Status
Not open for further replies.

tripete

Very helpful member
Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Tillie nailed it as usual: "since no choice can possibly result in a cure". So it comes down to how we want to go forward. I do not wish to cause any more pain or suffering to my family then I have to, and yet each day I see my wife suffer as she has to take care of me. We discuss our options the best we can and go forward. She loves and respects my character as I do hers. She keeps trying every crazy thing that she can to try and cure me because she know that none of the "standard" treatments do. While it is very hard for her to watch me suffer she does understand that I am coping the only way I know how. I think that trying to have this understanding is the best that any caregiver can do.
 

tripete

Very helpful member
Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
One more thing about the cough assist machine. We have tried multiple setting but when I try and use it, it causes the muscle in my chest to hurt for days afterwards. It feels like a battering ram has caved in my chest.
 

NotMyDad

Active member
Joined
Sep 1, 2016
Messages
70
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
VA
City
Woodbridge
Thank you all, so much, for your input on this and for your kind words, I so much appreciate it!
Herdaughter - thank you for sharing about your Mom!
I'll let you know how it goes with my dad.

Right now, he says no to his doctor. He told us he is afraid of becoming disabled with the peg.... which is interesting to 'the rational side of me' - because i think he'd be less disabled with it than without (he spends his whole time every day eating ... it takes so much time, that after doctor's visits, and the time he needs to take naps, etc., there is really nothing left for anything else...).

I don't know if I can ask this in the same thread: right now my dad also started to have more and more falling episodes because of his left leg.
The orthopedist told him to wait with an AFO because keeping the leg 'immobilized' will kill it faster. But aren't falls a much worse thing? Again, I don't want to push my opinions on him, but .... you can well guess how worried I am about what may happen with the next fall...
 

NotMyDad

Active member
Joined
Sep 1, 2016
Messages
70
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
VA
City
Woodbridge
One more thing about the cough assist machine. We have tried multiple setting but when I try and use it, it causes the muscle in my chest to hurt for days afterwards. It feels like a battering ram has caved in my chest.

Thank you, Peter! My dad was never able to get any genuine help from the cough assist. In his case, he says it just causes an increased production of mucus...
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,899
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Falls are SO dangerous! He have seen too many PALS die from head injuries.

But other injuries too often just don't heal well at all, and/or hasten progression. He will not 'lose it' faster if he uses equipment and prevents falling. That ortho should be shot for saying such a falsehood :cry:
 

NotMyDad

Active member
Joined
Sep 1, 2016
Messages
70
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
VA
City
Woodbridge
Thanks so much, Tillie.
I emailed my family and I so much hope they'll listen to me on this one.... This is truly crazy...
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,899
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I hope so, I witnessed horrible injuries with my Chris, some of which gave him awful pain the rest of his time on earth :(
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,631
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
just yesterday, for the first time, the reasons for my husband getting a trach soon were explained to me. If we can't slow the mucus, a trach would allow me to do deep suctioning. Right now I suction his mouth, but it's becoming harder and harder for him to bring up the mucus--even with singing the nebulizer and cough assist 4 times a day. Since he currently is a yes for a vent, having the trach in and healed before venting would help with that transition.

The feeding tube is a blessing. I feed him when he 's too tired to eat. I give him a feed overnight so he does not wake up asking for food and so that his blood sugar does not crash overnight, and I give him water every hour overnight because he's not drinking as much during the day. I also give meds through it more and more. Get it early and take good care of it! Per his surgeons instructions, we let soapy water run over it in the shower, wipe with a q tip and cover it with split gauze. That is all. No ointments or creams. The warm water softens the extra tissue that tries to develop around the edges, and I wipe it away with the q tip. When he doesn't get a shower, warm water and q tips do the job. When it gets the slightest bit nasty inside, I put vinegar in it and let it sit for awhile before flushing.

Good luck, and good question!
Becky
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,899
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Becky are you saying you get up every hour through the night to give Matt water through the feeding tube?
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,775
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Not I think I understand your Dads comment about not wanting to be disabled with the tube. He could be saying when he becomes more disabled, the tube might prevent him from going as quickly, so he would live longer and more disabled with it. Does that make sense? However, other than getting hydrated with meds thru it, it won’t extend his life, as generally his breathing would take him before any weight loss would.

Tillie, if Becky is using a pump overnight with Matt’s food, it can do a flush every hour or how many hours you set it, so he'd get his water that way. At least that’s how Brian gets his.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,631
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Oh, I'm sorry I wasn't more clear. I'm using the pump overnight now, and IT gives him water. Oh Lordy...anything to help him not wake me up :)
 
Status
Not open for further replies.
Top