Im scared, sad and angry!

[madaatlife]

My Dad, who is in his late 50s has ALS. Its not fair. I am just a mess. I have no control.... I don't know when, how or what to do.

Without getting into too many details, he is on a vent most of the day, he is extemely thin etc....

Good news is- he can eat/swallow and is in great spirits.

I HATE this. I hate what he is going through. He and my Mom had so many plans, so many dreams.

I guess my question for you folks is- Is there any familys out there that have a loved one going through this? How are you coping?

 

[beaner1]

Hi Madaatlife,
My husband was diagnosed last Jan. (he was 45 yrs. at the time), and it has been rough on our family. My kids are 22 and 19 yrs. old and they have had a hard time coping. The positive about this is that my kids have developed a really close relationship with their Dad and me - we have really become a 'family' - not that we weren't before, but I think we are all a lot closer and appreciate and love each other more. It seems as though my husband is progressing quite quickly now - we'll need home care soon, and this is difficult for the whole family - it is really hitting home that he is seriously ill, and won't be with us forever.

I feel so bad for you and your family - all of us here know exactly what you are feeling and going through - we all hate this! All I can say to you is to enjoy the time you have with your family - make the most of each and every minute. You have to live one day at a time - none of us know what tomorrow will bring, so appreciate the day, and give thanks for what you have right now.

If you can, find someone to talk to or find a grief group - they help. Everyone copes in their own way, as best as they can.

My thoughts and prayers are with you.
Beaner

 

[madaatlife]

Hi Beaner

Thank you for your kind words. Looks like you know EXACTLEY what I am going through.

I am SO sorry to hear about your husband. It really seems unreal, doesnt it?

You Mothers are amazing.... my Mom says the same thing... day by day. Thats what she does. I am trying that, but I just can not stop my mind from wandering.......

 

[MtPockets]

Hi Madatlife,

I'm a 60 year old dad with 4 children and 15 grandchildren. Maybe I can give you a few suggestions from the point of view of your father. I understand he is on a vent most of the day, but you did not say if he has lost the ability to speak yet.

If he can still speak, spend as much time with him as you can, talking. Ask him about when he was a child what was it like. Talk about anything, what was the price of gas, a coke, did he walk a mile in the snow to get to school. :-D Get him to talk about himself and his history so you will have memories of everything about him. I know when I talk to my grandchildren and tell them about how it was like growing up, it's like there is a better connection between us, instead of just sitting with me watching some tv program together, although we like to do that also. I want to hear how they are doing in their lives. Do they have a boyfriend, girlfriend, what classes do they like and why, any and everything. Are they interested in college, sports, etc.

If your dad cannot talk, he still may appreciate you sharing things with him, to let him feel like he is more a part of your life. I know this is hard for some people to do, but you might be surprised how close you can become just by sharing things.

The worse thing my family can do is to ignore me, not visit me, or spend any quality time just visiting. Of course my children are all grown and have their own families to take care of. I understand that, but they need to understand some people, when they get a terminal illness like ALS, are ignored by their friends and family when they need them the most. We are still the same people we have always been, just trapped inside a body that does not want to work.

To answer your question, we cope by growing closer together than we have ever been in our lives and by trusting in God to see us all through this together.

God Bless
Capt AL

 

[shellshell]

Hi Madatlife,

My name is Michelle and I too have a wonderful "daddy" that is suffering from this horrible disease. Let me tell you, it has completely turned my world upside down. There is not a day that goes by that I don't cry and get angry about this. When we first got my dad's diagnosis in February 2007, when he was 58, I felt like my heart was completly broken in two. My mom and dad are such a huge part of my life and we are so very close.

I haven't dealt with this very well at all, but then again, I wonder sometimes, who does, I mean this is life changing. I keep telling my husband I feel like things will never be the same again, and I realize now that they will not BUT...I have to try to make the best of what is going on for my dad's sake.

I was having a terrible day the other day, crying at work all day, the whole way home and then over to my parents house. Of course I tried to brush it off like everything was fine, like I always try to do, and my mom and dad were in their bedroom and my dad was hurting so badly in his back. This is someone that to me, has always been MY strength, the one "I" went to when I was hurting or upset. It killed me to see him like that, he was rolling back and forth on the bed almost in tears. It's so not fair!

I guess my point is, you are so NOT alone in this, there are so many wonderful people on this forum of all age, sex, gender, etc. There are folks on here that have been diagnosed with ALS, care for people who have been diagnosed with ALS and are in the process of trying to find out what their diagnose is. You have every right to be angry, sad, upset, depressed, whatever your emotions are that day, go with it. It's something you go thru and it is perfectly normal. Your dad is lucky to have a great daughter like yourself that helps him thru all of this. Anytime you need to talk, cry, vent, etc. fell free to post or PM anyone on here. They are all wonderful! :-D

I hope things get better for you with time...

Michelle

 

[pldo]

I lost my dad to a brain tumor almost 6 years ago. I had to watch him lose his ability to speak, stand up see, he went into remission and then it came back with a vengance. I know that it was not ALS but it was the hardest thing to go through.

I miss him every day. I named my daughter after him, and I see him in her every day.

I am sorry that you have to watch a loved one go through a disease that is terrible. My advice is to feel what you are feeling and enjoy the time you have with him. We do not know that we have tomorrow. I always made sure I told my dad I loved him- always say it- that is just my advice.

 

[CindyM]

Hi Madatlife. I am so sorry for what is happening to your family. You are welcime to come here and vent anytime! Plus there is a lot of esperience on this forum for all stages of this terrible disease, and people are always willing to share. I am glad you found us and hope we will be able to help! regards, Cindy

 

[madaatlife]

Wow

You are all AMAZING! Yesterday was my first time on this site and I really did not know what to expect. I am so happy I found you all.

Its so nice to talk and hear other folks who are going through the same thing as me. Yes, I have wonderful friends, but they just do not understand to the fullest as you guys do.

Yes, day by day......

Now that I know how sincere you all are... I will tell you a little more...

I live 1000 miles away from my parents. However, I fly home every 2 to 3 weeks. And we spend a wonderful loving time together. Sometimes I just lie in bed with my Dad and we watch TV. And we tell each other how much we love each other all the time. I can honestly say that I wont have regrets in that aspect.

I have asked to move home a couple of times, but my parents see my success and happiness where I am and they do not want me to leave that. It will upset them if I dont go on with what I am doing here.

Its so crazy. Who knew? Who would ever think this would happen?

THANK YOU ALL FOR BEING HERE. It is Fate that I found you all.

 

[Frizzel]

Hi WWBT

I just read the renewing of you mind and spirit from when you first wrote to your last post. When I need to been heard to just want to share my perspective this is the place I come. I don't have to expain things, people here know what I'm going through.

We just had our daughter and her family with 2 dogs come visit for a week. They helped us with getting things done that we just don't have time to get done because of other obigations and 'life'. They live a 10 hour drive away.

Like the Captain shared, we don't want to be ignored. What I've found with our grandson who was just adopted at 8 years old is he thrives on me watching him perform jumps on his bike and listen to him chatter. My daughter and I laid in bed and I stroked her head as we talked. What a joy to just be alive and share in the moment. That's all any of us have, is right now.

Thank you to you and others who take the time to make the journey a little fresher, a little sweeter and full of moments to last our lifetime.

Frizzel

 

[saska]

And thanks for sharing that memory, Annmarie...that was beautiful. Sharon