new member

[trying to stay positive]

Duke,
Nikki and Al have good suggestions. ALSA and Hospice would be excellent places to contact. Is your wife on Medicare? I think (not positive) that they will provide some respite care so you can take a much needed break. I, like you, am muddling my way through this disease. It sounds like your wife is more advanced than my husband at this point. What have you told your kids so far? My daughter is 14. When my husband and I sat her down to explain about the disease, it was the hardest thing I have ever done. She knew something was very wrong from watching his decline, but I know that she was hoping it was something "fixable". We are all three going to go to joint counseling, probably starting in Jan.. She doesn't want to go, but has agreed because it is so important to her dad.

But back to you! I don't know about NY, but IL has a state dept. of rehabilitation, and they can help with obtaining assistive devices. So can your local ALS chapter. Also see if there are any services in your community that will provide respite care. I know that getting enough sleep can make all the difference in the world. I have never been comfortable asking for help, but I have learned to ask my church family and neighbors and it has been a blessing. Any possibility of getting help from any of your children's friend's parents? Even a few hours once in awhile can help. I am so sorry you are having to deal with this. My heart goes out to you and your family and you are all in my prayers.
Linda

 

[dukesnider]

Liz, we are being seen at st. peters. Scott

 

[dukesnider]

Hey everyone, To begin with, when my insurance company, GHI got my wife's diagnosis, they dropped us. I had a family health insurance plan costing me $1400. per month. All attempts to fight them were futile. So, medicaid was the answer. We are too young for medicare and boy, have any of you ever dealt with the social services given from the state. It took me 4 days and 22 hours of standing in lines just to get her on medicaid. As for the rest of the family, since I am not working, state health insurance, which I am still waiting on, is what my family will have. I have been paying cash for all my kids doctor app'ts and meds. Medicaid is great in that it pays for everything, no questions asked. The local ALS center has all the medical equipment for free but as far as the doctor goes, I am a little disappointed. My wife is in a lot of pain, constantly. I can see it in her eyes as well as hear it in her voice yet, despite all my pleads to them, they won't give her anything stronger than IBUPROFEN. This is wrong. My wife's life, what time she does have left, should be spent in as little pain as possible. My brother is a doctor in a different state, when I told him about this, he was dumbfounded. So, my wife takes 800 mg of ibuprofen every 4 hours and I pray her liver doesn't give out. Soon, I will have to go back to work and I am dredding the thought of being away from my wife only for the fear of what will happen when i'm at work. As far as the kids are concerned, I contacted the schools psychologist and have told them the situation and that I will soon have to tell my kids exactly what the situation is with ALS. My kids aren't stupid by any means but I make sure they can't find out about ALS except what I tell them. As a parent, you want to protect your kids from everything but when you are faced with being the one person to tell them that there mom will pass away a lot earlier than she should, It kills me. It rips my heart out because this is the pain i'm supposed to protect them from. Talk about your catch 22's. Today I have to go back to the social services office to give them MORE paperwork for the health insurance. FUN< FUN< FUN. The worst part is that my wife will be alone for a few hours. In the past I have asked her not to try and walk around in case she falls but she is stubborn and says "don't worry I have a cell phone, if I fall I will call" In my head i'm saying, Yeah, if your still conscious! I sometimes look up to the sky and asked "why, why her and why me?" "what did I do, what did she do, what did the kids do to deserve this?" then I realize we are all apart of a bigger plan, a plan we will never understand but a plan we must play our part in, i just wish my part didn't have so many lines. Duke

 

[liz]

Hi Scott -

That's where I go too. We're lucky to have that resource so close to home. I'm sorry your wife's progression is so rapid. I can only imagine the strain you are all under. Have you got any extended family in the area to help out?

Liz

 

[hkohlman]

Hi Scott

Hi I am sorry to read that your family has to go through this terrible disease. I am wondering if you have let your kids school know about this situation incase any questions arrise at school the school staff would have a grasp on how to handle the situation. My dad is 65 and has ALS. I have two children ages 11 and almost 9. I did not tell them that grandpa was dying right away until they asked. I learned real quickly that kids are smarter than we give them credit for. There is a web site that is awesome for kids to help understand this ugly disease. Please check it out if you have not already found it. I think it may help you.


When I talked to my kids they wanted to know a little more and this really helped. I also talked to the school counsler and the teachers and principle and let them know what we wanted when they were dealing with our kids and my dads als.

http://www.march-of-faces.org/KIDS/moe1.html

I hope this helps you !


Please remember to take a deep breath and take care of yourself . Sometimes it just takes a few minutes walking down the block and back just to clear your head. OR a 2 min hot shower!


Take care and god bless!:-

 

[brooksea]

Duke,

If your wife is in such pain and she's on Medicare, can you take her to a different doc for some pain meds? Otherwise you may need to get adamant with the ALS Clinic doc about the amount of pain she's in. Is it pain from spasms? They can prescribe medication to help prevent the spasms, thus prevent the pain.

 

[dukesnider]

hkohlman, Thanks for responding. I have notified the school psychologist that I will have to tell my kids but I told them I was going to wait until after the holidays. Thanks for the suggestion. Duke

 

[hkohlman]

Hey Duke hang in there. Its going to be a tough season of holidays for all of us dealing with this ugly disease. Please update us on how your family is doing.

OH I almost forgot HAPPY TURKEY DAY!

Heather

 

[TerryO]

Hey, duke. Welcome to our forum, but also very sorry that you must join us. My husband has ALS and we also have young children. A son 7 and our daughter 13. We chose to tell our children right away but I dont know which is better to tell or not.,jury still out onthat one. My husband is 46 and is at about the same stage as your wife. he was using a cane in june and now has 2 braces and can barely walk around the house with his walker. A transfer belt is my savior when he falls which luckily is not too often.
Today was a very sad and tiring day for him. Most days are very normal, well as normal as can be. I hope that you can find some solice on this forum . I always come here for info and alift from all the wonderful pals and cals who share this space. Please do not be afraid to vent here ,we all have big shoulders. Best wishes. Terry

 

[beaner1]

Hi Duke,
Sorry you have to be here, and sorry you have to go through this - it is truly awful for everyone! My husband has ALS, and he is declining very quickly - he's only 47, and we have known he's had this disease for almost 2yrs. We have two kids - 22 and 19 both still at home (thank GOD! They're such a help), and it's been hard for them to know that their dad is dying, but too, they have had an opportunity to really become close to him and to really talk - they are so much closer to him, and even though it's a rough time for them, I think that they will always be so grateful to have time to say what they need to say and to hear what he has to say to them - they will always know how much he loves them. I know your kids are much younger, and you know best what to do, so you'll know when it's the right time to tell them - just remember kids are so intuitive (sp?), and their imaginations are really overactive.

As for your wife - she must be feeling so overwhelmed! My husband was (still is), and it's been rough - the only way I can deal with it is to think that he has so much to worry about, he doesn't see how his disease affects others - it's almost like they have blinders on. I think too, that they are grieving and they need to go through all of the stages that one goes through. Try to take care of yourself as best as you can, and just do one day at a time - that's how I handle it. Good luck to you and your family - I wish the best.
Beaner

 

[interested]

Linda, maybe because i'm new to the situation but it is so hard to find any free time to take a shower, never mind taking care of myself. I have 3 kids and a wife who is so so angry at the diagnosis that I am the brunt of it all. I am lucky to get 4 hours of sleep. I have no support nearby. My wife is now on a new thing. I'm not taking my effexor anymore. So now, along with all my jobs and duties and responsibilities, I need to deal with her crying hysterically at least once an hour. The kids keep looking at me because its their mom. I keep telling them she is upset with her situation and her frustration is getting to her. My kids don't know that my wife is terminal. I have not found the strength to tell them. My wife unfortunately, is part of the 30% that is declining very rapidly. In july she was able to walk unaided, now she has a walker and leg braces. She still has fallen twice. My wife doesn't want to tell the ALS center about her falls because she is afraid she will be put in a wheelchair. My wife's speech hs deteriorated to slurrs. It is so hard for me when my kids try to talk to her and i literally have to translate and of course thats leads to my wife being more frustrated and then she cries and I now have my wife crying and my kids crying and i'm in the middle. There is no way anyone can understand, outside of this forum, how this disease can affect a family. It is pure devastation and I am the only thing standing between the recking ball and my family. I am thankful though that I have found a place to vent and hope I can get some great advise on how to deal with this all. I look forward to your response and by the way, thanks for welcoming me. Duke.

My boyfriend of 6 and 1/2 years has ALS bulbar. He has 2 kids and does not want to tell them. But, his speech deterioriates and he is drooling and coughing and choking. It is so hard to know what is the right thing to do. He believes he will be one of the lucky ones who lives for years with minor symptoms. I feel like the "killjoy" trying to get him to address the potential for a different outcome. Any thoughts would be appreciated. Should we just be upbeat, even if that does not seem realistic?

 

[CindyM]

I think we should prepare for the worst and hope for the best.

 

[susahna]

to "Interested"

Hi interested. I've come on this forum because my very dear friend in Toronto has recently been diagnosed at age 50 and I was looking for any information I could find about what to expect and how to be with him. We've been friends since University in the 70's and he has always been loving and supportive. I want to be the same for him.

When I read your posting I realized that what can be blithely described as his "speech getting a little worse " might also include other symptoms he's not sharing.

I am afraid that my friend is so intent on being positive and not a burden that he is not telling me (or the rest of his friends) what is really going on with his symptoms. It is really hard to live so far away from Toronto (Victoria) and to feel so helpless.

I can only imagine what it's like for you.

I would love to talk with you more about this.

Susan

 

[caroliney]

God will bless you and give you strength.

Hello Duke,

So sorry to hear of your wife's diagnosis, ALS. But know that you are never alone, and you have come to the right place for support.

Continue to do every thing for your lovely wife and family. You are a special person (CALS)

Take care and asks for help if you need it. We know what you are going through, Been there and done that. A lot of knowledge at this forum.

Caroliney

 

[nanometer]

new today as well

Hi ,
I just stumbled on this forum and it felt like a good day to join. My husband was diagnosed with ALS in June. I'm having trouble accepting that he is changing. Now, when he laughs-- I can't tell if is it because we are having a good time or is it just a impulse not even related to our conversation. I've accidentally laughed along with him not realizing that he was upset (probably because he was laughing at something HE wouldn't normally find funny). This is really confusing and sad to me.
He doesn't want anyone to know--yet, life is changing. He is tired and his speech has slowed, his hands don't work as well, and as I take up more time to cover what he used to--others are wondering why I'm not around or can't help out as much. I feel like a fraud. Smiling and saying all is well. So, what kind of christmas letter do I write?( Hi everyone--perfect life!) He doesn't want people to pity him. I don't really want pity--can't stand that either. I just want to say--hey, we ARE doing really well or Gosh, not so well today--hope it goes better tomorrow. I'm wondering if others experience the same disconnect? It's as if talking about it makes it more painful and he just doesn't want to go there. Should he be concerned that if others know--he could lose his job? That is part of his reasoning for keeping mum--besides not wanting people to stare or notice.
Thanks, sorry this was so long.