Emotional Rollercoaster

Here is what I hate about ALS. Just exactly that! I hate that ALS makes me hate. I hate that it makes me feel powerless and I don't even have the damn disease!! I try to encourage my brother to do the things that are recommended and prescribed for him to do. When I asked him if he had started physical therapy he responded with "I don't think it will do me any good". Oh? I don't recall him ever going to medical school and I don't think he stayed at a Holiday Inn Express last night! The time is NOW to do these things, not later. But how? How do you get someone who won't help themselves to do these things? I hate it and I am angry. I probably shouldn't write this because it makes me sound whiney. But I need to vent. His wife can't do everything and he is still very much capable. I am 2 states away otherwise I would drag him kicking and screaming if I had to. So. What do I do? I guess I go back and read that page in my Going Bonkers magazine that says it's not my problem. I can't change it if he won't change it. Hate is such a useless emotion. So what constructive emotion is there when it comes to ALS? I know the 7 stages of grief by heart. Those don't help. I beg him to watch the Rob videos on YouTube. The ones in the ALS Sucks series. I can't even get him to do that. Neither can his wife. Rob is so encouraging. What do I do? I feel like a sinking ship. Well, thanks for listening. I feel like I have a family here and I deeply appreciate that. So many of you are so positive, enlightening and encouraging. Through tears I give you smiles and hugs.

By healALS
Posted June 20, 2009 at 10:20 am
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Glad you vented. ALS is the most frustrating disease to watch, especially a loved one. Patience, an unbelievable amount of patience comes with this disease. Remember your brother is devasted with this disease and probably feels nothing can help. Prayer works to enlighten and change attitudes, if your conversations fails. Everyone goes through different stages at different times. Positivity doesn't just happen, it's a painful process to get there. God bless, may you stay strong and keep encouraging your brother. Get mad at him when he needs to hear it. It helps in the long run.

By bonniec
Posted June 21, 2009 at 8:27 am
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Steph, you need to vent.............it is a horrible disease, and I went through everything you are going through. One day on this site someone wrote the words, 'its not your life, its his life, he needs to make the decisions'. I lived by that and it made being his caregiver much easier. If he did not want a bi Pap, then thats what he got. God Bless you, and just hang in there.

By KarenDawn
Posted June 22, 2009 at 10:07 am
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Just love him! Tell him everyday if you can.
I told my husband its okay to be frustrated with me, and love me at the same time, we understand. We have to do what is right for us at the time, even if we have regrets later, but knowing love is unconditional gets us through as love is also the most forgiving. There is no time for hate, it takes too much energy, its not worth it.
Sending you a hug and a little sunshine.

By greensmile
Posted June 22, 2009 at 1:07 pm
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hi:)
a.l.s. or as i call it a.l.ass. because ,yes,it is a big kick in the ass,butit's good to vent.it is frustrating,angering,sad etc. etc.but.............yep,life must continue for all involved in the best way possible.one must look at the bright side,the humorous side,and try to laugh since laughter and happiness are good for anyones health and well being.both cals and pals need mutual encouragement .both need respite,rest,and relaxation,lots of mutual understanding and love.
we're here to be with you and do just that.soooo....sending you lots of hugs,prayers and encouraging smiles:) :) :)
never ever give up hope,keep the faith,and keep smiling:)

By Steph09
Posted June 22, 2009 at 4:40 pm
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Greensmile

I wanted to tell you it is harder to send something to where you are than I ever imagined. Especially something so small as a rubber bracelet!!

By Steph09
Posted June 22, 2009 at 5:25 pm
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I really appreciate everyone's replies and words of strength and encouragment. I know deep down that this ultimately is his life and he is going to live it the way he chooses. Funny thing is, I don't know if any of you are familiar with the whole IMCLONE scandal that erupted a while back. Well, when my father was so sick near the end with carcinoid cancer I had called my brother one Sunday and told him that he really needed to come down to see dad that he really did not look good. Dad had a doctor's appointment the following day. My brother asked me if dad had received the information in the mail about IMCLONE that he wanted dad to take to his doctors appointment. I told him yes but I did not think there was enough time for that. His response to me, and I quote, "You GD people and your pessimistic attitudes!!". I just told him, "fine, you do what you want to do" and I hung up. When we went to the doctor the next day dad said to the doc when she walked in "tell me it's only going to be another couple of weeks". We were dumbfounded. That was on a Monday. Two days later my mom called me real early and said she was having problems helping dad get outta bed. She never had to help dad get out of bed before. She sounded panicked. My husband and I quickly threw on some clothes and drove as fast as possible to their house. When we walked in it appeared that dad had maybe had a stroke. He looked so scared and could not say a word. About a week before I had gone to my doctor because I was having a problem with depression. My doctor asked me if my dad thought anyone here still needed him. I looked at her and I said "well he KNOWS I still need him!". And she said "well, maybe you are the one who is keeping him here". So, when I walked in their house that morning and saw dad in that condition I walked to the bed and took his hand and said "daddy, if you can hear me squeeze my hand". And he did. Then I said "daddy, I love you with all my heart, it's ok you can let go". I had immediately called my brother after my mother had first called me and told him to leave and not even pack a bag and as it was he may not make it. My husband and I started to get dad cleaned up and into a clean pair of jammies and moved over to a clean bed all the while my mom was making a flurrie of phone calls to doctors, hospice and others. Once we got dad settled he started snoring to beat the band. I thought to myself, maybe this was just a setback. I went in at one point and just stroked dad's face and kept telling him how much I loved him and how great my life had been. I bent over to kiss his cheek and I knew at that moment was when he took his last breath but I got up and walked out of the room anyway and never said a word. I was on the phone with my sister-in-law and was staring at the floor when I saw my husbands shoes. I knew why he was there and I refused to look up to have it confirmed. I don't even remember what I said to her on the phone but she screamed. We decided not tell my brother since he was still driving (it's a 5 1/2 hour trip). Everybody came and went but we opted for leaving dad in his bed until after my brother arrived and was able to say his peace. The hardest thing was having to take dad's wedding ring off his finger after several hours because we had forgotten. I wear it to this day but that's another story. Why did I even tell you all this? Because my brother has turned out just like his father. He is a procrastinator. He is one to bury his head in the sand and think "not me". What good would it do? seems to be the question without ever trying. Dad had an experimental radioactive treatment done at Duke that they had had tremendous success with. It failed on the first attempt. They were stunned. They begged him to come back for another treatment. He refused. He told me under no uncertain circumstances there would be no chemo and no radiation and made me promise. I promised but it was hard. So you see? They are just alike. They don't want to help themselves even if help is available. Even if, in my brother's case, it is just physical therapy.

By swhite-geo
Posted June 24, 2009 at 8:16 am
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Wow, thanks for writing and venting Steph! Sometimes it's all we can do to smile and pretend everything is okay, but the second we begin to do or say anything, we're reminded how little control we really have. Try to be thankful you can still pick up the phone and tell him you love him any time, and that he is still able to respond, no matter his response. Only God knows what he needs. Praying for you all!

By NativeDGW
Posted June 29, 2009 at 2:22 am
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Hi, I lost my brother on March 23rd, 2009. He was officially diagnosed in January. From the moment he was diagnosed he told us he wanted no tubes. I too tried to educate him on the types of "tubes" or equipment designed to help him breathe but he would just nod and say, I know, I know. When my sister-in-law called me Monday morning on the 23rd and told me he was dead I was half hysterical and half happy for him- that he went like he wanted- no tubes, machines, fuss, or experimental drugs. Of course, I was mad at him too. He could have been with us longer if he had used breathing assistance. But I know I was being selfish. He wanted to be of no burden. He worked up to 2 weeks before he died. My sister-in-law wanted to try everything and anything to prolong his life. But my brother was brave and chose his path. I hurt inside every day but he had to make his decisions and live his life.
Good luck, I hope for the best for you and your family.

By bonniec
Posted June 29, 2009 at 9:23 am
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Oh my gosh! He passed so fast. I am so sorry for your loss, and my heart goes out to you and your family. I know he is in a better place and he crossed over the way he wanted to.
God bless you all.

By Steph09
Posted June 29, 2009 at 9:53 am
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NativeDGW

My heart cries with you in the sorrow of your loss. That is so fast and I do understand that your brother went the way he wanted. I guess there is peace in that but we are, by nature, a selfish species when it comes to love. We want those we love to live forever but the best we can hope for is a painless peaceful death if it has to come too soon. God Bless.

By pcormier
Posted July 1, 2009 at 9:38 pm
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Dear All,

Everyone's path is different. One thing I haven't seen anyone talk about is the lack of initiative that results from lack of energy. Certainly depression plays a role as well.
The three actions that can extend one's life are a) going on a bi-pap early, b) having a feeding tube inserted, and c) having a tracheotomy inserted. These are all big things.
My husband, diagnosed in February, 2007 with limb onset went on a V-pap in April of 2008. He hasn't spent a night without it. I worried about the noise (I know that sounds trivial) but the sound is really comforting. He had a feeding tube inserted in April of 2009. He hasn't used it yet--I flush once a day (It takes about 2 minutes). These are scary steps. He is on the verge of having a trach.
Sometimes I think someone close needs to step in and really push during the early stages.
For us, joining our local eHope.nu as made all the difference in the world. I hope others have local organizations through the Muscular DA, and the ALS Society.
pcormier

By intune
Posted July 4, 2009 at 5:41 pm
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I know how you feel, and I feel much the same way. Your brother may be right about the PT, however. My husband was diagnosed in 2007, and did all the things he was told to do. It did not help one bit. The only thing I know of that PALS can really accomplish with physical therapy is to maintain range of motion so that as they become more paralyzed their joints do not freeze up, making it difficult for caregivers to bathe, dress and move them. It will not improve muscle or motor neuron function, and it will not slow the disease. Your brother is probably and understandably depressed. Who wouldn't be? We have been through quite a bit of that with my husband. If you can find something that gives him a reason to hope, you may find it improves his outlook and his physical functioning as a result. That has certainly been the case for us. My husband has found hope in stem cell treatment he plans to try in Monterrey, Mexico this fall. We all need to feel that there is something we can do.

By juniette
Posted July 8, 2009 at 10:17 pm
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I just wanted to thank you venting. I wish I could give you some words of encouragement or advice, but what I can tell you is that you are not alone. My brother too was diagnosed with ALS - symptoms began in November 2007 and diagnosed in November 2008. He does not want any therapy, does not want to join any support groups, does not want any equipment nor does he want to try any medications...just doesn't want! He is the youngest of my 4 older brothers, but the tallest and strongest, he was the most fit. It's been very hard to see the changes, to not understand him speak, to see him struggle with the simple things in life we take for granted. He says the only support he needs is family. SOOO vent all you need (I just so happen to be a great :)...you are not alone.

By fanny7
Posted July 13, 2009 at 1:39 am
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Wow, i just joined tonite & you posted on my birthday, of course had to reply. Doesn't it feel crummy being Human? And stop reading the 7 stages of grief; your not there yet. Whatever you do don't take away your bros spirit. Take all of that energy & love you have and focus on the tipping point. Theres alot in the pipeline & breakthu is immenent now. And thank you, i too feel a part of something too now. I somehow tripped into this site while researching med journals, just about sittin on the pity pot, upset, alone, worried, hopeless (kinda) and viola, Im meeting people who I identify with. Its late and i didnt confirm my ride (hate being a charity receipient of zealous church members) well intentioned & needed, of course. Help me with this, when did the world change when I wasnt looking? Have we become so overhelmed with the shit put in front of us we somehow forgot how to care or love. At this late stage Im realizing now why I never got promoted. My reports must have provoked some extreme emotions & lotsa laughs. Next time your driving acrost a few states thank the Gods your not on the Garden State Parkway & walk in with a gift, tee shirts work. Its all a matter of focus & controlling outcomes. Be good always & take care of yourself. fanny7.

By Steph09
Posted July 13, 2009 at 9:16 am
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Fanny, what are the circumstances that brought you here?

I attended a support group meeting yesterday. Dr. Bedlack, the director of the /Duke ALS Clinic spoke to the group. It was awesome and informative. You are right, Fanny, there is a lot coming down the pipe. Most seems geared towared understanding the dynamics of ALS however there are a couple of drugs that are coming up for clinical trials. And, no, IPLEX is not one of them. Dr. Bedlack spoke at length about the "dark places" on the interent that you can find that offer successes with stem cell injections, etc. He told us of one such case where a boy from that states was taken to Russia for stem cell treatment. It did nothing for the disease he had however after doing a PET Scan they discovered a sizeable brain tumor. When the tested the brain tumor they found that the stem cells that comprised the tumor were not his. That's scary.
We had my brother on speaker phone Dr. Bedlack's talk and when I spoke with him afterward he sounded upbeat and encouraged. I hope he continues to research and that he no longer feels like he is alone with this.

By montanaberg
Posted July 14, 2009 at 7:12 am
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ALS is truly one of the most horrible diseases one can get and anyone can get it. There worst part - there is no cure!!! However, the one thing an ALS patient has control over is his or her attitude. Rather than just stitting in a corner depressed about what one cannot change, wouldn't it better to still enjoy life as much as one possibly can? But your brother will need to get to that realization himself.....

We are doing a documentary on a singer/songwriter/comedienne who is gravely ill with ALS. And yet she is facing her own extinction with wit, wisdom, courage, music and love. The film is not done yet but a sneak peek can be seen at www.leavethemlaughingfilm.com. Perhaps your brother would be inspired to live more fully by watching the demo?

By Steph09
Posted July 14, 2009 at 10:47 am
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Thank you for the link to the demo. I watched the entire film and was both saddened and inspired. Karla seems like such an exceptional person as does her son. It is very hard to mix wit with this disease but she has found a way to do it. I am curious about something that was touched on towards the end. She mentions going through a divorce. Is/was that because of her ALS?

By CharlesHaleSrWife
Posted July 29, 2009 at 3:27 pm
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STEPH09, HONEY UNTIL YOU HAVE WALKED IN HIS SHOE'S THEN YOU HAVE NO IDEA OF WHAT HE IS GOING THROUGH AS THE MUSCLES DIE HIS BODY BECOMES AN EMPTY SHELL. I AM SORRY IF ANYONE CAN'T HANDLE THIS EMAIL. BUT THE TRUTH IS NOTHING WORKED AT ALL FOR MY HUSBAND AND YES WE DID TRY EVERYTHING THAT WAS OUT THERE. CHARLES MY HUSBAND OF 25 YRS ONLY LIVED 19 MONTH'S WITH A.L.S. THE PAIN HE DEALT WITH WAS UNREAL. I DO REALIZE YOU LOVE YOUR BROTHER BUT HE KNOWS WHAT LIMIT'S HE HAS. I PRAY THAT HE STAY'S STRONG AND FAITHFUL AND YOU ALSO STAY STRONG HE WILL NEED YOU AND YOUR LOVE. GOD BLESS YOU AND YOUR'S SINCERLY KATHY FEAGIN HALE

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