he wasn't able to do before.

Again, will be praying hard for you all and everyone else that has posted that they are dealing with this horrible disease as well.
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Old 09-18-2008, 08:07 PM   #64
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Thank you, everyone, it's our friends' encouragement that helps all of us caregivers going.
I don't have too many really down moments like that but I guess it's to be expected once in a while. Jim, his mom and his daughter appreciate my caring for him; that's really all that matters.
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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 09-18-2008, 09:01 PM   #65
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Elfstar I just noticed this thread and have been moved to tears by your (and everyone else's) experiences. I am so very sorry for you, Jim, and the rest of your family. I can't even begin to imagine how terrible and painful this must be, but I know you're all very, very strong people. I've been sick lately with some stomach issues which have lead to very bad depression and anxiety, and have been feeling so sorry for myself, but this puts it all into perspective to me (not to hijack your thread!). It's pretty much a reality check that many people out there have it a lot harder than I do and they're very strong through it all.

I'm so happy to hear that you plan to marry! That is wonderful. I hope you can get to AKL as well! My heart and prayers are with you, Jim, and everyone else. Us DISers are always here to lend and ear, a shoulder, anything!!
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Old 09-19-2008, 07:47 PM   #66
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I booked our trip today! Four nights at AKL, Savannah view starting on October 29 - really shouldn't but it's Jim's final trip - that's what credit cards are for. I wish we could have gotten a sooner date but they didn't have any Savannah rooms any sooner. I had the best person on the phone, I explained why timing was important for us, and she took my number and called me back (their computer system was down when I called) to help me find a date when they'd have what we wanted.

It cheered him up when I told him, and it has me excited and planning (not too much - I told him we'll do as much or as little as he wants and is up to). We should be getting married next Saturday unless something crazy happens. We're at the top of the emotional roller coaster again, if only for a little while.

Thank you all for your continued prayers and good wishes - ours are here for you, too.
__________________
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 09-19-2008, 08:09 PM   #67
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Hi Elfstar! I was thinking about you today. Congratulations on Saturdays wedding. I hope and pray your trip is very special with lots of memories. You are in my prayers
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Old 09-19-2008, 10:32 PM   #68
rie'smom
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Bless your heart. Best wishes on your marriage. Your trip will be magical. You're all in my prayers.
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Old 09-20-2008, 05:56 AM   #69
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That is wonderful news. I know you both will enjoy it.
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Old 09-26-2008, 08:29 AM   #70
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Elfstar, I've been following your story for some time now. I hope your wedding plans go wonderfully tomorrow, I'll be thinking of you. You are so lucky to be marrying this wonderful man. I wish you many blessings, and many happy memories.
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Old 09-26-2008, 02:42 PM   #71
kimis
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Elfstar I am sending lots of pixie dust your way tomorrow! I hope you have a great wedding. I am praying for a great trip to disney also.
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2008-POR
2007- POR
2007-DL Paradise Pier
2007-DL Candy cane Inn
2007-DL Portofino Inn
2006-POR 2005-POR 2005- DL Paradise Pier 1999-Dixie Landings (1st of many trips-I hope!) 1999- DL Holiday Inn and many more DL trips
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Old 09-26-2008, 04:03 PM   #72
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I found something out something very sad a few days ago.

Lou Gehrig gave his goodbye speech to the public July 4th 1939. Many years later on July 4th 2005 my Dad died of the same disease he had.

I know how hard it is to loose someone to this disease, I was only 9 at the time of my father's death. I miss my father greatly and I will keep you in my prayers.

God Bless you and your family!
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Old 09-27-2008, 03:52 PM   #73
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Elfstar.....here's praying that you two have gotten married and had blessed day. I will pray that you have a wonderful and happy time in WDW too. Shirley
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Old 09-30-2008, 09:06 PM   #74
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Hi, friends, no, we're not married yet, of all things, I got sick, couldn't lift my head off the pillow for three days. BUT - we are rescheduled for 10/11 at 4:00 pm - so think of us then, say a prayer that we have at least several months together, and I'll confirm that we finally tied the knot!

Funny thing I forgot to mention before, Jim always says I don't mind well (I am an independent spirit) - i jokingly asked if he was going to ask me to obey him, and he replied "like THAT would ever happen" I do love this crazy man!
__________________
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 10-06-2008, 08:53 AM   #75
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Everyone makes there own decisions and there are no wrong or right ones.

We choose not to tube my mom. She had Alzheimer and other complications. She died a few days later.

I'm so glad shes not suffering anymore. She suffered way to long.
I want her back soooooooooo bad!!!!!!!!!!!

I'm never going to be the same and I do not know how to get through the day.

She passed Thursday October 2, 2008.


I'm praying for you all.
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