Trach Question

[Ken's Kid]

I am new to the forums although I have been checking in here and there reading as much as I can. Love the site.

My dad was diagnosed with ALS August 2010, bulbar onset. I moved into his home with 2 teenaged daughters in June 2011 to help him out as he progresses with this disease. My mom passed away about a year ago.

He is wanting a trach/vent when the time comes. I am wondering about any input that anyone might give me on this matter. I work at home full-time as a medical transcriptionist so I do have flexibility in my job. I am wondering though, am I kidding myself thinking I can maintain a full-time job and be a full-time caregiver for my dad? I will make it work. I am just wondering what a typical day is like for someone who is caring for a loved one with ALS and a trach. :?:

 

[momap53]

Ken's Kid,
Your Dad is so lucky to have you caring for him. My daughter has moved cross country to care for me as well.
You'll find a wealth of info here on the forums.
JoelC was a good resource for info on the trach. Go to the community section at the top and search for him in the member's list. When you click on his name you'll be taken to an area where you can read his blog and find all the threads he started and a listing of all of his posts. He also had a website which is still active.
You can also plug "trach" into the search engine and that will bring up the related threads.
This should get you started.

 

[sadiemae]

Our ear Joel posted his daily routine here.

https://www.alsforums.com/forum/tips-tricks-gadgets/13211-my-procedures-day.html

https://www.alsforums.com/forum/blogs/joelc/112-home-care-trach-info.html

 

[Ken's Kid]

Thank you both for your response. I wish I had gotten a chance to "know" Joel. I think those are all the answers I could ever hope for!

 

[BarryG]

Dear Ken's Kid, I don't have an answer to your question but wanted to welcome you to the forum and thank you for looking after our Beach Bum.

 

[Ken's Kid]

He's a great guy... the pleasure is mine! Thanks BarryG!

 

[catcaniac]

Ken's Kid, I hope I can shed a little light on the subject as my husband was trach/vent in March of this year. I stayed home as a full time caregiver until August when I went back to work. The trach is pretty demanding when it is new. There is a lot of suctioning until the body gets used to it. Probably for around the first two or three months. I could never have held down a full time job at that time but I am not sure of how debilitated your father is in other ways. My PALS had already progressed to needing full care and completely bedridden. So that would make a big difference if your dad is still mobile. The trach for the past few months has been pretty easy for someone who knows how to care for it. I am sure that if you look in some of my former posts at that time, I explained one of my typical days. It seems you love your dad very much and if you both want to make it work then I am sure it will. From your dad's posts, it seems he has a real zest for life and he should be able to live it as long as possible. Thank you for your willingness to help him and if you have further questions as things go along, just ask. Eric's surgery was done at Duke and I would not recommend them to anyone, just an FYI.

 

[Dave C]

Sounds like ken did a good job as a dad. I have a full time job, my wife has been home on a vent almost two years and I have four year old twins. It is work, we get alot of help from family and pay someone for 9 hours overnight, which isnt cheap, but we make it work. Feel free to pm me any specific trache questions.

 

[joni51]

Your Dad is a sweetheart, and you sound like you have a big heart..Give dad a hug for me...

 

[Ken's Kid]

Thank you all for your responses! In the months that I have been looking at the forums it is obvious how caring everyone is. Dad is an inspiration. I don't think I would have taken his diagnosis so graciously had the shoe been on the other foot. Dave, I think my attitude has kind of been what you are experiencing. "We will make it work" there is no other choice! We will enlist more help as necessary I'm sure. Going through the VA he gets money for that. Every now and then I just have a freak out moment! I can do this though! Thanks for your support all.