Status
Not open for further replies.

one-of-three

New member
Joined
Dec 8, 2010
Messages
2
Country
US
State
Ca
City
La Quinta
hello everybody. ive been lurking the forums a bit for the past few months now. i was hesitant to register but finally got the courage to do it. mostly because i would cry about what i would say or just the thought of writing it down would make me teary eyed. but i needed somewhere to vent with people who actually understand what i am going through. its hard to explain to people and family that, NO, you really dont know...

My name is Ryan, i am from Palm Springs California. i am 21 years old and have 2 younger brothers age 20 and 17. hence the name one of three. and my mom. we have a big family with my dad having 4 brothers and 3 sisters. and my mom 2 brothers and a sister. it is hard on everyone but mostly my brothers and my mom. Our family was basically raised offroading, always out in the desert almost every weekend in dunebuggys, quads and dirtbikes. my dad was basically the un-named camp leader. always leading the rides and being the jokester of the group.

its taken a big tole on my life and made me start to grow up alot faster. helping my mom and brothers take care of my dad along working full time 8-10 hrs a day really brings on the stress. its hard for people to really understand what is going on inside my head and i try to hide it but theres those times where i dont want to do anything but sit in my room think about the good times and cry. i have to let it out. i thank my girlfriend of 4 years for being here for me and knowing alot about whats going on. i always call her when i need to vent and shed some tears.

my dad was diagnosed with als a little over 2 years ago. started out when he was starting to feel tired easier and faster than normal. then the falling, injuries and so on. it was hard to watch my dad, the strongest, smartest, funniest person i know. to go through all of this and try to make an excuse to why all of this was happening. old age? was always the question. but he is only 52yrs old now. so we ruled that out. he was the type of person that held there pride high and refused the cane, walker and wheel chair untill he absolutely needed it. then after all the questioning he saw a doctor and im sure you all know how it goes from there. he is now in a wheel chair only able to move his hand enough to get the chair around, his speech is gone and had a feeding tube put in.

almost 3 months ago we took him to the hospital in the afternoon after he had told us he was having a hard time breathing. they took him in after an hour or 2 in the waiting room and the tests showed he had a small heart attack that did nothing. but they were going to keep him over night. i drove my brothers home late at night because i had work and they had school the next day. i got a call from my mom at 3am. "your dad has coded and is on life support with the breathing machine and 18bags of medication , you need to get here as soon as you can" my aunt picked us up and we had the longest drive of my life. can this really be happening? my dad is gone?..... its been 3 long months in 2 hospitals. he is doing better now, he had the trach put in and is hopefully coming home soon on a ventilator. my mom has been gone most of the time only coming home maybe once or twice every two weeks to pay the bills and take care of business. she is a strong woman and really keeps everything together. all the doctors and nurses always say "youre lucky to have a good wife and these 3 big boys to help out.

well thats my story, thanks for taking the time to read about it and looking forward to talking with everyone and also helping others go through such a hard time.
 
welcome , sorry you are going thur this it really stinks for me it is my son who has a.l.s. so i know the feelings you have my son is falling a lot now he wont give in to the walker so they must be alike as i am sure most are i wouldnt want to either and we are on the other side of the fence saying just use it ... he had trouble breathing before a.l.s. anyways with asthma was always hard to clear up on that part he takes after me i very rearly clear myself and it going to be worse for him now .... well just wanted to welcome you and say hi .
 
So sorry to hear about you Dad. God Bless your family.
Sharon
 
Ryan, I hope that your dad does come home soon, and your family finds your own pattern for caregiving. Your parents are blessed to have you for their son. I wish you all the very best as this plays out. It's good that you posted, and I hope that you will feel support here, even bringing other family members here for sharing. There are moms who are caregivers as well, like your own mother... and there are kids of all ages having to watch their family change. I know that there is a need for you kids--adult or younger--to get in touch with one another. Keep posting, so hopefully you and others connect, and after ten posts, you can PM. Again, thank you, Ryan. God Bless,
Ann
 
I'm very sorry about the turn of events regarding your dad, Ryan! Please hang in there. Sounds like you have a good head on your shoulders and I'm sure both of your parents are very proud of you and your brothers!

Sending all of you hugs!
 
Ryan, I am so sorry life has been so tough for you all! I can relate as I'm a daughter of my dad who was diagnosed with ALS this past July. My dad has 4 daughters to help him, but my word, it's hard to watch it on a regular basis. I will pray for strength as you all go through this.....praying that things will get better!
Stay strong,
Aimee
 
My thoughts are with you. My children are 16 and 19. No question - it is hard, beyond belief for them.
 
Thanks everyone. I do feel the support on the site and seems like a good place to vent from time to time. But we just got news my dad will not be coming home as soon as we thought. We are in a rut right now trying to keep our house so my mom who is unemployed and one of my brothers are having to get a job. It's going to be a little more tough going to see him only on the weekends now as he is in a facility 2hrs away. But thank you all again and all of your families are also in my thoughts
 
So sorry for this development and stress. I hope your mother and brother can get the jobs they need soon... and that you are all able to visit with your Dad.
Ann
 
Hi Ryan. Thanks for posting about your journey. So sorry to hear your dad isn't able to come home just yet, and for your stress. It really is so hard to watch loved ones weaken and to keep it all together on the home front at the same time. For me it's my mom I'm on this road with. I've found this forum incredibly useful and supportive. I hope you will too.
 
Dear Ryan,
I am so sorry to read your story. I will keep your family in my prayers.
They are fortunate to have such a caring son. THe ALS Guadian Angels
may be able to help with financial issues. Does you Dad have a social worker?
I f not, contact the ALS or MDA associations for help and advice. And anytime,
you need to vent or need advice, we are here for you.
Blessings, Pat
 
Dear Ryan, My thoughts, as well as many on this forum, are with you. Take comfort in knowing there is a safe place such as this to come to and have people understand what you are going through. My mom was just recently diagnosed and its been a roller coaster ride, its flipped life as I knew it upside down. I find lots of strength and comfort coming to this forum and reading other peoples stories and knowing I am not alone, I hope you find the same thing here.
 
Status
Not open for further replies.
Back
Top