need help

[cukita99]

i need help on how to deal or help my 18yr old deal with my als. my son has been through a lot and he is very angry. his father left me for another woman at the time i started getting sick. he is now having anger problems and my ex says i am the cause and as long as he lives with me he will continue being angry. my ex says that iim not capable of taking care of him and that if i love my son i shhould let some one that is capable take care of him. it hurts me to be the problem but i didnt ask 2 get sick. maybe i should just die n it wont hurt my son to see me like this.

[DonnaJ]

No dear that is not the answer. Be open and talk with him, let him ask questions, but be honest that we all don't live forever, its just that some of us have a better idea of that day than others. Get his counselor at school involved or find him a counselor or anyone else to talk to. He needs to vent to someone outside the ring. Good Luck, your in my prayers

DonnaJ

[kmgy]

I believe your son is very angry at this disease and how it is affecting his mother. he is not angry with his mother. I think you need to talk to him because if he leaves based on your ex husbands assumptions, he could experience tons of guilt/regret for not being there for you. He is probably very frustrated that he has been the one chosen to have his mother diagnosed with a horrific disease, and there is not anything he can do about it. He needs you as much as you need him. I am sure he is also extremely angry with your ex for leaving you and him when you were sick. he is 18, he does not need anyone to take care of him, he can take care of himself, he just has a plate full right now. Do you go to an als clinic? I am sure that there is someone there that can talk to him, or a support group for young adults which he can attend. good luck.

[Sammantha]

I still have use of all my limbs but i know exactly how you feel. I am about to lose my home, my car and hopefully not my husband. He works seven days a week and gets so mad that the docs cant do anything for me, he just does not understand. He takes his frustration out on me and the kids by yelling over little things and keeping to himself. He was NEVER like that before. I too feel sometimes that i would be better off dead to my family, that way they would have a home and all their bills would be paid and they would have money for college..... and then i start to think, what if this happened to them in the future or what if they get sick and need help from their children and or spouse, i certainly dont feel they would ever be better off dead. You are his mother, you gave birth to him and now he has the chance to care for you just like you did for him his whole life. My children are way smaller and they would care for me if i needed it. He is 18 and will feel much more like a man if he can help his mother, this will be a very important character building, and i bet he is angry at his father for abandoning you.... He probably cannot understand why he would not be there to care for you, even though he is in another relationship he spent a great deal of his life loving you... He probably does not understand how he does not want to help. Even though the two of you are not together it does not mean he has the moral right to not do anything to help. Please dont think about dying, if you do it on purpose your son may feel abandoned by both his parents. He is at an age where he can understand that you cant help dying, but he does not have enough life experience to understand how someone can get to the point of rationalizing that they would be better off dead...... I hope i helped someway, your previous replies were wonderful and i am sure you will get through it..........love Sammantha

[Icanmanz]

Hi cukita. I am so sorry to hear about the problems you are having. Have you tried talking to your son? I am sure he is not angry at you, because you have been dx'ed with this terrible disease. Why is your husband blaming you for it? What is he? A saint? Your husband knows, believe me, he knows he did wrong, he knows he is a failure, because he left you for someone else during this time when you need him the most. How long were you'll married? Does your son get along good with his dad? No, no, no please don't let this man make you believe that the reason your son is angry is because of you. Is he blaming you for his infidelity, too? What a heel of a man!
Cukita, about your son. He is 18 years old. He is a man. He can take care of himself. You gave him life, you cared for him, you have no one to take care of you, I presume, so why is he behaving like this? I have heard of children on this forum, a lot younger than your son, that wanna help their ailing parents. My deceased son's son was 5 or 6 years old when he became ill with Als, he was always by his side helping him. He helped his dad with little things till the day he passed, and this was a 6 year old. I see a sad picture, please don't be mad at me for what I am going to say. I see a sad picture, because your husband skipped out on you, left with someone else, and now your son is angry, and no one knows why. You are his terminally ill mom, he should really be compassionate towards you, and his behavior is not helping you at all.
This is one thing I cannot understand. I cannot leave this forum. I keep up with everything that is going on. I see quite a few folks here that get treated so badly by their own blood. I cannot understand this. I hate to opine, because I am afraid that I might say the wrong thing, but dammit, I hate to see people get treated so badly when they need help the most. This monster (als) came into my world, too, but I did not let this damn disease destroy our world. We have to be there for each other, our loved ones' days are numbered, the best we can do is express lots and lots of love, and make their final days comfortable. It is not a good feeling when these Pals leave us, so let's be there for them. These folks are trapped, they can't move, they can't talk, they can't eat, they struggle to breathe. This disease is pure hell. These folks they deserve the best care, especially from their loved ones.
cukita, I hope and pray that your son will one day find God, and ask him for guidance. Dear, please don't blame yourself for all of this. May God bless you! Prayers your way!

Irma

[Steve100]

cukita

Trust me, you are not the problem. I'm sure your son loves you dearly and would be heartbroken to think you blamed yourself.

Best wishes

Steve

[CindyM]

I agree. Like Donna says, he needs to talk to someone outside the ring. (Great expression, BTW!) Your Ex has already shown poor judgement in his life decisions: let's not let him call the shots here just yet.

That said, sometimes guys need to be with their dads. But your son does not need the guilt that will ensue if he leaves you now. JMO...

[MtPockets]

Hi cukita,
We are here to help you and your son get through all that you are facing. Please do not give up without a fight.

Don't fall for the lie your ex is telling you. Your son is going to be angry no matter where he is because of what he has seen happen to you. Both the disease and what your former husband has done. If you were to kill yourself he will be even more angry. Do you want that for him? He will have to live with what happens to you, for the rest of his life.

He is 18? He can take care of himself. At 17 I was on my own and in the Air Force fighting for my country during the Vietnam war. Please understand, your son considers himself to be a man, and he is. Accept it as fact. He is not some little kid who needs someone to change his diaper.

You have several choices facing you in the near future. Please consider all options. If you are not already getting some type of in house care from someone like Hospice, or a volunteer service, call your Doctor and see what is available in your area. You need help not only with the physical things of day to day living, but help with the emotional feelings you are experiencing. Call someone for counseling, support group, or something. Don't just crawl up into a ball and die. Fight this thing. Your son deserves to see you fighting. It will help him with all the emotions he is facing.

Please consider getting some spiritual help also. Here is a hug for you.
http://i160.photobucket.com/albums/t172/ShakeyMarble/Christian/Jesusgreeting-1.jpg

[cukita99]

thank u all 4 the advise n suport. i know its not my fault n he is not blaming me. he loves me n it hurts him 2 see me like this. we have talked n i have told him that if i learn 2 accept it so should he. i dont know why i let my ex get 2 me. we were married 4 19yrs my son stil has a relation with his father but refuses 2 live with him. i dont see any doctors cuz they say there is no cure n witout insurance its hard. since i worked 4 my ex n he didnt pay me i dont qualify 4 dissability or ss. i live from suposal suppport but it only covers my house payment n the lady that takes care of me m-f n my son helps my parents care 4 me on weekends. my parents r in their 80's. there is no support group in my area.

[vmd]

cukita99:

You are still your son's mother regardless of what your physical condition happens to be. You can still be there to support him and guide him in his own personal journey. The illness cannot rob you of your love for your son, nor his love for you.

Any possibility you could qualify for state help?

I'm single and if and when I start to deteriorate to the point I cannot take care of myself, I don't know what I will do.

[olly]

you need to get in touch with the nearest alsa, they will advice you on benefits and medicare,if you like i'll try to find one nearest to you, they can comeout for a home visit and access what you need, don't go this alone, iv'e often read your posts and i can feel the pain,depression and hopelessness in them, it upset me your post, i just want to give you a big hug, nothings your fault, your a wonderfull, beautifull person who has been struck down in her prime by this awefull desease. please hold on for your son and also the rest of us.
godbless you
caroline

[CindyM]

Caroline is right, cukitta99. There are a lot of free services for ALS patients. Please see if you can call or email the nearest ALS clinic. I do not know where in Texas you are but this site http://www.alsa.org has a list. I think there are about three Clinics in Texas, and they will help you get insurance.

[Icanmanz]

cukita, I am so sorry to hear there's no Alsa facilities in El Paso. The one that is closest to you would be the one in San Antonio, a straight shot on I10 from your city to San Antonio. This is their address and phone number:

ALS South Texas Chapter
8600 Wurzbach Rd. Siute 700
San Antonio, Tx. 78240

Phone # 210-733-5204

cukita, please try calling these people! Good luck, and God bless!

Irma

[cukita99]

thanks 4 the replies. i have tried everything 2 get assistance but they turn me down cuz they say i have income above the guide lines. i guess i have 2b homeless 2 get help.

[olly]

have you been in touch with the alsa? i'm sure whatever financial position your in there are things they can do to help,they would not just abandon you.
someone left a message about the one nearest you, please get someone to call them and they will come and see you.
i hope your feeling a bit better,i was very worried about you not posting back and was thinking of putting out a thread.
we are always here if you want to talk, you can pm me or email me if you need someone to chat to.god bless
caroline

[Icanmanz]

cukita, there is help out there. Believe me, there is, don't take no for an answer. Call Alsa, go to the Social Security office, tell them you have a terminal illness, and you need help. They just can't throw you to the curb, and leave you there to perish. That's BS!!! Cukita, El Paso is part of Texas, Texas laws will, and should not turn you down. El Paso is not so small, I have been through there lots of times. It is hard to believe that El Paso being the size it is is turning you down. Where Have you been going to, have you called Alsa? I am sure they have a County Hospital there. Please let us know! Good luck, and God bless!

Irma

[cukita99]

believe me, i tried n they have said, sorry. when i fell down n hurt my head i went to the er at the county hospital. i waited 7 hours n was never seen by a doctor so i went home. they sent me a 500dollar bill. mda help pay my emg test but that was all.

[jimercat]

Texas...the GREAT STATE of TEXAS! My God, My God why hast thou abandoned me?

Why do we keep hearing horror stories from TX? What is up with the ALSA in TX? Do we need to start an email campaign or what?

Irma, you seem to have had a great experience with ALSA. Where do they draw the line? Is El Paso too close to the border? Have we shortened our border down there? Is the ALSA drinking too many Martguerita's???

I was born in Texas and this is really "a disappointment."

[Lorie]

H---! Ya! Lets start a E-Mail Campaign. One day these folks are going to get tired of us ganging up on them and do something. I will report them to the National ALSA. Maybe these state ALSA's need to be kept in check. Alabama's didn't serve S. Alabama, until I bugged the H--- out of them. They served N. Alabama. Now they are holding meeting every third thursday and assisting people here. I know things can get done!

Lorie

[cukita99]

thanks, if there is anybody that can tell me what else i need to do to get help let me know.

[jimercat]

sent you PM.

I will try to help you if you will allow it.

[cukita99]

thanks cj n lorie for ur help. i know u have ur hands full n still find the time to help me. god bless u both love lupe

[MtPockets]

I am praying for a door to open, so that you can get the help you need. God can open doors that no man can shut.

[Lorie]

You are always so positive. I wish more people could be like you!

Lorie:-D

[jimercat]

I'm waiting for response from ALSA in order to get help for Lupe. Will give it til Wednesday for response from either the Nat'l or South Texas ALSA.

Will let you all know the results. May need to enlist Y'ALLs help!!!

[cukita99]

thanks, somebody from alsa contacted me n they r looking intosome asistance thur the age n dissable. i will keep u posted

[olly]

i'm sure they will do all they can to help cukita, there very nice people in texas especially at the alsa, renee lowery who helped delb is in north texas, they have been brillient and can't do enough for him.
i hope you get all the help you need soon.
god bless cukita and keep hoping, i'll be thinking of you
caroline

[jimercat]

Lupe,

Please do keep us informed of what assistance you are able to get! We want to make sure your needs are met!

[cukita99]

i got some phone numbers to call for assistance here in el paso, so since i cant talk i forward them to my neighbor to call. i will keep u posted. thank u everybody 4ur help

[jimercat]

Just wanted to post this response from ALSA. Hopefully, Lupe, you will get the help you need. If you don't we want to hear about it!


Teresa Cheek wrote:
>
> Hello, Cindy,
> I am with the ALS Association National Office and work from San Antonio, TX. I have contacted this patient to get her personal information (name, address, living situation, etc.) and have found a couple of agencies in El Paso that should be able to assist her. I have also provided the ALS Association Chapters in South Texas and New Mexico with her information. We will do everything that we can to assist her.
>
> Thank you for your concern and for providing us her postings to the ALSforums site. Also, please let us know if we can help you in any way. Caregiving is a big job.
>
> Teresa
> Teresa D. Cheek, LMSW
> Director Chapter Patient Services
> The ALS Association, National Office (Remote)
> PO Box 591907
> San Antonio, TX 78259-1907
> Phone: (210) 383-3141
> Fax: (210) 579-8500
> Email: tcheek@alsa-national.org
>
> Our nationwide network of 41 chapters provides patient and family support on a local level to those living with ALS and their families. To find out about programs in your community, visit www.alsa.org/community.

[jimercat]

another response from the San Anton office:

"Hello Cindy,

I work with the ALS Association South Texas Chapter and I am based out of San Antonio.

I have been in contact with Lupe over email. I have sent her links to resources in El Paso.

Unfortunately at this time, we do not have a support group in El Paso. One of our goals for this year is to establish a support group there.

I am trying to gain a better picture of her situation and find out exactly what her needs are."

Hopefully some folks in a position to help will come through!

[CindyM]

CJ- the power of the internet never ceases to amaze me! To think that someone in one part of the world can get help for someone miles away is just great. I wonder if the folks who invented the internet years ago ever fore-saw this day? First Deleb, now Lupe has been helped in this manner. Good job!!!

[cukita99]

thanks is amazing how u find help from strangers rather than ur own family. i want to thank everybody for their help n support. im bless with all my new friends in this forum. love u all