Finally got here

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FeelingTooFarAway

New member
Joined
Jan 30, 2014
Messages
8
Reason
Loved one DX
Country
US
State
Florida
City
Gainesville
It's been a few years since my dad's diagnosis and there have been plenty of times where I've felt I just can't handle it on my own. But I never felt I could share... or talk to other people with the same disease. I was too scared of what I might hear or see. But it shouldn't have mattered because we see it every day. But I finally got around to it. So hi everyone it's nice to finally meet you.

I wasn't sure where to post so.... yea.
 
I was also hoping if I could just talk? But I'm not sure where to do that.... It's hitting especially hard tonight :/
 
Welcome,

Happy you joined the site because you will receive lots of support. Your thread was relocated from 'rants & raves' to caregivers, so that those in similar circumstances can chime in earlier.

We are, each of us, on a bumpy journey, which makes this forum particularly vital for so many.
 
Welcome FTFA, glad you found the strength to joined us. So at what part of the disease is your father at? Do you live a ways away from him? How can we support you?

Paulette
 
Welcome!

Like Paulette, please do tell us a little about your situation, so we can support you.

I wouldn't survive without this place! My husband has bulbar onset, and is barely mobile and takes a lot of care. I've felt most emotions and still am up and down. Talking to other CALS gives me an enormous lift, even when they are down and ranting. Just to know others feel the same things and struggle the same way ... whew it is such a relief!

Tillie xxx
 
Welcome to the forum - sorry for your need to be here. I help care for my almost 87 year old mom who was diagnosed over a year ago with bulbar onset. When you want to, tell us some more about your dad. This forum has been a great help to me, there are so many caring individuals who will help, share info., and just plain listen to whatever you have to say. I think what helps me the most is knowing that I am not alone.
Take care, Trina
 
This is really long- so I'm sorry..... Theres been a lot going on.

My dad was diagnosed my sophomore year of high school in 2010. I'm in the middle of my freshman year at college. He's lost all mobility in his hands, lots of muscle mass in back and arms. He can't lift heavy spoon fulls anymore. He's finally accepted using his wheel chair but tries to only use it outside the home. He has trouble walking and falls easy. We're at the part where he'll need to decide a feeding tube, a trache, and even something for his lungs soon. He's aspirating food and I don't know what the name is but he's developed something with his throat? The muscles close periodically?

I live 40 minutes from my family but I don't own a car and getting back home is tough because no one can come get me most of the time. I don't get much info on what's going on to be honest... which makes it harder. I'm also not allowed home unless I can completely sterilize or if my area has an outbreak of the flu or cold- cause dad could get sick. My biggest problem is coping and dealing with the people around me... I've recently got news he's been worse than usual and I've been a mess. I miss my family terribly and my younger siblings. I worry for them the most: Ages 6 and 8. My partner has a hard time comforting me and openly admits he doesn't always know what to say; especially if I come home upset. He sometimes thinks I'm angry when I'm just emotional...Explaining to my professors the situation or even new friends always brings this same look like no one knows how to deal with it.... I guess my questions are-

Do people ever treat you weird when they hear about ALS? How do you better present it other than just being flat out honest?

What advice do I give my partner? I'm not even sure what comfort I need. Every little saying hurts- "I'm sorry" "You need to be strong" "It's going to be okay"... sometimes I want to hear it'll be okay but I feel despaired.... like how can it possibly be?

I feel useless.... Is there something, anything I can do? Other than just sit back and go to college?

In reality I feel angry towards him sometimes.... and then guilty. I miss him but we've always found it hard to talk. Even when I come home theres not much to say but I really do care about him so so much.... But it seems like all I do is stress them out... I don't know how to communicate with him well without getting emotional.... what do I do?
 
Well I think you explained your situation very well. I have a 21 year old step-daughter that moved here from Texas to be with her father, and go to college. I know that there are times when she has a hard time dealing with her feelings, and explaining it to her profs. I know that she likes to be hugged, and the women's ministry pastor takes her out occasionally for coffee and to talk. Do you practise a faith, and or go to church? It has been such a blessing to me to have my faith, and I know that our Lord strengthens me.

As far as the difficulty talking with your father, I suggest that you write a letter and tell him how much you love him, mentioning some of the special times that you cherish and remember doing with him. Also I know how important it is to men to feel respected, and that the ones they love are proud of them. Are you and your parents able to Skype? I know it is not the same as being there, but before my husband was able to come to Canada we skyped daily, well actually every minute of the day that we were able to, for over a year.

It is perfectly normal to be angry at him, it is part of mourning the loss of something. Allow yourself to cry, I do mine in the tub. Be kind to yourself and forgive yourself when you feel like you haven't handled something perfectly. If I could I would give you a hug and just let you cry if you need to. You will be in my prayers.

Paulette
 
Welcome. You will find the voices here a reflection of your own concerns. Everyone is very kind all being in the same boat so to speak. I have found this forum not only a great sounding board, but a priceless resource. (Be sure to visit Tips Tricks and Gadgets.) ALS is different for all our Pals. Seems no two cases are exactly alike. Everyone shares the suffering of watching loved ones in the fight for their life. You will find you pals similar aspects with others and the Cals give priceless comfort and suggestions and advice for both of you. I find this board a great source of comfort and it provides me with courage in knowing we are not alone.
Best to you and your father.
 
Hi and welcome to the forum! I so feel for you; I have a daughter your age who is also a freshman in college. are you at UF or Santa Fe? my daughter stayed here in Orlando, but I am an Alumni of UF and my oldest son went there too.

I love the idea of skype or face time with your dad--we do that with our son who lives out of state now. you should do it every week or even more often so you can stay in the loop with what is going on. even if it is a short talk, and try to keep it up beat-- talk about school or your professors or something you are working on. You can cry after you hang up. I think if you are more involved, you wont be so scared...not knowing is bad. and you need to stay strong for your younger siblings. they are seeing and doing things that are too much for them (but it can not be helped). One thing my oldest son did even when he was in college was have his little brother come and visit for a weekend. he was older than your sibs (12), but it gave him a break and helped them grow closer. That little Brother is now one year younger than you. when you go home, take them out to the park or the mall for a fun forget about dad afternoon. that gives them a needed break and your mom and dad too. let them just be kids for the day--they are living in it 24/7. talk to them about their favorite cartoons even if yo don't care about that--be the big sister that loves unconditionally and that will be so important to them.

it is hard when you don't have a car, but I know there is a Greyhound bus station in G'ville. I use to ride it home when I was a student. Not a great option--but it will get you home every month. Also there is a ride board in the Union I think. or do you have any friends from home who have cars? if they are going home you can pay them to take you.

I am not sure how we would arrange this, but I could ask my daughter if she would be willing to talk with you either online or on the phone and be ALS friends she is not on this forum., I will ask her and you let me know If you are interested. you can post visitor message to my page or just respond here. I am on every day.

Oh yes, by the way it is normal to feel angry and sad and scared all at the same time. But it is ok to feel happy too. Look in to counseling as well--I think it is offered for free on campus to students at the health clinic. no shame in it and it can help you sort thru your feelings. your family is going thru a crisis.

I am so sorry you are facing this--hang in there and be strong

Go Gators!

Barbie
 
Sorry that it took me so long to respond. Been pretty busy. I hadn't thought of skype! I could try talking to him about it but he isn't very tech savvy. Hopefully though :) Thank you for the idea!

Mrs. Barbie, I’m currently at UF. Go Gators! As for the friends with car I actually don’t have that many as weird as that sounds and the ones I do have don’t drive. I take the greyhound too when I can. It’s actually not that bad. I’ve been the counseling center here also but when we started meetings the person I was talking with never seemed to want to talk about family even though I mentioned my situation… Generally they focused on my social life and how I was adjusting to campus. It was a little weird. I’m a bit apprehensive to trying it again.

Thank you for the advice though on my brother and sister. How my siblings are doing is something that I worry about a lot. I haven’t really been able to spend time with them lately and sometimes feel at a loss for what to say. I’m hoping I can have them for their spring break to get them away from the house for a while. <3

Honestly I’d love to have a pen pal if your daughter is up for it. Though I’m not really sure what I would say.

To everyone else who has also posted- Thank you again so much. It means a lot to talk with people who really understands what this is all like...
 
Sorry you are having to go through this at such a young age. Know that we are here for you. We will listen and help you anyway we can. This forum has been the best counseling for me and I hope for you also.
 
Is there anyway your parents could help you out with a car? it would be very helpful for you to be able to get home every weekend. next time you are there, you could set up the Skype on his computer for him, and teach him how to use it...oh of course probably your younger sibs could do it too! they are probably very tech savvy!

give the counseling center another chance, but ask for a different counselor. ask for some one with grief counseling experience if possible. that is the closest I could ever get to someone who understands dealing with a terminal illness. I will talk with my daughter and get back with you...

hang in there!
 
Actually the good news is I have 2000 saved up :) My parents don't help out with anything. Not because they don't want to. My mom cried cause she couldn't get me a car but her friend could afford one for her daughter. I try not to ask for money from them unless it's an emergency and I really just don't have it. So hopefully by March a car will be in the picture.
 
Side Question though. I'm actually a guest speaker at my old high school for ALS- my english teacher gives his class Tuesday's with Mori and I wanted to post a new forum to ask CALS and PALS if there was anything they wanted students to know about life and ALS? Where do I put that tho?
 
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