DH has ALS (Lou Gehrig's disease)

[safetymom]

I understand too. I hope you are able to take your trip. You are a great woman for all you do for him.

 

[kimis]

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.

 

[TammyNC]

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.

 

[Elfstar]

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.

 

[BarbieGal457]

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!!

 

[Elfstar]

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.

 

[kimis]

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

 

[rie'smom]

Bless your heart. Best wishes on your marriage. Your trip will be magical. You're all in my prayers.

 

[safetymom]

That is wonderful news. I know you both will enjoy it.

 

[shancan911]

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.

 

[kimis]

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.

 

[STWolfe]

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!

 

[MinnyGranny62]

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

 

[Elfstar]

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!

 

[LauraAnn630]

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.

 

[zalansky]

Elfstar - continued prayers coming your way. I will definitely think of you Oct 11th! I wanted to tell you that my husband and I just went to Animal Kingdom this past weekend and stayed in a savannah view and it was WONDERFUL! It'll be worth every penny for the lifetime of memories you will make from this trip. Enjoy every minute. Hugs...

 

[Elfstar]

Thank you, Zalansky, we're getting excited about the 11th now. This will be the minister's first wedding (not sure how I feel about that but everybody has to start somewhere) - he asked Jim if we'd like a rehearsal - he told him no, just "wing it"! Men! This should be interesting!!

 

[Elfstar]

Hi, Friends,

Two more days till the wedding! We're both excited and even though he's losing ground, Jim's looking forward to both that and our trip. Some planner I am, the girls at work surprised me today with a bouquet of roses and a rose boutonniere for Jim for Saturday. I hadn't even thought about flowers! We were both really touched. And some surprise cash to help with our trip! I cannot believe how lucky I am to work with such caring people. I always contribute to whatever's going on, I'm just not used to being on the receiving end. I hope to think of a novel way to thank them all.

Jim's come down with a headcold; I hope it doesn't become any worse than it is. The hospice nurse ordered him an antibiotic and some cough medicine and assured us that it's more preventative than anything else. He's down in the dumps again, just wishing his ordeal was over. He was cheered a bit by the flowers and thoughtfulness; I just keep reminding him of the nearness of our trip and suggesting he'll feel somewhat better then. I just pray he will be able to enjoy it.

Thank you all for listening. Between my work family and my Dis family, I can vent enough to keep me going!

 

[zalansky]

Tomoorrow!!! Can't wait to hear all about your trip and here's to hoping Jim's cold hits the road before you get to Disney.

 

[BarbieGal457]

So today's the big day! I hope everything is wonderful!!