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Feb 6, 2008
Hello all...

I am new to this site. In fact, I've been without a computer for several months now and this is the first place I found for the needs I have. By the posts that I have read, I think there are a lot of wise and caring individuals here.

My story of which I need some guidance: My brother who voluntarily walked away from his entire family (sisters, brother, dying mother, aunts, uncles, nephews, nieces, cousins) 15 years ago, showed up on my doorstep July 30, 2007. He had Bulbar Onset ALS and had symptoms for two years before arriving at my home. I am the baby of 8 kids. My parents and grandparents have passed on and one of my sisters died of Limb Onset ALS in 2000 for which my brother didn't know she had died, let alone of ALS. At this time, I had my house up for sale. I had recently lost a job, had no significant other and my children had their own lives going on. I decided I wanted to pursue a different life devoted to helping others. I was in the process of striving to meet those goals when my brother showed up. I had various people tell me to continue with my life and I couldn't do that because I thought that was selfish and I couldn't look myself in the mirror. After all, I wanted to devote my life to helping could I not help my brother.

But, my brother has worn me down and I am experiencing a deep depression. I'm bitter and angry at my brother for all the fighting and stress he has given me...not from the disease but from him fighting me all the time about everything. He wore me down and I have no care left in me. He has treated me very crappy, has used me and lied to me. The disease itself is frustrating enough let alone his personality defects. Then, from afar, my family tries to tell me I need to do they go on with their normal life and I have none except to live and breath for every moment of need my brother has which is nearly every moment of every day. I'm burned out and angry and bitter and I don't know how to turn it around. I, for the first time in years, even swore at God for allowing me to be in this. I am ashamed of myself for my bitter, angry, resentful self and I have lost all self esteem. Due to this very unattractive side showing up, I also lost my boyfriend and I'm pushing away my entire family because I just have become hateful. It's not me and I don't know what to do.

Is there anyone else who has experienced bitterness and resentment toward a PALS or am I just a sick monster for feeling this toward my brother?
Hi hearts n thoughts. Just read your post, and it's a tough one. All I can do is pray for you guys. I wish I could come up with some ideas, but I am sorry I can't. Keep us posted though. God bless!

your not a failed caregiver

Hi.....My name is Donna and I am new as well. I read all you had to say and my heart goes out to you. I have lived and am living all the emotions and feelings that you wrote about. You ARE NOT a monster. Everything you are feeling in normal. I have been caregiver for my husband for 8 years now. I have gone through hating him, loving him, broken for our marriage, lost my zest for life, spirit feeling broken, depression, you name it and I could go on and on and on, but I still get up everyday and do it again and ONLY by Gods help. They are all normal feelings and they make NO caregiver a bad person. We are human and we are suffering from the disease as well. It took me a while, and I still have to remind myself when he is being so controlling, and mean and everything having to be a certain way, its because thats all the control they have left in this world. I've read it and lived it.....its common in ALS patients. I find myself before I scream back or slam and bang around to look to the Lord in prayer and ask him to give me patience, to calm me, to wrap his arms around me and fill me with the knowledge I need to deal with him day in and day out. It works.......I am living proof........I've been doing it for 8 years now. It doesn't mean u let them have to stand up to him and make him realize that YOUR all he has and that its time for Hospice to come help you so you can have some you time because its obviously not working like it is now. I know your brother or you don't want him to leave this world without peace. It's time for help. Hospice can releave you for a few hours a week. They have ministers for support and prayer, counselors that will come if not for him do it for you. They are there for you as well. I could go on and on about all the horrible times my husband and I have gone through and continue to go through but I would end up writing a book. I guess what I'm trying to say is look him straight in the eye when he is acting up and show him peace and love. And, make that call to Hospice YOU are worth it.

You have to let go of your anger toward your family. No matter how much they have let you down. I too have gone through that and still do at times, but you learn that it only eats at you and keeps you miserable. You were given this journey for a reason use it to make yourself wiser.

You stepped up to plate........that makes you a hell of a caregiver in my book.

Keeping you all in my prayers,
Donna - West Virginia

Thank you for your prayers. I believe in them and we definitely need them around here. Since I became a new person in the covenant of our Lord Jesus our savior 5 years ago, even in darker moments I always held strong to my faith. However, now for the first time, I have moments of such anger that I even direct it at God. I fear the Lord and would not do that but I have become a totally different person in this.

My brother doesn't believe in God and seems to relish it when I am broken. God must have trust in me to have me in this situation, but I don't understand how that is because I fail too often through my anger, frustration, depression and hatred to help to represent God's Good News. My brother fears death and seems to have much to be repentant about and I thought this could be a reason why the Lord allowed me in this situation. But, instead of getting through to my brother about the Lord, I am falling completely apart and away from God. I try desperately to get back and then my fuse is so short that any mean, rude, angry outburst from my brother or even just his too demanding self and I get angry, curt and mean right back.

I am usually full of patience and understanding, faith, hope and love. But, I have lost all of that. So, please continue praying that my brother repents and that I can be light instead of the darkness I feel I have become.

God Bless you all!
Mary Jo

Your response to my thread...(which is a good name since I'm hanging by a thread) was exactly what I needed so desperately to know and hear. It gives me that strength to move forward with a little more peace than yesterday. God has used you to give me that knowledge I needed to hear from someone who can truly relate to me that I am not a monster and terrible, horrible human being I have felt that I am turning into.

Please know that you gave me that proverbial hand of strength given to someone falling over a cliff. I hated myself for what I was turning into and yet I couldn't save myself...I needed that hand...and you gave it to me.

May God Bless you and may you have peace and love throughout your days!

PS: I know I am on a roller coaster, but now I can look at this and have courage to start up that next hill!

Peace to you,
Mary Jo
I can totally relate to the expression of anger to God. I am ashamed of the things I would shout out in the car while alone, or think to myself when not alone. I totally took care of my father for a couple of years. He had ALS for over 7 years. The really strange thing, is that I work in a church. My husband is the youth pastor at a Baptist church, and I am the choir director/organist/pianist at a Lutheran church. Who would ever expect someone like me to say and think such hateful things? I guess noone is perfect, and we shouldn't beat ourselves up for the thoughts we have.
Mary: I wish I just thought it and didn't say it at times...but I spoke it. Was your father ever on a ventilator? 7 years seems like a long time to live with ALS.

Donna: Same with your husband...8 years seems like a long time. Is your husband on a ventilator?

Mary Jo
we shouldn't beat ourselves up for the thoughts we have.

How true! Beating up on ourselves only makes a tough situation worse! Thanks for reminding us Mary Helen.

Mary Jo- regarding your brother; when a PAL is experiencing dementia and becomes difficult to deal with, we often remind ourselves that it is not the person, it is the disease that is making him or her act this way. I suppose the same goes for a person with a difficult personality who happens to have ALS. I hope you can find a way to take care of him part of the time while also finding relief from his behavior. Clearly, you should not be subjected to his behavior fulltime! Cindy
I spoke it, too! I shouted it! (not to my dad, but to God.)

My father's ALS started out in his left hand. He seemed to have a very slow progression. I think 7 years is considered to be a long time for ALS. I have heard/read that bulbar symptoms move a lot faster. He didn't seem to have any bulbar symptoms until summer of '07. Once the symptoms started, this progression really sped up. He also had a hideous bedsore that couldn't heal, because he had to be on it. He was not on a ventilator. I think if he had lasted a little longer, it might have been suggested. He had an appointment with the neurologist scheduled for a week and a half after his death. Really, by the time he started having shallow breathing, he only lasted about a month.

Is your brother on a ventilator?
Mary jo,I read your post last night and i just couldnt answer right away it just broke my heart.I am so sorry that your life at this time is just in such upheavel and torment.My husband passed on Jan 16 of this same terrible monstoruos disease.I believe that thier are life lessons to be learned in spite of the grief,pain,frustration and anger we all deal with while caretaking.I feel confident when i say one of them is not to let ourselves be abused no matter how desperate the situation our loved ones are in.To let yourself be abused will not help him nor will it help you!Sounds to me like your brother is and was always a very angry person now being exsterbated by this cruel disease.The fact that you say you have lost all self esteem would be an indication that his abuse is taking its toll on you.!Sounds also to me like your familly is only reinforcing the notion that you also need to suck it up and do what you have to do to care for him . I understand your need to help those in need especially your brother however you cannot help someone who will not help themselves.Please people i know how horrible this disease is first hand and i thank God that my husband got over the angry stage and came to a place of acceptance where upon he appreciated my efforts however abuse is abuse and i would not encourage anyone to take it no matter what the circumstances.Mary jo please surround yourself with people who will support you and love you and understand your situation without adding to your allready stressfull situation.Please look for help wherever you can find it.You are not a monstor by any stretch of the imagination!We are all here to support you whatever decision you make and praying that god will guide you in the right direction .I am also praying that your brother will learn his life lesson as well which probably involves directing his anger at the disease instead of the only one he has in this world right now to step up to the plate....god bless you....Gina
Cindy: Thank you Cindy for your words of encouragement. Unfortunately, it took me falling into depression and deep anger for my brother to allow Hospice. He is a veteran and this ALS is considered 100% service connected. So, he is in complete charge of his care and what help we receive.

Hospice began helping 2 weeks ago and we also have a home health aide 15 hours a week. They are a tremendous resource for assistance. My son and his girlfriend are in the process of moving in to help.

I just began counselling Tuesday and I believe things are on track to make me a part time caretaker for my brother rather than the full time, so things should improve. Unfortunately, depression has given me an extreme obstacle to overcome.

I am so happy I found this support group. It's what I needed to help me move along in a positive direction. Thank you all so much for being here~~~~!

God Bless you all!

Mary Jo
Mary Helen:

No, my brother is not on a ventilator but he has oxygen bled into the bipap machine and panics if he is off of the bipap or oxygen for longer than one minute.

In July, my brother came to us with the ability to move and use all limbs although he did struggle. His breathing was difficult and he often choked. He finally got a bipap in September. During that month he began to lose his left arm and now it is completely limp. He is losing his right arm quickly now. He is deteriorating at a fast rate of speed. Up until a week ago, he could hold a paper cup and drink it. He has a feeding tube but still insists on being fed table food. That is understandable as it pertains to his quality of life. He cannot hold his head up. He has lost a great deal of weight and refuses to take nutrition through the tube many days. He no longer can be understood when he talks either.

I am sorry that you had to go through what you did with your father. My father died when I was 4 and we believe he also may have had ALS. In 1968 we don't think our rural hospital had much knowledge of it. They listed his death as having muscular dystrophy as a secondary significant cause. Heart disease was primary cause.

Bed sores are such an issue. I helped to take care of a quad for awhile in 2006 and he developed them. Somebody will be very rich if they develop a better way to avoid bed sores than the current way. Thus far, I am lucky that my brother is able to readjust his weight on his own to avoid the sores.

Thank you for your support,

Mary Jo
Gina: Thank you for telling me not to accept abuse from my angry brother. You are right that it does harm to both of us if I accept it. You are also right that the family was wrong in expecting me to suck it up because my brother is dying. I have been deteriorating with exhaustion...both emotional and physical...and this has depleted my energy that is needed to care well for my brother...who unlike Zot's brother, is pretty much a perfect stranger to me. Now we are thrown together under these difficult circumstances.

I am sorry about the hardship you had with your husband before and after his death. I am glad to hear he appreciated you and had peace. My sis died of this horrible disease also and she had peace also. She had a wonderful husband who was her caretaker and appreciated all of her moments with family and friends. I'll never forget how she smiled really big the day we all went up into the mountains near San Diego in a convertible. She loved convertibles. She loved the mountains and that drive. I miss her.

But truly Gina, your sincere heartfelt advice touched me deeply and gave me some more courage. Each one of the replies I get strengthens me and I appreciate you all. I am so blessed to have found this site. Many blessings are sent your way.

Mary Jo
Mary Jo, so funny that you would mention how your sister loved convertables.My husband owned a 68 Oldsmobile convertable which he loved to work on and restored last winter to almost mint condition.In the summer he was still able to drive it and by mentioning your sister i recalled a night coming home from the country after a Bday party for one of his friends.The top was down and it was a clear night and you could see all the stars and it was a beautifull ride home with the wind in your hair and the power of the motor and how much he enjoyed that ....thanks you have just remined me of a memory very dear to me ...God bless ..Gina
Update on my situation:

My sister visited from out of state for a few days. I threw her into the roll I was in. She told me she learned alot and was very exhausted from the care that was needed. She talked to the rest of the famil. My oldest sister called me to give me support.

I know there have been alot of people praying for peace and relief in our situation. The power of prayer is remarkable. Thanks to all who said anything at all to God on our behalf.

Family members have also confronted my brother regarding his behaviors. What began as silent anger stewing from both my brother and I at the beginning of this week has dissipated.

I feel some confidence returning and today I feel there really truly may be light at the end of the tunnel. A twinge of guilt jumps in as I write that sentence because I feel like that light may come when my brother passes on. But, then, if he would accept Jesus as his savior, he too, can have that light at the end of the tunnel. So, I guess my guilt is uncalled for!

God Bless you all,
Mary Jo
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