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Old 11-04-2008, 10:24 PM   #91
Elfstar
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Well, we're back from our trip, which went well. AKL is spectacular - it was so cool to look out the window of our room and see a giraffe stroll by. Jim was so happy to be there, we were both so relaxed it was wonderful. The bed was the most comfortable I've ever slept in, and I wish Jim wasn't confined to his chair so he could have been as comfortable as I was. I managed all his care just fine, we went to three of the four parks (didn't have time for Animal Kingdom) and did a lot of "remember when we...". We laughed a lot, cried a little, just sat and held hands sometimes. Once I got all set to feed him, and eat my lunch at the same time, and he moved his chair to a different position, across from me. When I asked him what he was doing, he said he just wanted to sit where he could look at me. We even bought the bride and groom ears!

I have all my instructions now as for what to do once he's gone, too. That's where they crying part came in.

I wish our trip could have been longer but the time we had did tire him out. But we had a wonderful time (except he was always the photographer, and I couldn't figure out how to make the camera work) and I'm encouraging him to tell me where else he'd like to go, just for a weekend away alone together. And I told him if there's any way I can get more time off, and he wants to go to Disney again, just let me know. It did us both a world of good!
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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 11-05-2008, 05:03 AM   #92
kimis
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I am so GLAD you had a great trip! I was praying that you would!!!!!

It sounds like you had a difficult discussion but at least now that discussion is over and you can continue to make more memories as time allows. I have had to have those discussions so I know how hard they are to have.

Did you get any photo pass pictures? I hope so! You will always have the pictures that are in your heart.

Keep us posted on when that next trip might be.......
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Old 11-05-2008, 01:51 PM   #93
maryisme
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Elfstar,

I just found this thread today and read through the entire thing. I just wanted to let you know how sorry I am. I also hate this damn disease. I lost my dad to it 5 years ago while I was pregnant with my second child. He never did get to meet her. He would touch my stomach and start crying.

You have such a warm, caring spirit - it comes through in your writing. Congratulations on your wedding and am very glad your trip went well. You are in my thoughts and prayers. Continued strength to you as his caregiver and his DW.

Mary

Last edited by maryisme; 11-06-2008 at 01:20 PM.
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Old 11-05-2008, 02:02 PM   #94
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I am glad you had such a wonderful trip. I agree with maryisme, you do have a warm spirit and I wish you nothing but the best. We're all here if you need us.
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Old 11-05-2008, 02:41 PM   #95
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Thank you for the update. It sounds like you created a lot of wonderful memories.
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Old 11-06-2008, 01:21 PM   #96
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Hi Elfstar,

Just wanted to let you know you are in my thoughts and prayers.
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Old 11-06-2008, 07:41 PM   #97
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Hi, all, I'm glad you read about the trip. No matter what happens now, I'll always have those memories. And we celebrate our anniversary every week so we get as many in as we can in whatever time we have left! That was Jim's idea!!

I'm away again, at a conference for work at Myrtle Beach, at a resort where the rooms all have ocean views, and it's so serene, when I called Jim tonight I asked him to think about us coming here for a weekend, or even just overnight, just to watch and hear the ocean. With off season rates, we can do more than we could during the summer, so I'll take him any place he's willing to go!

Maryisme, I'm so sorry about your dad having had this too, and it's sad that he didn't get to meet his second grandchild. Thanks for the kind words, everyone; I'm here for all of you, too - my shoulders are broad enough for all of us! I love Jim deeply but I treat everyone as I would want to be treated (except people who stress me out; I pretend they don't exist).

I'm learning that life's easier when you share the pain (to those who are willing) as well as the laughter. One of the conference speakers today spoke on coping with stress (he also did magic as part of his program - we learned how to take off peoples' watches without them realizing it). He prescribes three things for coping; exercise, laughter (thus the magic tricks and jokes he told), and letting things (that stress us) go. Bend like a palm tree, don't break like an inflexible trunk (can't remember what trees break easily). It makes so much sense!
__________________
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 11-11-2008, 05:21 PM   #98
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Hello and glad that you are home safe. DH and I were in WDW from Nov 2nd-8th and was wishing that we could have met with you and Jim. Didn't know the exact dates the newely weds were there.
Will keep you both in my prayers. Shirley
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Old 12-03-2008, 03:01 PM   #99
cyndylou
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ALS is a monster

Elfstar and Catsrule, my heart goes out to you and your families. My DH first noticed cramping and weakening of his thumb 3 yrs ago. Carpal tunnel surgery did not fix it, and eventually he was diagnosed with ALS. However, since he does not yet have upper motor neuron involvement, it is not a definite diagnosis. He went through some tough treatments and tests to rule out everything else. He now has muscle atrophy, extreme weakness, and constant twitching in both arms. He does to the ALS clinic "just so the symptoms can be monitored." I know we're blessed that the disease has not progressed faster, but I still occasionally panic about the future.
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Old 12-04-2008, 08:51 PM   #100
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Cyndylou, I'll pray for you and your husband. Be grateful his symptoms are progressing slowly; hopefully they will continue that way. Whatever else you do as things progress, take care of yourself, too - constant caregiving can wear you out if you don't.

Jim went from reasonably okay to totally disabled in about six months. My heart is breaking because he's miserable, trapped in a useless body. I'm unhappy because he's miserable; but when he passes, although I'll be glad his suffering is over, I'll be miserable because he'll be gone. What a cruel, cruel disease. I'm trying to keep life as normal as possible for him as long as possible even though sometimes I almost agree with him when he asks me why I'm bothering. It's getting harder to make him smile and laugh. I'm beside myself with trying to keep up with this, with my elderly father who needs my help, too, my more than full time job, and our home and several pets. There aren't enough hours in my day, and if there were, I'm not sure I'd have the energy to keep going through them. The holidays feel like just another burden right now.

Guess I've been to busy to vent for a while - i just read what I wrote above, and that's not really me -
it's just frustration over having to cope with something totally beyond our control.
__________________
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 12-14-2008, 11:06 AM   #101
cyndylou
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Thinking of you

Elfstar, just wanted to say thanks for your kind words. I know you are going through a really rough time, and you must be a compassionate person because you took time to comfort me. I just wanted to say I am thinking of you and Jim.
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Old 12-16-2008, 06:13 AM   #102
kimis
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Hi Elfstar! I am checking in to see how things are going and to let you know you are still in my prayers. I hope you are having more good days than bad days. Hang in there!
__________________
2009-POR:
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 12-27-2008, 03:03 PM   #103
Elfstar
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Hi, Friends, hope everyone had a peaceful Christmas at least. Ours was pretty good, Jim had an anxiety attack but that was the extent of the day's problems. We all got him movies for Christmas so he's well stocked between that and what we rent. He's lost all use of his hands now which really frustrates him; being able to control his chair was his last bit of independence.

I may be being laid off in the next few weeks, permanently unfortunately, but at least I'd be able to stay home and care for him all the time as it's getting to be too much for his mother; our other option is sending him to the hospice facility which is just fine but we'd of course prefer to keep him at home if at all possible.

Here's hoping that 2009 is a little kinder to everyone than 2008 has been.
__________________
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 12-27-2008, 04:27 PM   #104
safetymom
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I am sorry to hear the new trials you both have been going through. I will keep you both in my prayers. I admire you both so much!!!
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Old 12-31-2008, 10:21 PM   #105
Elfstar
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Jim was admitted to Hospice House this afternoon - his hands and arms are swollen, his speech has gotten much harder to understand, and he's using oxygen. He says he's comfortable though, and the place is spotless, staff seems really caring, I don't know how much longer we've got together but I'm going to treasure every moment.
__________________
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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