23 year old son

[ko17]

Hello, this is my first post on here, I have been looking through some past threads and already feel better knowing there is so much support and info out there. Everyone here is so supportive and you can really feel the love coming from people who have been through or are going through this themselves.

My dad was diagnosed Jan 09, it started in his hands, moved through his arms, into his neck and shoulder muscles and has slowly moved elsewhere.

He has no movement in his arms or hands at all, can still talk some although it is changing and becoming slurred, and can walk a short distance to the rest room, but is extremely out of breathe when he sits back in his chair. The smallest tasks make him so out of breathe that he has terrible anxiety. I cannot imagine what it would feel like to be constantly short of breathe, and being scared all the time that he eventually will not be able to "catch it". His breathing is is becoming much more difficult and we have the bi pap machine but he cannot wear the mask comfortably because he says it makes him feel claustorphobic and gives him more anxiety.

This anxiety is fairly new, started around June of 10, and is making his quality of life decrease tremendously. It is so hard to watch my dad go through this, and is hard to deal with the overwhelming amounts of thoughts that race through my mind every minute of every day.

He recently had the PEG tube put in place and has responded well (stomach accepts it through use of Boulis system) to the almost six cans of ensure he recieves each day.

I am trying to finish up school, I have one quarter of school away from home left, and am having some anxiety myself about leaving again this fall. I go to school 2 1/2 hours away and cannot stop thinking about how I will be able to be away from my dad. I have been such an integral part of his everyday, and he relies on me to help " calm and comfort him" when my mom becomes frustrated and needs "time away".

I would like to have some sort of timeline, but from what I have gathered on these boards is that each person is different, and it is hard to give predictions. Even still, I would like to hear some sort of ball park, or at least know some of the tell tale signs, so that when/ if I have to decide to leave school and my job there, my family and I will know what to look for, and decide when its time.

He is suffering from terrible itching, I read some of the itching threads and plan on discussing neurontin with my mom tonight. We constantly are brushing his hair, scratching his back, legs, arms, etc. and it becomes very taxing on both my mom and I (almost equally taxing is the guilt felt by wanting to refuse to scratch him).

We have a home health care person who helps in the mornings while my mom and I work, and have great "social" support from church members, and friends of his, but the burden of all things non social related falls on my mom, sister and I.

Hospice is going to start coming shortly, though I am not 100% sure what they will be doing at our house. Does this mean the end is in sight? The thought of him not being here within the next couple of months seems way too soon, but he also seems ready, as he is miserable most of the days. This stuff is so scary, and im certain it will get worse than it already is.

I know this is long, and I am a newbie, but I wanted to share my experiences and seek some advice/support, or a semi timeline if anyone has experienced similar things with ALS. Thank you

-Kyle

 

[joelc]

Hi Kyle, I am very sorry about your dad. I wish I could give you some time lines but that is impossible. Will he consider a power wheelchair? What about a trache and vent? I have been using both for years and they gave me my life back. I wish you well!

 

[ko17]

Hi Kyle, I am very sorry about your dad. I wish I could give you some time lines but that is impossible. Will he consider a power wheelchair? What about a trache and vent? I have been using both for years and they gave me my life back. I wish you well!

Thank you for your condolences, and my thoughts are with you as you go though your journey with ALS as well. We have the power chair, we are trying to find a van with a lift that does not cost 50,000 dollars, and we have a transport chair that we can take him to the bathroom in, but he refuses and wants to walk. But as far as the trache and vent, he orginally was agaisnt it, and hasnt brought it up since that conversation almost two years ago. He filled out a DNR along with his will, etc. which leads me to believe he will be agaisnt a trache, but perhaps we are thinking of a trache as a life preserver that he will have trouble getting off of, and not as a life enhancer, how did it effect you? did it make breathing drastically easier? thanks

 

[joelc]

It was a life saver to me, a life enhancer for sure. You don't even notice it, your breathing is undistinguishable from normal breathing. It is marvelous.

Vent Life

To vent or not

My journey

If you go to the Content Index on our website there are lots more pages to read.

 

[Katie C]

Kyle... make sure your advisor at school knows what is going on. My son and his advisor sat down and had a long talk and came up with a plan. He was able to take a leave of absence from school, and has been taking some community college classes to make sure he has all his elective units covered. Now that his dad has passed, he'll probably return to USF spring or fall of next year to finish up his degree. This is what worked for us. You and your advisor can come up with a plan for what can work for you. Good luck.. Take care.

 

[brooksea]

You have been very eloquent in expressing your desire to be with you dad. I admire you greatly! I would check with your school, as Katie suggested.

Bless your soul! I hope my son grows up to be as empathetic as you!

 

[ko17]

Kyle... make sure your advisor at school knows what is going on. My son and his advisor sat down and had a long talk and came up with a plan. He was able to take a leave of absence from school, and has been taking some community college classes to make sure he has all his elective units covered. Now that his dad has passed, he'll probably return to USF spring or fall of next year to finish up his degree. This is what worked for us. You and your advisor can come up with a plan for what can work for you. Good luck.. Take care.

Thank you for the advice. I have spoke with my advisor, as well as my department head and have discussed my options as far as taking some classes at a college here in Cincinnati where my family lives. I have two quarters worth of school to take, but only one of those quarters needs to be at my university (my major classes). The other quarter are some general requirements and I should have no problem getting them to transfer from UC or a community college here.

My only problem that I can forsee would be a graduation requirement that says a certain number of hours at the end of my college career must be taken on the main campus, but, there is an appeal process, and I feel that my situation would be considered something that would successfully appeal that rule.

Sitting down face to face with my advisor might still be a good idea however, all of my conversations about my dad etc have been via email, a talk in person might do me some good, so thank you for that insight.

 

[ko17]

You have been very eloquent in expressing your desire to be with you dad. I admire you greatly! I would check with your school, as Katie suggested.

Bless your soul! I hope my son grows up to be as empathetic as you!

Thank you so much for the kind words, any small amount of encouragement can go a long way I am finding out. I hope your son grows to be empathetic as well, but it is hard sometimes to remember we are still human, and still have human flaws like anyone else going through ALS or not. For me, I cannot imagine feeling any other way but empathetic towards my dad as he goes through this. I mentioned it earlier but one of the things you dont think about in the beginning, is how guilty you can make yourself feel for having impatient, annoyed thoughts. ALS is such a mixture of internal and external battles...

 

[alku]

Kyle, I know how you feel... my dad was recently diagnosed and I wonder why my dad? What did he do in his life to deserve this? Alot of people tell me to pray but I wonder if that will help.... why would god do this to my dad.... Have to run but do keep in touch.

Alysha

 

[ko17]

Thanks again for all the comments and support, today at lunch I heard from my mom who had just been at the VA doctor's appointment with my dad, this is our main physician who handles almost all of the VA patients who have ALS in the Cincinnati area. She asked lots of questions, including one about neurontin, the doctor had not heard of prescribing it for itching, but said "ah, that makes perfect sense" when she brought it up.

She also asked for a big picture idea, she said he did not hesitate and was not vague, when he said two months in his opinion. This is much shorter than what we had in our heads, and much shorter than what I was basing a lot of my descions reagrding school and work around. I am shocked and geniunely lost on what to do regarding me going back to school for a quarter, at a campus that is 2/12 hrs away. Are these predictions accurate enough to base big desicions around? If he does only have 2 months how can I expect myself to focus on work and school, and will I regret not being home more for the couple of months he has left? This is very saddening, we knew it wasnt going to be a long period of time, but it hurts when it is shorter.

 

[Al]

Even though the doc says 2 months, that's still a guesstimate. If his breathing is bad and he's not using the Bipap at night then that may be what the doc is using for his estimate. It's a tough decision for you to make whether to go home now. Have you talked with your mom and dad? My son lives 12,000 miles away. I told him to stay where he is. Him being here wouldn't change the outcome much anyway. Talk with your parents.

AL.

 

[Katie C]

Kyle.. not to sound like a broken record, but I really think you need to speak with your advisor.. not by e-mail but an actual conversation. If you can't make it to campus maybe you can set a time to talk by phone. Be honest about your feelings.. you sound very concerned that your head is going to be with your dad, not on your studies. If the time is really that short you may be right that you'll be even more distracted. On the other hand, you'd be able to text, e-mail and talk with your folks daily. I'd say think about what you'd be doing... would you spend the time with your dad making memories that could last a lifetime? (Glen's neuro suggested he and Kevin write down stories of things they did together.. sadly Glen's dementia progressed so fast that wasn't an option.) Or would you just be feeling helpless and resent not being at school? Either set of feelings is perfectly legitimate. Only you can answer. Your advisor can help you make good choices regarding school. I will say Kevin seems to have no regrets having taken the leave of absence and not that his dad is gone, he'll start looking at building his own future.

Good luck and please keep in touch with us!

 

[ko17]

I havent updated this post in a while, but i really do appreciate all the support and advice i received so i figured id give an update...

Last time i wrote i was unsure what i was going to do regarding going back to school vs being with my dad, what i ended up doing was going to school monday-thurs and then coming home thrusday at 3pm,through monday morning as i didnt have class until 1pm. I did this for about 2 weeks when we gotan updated timeline from my dad's primary doctor, saying that she thought my dad between days- two weeks left to live. When my mom called to let me know this i decided it was time to come home and be with my dad and family, and withdrew from classes

I was home on tues 9/28, and my dad passed on 10/2, two saturdays ago. It was a very peaceful passing, and we were able to talk to him for the last time and say goodbye before he started comfort care meds that put him to sleep. He was asleep for about 18 hours, un able to re gain consciosness due to his CO2 levels increasing is what i have gathered...

it has only been two weeks and it is still setting in that he is actually gone...this is easily the hardest thing i have ever dealt with, and frustration is not a strong enough word...i am trying as hard as i can to not become bitter or angry, because throughout this whole terrible disease my father did not once become angry or blame god, or anyone else. He saw it as a chance to witness to others that even though this life can take all of your physical abilities away, only you can determine your spirit...it was truly inspiring to watch my dad fight this disease with such grace...he was so strong for being able to go through this life's "social norms" (talking and joking with people that came to visit) while being air hungry and not knowing which one of these struggles to breathe would be his last. Thankfully, as i stated earlier, he did not struggle at the end, and the hospice nurses did a great job educating my family and i on how administer meds to keep him comfortable...

I know this is long, but i wanted to share this for a couple of reasons, one was to thank you guys for reading and responding to my first posts, and the other was for myself, it feels somewhat "good" to talk about it with people who have been through, or are going through a journey with ALS...Hopefully someone will read this and take away something from it, they're are a lot of un knowns that i had going into the final stages of ALS and i would be happy to give more insight with my experience if someone wanted to ask a question, thanks again guys

-Kyle

 

[hopingforcure]

Kyle thank you so much for sharing, you have done my heart good. My son is also Kyle, I am proud that he shares a name with such a fine young man. You were a loving and amazing son, your dad lives on through you, go out and do amazing things. I think you presence here is an important one, you will be of great benefit to many, visit us when you can, we are proud of you. Bless you family, you dad has already affected my heart through you.

 

[Katie C]

Oh Kyle, I'm so sorry for your loss. Thank you so much for updating. I'm very glad you were able to be with your dad. There are going to be times when you DO feel angry, or bitter, or confused, or lots of other things all jumbled together, it's part of the grieving process. Find trusted friends you can talk to.. come here and talk to us.. don't be embarassed to get some counselling if you need it. Hang in there, let yourself feel the feelings, and take the time you need to heal. You're obviously a fine young man that I'm sure your dad is very proud of!