How do you do it?

[SorrowfulDaughter]

My Dad was diagnosed with ALS only 3 weeks ago and they gave him 1-6 months to live. He is already paralyzed on his left side (they misdiagnosed him in December as having a stroke). He has a lot of difficulty breathing so he has a trache tube. His speech is so soft it is incredibly hard to understand him. I am just so sad...and angry. It seems to be taking him over so quickly. I don't know how you do it, I just want to sit and cry all day. I go to pick out a card to send him (he is 3 hours away), but there isn't anything that seems to fit, everything is get well soon, the only ones that seem to fit the situation are sympathy cards. We are going to visit him again this weekend, but what do you say? You can't talk about the future, I feel guilty if I talk about any plans I have because I know he can't make any......I just don't know how people make it through this.....

 

[joni51]

It is certainly not easy, we all just muddle through and reach out to each other for help and comfort.. So sorry about you dad.

 

[Ladyinn]

Joni is right, it isn't easy. As a Pals, myself, I can tell you to keep your dad involved in your life - don't exclude him. Share memories with him and let him know what a difference he has made in your life.

I'm assuming your mother is his primary caregiver - she will need your help at times so be sure she knows that you are there. And, when you need a shoulder to lean on - this is the place to come. We all understand. {{Hugs}} and welcome to our forum family.

 

[SorrowfulDaughter]

Having a place to come and see how others cope and share experiences makes me feel like am no longer alone.

 

[cukita99]

idk how doctors can say how long we have. nobody knows. just take one day at a time.

 

[brooksea]

Don't let the day go by when you visit your father that you don't tell him about how much you love him and what YOUR future plans are. Your plans for the future have been shaped by him and you don't even know it. He will be pleased to hear you have something to look forward to.

 

[Katie C]

there seems to be a point at which the doctors can give an educated guess if they are truly ALS specialists.. but it usually involves a very short amount of time. What Joni said is absolutely right... we do what we have to do one day at a time, one hour at a time, sometimes one minute at a time. We take baby steps and do what we have to do.. and worry about dealing with our own feelings and reactions later.

 

[KKay]

Dear Sorrowful, I am so sorry this is happening to you. My husband has ALS and it is a slow progression comparatively speaking. I lost my father quickly over a period of months to very aggressive cancer 10 years ago. It was very difficult to know what to do and how to act. Be as helpful as possible, talk about old times with your dad - tell him why he is so special to you and make sure to laugh! Tell him that you love him often. One thing we did with dad was listen to books on tape together and look at the newspaper together for something interesting happening to share. If you live 3 hours away and everyone has a computer you could Skype phone calls so he can see you. Again, I'm very sorry.

 

[Tom's Support]

One day at a time, that is the only way to keep going. Sometimes a day is tough and you go hour by hour. The lesson of learning to live in the present is a good one to get if you can. Tom has always lived in the past. I have always been in the near future. With this lifestyle (the ALS lifestyle) you get more out of living if you deal with the right now. Right now I am communicating with friends, a happy time. Tom is up and in the shower, hopefully a great start to a great day! Good enough. Don't read too far ahead in the book, it is frightening, but take comfort in knowing that there are a lot of PALS who don't give up on their day and a lot of CALS who seem to find the strength they need to do what is necessary and leaking tears is just a way of pouring out the exhaustion.
Welcome to a source of strength and comfort, this forum.

 

[EGBAR]

My daughter is attending ASU, lives in Mesa AZ, studying her GRE. We live in FL. I haven’t been able to tell her yet that I have been diagnosed this week. I want to wait until she comes to visit in July Aug this year. To your question of what to talk about....I am new to this disease but I want her to talk about everything with me. What is going on, what she is planning, what her fears are, how she feels. The hardest part of this so far is how it affects the ones I love. There will be plenty of time to cry and mourn; I just hope that my daughter and I continue to share the same relationship we have built over the last 25 years.

 

[abbigaill2]

Dear sorrowful
How about a card with nothing in it.. Write your own words. Tell him what a wonderful man he is and how much you love him. Hugs you tight

 

[Tom's Support]

Dear EGBAR, in a 25 year run, the relationship you built will be the bond that keeps both of you supported through this. If you and your daughter are close, then close you will remain. If you are not so close, maybe this will be the vehicle to solidify your bond. Children have a resilient strength that you can count on, you can draw from, just keep her in the loop. You will have more knowledge about your journey by August, and then together you can find out more. This forum can be here for her too.

 

[tammyg]

As a daughter of a father who passed in june 09 @ 68. It still hurts. You will be amazed how strong you are inside. When I would go visit I had a hard time not crying too. I would cry all the way home for hours I have tears just writing this (only child). I would wake up out of a deep sleep crying, it's all you think about all the time. You cannot let him see you down, tell jokes, tell him everything you keep him going just to look forward to your visits. Buy him flowers to look at when you are not there, buy him a funny poster to hang in his room to give him a chuckle every time he looks at it.You need to tell them about what you got going on, your kids, your life. Its the hardest thing I have ever went through. You feel you are getting jipped because you are losing him, I used to think how people whose parents passed from a heart attack didn't know how lucky they are. Watching someone going through this is very humbling. My dad passed from ALS/bulkbar, he could not talk and I would do anything to hear I love you which he said all the time and I took for granite. I joined the forum last night, don't know why til I read yours, people here understand. I would tell people what he had, most people don't even know what it is. Then they would say I am so sorry. Yea me tooooo. Visit him as much as you can. You have to laugh with him, smile,tell him about your day everything, don't let him see you sad , it makes them sad. I think it is even harder being a daughter, dads have always been the rock, now they are not strong at all and you are. (and your family) They have always taken care of everything, it's hard for them to feel so weak, having people do stuff for them. Hang in there.

 

[tdamess]

i buy cards that say thinking of you . this is hard and a shock but you will be able to work it .

egbar , it will be a shock for her also if anything i think it would bring you two closer

 

[SorrowfulDaughter]

My Dad passed away last Friday, June 10th, 4 weeks and 1 day after his diagnosis. I am glad he is no longer in pain, but I am selfish and still want him here with me.