So sad when reality sets in (originally posted on General Discussion Board)

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luminosity

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hi to all,

I am new to this site... i originally posted the following message on the General Discussion Board, and Big Al responded with a suggestion that this discussion board would be helpful to me...

My dad was diagnosed with ALS in Dec. 2004. I'm 27 y/o, single parent of an 11 mo. and I moved in with my parents about 5 months ago to help out, and so Dad could see his grandson more often... I am the type of person who tends to deal with problems by prentending that they are not happening. For example, several years ago, my younger sister ended a long battle with depression by committing suicide. To this day, I still sometimes try to convice myself that she is merely on a long trip abroad, or something, and will return someday.

I am really struggling lately because living with my parents is forcing me to face the reality of my Dad's disease. When I moved in with them in Feb 2006 my Dad was still able to go to work and live a normal life... Now, he can barely walk, even with the walker. I sit back and watch my baby son develop motor skills at almost the same rate that my father is losing them... and I just don't know what to make of it... I just wish I could stop time, halt everything for a while... but I know I can't

Yesterday, it just hit me like a ton of bricks that he is actually going to die from this... I feel like I'm drowning --- I just cry and cry and cry and cry.

I want to talk to him about it, but I don't want to upset him by showing him how devastated I am... hopefully there is someone else out there who understands where I'm at right now...
 

Pearl

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I'm very new to all this too, so I'm afraid I'm not much help. But I do want to tell you how very sorry I am that you are having to experience this with your dad and I am so sorry that you are so very sad right now.

Perhaps you can just be honest with your dad. It's like the elephant in the room that no one wants to talk about, but he knows better than anyone that he is ill. It might do you both good just to confront your feelings. He might not want to say anything to you because he doesn't want to upset you. But , honestly, how much more upset could you get?
 

Paula

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I completely understand where you are coming from. I am also 27 and am living at home with my parents. My dad was diagnosed in Feb of this year. I have taken the summer off from work to help care for dad and just spend some quality time with him.
I also feel like it is terribly difficult to express frustrations and sadness with my dad. I think sometimes though we assume that they are more fragile than they really are, perhaps because we ourselves feel so fragile.
I just wanted to drop this little note to let you know there are many people that understand what you are feeling, so that you don't feel alone. This disease so often makes us feel very isolated; as if we are completety alone with these terrible feelings.
I hope to talk to you again
Paula
 

Beebe

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Hi there, So sorry about your Dad, my heart goes out to you. As time passes and progression comes it seems harder and harder for all. My son-in-law was diagnosed in April, 2006, he's like a little boy. He's 42. My daughter needs surgery re-done has 2 screws in her neck holding a cracked bone together, very dangerous but she keeps putting it off because of Jack. My two children a 34 year old and a 42 year old. Each day is very precious we cry , we laugh we are all in this together. Cry if you have to I've held it in too long but I was told by my daughter cry if you have to I do! Talk to us here or whoever can comfort you we here understand. Cherish the time your son has with his grandpa they are times you won't forget. My best to you and your family. I'm a good listener. Fondly, Beebe
 

Catrina's Angel

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Friend turned caregiver

Hi. I met my friend, Catrina, years ago. I am old enough to be her mother. We became friends. I would see her from time to time. We both had busy lives. I became re-acquainted with her four years ago when she moved to the same small town I live in.

She was diagnosed with ALS in 2004. She is now 33 years old. She has a 14-year-old daughter and a 9-year-old son. She has no family. Her husband of 14 years turned tail and ran in June of last year. With her first health care provider, no less. So, there has been a divorce and all that goes along with that.

I have absolutely no caregiver background, other than for my children. I find myself in a difficult position. This role I find myself in has been gradual. Catrina always says that when things like this happen, you find out who your true friends are. Well, there just aren't many or any, most of the time, that want to have anything to do with her or help her in any way. So------here I am! I have a back that is shot and take care of my 2-year old granddaughter and also do all I can to help Catrina.

I have decided recently, in for a penny, in for a pound. So, okay, I'm a friend and caregiver to someone with ALS, I need to get with the program and be in it for the long haul. But, it is extremely difficult, knowing how this story ends. I find myself worrying like a mother for my sweet friend in a terrible position. I wonder if what she needs is a mother figure to step in and then I worry that I will overstep my boundaries by doing so. I guess the bottom line is-------HELP!

I want to be a help, not a hindrance in this situation.

Any input as to how to proceed would be greatly appreciated. I'm kind of leading off blind here.

Thank you.
 

califsand

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Yesterday, it just hit me like a ton of bricks that he is actually going to die from this... I feel like I'm drowning --- I just cry and cry and cry and cry.

I want to talk to him about it, but I don't want to upset him by showing him how devastated I am... hopefully there is someone else out there who understands where I'm at right now...
When my Dad was diagnosed it didn't seem real and honestly I think that I expected him to get better. To be strong for him, I didn't show him my tears but I cried in private all the time. The thing is that we talked extensively about his illness, what he was going through, how he felt, what his wishes are, etc. He isn't married and as his oldest daughter maybe we both just felt that someone had to know....

My point is that I think that you should talk to him about it, he's probably afraid to upset YOU by not bringing it up. It's okay to talk about it though and it is okay for you to cry on each others shoulders too. My Dad and I have had a few moments where we both broke down in tears and although it was gut wrenching, it was real and full of love. It hurt because it made it more real but it helped because it made it more real. If that makes sense.

Hang in there and know that you are not alone. Unfortunately, you are well understood here :(
 

beckycooper31

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talk while you can

I have ALS and although everyone is different I think talking about your concerns is helpful and brings us closer. Perhaps if you open the conversation with your concerns it will allow your father to know it is ok to discuss his fears with you. Sometimes I don't say anything except I am fine because I don't think anyone really wants to hear. By opeining up it will help with the stress of the PAL and let them feel less alone. Becky
 

MtPockets

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Luminosity,
I appreciate your love and concern for your dad and I'm sorry you are having to go through this. I hope you have found some support from members of the forum and friends and family. Times like this should bring a family closer together as a team to hold one another up.

I have 3 sons and a daughter. I was Dx May 11, 2006, and so far all that my children have talked to me about ALS was "How you doing dad?". Because we have not had a frank discussion about my current symptoms and what I am going through in my mind, I feel like everyone is in denial still.

Just yesterday my son the Doctor told my wife that she was enabling me to be sick? Yet he refuses to sit down with me and look at my medical records, because he refuses to accept that his dad is dying.

I have 15 grand children and some of them have talked openly with me about what is happening, but I wish my children would do the same. To give you a dads perspective, I feel like me and my wife are going through this alone because everyone will not talk about the elephant in the middle of the room. (ALS)

I think many dads would feel the same and want to talk frankly about this disease. Especially about their family getting involved with things to help spread the message that ALS is out there and we need all the help and research we can get to find a cure for this disease.

I pray that you and the other members of the forum will find peace in God during this terrible time in your families lives. My personal belief is that I could not have made it one day without the grace and love of God in my life.

I know many of you have different religious beliefs. I'm just trying to share how I am making it through this battle. I am not alone in a spiritual sense even though others may not sit and talk about this disease with me. It is very hard for me to put into words sometimes what I feel in my heart, but I have a peace, a calmness about where I am and where I am going. That makes a world of difference for me.

God Bless
Capt AL
 

Icanmanz

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Hi Becky, sorry to hear you have ALS. I agree with you about everyone being different. I agree with your post. You have such a good way of thinking. I do not believe in keeping thoughts, feelings, fears, etc. inside of you. I have always been an open person. May God bless you Becky.

Irma
 

califsand

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Captain AL.... my brothers were like that with my dad for a couple of years, they had to see his degeneration in order to accept that the ALS diagnosis was real. I spent the most time with my dad and knew right off that it was real, I started to grieve right away and had some unpleasant conversations with my brothers because they thought I was enabling him.

Fortunately for Dad, we had a really open dialogue going and I relayed things to my siblings for him. I don't think that my brothers really took things seriously until we had to take away Dad's driving priveledges and the Dr. set up a meeting for the four of us to go in and talk. That was the first time that the boys were open and they asked the Dr. a ton of questions that I had already answered for them! However, the Dr. lent credibility and watching each one of them accept Dad's illness was hard but neccessary. Perhaps it would help if your Dr. son had a meeting with your Dr. I'm sure that he knows what ALS does and just doesn't want to accept the fact that you have it, I don't blame him...but you shouldn't have to feel like you are going through this alone and without your family supporting you. I'm so sorry that their fears are making you feel that way :(
 

CindyM

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Hang in there and know that you are not alone. Unfortunately, you are well understood here
THis is why we are here, Califsand. Support and enouragement. You said it best! Cindy
 

JACKIEMAX

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elephant in the room

i, too, understand where all of you are coming from. i am the only person who will talk frankly with my husband who was diagnosed with als in jan. 07, but his symptoms showed up in jan. 06. we talk about all of his symptoms daily because he needs to be understood, and to know i am there for him physically and mentally. we have talked about his funeral - he wants a military funeral - and funeral home to use, and he has written his obit already.

we cannot pretend our loved one is not dying of als. they are, and everyone that comes here to visit us, says 'how are you today?, and pretends he just has a bad cold or something. no one actually discusses his symptoms or his 'feelings'.

we need to educate the rest of our families and try and make them understand that als is a monster disease and will take the life of their loved one, and they need to say everything that needs to be said before it is too late.

i don't want to have any regrets when horace is gone that i left anything unsaid.

jackiemax
 

CindyM

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Hi Jackie- I am in total agreement. My Mom is also dying- she is in the final stages of ALzheimer's. My sisters are nearby but do not go visit. They say they hate to see her like this and they say they cannot communicate with her so they stay away. When they ask how she is, I lay it on the line. I tell them how she is a shell beneath the sheets and how she does not have the strength to open her eyes. And I tell htem to get busy and get over to her while there is still time. They may still have regrets but not because I am sugar-coating what is happening! Regards, Cindy
 

MtPockets

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"I want to remember them like they were"

Have you heard this excuse? What they fail to realize is we need their support now. What good are tears and flowers going to do us after we are gone?

That excuse is for people who have no courage and no kindness. They are selfish, almost child like in their immaturity of emotions. It is sad that society has taught us through television and the media to ignore the handicapped, elderly, and terminally ill. Let's shuffle them off to a corner of the world where we do not have to see them like a Nursing Home, Assisted Living Centers, and then we can go on with our wonderful happy lives, as if we are doing nothing wrong.

For example, how many of these examples, handicapped, elderly, and terminally ill, are in the movies and on TV? No, they would rather focus on the Paris Hilton's of the world. Who cares what that ding bat is doing? These people will one day be in the same place as us, and when they are ignored, they will be as upset as we are now.

Jesus ministered to the sick, the poor, the dying of His lifetime. We should be following the example set for us, but man, in general, of course neither believes nor follows the bibles teachings.

This is so very sad! :(

God Bless
Capt AL
 

MtPockets

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"I want to remember them like they were"

Have you heard this excuse? What they fail to realize is we need their support now. What good are tears and flowers going to do us after we are gone?

That excuse is for people who have no courage and no kindness. They are selfish, almost child like in their immaturity of emotions. It is sad that society has taught us through television and the media to ignore the handicapped, elderly, and terminally ill. Let's shuffle them off to a corner of the world where we do not have to see them like a Nursing Home, Assisted Living Centers, and then we can go on with our wonderful happy lives, as if we are doing nothing wrong.

For example, how many of these examples, handicapped, elderly, and terminally ill, are in the movies and on TV? No, they would rather focus on the Paris Hilton's of the world. Who cares what that ding bat is doing? These people will one day be in the same place as us, and when they are ignored, they will be as upset as we are now.

Jesus ministered to the sick, the poor, the dying of His lifetime. We should be following the example set for us, but man, in general, of course neither believes nor follows the bibles teachings.

This is so very sad! :(

God Bless
Capt AL
 
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