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AKH 3612

New member
Joined
Oct 17, 2012
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4
Reason
Loved one DX
Country
US
State
NC
City
Rougemont
Hi, I could use some advice and tips.
My dad was diagnosed in March with ALS. He is to the point where his speech is very slurred and hard to understand, especially to outsiders. He gets choked easily on liquids and certain foods. And my family and I have noticed signs of dementia (I don’t’ think we can leave him by his self during the day for much longer).
I went with him and my mom to the doctor the other day and we were told he has Bulbar ALS. They brought up the topic of having a feeding tube or peg put in. My dad adamantly told them that he did not want any holes put in him, but I am not sure his mind was in the right state for making decisions. Also, his respiratory scores went down from 79% to 54% so the therapist told him he needed to start using a PAP machine. This news turned his mood completely upside down. I don’t know if it was the low respiratory scores and the need for a machine, the thought of a feeding tube (peg?), or if it was a side effect of the Bulbar, but he was in tears by the time we left the doctors. I have never seen my dad cry like he did when we were leaving.
I know my family and I are not the only ones going through this and that things could be a lot worse, but I guess I am feeling a little over whelmed by all of this. There are so many things that I don’t know about. I’m not sure if I should keep bringing up the feeding tube (peg?) or if I should just drop the topic. I also need to know how to go about getting power of attorney? Is there an inexpensive way? Should my mom have the house/cars/ all of it put into her name?
My family and I would greatly appreciate any advice or tips that we could get at this point.
 
Welcome AKH! We understand the overwhelmed and what do I do feelings! Lots of great people here to help you! My husband didn't want to hear about the peg but has one now... Uses a BiPap, his iPhone with "speak it" to talk. Ate lots of soups and puréed foods when he could still eat...your dad needs lots of calories but its going to take longer to get them in him so calories have to count... Shakes with ice cream and whole milk, olive/coconut oil in food...
There are meds to manage the dementia and get all the legal things done soon! Medical power of attorney, wills, trusts...
Get a notebook to keep track of everything and is he a veteran? If so contact paralyzed vets to help you navigate the VA...
Come to tea is a thread in other if you need a break!

Jen
 
When my husband found out he cried and cried. We all did. And still do on occasion. When new things slap us in the face. Everything they talk about on here I talk to my husband about. He has his b pap ordered. The doctor was telling him about it..trying to talk him into it..but he didn't need to be talked into because of the wonderful people on this site..even though he doesn't read it..they taught him through me. Read...read...and read some more.
 
Sorry about your dad's diagnosis. About power of attorney, etc, it is best to get a lawyer to set up a living trust and put all your parents' assets, house, cars, investments, etc. with your dad and mom as trustees. In that process he/she can draw up a durable power of attorney and advance directive also. I think the cost will be something like in the $500 - $1000 range. If he has retirement accounts from previous employers, roll them over to a roll-over IRA.
 
If your dad will tilt his head down a little before each drink or bit it will stop a lot of the choking
 
There's just so darn much to learn about dealing with ALS!

It's frustrating to have to rely on machines, gadgets, tubes etc.

Many Bulbar PALS take Neu Dex ta for emotional lability. If the crying and/or laughter seem out of control or inappropriate, ask the doc about this med.

Many gastro enter ologists don't like to place a PEG once the FVC gets much below 50. Fewer concerns with recovery and breathing the earlier it is done.

The BiPap has helped cut out frequent trips to pee during the night. It also helps with some of my fatigue. It's less tiring to eat if I use the BiPap for 30 minutes before meals.

There's lots of info here in our archives on a variety of topics. If you have questions, just ask and someone will probably have had some experience with it. You're not alone!
 
Thanks everyone for the advice and support! I know his BiPap has been ordered and that he just started on Neu Dexta. I guess the next step is to find a good lawyer and set up power of attorney. I'll try to talk to him again in a few days about the PEG. Definitely glad I found this forum, I've been on it almost nonstop since yesterday. Thanks again!
 
It has been a lifeline for many of us.

When the RT comes out to set up the BiPap, make sure that he tries out a variety of masks or nasal pillows to ensure a good fit. Fit is so critical for compliance . You can find photos of various masks on line. Many of us start out with juSt a few hours during the day while we nap or watch TV. The nasal pillows allow me to wear my glasses so that I can read.
I also received heated tubing so that "rain out" isn't a problem.

Good luck, let us know how we can help.
 
Hi Akh, sorry to meet you through here...my mom is 73 she was diagnosed with Bulbar Als in Sept 2011, i too like you was devastaded, my mom is the world to me, she was independent and did everything for everyone else that needed help. She no longer speaks at all, she had the peg tube put in on September 4 (herbday), best thing we did, she had no choice, at first she was exactly like your dad, but when you get to the point that you can not have any food or anything to drink, you eventually know u have to get the peg...now i feed her through the peg and she is getting all the nutrients she needs, thats very important. She also has FTD, which is like dementia (to top it off), so its just sooo frustrating, she cant speak and she cant write either due to the ftd, she writes letters and numbers that dont make any sense and when i show it to her, she will look in amaze like "I wrote that ?" so its very depressing, no one is ready for this ****** disease ! the only good thing i see of this disease, is that it wakes you up, what other people that dont have people they love with ALS, much of the time take things for granted, after this diagnosis i tell my mom everyday what a wonderfull mom she has been, how much i love her, and thank her for all she has been in my life...at least we have a heads up...you have to keep the faith ! be strong for your dad, always tell him he wont be alone in this...you can always be there to help him...
Be strong !
Amy
 
Quick starter course:

Choking on liquids: There is a product called Thickit that can be used to thicken any liquid from water to.. well.. Glen used it in his beer. It doesn't change the flavor but changes the consistency to something more easily handled. It's available on line or from places like Walgreen's or CVS

Choking on solids: When cutting things up into teensy pieces no longer does it, a good heavy duty blender and creams and gravies will be your best friends. One of my go to foods for Glen was the frozen pot pie. It comes with its own gravy so all I had to do was scoop it into the blender and whirr it up. Pastas blend up easily too. With a little practice and creativity you can even puree pizza!

PEG, BiPap etc when FTD is present: IF the person is that adamant about not wanting it, there is no way to actually convince the FTD patient of the value because the executive function part of the brain is no longer working. You can try, but be aware that compliance is going to be an issue and at some point you will need to choose your battles. For example I thought Glen was using his bipap at night.. took a while to realize that he was taking it off the moment I left the room

Legal documents: I agree that a trust will make your mom's life SO much easier! If money is an issue contact your local Legal Aid or Bar Association to find a qualified estate attorney to walk you through it all. The sooner the better. The attorney will know which documents your state requires for your mom to be able to make health and financial decisions.

Good luck... hang in there.... take a deep breath and repeat the mantra "It is what it is"
 
I am still learning about ALS. It is a daily trial. I can offer this up, everyone needs to know that if the affected person was in the military, they qualify for service connected disability. My husband is a Vietnam vet, and recieved 100% service connected disability. It is a lifeline for us, financialy, and medically.
 
Hey, I just wanted to say thanks again and to give a quick update. We are currently in the process of going through all the consultations to get the PEG and a diaphragm pacer, surgery is tentatively scheduled for December 13th. The people who are supposed to be sending us his bipap machine seem to be dragging their feet (they have done an initial consult but nothing more). Mom has already taken care of all the paper work for power of attorney and the NewDexta that he was prescribed has been working wonders! Dad’s speech has gotten bad enough to where I can’t even understand him most of the time (totally expected that), but he does not want to use the new ipad we bought him for anything other than playing games (silly stubborn old man, gotta love him!). Thanks again for all the wonderful advice and for making me feel like this isn’t the end of the world!
 
Hey, I just wanted to say thanks again and to give a quick update. We are currently in the process of going through all the consultations to get the PEG and a diaphragm pacer, surgery is tentatively scheduled for December 13th. The people who are supposed to be sending us his bipap machine seem to be dragging their feet (they have done an initial consult but nothing more). Mom has already taken care of all the paper work for power of attorney and the NewDexta that he was prescribed has been working wonders! Dad’s speech has gotten bad enough to where I can’t even understand him most of the time (totally expected that), but he does not want to use the new ipad we bought him for anything other than playing games (silly stubborn old man, gotta love him!). Thanks again for all the wonderful advice and for making me feel like this isn’t the end of the world!
 
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