DH has ALS (Lou Gehrig's disease)

[Elfstar]

Last year at this time, we were at WDW - DH had had surgery for a fracture of the cervical spine - he was tired and rented a scooter all week (he wouldn't miss a Disney vacation for the world). He got worse and worse instead of better, and in February we got the news about the real cause of his problems. We got a hospital bed in the house today, and his speech has gotten so slurred even I'm having trouble understanding him but the speech device has been ordered so that will be resolved soon. He's gone from a cane to a walker to a wheelchair in just a few months. No vacation this summer, the heat causes him to have anxiety attacks and every movement has become terribly difficult. Luckily his parents are across the street so there are three of us to take care of him.

My heart is breaking - his symptoms are progressing so rapidly that we're afraid he'll be gone before long. I don't know what I'm going to do without him. I'm so grateful that we took all the trips that we did while we could, he enjoyed them so much. Now, we have our memories to keep us going, and our souveniers. He loves to go over the good times we've had; it seems odd not to be planning more. But he can still laugh and joke, and as long as he does that, it makes me happy.

[Mskanga]

Elfstar I am very sorry that you have to deal with this but I will tell you after spending an entire year with my 14 year old fighting cancer , enjoy everyday to the fullest and cherish every moment , make more memories now. HUGS

[kimis]

My prayers and thoughts are with all of you! What symptoms did he have before the surgery? How old his he? The reason I am asking is that I have been going through some strange symptoms also and am scheduled for cervical spine surgery to see if that is the problem. The doctors have all told me that they can't rule out any of the other diseases until the cervical spine gets fixed to see if that stops the problem or not.
Remember you can always post here and we will pray for you. That is what friends are for. We care!

[lyeag]

I am so sorry you are going through this. :hug:

[safetymom]

I am so sorry to hear what you both are dealing with. I will keep you both in my prayers.

[frdeb1999]

So sorry you are dealing with this. But MsKanga is right, make as many memories now as you are able. You will always have those to hang on to. You'll be in my thoughts and prayers. :hug:

[Mackey Mouse]

Oh gosh.. I am so sorry.. Another horrible fast moving beast... please know that we are here for you if you need to talk. And as the rest of the posters said, live in the moment, remember the good times and try to make each day count in your memories...

Hugs, hugs, hugs...

[jacksonsmom]

I am so sorry :(

My dad is currently battling ALS. It has been a very rocky road for all involved.
ALS is just a cruel disease.
One thing that has helped me is living one DAY at a time. Enjoy today and try not to think what tomorrow will bring.

My thoughts and prayers are with you

[minkydog]

All I have is hugs:hug: for you both. This situation is *so* beyond unfair!

[Elfstar]

Thank you all - your ears and shoulders are a big help - and to all of you fighting any kind of problem, I have ears and shoulders, too, at the ready.

We will continue to create memories as long as I can keep him going, and I'm a stubborn one! :thumbsup2

Jacksonsmom, my prayers are there for you and your father, too. This is a cruel disease - that's a great description. I read in the news today that an upcoming clinical trial has been postponed for more animal testing, it may be a year or so before it's approved for human testing. For every step forward, there are two back at the most trying times!

Mackey Mouse and mskanga, you two are going through some severe trials, too, we'll pray for you and yours, too.

Kimis, Jim is 57. He was knocked to the ground two years ago by a poorly adjusted commercial overhead garage door. Just like a typical man, he shook it off and didn't go to the ER to be checked out (and what's worse, his supervisor was there, too, and didn't' insist he did). He had some minimal speech slurring which began only in the evenings when he was tired (it's now all the time). What caused him to seek help (a year later) was loss of muscle mass and the ability to pinch objects with his hands. He had two fractures in the C spine and had a fusion for repair. After the surgery, he got a little better for about two months but then the slurring increased and he developed multiple constant muscle twitching, limb weakness, loss of function of his hands and nearly unintelligible speech. I can only hope and pray that there's another explanation for your problems.

But... he can and will still laugh so far, and he appreciates everything we all do for him. He complains about being a burden for his family and I but I tell him he's much too important to us to be a burden. A bossy know it all sometimes he can be, but not a burden. (He laughs at that.) :hug:

It helps to know we are not alone! Thanks, all! :love:

[kimis]

Elfstar thank you for answereing my questions. I am 51 and I too am praying the surgery fixes the problems. I am going into the surgery with the thinking that all the sypmtoms will end.
You and your family are on my daily prayer list. Take a few minutes each day for you. You and your body need it.

[breezy1077]

:hug: It's a horrible disease. My thoughts and prayers are with you and your family :hug: . I'm so very sorry.

[mjwolfe]

Elfstar,

My heart goes out to you. I have walked a mile in your shoes. My DH lost his battle with ALS almost 3 years ago, at the age of 45. I know there is little anyone can say with this type of news. I can only encourage you to try to live each moment, each hour, each day as it comes.

There are support groups for you or your DH if think that is something that would benefit you. It is a difficult road you are on, and there are others who might be able to help you with your emotions, how to plan for what might be ahead, etc. My DH did not want to do any type of support group, but in hindsight I think I would have benefited. The kids and I joined a support group after his death. The group we go to also has groups for people with a serious illness in the family.

Your local MDA office should also be some help for you. If you have questions, please ask me. There are difficult things that need to be decided when someone has a terminal illness. It is really hard to consider some of those things, but if you can talk about it with DH, you should discuss things like a living will.

once again, my heart goes out to you...
-Marti

[Sugarfoot]

My heart aches for you, as we lost my DH's mother to ALS about 8 years ago. It started very slowly, slight slurring of her speech, as if she were drunk. It took a long time to get a diagnosis. Eventually she lost the use of her hands/arms, could no longer speak coherantly, and near the end she was on a feeding tube as she could no longer eat normally. She never lost the use of her legs, she tried really hard (by riding an exercising bike 10 miles daily) to keep the muscles of her legs from atrophying (not sure I spelled that right). I think she lived about 5 years with the disease, after she had been given 3 years by the doctors so we had her 2 years longer than we expected to.

Her spirit, and her faith in God, and her family were what got her through. She always had a smile, never complained. She was a great lady and I miss her to this day. I loved her very much.

ALS is a difficult thing to deal with, but I hope you have the support of family and friends. They can be so helpful to you, and your DH. :hug:

[Elfstar]

mjwolfe and sugarfoot, thank you, it's nice to know someone understands how this feels. We are going to support groups, and are tied in with the ALS and MDA offices. Everyone we meet that's to help Jim has been just wonderful.

His symptoms are progressing so rapidly it's frightening. He went from feeding himself and chewing his food to needing everything pureed and being fed completely by us in just a few weeks. We go to clinic on 7/15 again, and he's going to ask for a feeding tube insertion. He's lost probably 40 pounds over the past couple of months.

I had my July vacation last week, and while most of the time I spent working around the house :laundy: , he did encourage me to take one day and go off and have some fun. I met my daughter for lunch and them tried to go shopping but all I could think of was that Jim and I should be off somewhere (WDW usually) having fun and cutting up :dance3: !! It made me so sad I just went home. The good thing about it is I can tell him these things without it making him feel bad :hug: - he understands that we're both mourning our loss of "normalcy". And the next day, I tried taking him to a movie (he's very restless usually so we weren't sure if he'd be able to sit quietly for two hours) and it was the perfect respite for us both. We're going to try again next week. And, our theatre lets disabled people for free. What a kind gesture!!:love:

So, we're coping as best we can but I dread my next Disney trip because it'll be by myself, and probably Jim will be gone. How bittersweet that will be, loving and avoiding the memories at the same time. There are just times when I hate being an adult! :headache:

[antmaril]

I'm so sorry you are going through this. :hug:

[kimis]

Yes Elfstar your first trip may be very hard but just know that there are so many happy memories there with the two of you. That is what memories are all about---the times life is hard and seemingly unfair---to get us through.
I know when I go to places that were special to loved ones that I have lost I actually cry, laugh and "talk" with the loved one all at the same time.
I wish I could talk away your pain for you but than you wouldn't have those wonderful memories together.
Just know that myself and others are praying for you. You hang in there! Laugh when you want, cry when you want and yell when you want. Most importantly talk when you want. Talking helps.
All my prayers and lots of pixie dust.

[Mrs. M. Mouse]

I'm sorry you are going through this. :hug:

[catsrule]

I'm so sorry Elfstar, this disease stinks. My nephew is 36 and he has it. :grouphug:

[Elfstar]

Catsrule, our prayers go out to your nephew, you and your families. He's so young for this - it's bad enough that Jim's only 57. Keep his spirits up, there's a drug that was supposed to be approved for human trial this summer (Jim's doctor had hoped to have him participate) but the FDA wants more animal testing first so it's on hold for a year. Too late for Jim (I'll explain why in a second) but maybe in time to help your nephew. I'll pray for that result.

We went to the ALS clinic for Jim's 3 month checkup yesterday. The doctor seemed surprised at how much he's deteriorated since the last visit. Jim asked if he knew how long he had, and he told us that he thinks he may be in his final six months. :scared1: Startled to say the least, we feel like we've been hit in the face with a board. Tears ran down my face during the entire three hour ride home. I know it's not truly predictable but thinking that I could lose him that soon is devastating. I'll never be ready for that.

Thank you all for your thoughts, hopes and prayers. This is a help, being able to let it out without really "seeing" people.

[Mrs. M. Mouse]

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

allie

[TheDisneyGirl02]

:grouphug:

[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.:hug:

[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.:hug:

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 :grouphug: 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, :laughing: !)

[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, :laughing: !)

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. :wizard:

[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, :hug: 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! :wizard: 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!

[D&DDisney]

:hug: 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.

[kimis]

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.

[Elfstar]

D&DDisney, I'm so sorry about your dad. :hug: 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!:thumbsup2

Thanks for checking up on us! :hug:

[diz8297]

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.

[zalansky]

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! :hug:

[Elfstar]

Diz8297 and Zalansky, thank you.:grouphug: It's tough sometimes to keep our spirits up but we get over the rough spots.

Jim got an unexpected check from a disability policy he'd forgotten about - it was enough added to what we'd saved to get a used van with a lift so we can transport him in his chair. Now he can go with me to visit my dad( also having health issues but he only needs my help with transportation at this point). While Dad will drive to my house as long as it's light out, it's important for Jim to be able to get out, too.

And since the transportation issues are solved , Jim wants to go to Disney World one more time for a few days. We may not be able to do what we used to but just being there will be enjoyable. And he wants to get married before he dies, so it'll be a "honeymoon" as well as probably his final trip. We decided to splurge and see if we can get a room at AKL for three or four nights. We'll be able to see the animals, and see the art in the lodge even if we can't get out and do anything else. I don't care, as long as he's happy, I'm happy.

Kimis, if you're out there somewhere, please pm me or e-mail me and let me know how you're doing - have you had your surgery? Thanks.

[diz8297]

I am so hoping that you can have a beautiful trip to Disney. The AKL is a wonderful choice. You are both so inspiring-I know you may not feel that but you guys are. In your posts you show how you focus on the living. Living each and every day to the max. Making sure that you utilize everything you can to squeeze as much out of each moment. God bless you both. Keep us posted on your developments.....and your trip planning.:wizard:

[buf68]

Elfstar,
I'm so sorry you have to go through this. My father passed away due to ALS last year (may '07) from ALS. He had the bulbar form, and from diagnosis to death it was almost 3 years exactly. Unfortunately he was only 44 years old (one week shy of his 45th birthday). Thankfully before he lost the ability to walk we got in contact with the Fariy Godmother Foundation, who put together a wonderful trip for us to disneyworld. It was our first big family vacation (my sister was very young, so she hadn't been to disney every). It was an amazing trip for us.

I will pray for you. My dad firmly believed that as long as he had breath in his body that he could be healed. I never would wish this disease on anyone, ever. It's horrible to deal with....and even worse for a 23 year old to be in the room when her almost 45 year old father dies. It was incredibly hard for all of us. I wish you strength and I hope that if that ending does come it is as peaceful as anyone could imagine.

[Elfstar]

buf68, I am so, so sorry about your father. That's much too young to die, and you were much too young to have to see that:hug: . But I'm glad you were with him - I bet that meant a lot to him. Watching Jim worsen every day is the hardest thing I've ever done - it's such a helpless feeling...thank you for your prayers and support. That means a lot to us.

[Mackey Mouse]

Buf, sorry to read about your Dad, he was so young....it is not fair when we lose them that young, whether it be this, cancer, heart....just not fair.

Elfstar, great that you got the van and he can get out a bit.. I always think how hard it would be to face one of these diseases and be housebound as well, it is hard to keep up your energy if you do not get out and about....

I think it is great that you will go to Disney and get married too... awesome.. live for the moment and just go, keep one step ahead of this disease and enjoy life the best you can..

[kimis]

Hi Elfstar just checking on you. How are you doing? Still gotta you all in my prayers! I hope you have a great day.
Hey have you set a wedding date yet?

[MinnyGranny62]

:hug: I think that a trip to WDW would be great and a honeymoon too.
God Bless you. Shirley

[Elfstar]

Hi, friends, :hug:

Well, we've got the license and will probably get married next week. The trip may have to wait or not happen - Jim's breathing seems noticeably shallower to me, and he refuses to use the Bipap machine. His checkup is next Tuesday, so we'll see what the doctor says then. His hands are curling up, too, and are almost impossible to open anymore.

Jim's dad is having some trouble coping emotionally these days and has chosen me as the object of his anger and frustration. He's rude and insulting and has even shoved me out of the way a couple of times recently. Jim's mom has no idea what's going on with him, and Jim is understandably upset about all this. I'm not proud of it, but he just wouldn't let up the other day, Jim was agitated to the point where he was in tears, and I lost it and actually took a swing at him (Jim's dad) because he just would not shut up - it seems like he's trying to run me off. Not sure if this is why, but now he's not talking to any of us. At least it's peaceful. None of us need discord right now.

[TheDisneyGirl02]

Hi, friends, :hug:

Well, we've got the license and will probably get married next week. The trip may have to wait or not happen - Jim's breathing seems noticeably shallower to me, and he refuses to use the Bipap machine. His checkup is next Tuesday, so we'll see what the doctor says then. His hands are curling up, too, and are almost impossible to open anymore.

Jim's dad is having some trouble coping emotionally these days and has chosen me as the object of his anger and frustration. He's rude and insulting and has even shoved me out of the way a couple of times recently. Jim's mom has no idea what's going on with him, and Jim is understandably upset about all this. I'm not proud of it, but he just wouldn't let up the other day, Jim was agitated to the point where he was in tears, and I lost it and actually took a swing at him (Jim's dad) because he just would not shut up - it seems like he's trying to run me off. Not sure if this is why, but now he's not talking to any of us. At least it's peaceful. None of us need discord right now.


:hug:

[EMom]

I just noticed this thread. I am so sorry for what you're going through. Our cousin was diagnosed 2.5 years ago after about a year of testing to rule out other things. She actually did pretty well compared to most people for the first 1.5 years, but the last 6-9 months she has taken a severe decline and is now on a ventilator. She tried everything...all sorts of experimental treatments, etc. and was so hopeful and positive. She's a fighter. But this is such a cruel, horrible disease. Her DH has been devoted to her.

One thing we are struggling with is how to tell DD8. It's one thing to explain that an old person died, but how do we explain that a youngish cousin died? She knows this cousin "has had trouble breathing," and I'm scared she'll equate it with my asthma and then become scared that I will die! She hasn't seen this cousin since she went downhill. I opted not to take her around because if DD accidentally took an infection over to their house, it could kill our cousin. And she could be carrying some bug from school and not even know it. To DD, this cousin is a relatively young, cheerful, energetic person. Well.......That is what she was before ALS robbed her of all that.

I wish they could find a cure. This is surely one of the most awful diseases on earth. My heart goes out to you.

[mjwolfe]

Elfstar

Do they measure your DH's FVC (forced vital capacity) when he goes for checkups?

My DH refused bi-pap as well. I noticed that when he would breathe his muscles in his upper chest would move up and down, to compensate for his lungs. The Respiratory therapist taught him how to do stacked breathing (taking a series of breaths one after the other) to try to get one big breath into your lungs. He had wanted my DH to practice the stacked breathing daily - especially to get a big enough breath to do a cough.

As for FIL .. all i can imagine is that he is truly hurting, but it comes down to the fact that he is not helping the situation at all.. I would say that it probably needs to be addressed. you are under too much to have to deal with that too.


EMom - my DH died from ALS 3 years ago when my children were 4 and 8 years old. I told my 4 year old that daddy had an illness and that even though there are very smart doctors in this world, they had not figured out how to cure what daddy had. What he had was rare - not many people get this illness. It made Daddy's lungs very weak and Daddy caught pneumonia. His lungs quit working and that is why he died.

There were some kids in my daughter's pre-school class whose parents chose not to tell their kids that their class-mate's father had died. I am not sure about that decision...i think it is better to try to find words to explain something like this. (not saying that you would not tell DD, just telling what happened in my situation).

-marti

[EMom]

EMom - my DH died from ALS 3 years ago when my children were 4 and 8 years old. I told my 4 year old that daddy had an illness and that even though there are very smart doctors in this world, they had not figured out how to cure what daddy had. What he had was rare - not many people get this illness. It made Daddy's lungs very weak and Daddy caught pneumonia. His lungs quit working and that is why he died.

There were some kids in my daughter's pre-school class whose parents chose not to tell their kids that their class-mate's father had died. I am not sure about that decision...i think it is better to try to find words to explain something like this. (not saying that you would not tell DD, just telling what happened in my situation).

-marti

That's an excellent explanation. We are very truthful about these things. When my mother died of lung cancer, DD had just turned 2. Over the years, we explained what killed her. She remembered my mother being on oxygen because the visual was strong. (She had emphysema too.) However you slice it, it gets back to a breathing/lung problem. Now this cousin has a breathing problem....in simplified terms. My brother just died and he had lung disease......again it gets back to breathing/lungs. None of these are the same issue, but to a child, it may SEEM the same.

I worry that she may start to associate my asthma as being something that could kill me. I have days where breathing can be difficult and she knows that. I may know it won't kill me and I can tell her that all I want, but with three total deaths from breathing/lung issues and two of them so coming close together, it's not a reach for her to make the leap in logic. She has always been anxious about me when I get sick anyway. Daddy, not so much. :lmao:

On top of all that, another brother recently had a massive heart scare which alerted us to the fact that a genetic defect runs in our family that can cause sudden death.....as in you drop dead with no warning. He actually DID drop dead, but someone did CPR until the ambulance arrived in just a few minutes. It was touch and go, but he now has an implanted defibrillator to shock his heart into normal rhythm if this happens again. It's a miracle he survived. But it does explain why my father dropped dead at a relatively young age right in the middle of a sentence. :scared: Back then, it couldn't be diagnosed. Anyway, the siblings all had a 50/50 shot of having it, so I had testing and am in the clear. Other sibs weren't as lucky, but they are now being treated. However, DD knew about my brother nearly dying and she caught on that something was up when I had all those cardiac tests and had to wear monitors at home, etc. She knows I am "safe" but again....what 8 y.o. needed to be exposed to that? We downplayed it, but she's no dunce.

Poor kid. Oh well. The good news is, my ticker's in nice shape. :yay:

[safetymom]

My late husband had very very bad asthma. We were always honest with the kids when he ended up in the hospital.

When he was supposed to have this procedure that ended up killing him we were honest about that as well.

Honesty in a way that children can understand is a good thing.

[Elfstar]

Hi, everybody, we're praying for you all every day.

Jim's checkup last week went about as I expected - his diaphragm function has gone from 34% to 24% in two months. They gave him two additional meds for his secretions because he swallows very little now. The doctor assured him (as much as he can, I guess) that he'll most likely slip away in his sleep eventually because Jim kept asking.

We're getting married in two weeks and if I can get us a room, going to AKL for a few days soon after that, as another trip to Disney is his final wish, and I want to do it while he can still possibly enjoy at least some of it.

I hate this disease more than I can say. Anyone who's been a caregiver will understand when I say that watching Jim's decline up to this point, and knowing that I'll be watching even more is the hardest thing I have ever done. I'm just praying I can keep on going till he doesn't need me any more - I know I will because I want to but these days I'm as tired mentally he is physically.

[Mackey Mouse]

"Anyone who's been a caregiver will understand when I say that watching Jim's decline up to this point, and knowing that I'll be watching even more is the hardest thing I have ever done."

I understand.. hang in there, we are here to listen. it is not easy being the caregiver, not easy at all. Hugs..

[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. :hug: :hug:
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!! :hug:

[Elfstar]

:love: I booked our trip today! Four nights at AKL, Savannah view starting on October 29 - really shouldn't :scared1: 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 :bride: unless something crazy happens. We're at the top of the emotional roller coaster again, if only for a little while.:yay: :sad2:

Thank you all for your continued prayers and good wishes - ours are here for you, too.:hug:

[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:hug:. 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. :bride: You are so lucky to be marrying this wonderful man. I wish you many blessings, and many happy memories. :lovestruc :goodvibes

[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]

:hug: 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 :rotfl: (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":lmao: :lovestruc 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...:hug:

[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.pixiedust:

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.:wizard:

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

[zalansky]

Tomoorrow!!! :hug: 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!!

[kimis]

congratulations on your big day! I am praying that it is very special for you both! Keep us posted and we will keep you in our prayers.

[wuv tigger]

Hugs to you & Jim!

:hug: to you both!

[Elfstar]

Yay, we're married! :love: And Jim took special care and effort and thanked the minister and guests and told them he was very happy! :lovestruc His cold seems somewhat better, last night was kind of rough but I don't think I gave him the full dose of cough medicine he was supposed to have. I re-read the label today and it's double what I thought.:confused3

I am very happy, too, and seeing him happy just compounds that for me!:dance3:

Now we have our trip to look forward to. :woohoo: Thanks for all your thoughts and prayers for our day today!:grouphug:

[diz8297]

Congratulations to you both! Thank you for reminding us what love truly is all about!!!!:flower3:

[Elfstar]

dis8297, thank you! We do love each other a great deal!

The irony of all this is, a very long time ago, Jim asked me how I knew I loved him. One of the things I said was that I knew I could take care of him if he became totally helpless, never having any thought in the world that this would ever happen. Well, it has, and while I get really down once in a while about our fate and all the plans we made that we'll miss, I've never had a second thought about all this, never once wanted out, and he has never said I should walk away, no matter how down he is. We do get a little feisty at each other once in a while, he because I try to push him to do what he should but doesn't want to, and me because he's a great order giver - while I'm taking care of one thing, he's spouting off two or three others as if he thinks I've got two heads and eight hands! But then we always get to laughing :lmao: at ourselves, and it's all better!

Our day was nice, :goodvibes the weather couldn't have been better - we almost went outside for the ceremony but the breeze was rather stiff so we decided to stay in. I realized this morning that we had the ceremony sort of backwards - the minister was facing us but all six guests were standing behind him so they saw us instead of him. That actually makes more sense (although we did it accidentally) because we could be heard and seen. Jim's best friend/best man did all his responses for him except for the "I will" which Jim managed himself. And he had his hand on the best man's to put the ring on my finger. Jim didn't want a ring because he can't wear one. He had a good day as far as his symptoms acting up goes :yay: , and after about two hours everyone left so he didn't get too tired. But the excitement must have done us in because I slept till 10:30 today, and he slept till 1:00.

[elizke]

I found this thread today in my efforts to find support. My cousin was diagnosed a few months ago. She is 51, and in the last year has gone from a few unexplained tripping incidents to a wheelchair and slurred speech. Her parents are taking care of her, and they are in their 80's. I just visited them and it's the saddest sweetest thing I've ever seen, the way they care for her with gentle love and good humor, and no one ever compalins. I admire them all more than I can ever say.

DH, in an effort to do something constructive, signed us and our kids up for a Walk to Fight ALS next Saturday in Springfield. It's such an unfair disease and we all feel so helpless, and this is one thing we can do. Elfstar, I'll add you and your DH to my thoughts and prayers as I walk, along with all other posters here who have suffered at the hands of this horrible disease.

[Elfstar]

Thanks, elizke, and thank your family for doing this. I'll be walking myself at the next one near us. I'm sorry your cousin is going through this, too. This is the most cruel disease I've ever run into. But we'll do our best as long as we can, and we're adding your cousin to our prayer list, too. :hug:

[MinnyGranny62]

:dance3: Congratulations to the happy couple and will be thinking and keeping you both in my prayers. Shirley

[Elfstar]

Well, it's been a week (and a day) and we're still happily married (and they said it wouldn't last - :rotfl: :lmao:).
Jim's speech has really gone south the past couple of weeks and he was trying like mad to get me to understand something yesterday - after about 10 minutes of "charades" and rewording, I figured out he was trying to tell me Happy One Week Anniversary! He even had the time right, too! Oh my gosh, how sweet!:love: He was never an inconsiderate man but he is so much more conscious of "the little things" now.

He's no longer able to hold the suction tube unassisted and is having some trouble guiding his chair. He's starting to sleep more during the day :sad2: and is asking for his anti-anxiety medication more often. I am so glad that our trip is only 10 days away - I want him to be able to enjoy it as much as he can.

I am nowhere near ready to lose him.....:sad1:

[shancan911]

Elfstar, if you check the boards before you leave, here's wishing you and Jim a wonderful Disneymoon at AKL. Make the most out of this adventure, and take lots of photos. These will be memories you will cherish forever.:goodvibes

[Elfstar]

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. :love: 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!

[kimis]

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.......

[maryisme]

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

[zalansky]

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. :hug:

[safetymom]

Thank you for the update. It sounds like you created a lot of wonderful memories.

[maryisme]

Hi Elfstar,

Just wanted to let you know you are in my thoughts and prayers.

[Elfstar]

Hi, all, I'm glad you read about the trip. No matter what happens now, I'll always have those :lovestruc 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!!:lmao:

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 :scared1: 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!

[MinnyGranny62]

:goodvibes 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

[cyndylou]

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.

[Elfstar]

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.

[cyndylou]

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.

[kimis]

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!

[Elfstar]

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.:sad2:

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.

[safetymom]

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!!!

[Elfstar]

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.

[TheDisneyGirl02]

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.

:hug:

I've thought about you both this holiday season. It's nice to know that the staff is caring. Please take care of yourself and enjoy your time together. :hug:

[quasar4legs]

Can't find the right words so i shall send you all some BIG Koala cuddles from 'down under'.


Thinking of you.
Trish

[safetymom]

I am so sorry. I wish I knew the right thing to say to you both.

[kimis]

I am glad he is comfortable and you are with him. You both have been in my thoughts so often and my daily prayers. I have to tell you I love hospice. They will help you take excellant care of him. Enjoy your time and know that many people are praying for you!!!!!!! Keep us posted.

[Mackey Mouse]

Elfstar, thinking of you and your hubby... stay close and be together and let them help you... There are special places in heaven for Hospice workers, I do not know how they do it, but they do. We are thinking of you. Hugs

[TashaRVT]

Jim was admitted to Hospice House this afternoon - I don't know how much longer we've got together but I'm going to treasure every moment.

My thoughts and prayers are with you. You truly are a very special person.
:hug: :worship:

[lyeag]

:hug:

[j's m]

:hug: My thoughts and prayers are with both of you.

[Elfstar]

Thank you all for your prayers and good wishes - you help me realize that I will get through this tough time and go on to help somebody else do the same. You've all been in my shoes in one way of another!

Jim's hanging in there for now, I'm off to bed cause I'm BEAT!

[dee47]

You are an amazing, inspiring woman. I have a world of respect for you. I'm keeping you and Jim in my thoughts and wishing you both strength and peace.

:hug:

[TammyNC]

Keeping you both in my prayers. I too have the upmost respect for Hospice angels, they were a blessing to our family while dad was at their home.

Remember to also take care of yourself, get rest, drink your water and have some healthy meals to keep up your strength.

[TheDisneyGirl02]

Sending you more hugs and well wishes. :hug: :hug: :hug:

[Elfstar]

Jim passed away peacefully in his sleep very early this morning at Hospice House.

[kimis]

Elfstar I am SO SORRy for your loss. I know words aren't meaning much right now but please know you are being prayed for. I am grateful for the fact he isn't suffering anymore. It is awesome that you were able to get married, go to WDW once more and have another Christmas together. Please hold onto those memories in these tough days. Please keep us posted as to how you are doing. All my thoughts and prayers are being sent your way.

[safetymom]

I am so sorry for your loss. I hope you can take comfort in your memories. Please keep posting here. It really does help.

[antmaril]

I am so very sorry for your loss. I have been following your journey and I think you were an amazing caregiver to your husband and should be very proud of yourself. I lost my dear husband in July and I know what strength it takes to be the caregiver.

Again, I'm so sorry.

Marilyn

[jimmytammy]

I am so sorry for your loss. I pray that God will grant you peace and comfort.

[zalansky]

It broke my heart to see your post today. Please know you will continue to be in my thoughts and prayers. :hug:

[TammyNC]

I was sorry to read about your loss this morning. I pray that you will have peace and comfort while adjusting to life without him.

[jacksonsmom]

My heart is breaking for you :(

I am so sorry to hear about Jim's passing.

Please take care of yourself. I know with my step-mother who is taking care of my dad who has advance ALS, sometimes she forgets to take care of herself.
You made some wonderful memories with Jim and those will always live on in you.

Continue to let us know how you are doing. You are in my thoughts and prayers.

[agnes!]

I am so sorry for your loss.

agnes!

[diz8297]

I just read the news. You and Jim were always in my thoughts. My prayers are with you tonight and in the nights to come. May God hold you in the palm of his hand. I firmly believe that Jim's journey is just continuing on on a different plane. God bless you. You have inspired many more than you know. You truly lived the vows in sickness and in health. May your memories sustain you and inspire you in the days to come.:hug:

[Mrs. M. Mouse]

I am so sorry to hear of your loss. You and Jim have been in my prayers for so long now. God bless you for being such a blessed care giver to jim. I will keep you in my prayers in your time of grief.

[CarolAnnC]

My deepest sympathies to you on your loss..please take care of yourself. Hugs...

[minniecarousel]

Susan, I just read this whole thread and I am so sorry that you lost Jim in this way. It was heart-breaking to read, and I can only imagine how it was to go through.

My thoughts and prayers are with you.

[TheDisneyGirl02]

I am so sorry for your loss. Please know that I am thinking about you during this difficult time. :hug:

[cyndylou]

I am so sorry for your loss. Though there are no words to ease your pain, remember you are being supported through the thoughts and prayers of many.
Hugs.

[dee47]

You are in my thoughts. I wish you peace and strength. You are an amazing woman. My heart goes out to you.

:hug: :hug: :hug: :hug:

[mjwolfe]

I am so sorry for your loss

-Marti

[Mackey Mouse]

I am so sorry to read about his passing........Please take care of yourself these next few days and know in your heart you did all you could for him....because you did. Hugs..

[mommasita]

I am sorry on your loss. You were and are in my daily prayers. :grouphug:

[Elfstar]

Thank you all so much for your condolences. Hospice was wonderful, in the short time we were there, they did everything possible for Jim, his parents and me. His last couple of days were difficult to watch, he was in pain and very fretful. During my last hours with him, he woke off and on but for the most part slept peacefully.

Everyone deals with loss in a different manner; Jim's parents chose not to go and see him after we got the calls that he was gone. I went, and I will forever be grateful that I did - every stress line, pain line, every muscle distortion from the disease was gone from his face and body - he looked like my Jim again. I hope that he knew a moment of this release before he died. When I saw that, I felt half of my stress just drain away.

I will love him greatly and miss him terribly until the day I die, and afterwards. I am very, very sad but grateful that his suffering is over. I am also unbelievably physically tired now that the need for my care is gone. I was told that this is normal and that I need to pay attention to my body while it recovers. I'd have been able to keep going as long as needed but the longer the work, the longer my recovery would be. Whatever, I am just grateful that I had the strength and training to see this journey to the end. And all through it, every Saturday after we married, Jim wished me happy anniversary, and he thanked me several times a day for my care. I cannot believe how unbelievably lucky I was to have him.

We're going to take a couples of week's to pull our lives back together before we do a memorial service for him. This is his daughter's first major loss; she's still trying to process it, living several states away and feeling bad that she didn't get down to see him more often. She was planning to come in another two weeks; we thought we'd have him for another month or two but it wasn't to be.
I want this to be what she wants it to be because I had my closure by seeing his face, and I've started healing. I want to make sure that she gets the closure she needs, and my daughter, too. Jim was a father figure to her.

Thank you all for your encouragement and compliments, too.:hug: it's easier for me to write my fears and misery than to speak (where crying often gets in the way) so I got more relief from this board than anywhere else.

In a couple of months, I think I may sign on with Hospice as a volunteer - I'm confident in my caregiving skills and after this experience, I certainly have some idea of what could be helpful for families.

I'm grateful to you all, and for this board, and for life in general!

Love,
Susan

[TheDisneyGirl02]

Thank you all so much for your condolences. Hospice was wonderful, in the short time we were there, they did everything possible for Jim, his parents and me. His last couple of days were difficult to watch, he was in pain and very fretful. During my last hours with him, he woke off and on but for the most part slept peacefully.

Everyone deals with loss in a different manner; Jim's parents chose not to go and see him after we got the calls that he was gone. I went, and I will forever be grateful that I did - every stress line, pain line, every muscle distortion from the disease was gone from his face and body - he looked like my Jim again. I hope that he knew a moment of this release before he died. When I saw that, I felt half of my stress just drain away.

I will love him greatly and miss him terribly until the day I die, and afterwards. I am very, very sad but grateful that his suffering is over. I am also unbelievably physically tired now that the need for my care is gone. I was told that this is normal and that I need to pay attention to my body while it recovers. I'd have been able to keep going as long as needed but the longer the work, the longer my recovery would be. Whatever, I am just grateful that I had the strength and training to see this journey to the end. And all through it, every Saturday after we married, Jim wished me happy anniversary, and he thanked me several times a day for my care. I cannot believe how unbelievably lucky I was to have him.

We're going to take a couples of week's to pull our lives back together before we do a memorial service for him. This is his daughter's first major loss; she's still trying to process it, living several states away and feeling bad that she didn't get down to see him more often. She was planning to come in another two weeks; we thought we'd have him for another month or two but it wasn't to be.
I want this to be what she wants it to be because I had my closure by seeing his face, and I've started healing. I want to make sure that she gets the closure she needs, and my daughter, too. Jim was a father figure to her.

Thank you all for your encouragement and compliments, too.:hug: it's easier for me to write my fears and misery than to speak (where crying often gets in the way). In a couple of months, I think I may sign on with Hospice as a volunteer - I'm confident in my caregiving skills and after this experience, I certainly have some idea of what could be helpful for families.

I'm grateful to you all, and for this board, and for life in general!

Love,
Susan

Susan, your post made me cry. I just wish I could reach through the computer screen and give you a hug. You are so strong. Please know that I'll continue to keep you and your family in my thoughts and prayers. :hug:

[jacksonsmom]

. I went, and I will forever be grateful that I did - every stress line, pain line, every muscle distortion from the disease was gone from his face and body - he looked like my Jim again. I hope that he knew a moment of this release before he died. When I saw that, I felt half of my stress just drain away.


Thank you for your update on you. I hope you are taking care of yourself.

This post above really hit home for me. My father is going through ALS and I strongly feel this will be his last year living with this awful disease.
Sometimes when I see my father he is just a "shell" of what he used to be. ALS has crippled him completely.

Although I don't want my dad to go, I also know one day he will be at peace and be completely pain free from ALS --- just like your Jim is now.

Still thinking of you.
Take Care

[ameraumi]

Thank you all so much for your condolences. Hospice was wonderful, in the short time we were there, they did everything possible for Jim, his parents and me. His last couple of days were difficult to watch, he was in pain and very fretful. During my last hours with him, he woke off and on but for the most part slept peacefully.

Everyone deals with loss in a different manner; Jim's parents chose not to go and see him after we got the calls that he was gone. I went, and I will forever be grateful that I did - every stress line, pain line, every muscle distortion from the disease was gone from his face and body - he looked like my Jim again. I hope that he knew a moment of this release before he died. When I saw that, I felt half of my stress just drain away.

I will love him greatly and miss him terribly until the day I die, and afterwards. I am very, very sad but grateful that his suffering is over. I am also unbelievably physically tired now that the need for my care is gone. I was told that this is normal and that I need to pay attention to my body while it recovers. I'd have been able to keep going as long as needed but the longer the work, the longer my recovery would be. Whatever, I am just grateful that I had the strength and training to see this journey to the end. And all through it, every Saturday after we married, Jim wished me happy anniversary, and he thanked me several times a day for my care. I cannot believe how unbelievably lucky I was to have him.

We're going to take a couples of week's to pull our lives back together before we do a memorial service for him. This is his daughter's first major loss; she's still trying to process it, living several states away and feeling bad that she didn't get down to see him more often. She was planning to come in another two weeks; we thought we'd have him for another month or two but it wasn't to be.
I want this to be what she wants it to be because I had my closure by seeing his face, and I've started healing. I want to make sure that she gets the closure she needs, and my daughter, too. Jim was a father figure to her.

Thank you all for your encouragement and compliments, too.:hug: it's easier for me to write my fears and misery than to speak (where crying often gets in the way) so I got more relief from this board than anywhere else.

In a couple of months, I think I may sign on with Hospice as a volunteer - I'm confident in my caregiving skills and after this experience, I certainly have some idea of what could be helpful for families.

I'm grateful to you all, and for this board, and for life in general!

Love,
Susan

That was beautifully said. I am sitting here with tears in my eyes and in awe at how you handled things. :hug:

[krcit]

I am so sorry for your loss.

[shancan911]

:hug: Thoughts and prayers to you and your family. I'm glad you were able to write your feelings to us. As you found, aninimity is great for difficult conversations. I have to say, and I believe I echo other Dissers, you feel like family to us. I hope we have been able to carry some of your burden, and we will gladly continue. As others have said, please take care of yourself. Come back to us as you are able.

[teskak]

I have been lurking, but feeling your pain for a while.

One thing I did after my father passed (thankfully quickly from pneumonia rather than slowly with mesothelioma - a type of very nasty lung cancer) was to take my daughter away on a retreat for a few days where nobody knows you or your story.

I was tired from the number of people who, while they said the "is there anything I can do to help" really meant - "tell me all about it, I wanna know" while offering nothing. Or otherwise just offered the same general comments which did nothing for the pain in my soul.

On the retreat I did not have to speak to anybody, I could just be quiet, allow my body to heal and start to process how my life had changed. Nothing fancy, just a bit of time out from the world for a while.

[quasar4legs]

Susan, so sorry to hear that Jim has passed on. Wishing you peace and healing.

Thinking of you.

Trish

[kimis]

HI Elfstar! How are you doing? I totally understand what you said about being grateful for seeing Jim after he had passed. When my mom (my bestfriend) had passed from small cell lung cancer she had already had parkinsons disease for years. The minute she passed her face went back to the pre-parkinsons days. I had actually forgotten how she looked before the parkinsons disease. She looked so peaceful in her passing. I too am so grateful for the chance to see her after her passing. That is the picture of her I remember not the suffering face. I hope you continue to take it one day at a time and take care of yourself. You are in my prayers.

[minniebeth]

Elfstar,
I have been following your thread from the start, and even though I've never posted, you, Jim and your families have been in my prayers....
I am so sorry for your loss and pray for your journey in healing.
Your absolute, complete love for him shines through and his life will be forever blessed by it.
May you be blessed as well....
Your thoughts to be a Hospice volunteer brought tears to my eyes, as your experiences have given you the complete compassion that other families so need. It would be a gift in Jim's honor that you would be able to provide.
My mother suffers with Parkinson's Disease, and had been a Hospice volunteer for many years....it has been suggested to us that she now enter the Hospice program soon...
life ebbs and flows in directions that we never expect to take us but always somehow touches us with the love and support of others.
:hug: :hug: to you!
Minniebeth

[elizke]

Susan,

I'm so sorry for your loss. Thanks goodness you were there for him, and that your last months together were so meaningful.

And I too know what you mean about the relief for your loved one. When my mom died last year after 10 years of living with a horribly debilitating illness, I got the chance to be alone with her at the wake. I told her how happy I was for her. I pictured her flying free of the body that had betrayed her.

And thanks for posting your story. You say it helped you, but also you are helping others. You remind me that I must make all I can of the time I have with my cousin.

Elizabeth

[BarbieGal457]

Elfstar, I am extremely sorry for your loss. You are a wonderful woman, and always in my prayers. :hug:

[MinnyGranny62]

:hug: Susan I am so very sorry for your loss of Jim. I havn't been on my computer for a while so I did not know of Jim's passing. You are often in my thoughts and prayers and will continue to be. Shirley

[Jenvenza]

I am so, so sorry for your loss. I wish I had the right words to say. :hug:

[Elfstar]

Thank you all, again :hug:. I'm starting to feel a little better, partly due to knowing Jim's not suffering anymore, partly from getting some rest - I can't believe that this journey that flew by was over a year long. And my daughter let me know a few days ago that we're expecting a new life - our first grandchild. I can only hope that Jim knows, too! Oh my God, I miss him!!!! This will be a year of recovery, a year of firsts (without him...:sad2: ) and a year of renewal. I'll still be here, gratefully accepting your encouragement and support, and giving mine back to all of you who need it. This board was, and still is, a godsend!

God bless us all for helping each other! :grouphug:

[zalansky]

Elfstar! What wonderful news in the midst of missing Jim. :hug:

[cyndylou]

Elfstar, your spiritual strength is evident in all your postings. You persevered through a great trial, and were an inspirational example to others. I am thankful you are getting needed rest. And a grandchild-what a blessing! When our first grandchild was born (we have three so far,) I experienced a new kind of love that was so wonderful. God is great!

[WDWRocksMySocks]

TAnd my daughter let me know a few days ago that we're expecting a new life - our first grandchild. I can only hope that Jim knows, too!
God bless us all for helping each other! :grouphug:

Congratulations on the new grandchild. I know it is bittersweet and it will be difficult for you as you experience all the firsts w/o Jim. But, the new life that will bless your family will provide much needed comfort and solace to you. After my Dad passed away, my sisters kids were one of the main things that helped my Mom get through it. My thoughts and prayers are with you as you go through this new year. :grouphug:

[Elfstar]

I can't believe Jim's been gone three weeks already. :sad2: It seems like a bad dream, and I keep wishing I'd wake up. I'm keeping busy but it's just hard to function sometimes....it feels so odd not to be taking care of him.

His daughter and I are going to WDW March 5th through 9th for a "memory trip" - we decided it would be easier if we went back the first time together. He and I went many times, he and Sherry went together once but the three of us were never there together, so I'll share my memories with her and she with me. We've booked a room in the French Quarter; I'll go back to AKL in the Fall for my solo memory trip.

Oh, and our first grandchild is due September 1st courtesy of my daughter! When she first found out, she was so excited she forgot to ask her due date!:rotfl:

[ameraumi]

Congratulations! I believe that Jim will watch over your daughter the next months and smile from above when the baby is born. :hug:

You have shown such strength and I can only hope I can be as strong as you.

[LouDisney]

I'm sorry for your loss.You are in my prayers.
And congrats on the good news.

[TeresaNJ]

I just found this board today, and have read through all your posts. I am so sorry for everything your darling Jim, you, and your family have gone through, and for the loss of Jim. You are an amazing woman, a hero in my eyes, so courageous, and so caring to others. Thank you for reminding me to be grateful for everything I have, and to treat every day as if it might be my or my loved ones last. Congrats on the upcoming birth of your grandchild!:hug:

[Elfstar]

Thanks, TeresaNJ, I'm just grateful I was there to help him through it. I have had a lot of experience with death, both personally and professionally but this is something different than I've ever experienced before - to watch a human being, someone I love so much, face his own death and progress to that end. I started seeing a Hospice grief counselor today because I currently feel "nothing" - apparently I'm just in a "numb" state which is a protective mechanism that will last as long as my (brain? subconscious?) thinks I need it. She also told me that I will never be the same person I was before all this, that I'll have to find a new "normal". This is something that I've never heard before but it does make sense - no one could have an experience like this and not be changed somehow.

[Elfstar]

Thought I'd post a little "trip report" about Sherry's and my trip in memory of Jim. Obviously, there were mixed emotions - it was so odd being there without him - we both felt it - but as we started touring the parks, and telling each other what we'd done with Jim when we were here, and here, and here, we started relaxing and enjoying ourselves. A high and low point was reached at Epcot - Sherry and Jim had done a "leave a legacy" a couple of years ago - she'd forgotten her locator so we went to the photoshop to see if they could help - they have every location on file - and when I asked, they were able to print the original photograph that was used to make the legacy plate. It was so great to see him healthy - before the disintegration ALS had put him through - that I just burst into tears. The photo shop staff was wonderful, we explained what we were doing and they were so encouraging and supportive. The rest of the trip was calmer - we went everywhere he loved, went on most of his favorite rides (I cracked a rib a week before the trip and decided that Rock "n Roller Coaster probably wasn't a great idea temporarily), ate at all of his favorite restaurants (Sherry had never been to breakfast at the Crystal Palace before!) and the last day, without even thinking, we ended up at the pick-a-pearl stall in Downtown Disney. We each found beautiful pearls and had necklaces made to commemorate our trip. Sherry and I have always enjoyed each other's company but had never spent any one to one time together before - this was a very special trip in that respect also. And she's excited that she's becoming an aunt (by my daughter - her bonus sister) and can't wait to knit something special for the baby.

So, another step achieved, and more to come. I'm still seeing the Hospice grief counselor again next Monday - I can't seem to move past the anger phase - I bet I'll always be angry about this loss from this miserable disease.

[kimis]

I am so glad you trip went well and you made even more memories!

[two*little*birds]

This post brings back lots of memories for me. I lost my mother to ALS when I was 18 years old, she was 46. She had it for 5 years before passing.

It's been 15 years since, and I miss her more than ever now that I'm older and have a family of my own.

I will keep you and your family in my thoughts and prayers. :hug:

[Elfstar]

This post brings back lots of memories for me. I lost my mother to ALS when I was 18 years old, she was 46. She had it for 5 years before passing.

It's been 15 years since, and I miss her more than ever now that I'm older and have a family of my own.

I will keep you and your family in my thoughts and prayers. :hug:

I'm so sorry you had to go through that at such a young age - I'm sure you were a joy and a help to your mom. I'll keep you in my prayers, too. :hug: And thank you for your prayers for us. It was such a short road for Jim - thank goodness for his sake as he hated what ALS did to him. It still seems like it's not real to me sometimes - it's hard to believe he's gone, even though I was there with him the whole time.

[Elfstar]

Jim's birthday will be here in a few weeks - all these firsts are a challenge. I woke up Monday morning and found his favorite cat had passed away during the night - he'd seemed fine the evening before. I hope they're together now.

I'm pulling life together, mainly to keep occupied but it is getting easier - I just miss him terribly. To all of you fighting a disease with your loved ones, please know I'm sending you my strength just as you all did for me when I needed it most!

[buf68]

Keep going with the therapy elfstar. It seemed to be the only thing that has helped my mother. Unfortunately I just started seeing a therapist. No one helped me with my greif and loss (I was the "adult" daughter with a husband to lean on, so apparently they thought I didn't need it). Friday has been two years since my father passed away. I still don't WANT to believe it. If you ever feel like you HAVE to be strong about it, don't. Let everything out and take time with yourself and your emotions...that's one of the biggest mistakes I made was pushing myself an pushing the emotions aside. I hope that over time things get better for you, and your memory trip sounds wonderful.

[luvmarypoppins]

:hug: Prayers for God's peace,comfort and strength for you.

[MinnyGranny62]

:hug: Shirley

[MTCruiser]

I'm very sorry for your loss Elfstar.

[lisaann1170]

Belated sympathies to you.

I'm sad to say that I can commiserate some with your experiences. My dad has ALS, and although he was only recently diagnosed, his symptoms are progressing rapidly.

Illnesses such as ALS really make you appreciate every moment.

Hugs to you!

[Elfstar]

I can't believe how quickly this year has gone by - Jim's been gone 9 months already. I still miss him like it was yesterday. I'm doing okay, just missing him very much. The Hospice Grief Center checks in on me every couple of months - that's really been helpful.

I know several of you have lost your loved ones this year - please accept my sympathies. This board was truly a godsend for us all.

Our granddaughter, Cadence Dianne, was born on 9/4. All went well except that we all missed Jim's being with us to welcome her to the world. Hopefully, he's watching over her.