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Lorie

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Today I went to help with Tim. He was having problems breathing and I found the CPAP Co. didn't come to fix his machine three weeks ago when I called them. My Family didn't tell me. (he may have to go to the hospital). The phone # is on the machine. I called while I was there and they got it fixed. What is Breaking my Heart is Tim looked at me and cried and begged me to take him out of his suffering and misery. I got on my knees beside him cried and told him I wish I could. I hate it, I want so much to be able to do something for him. I use to think a slow progression was a good thing. Now I think it is just slow torment and living hell!

I am always so strong and Positive. But the fact of the matter is I feel, too. It takes a litttle more of me every time I see him. Which is often days every week. I wish so much that I could take care of him myself. I don't like him being at my Mom's. I have to give them instructions on everything and hope they do it and drill them. He rarely gets to see the Sunshine. I have put off for months going to the Funeral Home to make prior arrangements. I ,have to do it! Sometimes I wonder if having the Brains of this family is a mere curse.

By the way, I am taking the DIVORCE papers Tim's wife in WV sent him to our Lawyer next week. How much more can my brother take?


My Heart Aches do Bad!

Lorie:(
 

Icanmanz

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Hi Lorie! My heart goes out to you. I have read every one of your posts, and you are both a hero, and a saint in my book. My heart ached so bad dear when I read your post. I wanna help you so bad with good words, but I don't know where to begin. Tim, bless his heart, he begged you........................I bet that broke your heart in a million pieces. Lorie, I have been through so much pain. My son, diagnosed'ed in 3-29-16 and departed 6-03-07, 15 months later. It was a nightmare of nightmares for me. I went through hell. I used to go to bed crying, I laid there, crying, and I would wake up crying. I cried, and cried, and cried. I cried so much Lorie, that by the time my son was ready to leave us, I couldn't cry anymore. I felt like I had no more tears. I used to get mad at myself, I would ask myself, "Why am I not crying like before?" Don't get me wrong, I did cry when he passed, but they were tears of relief, because I knew that he was no longer in pain. I still miss him so much, but what are we to do when it's an act of God?

Lorie, I will be praying for youand Tim, okay? Lorie, about the divorce papers, what's the deal with the divorce papers? Is your brother still married to this woman? Man, I hate to opine, but I'm gonna do it anyway, and I hope I won't hurt anybody's feelings. Who wants the divorce, Tim or your SIL? Let's say if she is the one, just ask her not to bother you guys at a time like this. Tim does not need that right now! Just tell her to hold her horses, I'd make her wait. There are more important things, for instance like keeping everything around Tim beautiful, peaceful, and full of love. I wouldn't even mention it to him right now. This is only my opinion. May God bless you, and Tim. Please keep us posted!
 

Icanmanz

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sorry Lorie, I just noticed a mistake, my son was diagnosed on 3-29-06. I'm so goofy!

Irma
 

Lorie

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Irma

The SIL wants the DIVORCE. She was E-Mailing Men before we brought Tim home to
AL. She has CP and cant do for her self. She dont tell them that. I want her behind us.
The Lawyer I use sent me an E-Mail and said dont worry about any cost, just bring me the papers. He is so nice. Right now I feel like I am going to have an emotional explosion.

I dont know What I would do without my wonderful husband. I cant even talk to him right now.

Thank You SOOOOOOO Much. Please Pray. We need it so bad. I also feel your pain. I am looked up to in the Family as the Strong and Smart one. I am just having a really bad time right now.

Thank you again, I dont know what I would do with out you all!

Lorie
 

Sandee

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Lorie, I am praying for all concerned.

Sandee
 

Lorie

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Sandy and Irma

Thank you! from the depth of my heart. I am going through a really rough time right now.
Not only with Tim but myself. I am getting to a point to let those of you that dont know. know whats going on with me. It is 1:15 am here. I am going to bed and I am not getting up until I feel like it. As I am pushing my own body. I am not sure at this point how much I can take anymore. Everybody says everything happens for a reason. I used to buy that. I don't anymore! You will understand more later. I am not negative, just in reality.

I Love All My Friends Here. I will be on here sometime tomorrow (today).

I do like what I read earlier: P.U.S.H- Pray Until something Happens. Please pray, I need something to happen.

I am going to Post some of my and Tim's Bio. on my Blog. You will get a better understanding what we have been through and whats happening now.

I am so tired, I can hardly type. Tomorrow!

Lorie
 

Steve100

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Lorie

Sorry to hear how things are developing. You're both in my thoughts.

Take care

Steve
 

CindyM

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Sometimes I wonder if having the Brains of this family is a mere curse.

I hear you loud and clear, Lorie! When it comes to taking care of my Mom, I must say that a dozen times a year. She also asks to be released from her pain and suffering. It makes you cry when they do that. Once my Mom said "I want to go to heaven and YOU won't help me!"

Get some rest, my friend. And maybe take hubby out to a movie. You deserve a break!
 

brooksea

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Lorie,

You are so precious! I know your brother must love you so very much!

I am so very sorry you are having to go through such a trying time. I pray to God you will make it through this. It is people like you that are a shining example of what we can do if we put our minds to it.

Please hang in there! And know that there are a lot of people thinking and praying about you and your brother.
 

Icanmanz

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PALS
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Texas
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Tomball
Hi Lorie! Thanks for your PM! I opened it this morning, and now I am going through these posts. Came across yours. Dear, I am so sorry to hear about what is currently taking place. Dear God, I wish He'd give me the right words to ldescribe to you what I went through. It is identical to what is going on with you. You see Lorie, when these loved ones are being diagnosed'ed, the news are being given to you, it turns your world upside down completely! Your mind feels like it is going to explode. You are bawling, you name it, run from one room to another, asking yourself, "Why is this happening to us?" You pick up the phone to let your other loved ones know, you are crying your heart out, crying so much, that the people on the other end cannot understand what you are talking about. You deliver the bad news, "Als" and the majority of them don't know what you are talking about. Once you tell them, they tell you they are sorry. When you gradually explain this damn disease to them, everything changes. You are being treated different. I don't know if it's pity or compassion, but that one loved one's fate brings families together. I really don't know if I am making any sense or not, but my baby brought a closeness in my family. They gave him the best ever remembered funeral. We had videos of him, played music with good lyrics at the funeral home, we visited, celebrated his new life. The only thing I was missing was seeing him mingling with us. Oh yeah, he would have loved it. It was wonderful, very memorable.

I, like you Lorie, went through a period when I would go to bed, cry myself to sleep. I stayed in bed for long periods of time, hating to get up, and face reality. I did that for a long time. My son's progression was rapid at the end. He went nonstop. That is the way this damn disease is. At first it moves slowly, and then bam! I could see the rapid changes in my son right before my eyes, and I was just like a "death row prisoner" feeling the minutes tick away.

I am praying for you and Tim, Lorie. I pray that when his Father takes him home, there will be no pain, and no struggle. Please keep us posted. May God bless you all! By the way, how old is Tim? Does he have any children? Take care of yourself. Lorie, these painful feelings you are experiencing will eventually go away. He will carry you, and comfort you. We cannot see Him, but hey, He is there! He will not let you deal with this alone!

Irma
 

hope

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Oct 1, 2005
Messages
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Lorie,

I am so sorry you are going throught his. It is a very painful illness. I understand how you feel. It is heartbreaking. My husband is very ill and I too wish I could make him well. I am his caregiver, his wife, his best friend. We keep hope in our hearts that a cure will soon be found. Please know you are not alone, this is a wonderful site to come to for support. Everyone is so kind. Live everyday to the fullest. There are many hurdles I know but keep hope.

Sandy and hope.
 

califsand

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Hi Lorie,

I understand your position only I'm caring for my Dad instead of a sibling. It is extremely hard and nobody who isn't in your position will understand. The slow progression is both a blessing and a curse at the same time. You get to have the time to tell your loved one how you feel about them and they get the time to express their feelings but at the same time we watch them suffer and feel their pain. The anxiety that comes with that is thick and heavy, full of guilt, sorrow and anger.

My father is nearing the end of the illness and in Hospice care. It has been a HUGE relief for him to have the proper care that he needs and he is happier than I have seen him since the onset of his illness (he was diagnosed 4-5 years ago now!). I don't know if that is an option for your family but it may be a good thing to look into. You will still worry about him but it will be a different kind of worry when you know his needs are being met. The burden of responsibility is shared with a case manager, nurses and other staff who will love him like he is their family. We all had reservations about receiving Hospice care, especially my father, but when he got to a point where he needed more help than family alone could provide (he lived with me for about a year before moving to hospice) their help has been a life saver. For me especially! I am still a large part of his care and all decisions regarding him go through me but I can finally sleep at night knowing he is cared for by the best possible people. Until he moved to Hospice, it had been years since I could feel any type of release from heavy worry.

Hang in there and know that even though it does not feel like it, there IS a reason you are the strong one. It is a burden at times to be the one that people look to and with that feeling may come resentment but remember, at the end of the day you have provided something to those you love, especially your brother, that they could not get from anywhere else. Know that what you do is of a large value to your brother and painful as it is when he asked you to release him, he trusts you enough to talk to you about how he feels deep down inside. Not everyone will be blessed with that close relationship and trust. It is a burden but down the road, after he has passed, you will have NO regrets because you put yourself out there to help him.

My thoughts, heart and prayers go out to you because I do know what you are going through and it's the hardest thing you may ever deal with in your life. You're not alone, keep coming in here to vent!

xoxo
Sandy
 

Lorie

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You are Wonderful!

I woke up at 5:45 P.M. this evening. I stayed in bed all day. Saturdays are my rest days becuase I get up at 6:00 A.M. every morning during the week. Take my daughter to school come home and get into the day and do whatever I have to do or need to do whether it is something for Tim or my own family and I do a lot of work for ALS. At the end of the week I am exhausted. I dont go to bed till 11:00-12:00. I also have my own disabilities. And now I having more problems that I was not expecting. So under the circumstances I think I am doing very well.

Anyway, I came to the computer and onto the Forum while my husband and daughter went ot get dinner. I was reading the replies all of you posted to me and tears started streaming down my face. I had to get up and walk away, I couldn't even read my eyes were so cloudy. I went and made me a cup of coffee, I set an thought. You all don't know how much you mean to me. I have made some very special relationships on here that I think will last a long, long time. Again, Thank you so much for caring. As with a lot of us, this is really the only place we can be open and express our selves. Because we all have this horrible disease, in common.

Irma, Tim is 46. I am 44, my oldest brother Dale is 48. We have the same Dad. My parents divorced before I was a year old. I have two younger brothers with a different dad Ron 41 and Neal 39. They all live with Mom. We lost our Dad at 58 years old in 2000.
My younger brothers have also lost their Dad. That is one if the things that frustrate me with my Moms household. Some of them don't work and live on her. Tim pays rent. Neal, works at night and belss his heart. He stays up and cares for Tim in the morning. Tim could be getting better care. Most of them do what they have to do, not what they need to do and maybe even make his life more pleasent. It seems lately, every time I go we all get into a big argument because of what they are not doing.

As for hospice, We had Tim of hospice last year. I knew Tim was not going to die in 6 months. The Nurse and help showed up when ever they wanted to. We were doing more than they did. so we give them up to get Tim therapy on his legs. We gave that up because the family was not doing their part, which really hurt Tim. Then we went on a Health Care agency. Thye didn't hardly show up. So we recently dropped them. It looks like the only option we make have unless Tim dies before then is a Nursing home. I do not want to do that.

A few months before christmas, me and my husband went and bought a Laptop, and the Via Voice speaking program. So I could teach Tim how to use it and it would give him something to do. Well, he don't have it yet because they decided to let a recovering crack addict live there. I told mom I was not bring it, because I could see it come up missing and be pawned. They thought I was crazy. Well, Guess What? The girl recently went and Pawned a laptop her husband bought her for christmas. So I wasn't wrong.
I wan't Tim to have so bad. But I cant risk it. He Loves to write Songs. It would benefit him so much. So you get just a little idea of how life is.

I have to make Funeral arrangements because I have to have a Funeral Director because Tim is going to be a TISSUE ANKING DONOR FOR ALS, FOR THE UNIVERSITY OF PITTSBURGH. I also think this is a very important issue that needs to be discussed on here.

I will stop for now. But I do need your input on something. PALS and CALS. Tim's legs are weaker. He has complete Atrophy in his Arms, Back and Chest. He is very weak. Although we can still sit him in a chair. Here is the problem. We need to get a very comfortable chair. All the pressure is on his lower back when sitting. He is in a lot of pain. I thought about a reclining lift chair. But it would have to have a lot of comfort. So if you all have any suggestions let me know. I am going to go chair shopping next week and I want to surprise him. Thanks for any input.


Thank you all from the depth of my heart for being here for me.

Love,

Lorie
 

beaner1

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CALS
Country
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Alberta
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Redcliff
Hi Lorie,
My thoughts and prayers are with you - you are such a caring sister - Tim is lucky to have you. There are a lot of thoughtless, really stupid, inconsiderate people out there - sorry if I sound bitter! My hubby has just had a huge set back, and he's in the hospital - I don't think he has long, but we're hoping for the best. What amazes me is how rude some of our so-called firends have been - questions like "are you selling the house?" "what are the funeral plans?" "are you going to date right away?" - Oh My God! Is it okay to smart these people off - I have been!

Your question about the chair - we bought a lift chair made by Lazyboy - made sure it had lots of extra padding, but found that we had to add foam inserts as the padding just wasn't enough after awhile. The nice thing about the lift chair we got is that it had heat and massage - my husband loved that! He finds it painful to have a heavy blanket over his legs, so the heat kept him warm, and the vibrating massage eased his sore spots. We're in Canada and we got the chair from a home care store - it's been a God-send!

Maybe try a store like that for a chair for Tim. Good luck and keep the good thoughts!
Beaner
 

CindyM

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You have a lot on your plate, Lorie. I hope you get more rest today. Hugs, Cindy
 
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