My daddy Has ALS and I am Terrified!

[DaddysLittleGirl]

Hi my name is Kolonie. My dad has ALS and has had it now for 3 almost four years. It is very hard I don't know what to do sometimes i live in Michigan and he lives in southern cali. I cant talk to him when i want to because he cant talk any more they only way we get to communicate is through skype on the computer I text him daily to let him know i am thinking about him but its hard when i don't get a reply i know he misses me and it hurts him just as much that he cant reply to me. I am finally going to California to see him on my spring break ! I am so excited! Ia m also terrified to see him. Last time I saw him he was able to walk and talk a bit but now he is in a wheel chair and can not talk at all. I am so scared to see my daddy! I feel selfish because in away I don't want my last time seeing my daddy to be this way but i know i have no choice i just cant stop thinking how i will never hear my daddy tell me that he loves me again that i will never hear him say how proud of me he is and worst of all my daughters will never get to hear there grandfathers voice and that is what hurts most of all! I just need help and support to get me through this hard time i live in a very hard town so there is no where i can go to get the support i feel i need I attend church regularly and that helps me a lot and I know i have God to support me But i am still scared! well i guess that is all.. I just wanted to vent a little. a words of inspiration would be great! thanks for taking the time to read this! And God bless!

 

[Ms. Pie]

Re: My dady Has ALS and I am Terrified!

I can understand why you'd be nervous and emotional. But you'll be glad you went. Show him how much you love him. be strong for him so he can be strong for you. God's comfort and strength to you.

 

[TedH5]

Re: My dady Has ALS and I am Terrified!

Sorry for your situation. I know this is hard for you to deal with but I implore you to spend quality time with your Dad when you can and also focus on and cherish what you have had and still have rather then what you may be missing now or in the future.nnDo not allow the uncertainty of the future to deny you from happiness now and reliving the memories you have already created.

 

[missmineau]

Kolonie, sorry to hear about your dad. My mom was diagnosed in October 2010, and it has changed my families lives forever. You have come to the right place to find support, information and love. This forum has given me strength. People here understand, and I know for me, thats huge. Spend time with your dad, its comforting just to have someone near. As hard as it seems focus on the good, on making memories, none of us are promised tomorrow. I hope you can find comfort and peace. Its not an easy journey, but none of us are alone on it.

 

[jessielf]

Hi Kolonie, my mom got diagnosed w ALS last Aug. It has been so hard during the past months. Sorry that you have to go through this too. My kids are close to my mom and it breaks my heart that she can't do the things that she could a yr ago. I live only 45 mins away from my mom but it is always so hard going to visit her since I don't know how she is feeling. I have been depending alot on God to get me through this for my mom. I wish it would get easier but it doesn't. Put your trust in God and he will get you through visiting your daddy. I hope you will be able to make good memories even though he may not be able to do much. Will be praying and thinking of you!

 

[odiva]

Kolonie, remember that your Dad is still the same person inside. His abilities have changed, but he loves you the same. Trust that God will help you through. Have fun and make good memories.

 

[Mpiresteve]

Very sorry to hear about your dad. My dad was diagnosed a week after I graduated high school. Being the youngest of 4 boys, it was very hard on me. There are many things I wish I would have done before my dad had passed away. One of them, is I wish I was stronger. Because I wasn't, I found it very hard to be around my dad while he was on his death bed. Please be strong and try to spend as much personal time with your father when you go see him.

I remember when the final day my dad was alive. He was in acoma and they were going to pull the plug. I finally found the nerve to go up to him and talk to him before they pulled the plug. As I was talking to him, I swear I saw tears.

Be strong!

 

[tammyg]

I am so sorry you have to be here. I know how you feel from another "Daddy's LIl girl" and only child. It's like a lump in my throat that will never go away. Don't be scared, just give him gentle hugs. No words are needed. My dad had this machine that talked for him. I am not computer savy but seeing him, and him seeing you is what he needs. Even if it is via internet. good luck and we are all here for you 24/7 Sorry you had to find us but you now have a new family that is here no matter what, answers to your questions, if you need to vent the people on this site totally understand where you are coming from without judging, just supporting. they rock

 

[DaddysLittleGirl]

Thank you all so much for your words ! I really appreciate it! :smile: It made my heart soar when i read each and everyone. It is very nice to find people who are going through the same thing i am going for. My dad also has a machine that talks for him. So I still get to hear what he wants to say. I am very blessed that i am getting a chance to go and visit him. I am going to take complete advantage of being able to see him and i can wait! I already told him that him and are are going to do everything that we have never got to see.. I am trying to talk him into going to sea world when i am there since it is pretty close to where he is. He always talked about taking up when we were kids but we never got the chance to go so now i am going to try to take him. I pray daily for him to be strong through this . It is very hard for him he is very depressed. He is going through a divorce right now. He married this women right after he was diagnosed with ALS and the women he married knew what he had and knew the trials that were going to come with it. After a while of course it started to get worse and she couldn't handle it any more and she went off to have an affair he found out the hard way and ever since then he has been really depressed terrified that he is going to die alone. i told him time and time again just because she is gone he is NEVER going to be alone even though i am not very close he still has me and his sister that lives close to him and she now takes care of him along with his mother. It breaks my heart that this women would do this to my dad. I never met her and now more than anything i want to meet her and ... well you know give her a piece of mind! ... I just don't understand how she could have done this to my dad she married him knowing that he was dying and when it started to get bad she just looked the other way and ran into another mans arms that could give her the sexual pleasure that my father couldn't! I pray that he will find the strength to forgive her and not be angry with her I don't want my dad to have this kind of stuff on him at this time or ever! I prey that his heart will heal so he can continue living his life with happiness with out the depression.

 

[SixthKid]

Oh Kolonie big >>>>HUGS<<<< to you! I am so sorry for what you are going thru, the mixed up emotions. I would stick to the excitement you feel about going to visit during spring break! When your Dad sees you & how excited you are to see him, that would bring such joy to him I am sure! :grin:

I know it is hard tho, My dad was diagnosed a year ago this month. My emotions fall along the way of feeling hopeless when I see him. Hopeless as I don't know what to do when around him to help him. Sometimes I think just being there visiting makes him happy. Yesterday I fed him 2 spoonfulls of chili to him & I was like "yes I am helping him" and then I thought is this really what it has come down to I'm feeding my Daddy? It is just so sad. It is the little things you have to rely on now and yes it sucks but you have to do it. Otherwise, sooner or later (& hopefully it is waaaaay later!) when your Dad is gone you don't want to say "what if I did this or that?"
I know it is hard I struggle with my emotions sometimes. Just remember as much as you hate seeing him affected by this disease I'm sure he is wishing 1000% he didn't have it, no one wants to be in this position.
Be brave! I know you can do it! You have a lot of support here!

 

[mikeb1]

Being on the other end as a person with als I want my kids to understand all aspects of my life and things i have to go through so they might help others in their trying times not just als but other situations. I feel bad for them but I tell them to enjoy life as if it was your last day. The thing that makes me enjoy life is my kids and I don't ever want them not to see me as your dad is too waiting to see you. Don't look at all the bad that als has to offer but just look at it that you are spending time with you dad and and thats all that matters. As a parrent we love our kids unconditionaly well that goes both ways. the love you have for your dad will help you overcome all your fears.
Enjoy your visit and visit as much as you can.
All my wishes
Mike B

 

[hangingon1]

Just show as much love to your Dad as possible. He may not be able to respond as before, but he will feel it.