new member

[dukesnider]

Hey everyone, I am new to this forum. My wife has ALS and I have no support near me. Noone really understands what I am going through being a caregiver for my wife. I would love to make some contacts ( friends) to talk to too. Thanks to all who answer.

[l2c]

Welcome, we are all in this together and the people here understand you better than anyone else because they have, are, or will experience much of the same things.

[jimercat]

Hey duke,

Sorry bud that you've had to find this forum. How old is your wife, if you don't mind me asking? Are you registered with the MDA and have you contacted the ALS Association for assistance? Sometimes they can provide help.

We're here for ya, albeit cyberspace support!:-D

[freddiesnetty]

Hey Duke,
Welcome to the forum. I myself am pretty new here, you couldn't tell by the posts. My husband has als and I also am the sole caretaker for him. My prayers are with you, everyone here is so helpful and supportive, I have raised 7 children and numerous others, my house was the house everyone hung out at and have discovered the trick to good caretaking is taking care of yourself, my pals we always sleep in on Saturday. I think he sleeps in so I can get caught up on much needed sleep that is lost due to the work week. So hang around here, it is very helpful. I wouldn't get through the day without it..........not to mention its addicting. There are so many questions to ask, this was never going to happen to any of us just other people, well here we are so WELCOME!!:-D

[CindyM]

Hello Duke and welcome to the fourm though I am sorry for the reason you have to be here. Feel free to discuss anything that is on your mind- often the subject has been raised before, and if you use the search feature at the top of this screen you will see what I mean! :-D

Glad you decided to join us. Cindy

[dukesnider]

Thank you for your warm welcome. I feel like I finally found a place where people "get" what I am going through. Thanks again, Duke

[dukesnider]

Thank you for replying. My wife is 48 and I am 40. We have 3 kids 9,11 & 13. My wife is registered with MDA and we have been to our ALS 4 times now. Thanks for the concern. Duke

[dukesnider]

Cindy, Thank you for welcoming me into the forum. I have a million questions that i must sift through. Thanks for the help. Duke

[trying to stay positive]

Hi Duke,
I too am pretty new here, and also have no nearby support. My husband has ALS, we have a daughter 14, and the future scares the you know what out of me! But everyone here is so supportive and helpful. I agree with the others.........it is important to take care of yourself, especially when you have kids! I see a therapist once a week and my minister every 3 to 4 weeks. It helps alot. When things start to feel overwhelming to me, I try to focus on what I need to do TODAY, and not look at EVERYTHING I need to take care of all at once.

[Gina]

Hello Duke,so sorry that your wife has als!She is so young to have to go through this but lucky to have you.This forum has been a godsend to me.My husband also has als.You certainly must have your hands full having three children to care for as well.I wish you the best and hope you will stick around and let this be a home for to get the support you need........Gina

[dukesnider]

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.

[Icanmanz]

Hi, duke! Welcome to our forum, and now it's yours, too! You will never regret that you joined this forum. You have just found a new family! I am so sorry about your wife coming down with als. I don't know if you have read any of my posts or not, but I just lost my son, 38 yrs., to als on June 3, 2007, so I know what you are going through. When was your wife dx'ed with als? It is a hard journey, but God will be there for you and your wife. You came to the right place for support, questions, ideas, help, you name it, you will find it here. Don't be shy, just ask! May God bless you and your family!

Irma

[liz]

Hi Duke -

Is your wife being seen at the St. Peter's ALS Center?

Liz

[Al]

Hey Duke. Sorry about your situation. Have you contacted ALSA or the MDA to see about information and support?
AL.

[nsmith555]

Hi Duke,
I'm sorry you're here but welcome to a wonderful place to be in the midst of what you're having to cope with.
It's my mom who has ALS, but watching my dad be her primary caregiver gives me a perspective into what you're going through. My mom sounds a lot like your wife in her staunch desire to remain independent - she's fallen several times too (including today when I was helping her) and refuses to consider not trying to walk. My folks are both 75, and I see that this has really taken a toll on my dad - he's stressed to the point of confusion and hardly eats much at all - I suppose in sympathy for my mom.
With that in mind, take care of yourself and your needs. You need to stay healthy and strong.
Just yesterday, my mom agreed to Hospice, and I think that's going to be a tremendous help to my dad. It may be hard to convince your wife to have help like that but keep that in mind as well.
Take care and may God Bless You while you go through this,
Nicki

[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 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!!!:-:)

[jimercat]

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]

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]

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]

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.

[CindyM]

Hello Nanometer. I am sorry to hear about your husband but glad you decided to join us. It takes awhile to sort things out in the beginning. Some folks tell one or two family members and let those folks spread the news, others tell it in bits and pieces, starting with saying he is having some neurological problems and eventually getting aroudn to the full details.

As for his job- I don't think he can be let go due to health issues. They may have to find him a different job, or one that accomodates his disabilities, as I understand the law but I am no lawyer. You might start by researching the Americans with Disabilities Act on line, or by contacting your local Center for Independent Living (http://www.cwtc.org/).

Good luck and keep in touch. Cindy

[dukesnider]

Interested, I told my kids that their mom has ALS. It was the only way to explain to them what their mom was going through. I just left out the fact that her life will be shortened dramatically. They still think she can get better. I figure I am going to tell them in January so I know in my heart that they get one more christmas without feeling the pain and heartache that I do. My wife, besides the leg braces and walker, drools, coughs and chokes all the time. Sometimes its so bad but the kids attribute it to her disease. It has made life a little easier because I couldn't imagine trying to explain to the kids the walker, the leg braces, the drooling, coughing and especially the choking. It would seem that my wife will need a feeding tube soon as she is having difficulty swallowing any kind of food. My time to tell the WHOLE truth is rapidly approaching and I am dreading it. My biggest fear is they will all plunge into depression and any hopes for THEIR futures will now be compromised because they will worry about their mom and the little time they have left with her. I think the hardest part to telling them the truth is making them realize that although Their mom has this disease, the disease shouldn't define them as kids and ruin any future THEY have. I know the truth will bring our family closer, But I am so afraid of the after shock. I have psychologists waiting for the kids after I tell them but I don't know if that will be enough. Time will tell. I have told all of our friends and family. They all know about my wife's diagnosis But I am upbeat about it at all costs. Even if it is a lie. Pity is not for me. Having people feel bad for me or my kids won't help the situation, only make it worse. I find that if you are upbeat and keep a level head about the disease, friends and family will. They feed off of you, look to you on how to act because most of them don't know how to act or what to do. Ultimately, it is your decision but because i am in your shoes, I find being upbeat and positive is the best way to go. When my wife tells me that she will beat this and it is only temporary, I used to tell her to face the facts and lets get a plan of action together but that only led us to fight and be angry at each other. Now, I agree with her and keep a positive outlook for her because ultimately she is the one living with the disease and she needs to accept it before I can show her that I accept it. I hope this helped. DUKESNIDER

[CindyM]

I think it helps a lot, DUKESNIDER, although I don't have small kids and probably shouldn't guess what that is like. The issues seem overwhelming. For wha it is worth, I am impressed with the good job you are doing with it all. Cindy

[Amanda529]

Welcome Duke. I am new to this myself. I have found this place very helpful i am able to talk and everybody knows how i feel and what i am going through. It helps me alot. Feel free to post anytime there are so many helpful members on here to help us through this rough time in our lives. God Bless!!:-D

[Icanmanz]

Duke, I will be praying for you and your family. I know what you are going through is painful. Your idea to wait till after Xmas to disclose your wife's future sounds like a wise one. I know it's going to be painful, but Als is here, and it will not go away. May God bless you and your family. How well I remember where I was Xmas a year ago. Again----God bless you all!

Irma

[swmn]

Hi Nanometer - welcome and just thought from what I've learned a nice Xmas card - let alone gift would be information on ALS through ALSA... the saddest thing I ever hear from CALS is how family & friends dont even know what ALS is- if they knew, they'd wat to help, you could use this "letter opportunity to educate those you otherwise send greetings to, and maybe make them step back and reconsider the value of every day of life - and the little we truly care about to keep our boats afloat... the Xmas letter is an opportunity to say we are here and we have something to share - we want you all to be informed and support research / national data base - in the Xmas spirit they should respond well
I wish you all the best of luck - you are in my prayers

[Thumbs Up]

Your wife is right, keep a positive attitude. I hope people don't mind my constantly referring to Roberta, but she had the most amazing attitude. When we were growing up I always thought she was the timid one, she was afraid of everything. But when this happened to her she kept so upbeat. Her son was 12 when she died. Roberta tried to keep positive by joking, she told Chris that she would be going to the big shopping mall in the sky and wouldn't need any money there. She was a shopalohic. I remember the day she died, the first thing Chris said, my Mom is shopping right now. She used to go to a Neuro in London, Ontario. Dr Strong, he was amazing, Roberta said she had to best bedside manner, he made her feel so positive and hopeful. I am sure you have gone thru the clinic routine. The only one she did not want to see at the clinic was the one that tried to make her accept the fact that she was dying. This she would have no part of, she said I would rather concentrate on living the time that I have left, why the negative. I don't want to dwell on dying. Let me enjoy the time I have left. Even after her watching out mom go thru what she did, she knew very well what was up ahead but still kept her positive attitude. So thumbs up and God bless you, I feel so bad that your family is going thru this. I hate ALS and I hope as I said in my previous posts, we have a big family and now I think I have gathered enough strenght to continue fighting for a breakthru. I am going to follow up with the study in Montreal at McGill for an update since we have 2 more ALS right now. I will let everyone know what I find out. God bless you all, Norma

[Clbrink]

Duke, I know it is very difficult, and it will test you beyond what you think you are capable of. I understand wanting to wait until after Christmas, it’s a great idea. Children are very smart; they know a lot more than they tell you.

When my husband was diagnosed my oldest daughter was 7, she hit the nail on the head. Most people when told about the diagnosis asked "what's ALS" and then ask, and some still do, is he getting better yet? My daughter said what is ALS, I explained as clearly as possible, how the message from the brain does not reach the muscles.

She asked, "Mommy does that mean he will not be able to hug me?" I said "you will always be able to hug him!"
Then she asked "what about his eyes, what if he can't blink", I explained voluntary vs. involuntary.
Then she got a look of panic and asked "mommy is the breathing a muscle" I said yes, the diaphragm" she said "is it voluntary or involuntary?" at that point she knew he was terminal...

Out of everybody that I had to break the news to, she understood and broke it down so logically!

There are stages that children go through, just recently I ran across an article that explains children dealing with anticipatory grief, how important every stage is. Most importantly how important it is to involve your children every step of the way.

The articles are on www.beyondindigo.com

I know how it is to run around, non stop to get to the end of the day, exhausted, feeling that you never fully finished or accomplished much, to feel like everything is out of control, to feel so alone and to have guilt feelings although you have done your best.
Intentions go a long way.

DO NOT FORGET YOURSELF! And accept help from others when it is offered!

Hope your holidays bring many happy memories to be cherished by all.
Tina

[dukesnider]

I just wanted to wish you all a happy new year. Duke