Status
Not open for further replies.

Steele

Member
Joined
Apr 26, 2017
Messages
14
Reason
CALS
Diagnosis
04/2017
Country
CA
State
Saskatchewan
City
Saskatoon
My Dad is now at the stage that he is having trouble swallowing. He can still walk and talk (minimally) but his main issues are with breathing and now swallowing. He has declined the feeding tube twice, last time was in August when he went to the appointment for the tube surgery and an hour in, he bailed. He is now far past the point of the tube being an option.

So. Now he needs his pills crushed up and mixed into apple sauce and sometimes isnt able to eat even mashed potatoes. What is the best consistency? Pudding, apple sauce, runny mashed potatoes, smoothly blended soups? What about oatmeal? Would cream of wheat be better? Are small bits like rice or oatmeal a choking hazard? I guess it's all a choking hazard at this point... any tips and advice is greatly appreciated as always. Thanks you guys.
 
We fed my wife applesauce and Coca Cola in her final weeks. Crushed her meds and mixed them in applesauce.

Eventually, nothing was possible by mouth--she couldn't swallow, so even a drop of water would go down the wrong way. We just kept her mouth moist and ensured there was a proper amount of moisture in the air machine.

She insisted, since Day One, that she did not want any tubes of any sort, not even a drip to keep her hydrated.

She controlled the manner of her dying from start of diagnosis to the very end.
 
Thanks you guys. He was initially slated for a PEG then it was the RIG he was scheduled for in August. When I talked to the Clinic a few weeks ago, they said neither was an option anymore and reminded me Dad had declined twice before. So maybe that's why they just shut down the question, more to support his decision. Problem is that now he is starting to understand the severity of the situation and wants a tube now. Says he's scared all the time. Thanks for the link - i will get in touch with the clinic again.
 
You can also dissolve pills in warm water and drop into juice. In addition to applesauce, you can crush pills into or feed pre-made puddings (in the dairy section), yogurt with no bits, even smooth soups.

To avoid: oatmeal, cereals, corn, peas, beans, fruits with seeds like strawberries, rice, anything with kernels, fibers, skins, seeds, uneven thickness.

You can put foods into a high-power blender. I would not use mashed potatoes unless they are completely smooth and the right consistency, with lots of butter.

If your dad wants to consider the tube, there is no particular lung function level that precludes that any more. He can use BiPAP during the procedure in radiology (the RIG you mentioned). You might talk frankly with him and see if he wants you (sincerely) to pursue a team that will work with him. It might require travel and that's a big commitment, but if he's still walking and talking, very possible. You might also forward the team literature showing that very low FVCs can withstand a RIG if done properly. Maybe as you say they think they are supporting his last decision, but those change. And that's his right.

Or maybe he's wavering because his prognosis (death) is now staring him closer, but really still doesn't want the tube.

I think I'm saying your role here is to reduce his suffering, not to make his team happy or even you happy, per se. I get the feeling that you may have things unsaid. This would be a good time to listen, to address whatever his worst fears are, and to determine what his most durable wishes really are.

Best,
Laurie
 
my daughter did not want a peg or a ventilator. Unfortunately, her ability to swallow went a lot faster than we anticipated. She realized she was kinda stuck so she was hospitalized with pneumonia and had a peg put in after a couple of days. She was past the really good time to get a peg. She did it strictly for hydration and drugs. She didn't tolerate the liquid food well but we were able to give her liquids and keep her as comfortable as possible by being able to give her drugs through the peg. I would see if you can find out if those are the kind of results your dad is looking for and, if so, try to get the doctor to explain your options.
 
I am going to give you a different perspective. My wife too has rejected the tube plus any and all devices for breathing, coughing, etc. She started with symptoms when she was in her sixties and feels that age is the determining factor and wants to die in her own way. It is now nine years later and has been told by several neurologists that she needed the tube. Four years ago she lost the ability to speak and had difficulties swallowing. She is confined to a wheelchair and has lost the use of her primary right hand an has limited use of her left. Her ability to communicate is very limited, again by her own choice by not using any communication devices. She is one tough and stubborn lady.

I am telling you this history to let you know what her diet is and that it again it is her choice. She would rather eat what she enjoys and suffer through it and cough and aspirate than to just be kept alive. Her breakfast consists of fresh fruit, chopped very finely, high fiber oatmeal, cheese and small pieces of bread and very hot cafe latte. Lunch is a yogurt and a real creamy cake. Dinner starts with mashed avocado and then fish cut finely with mashed potatoes and applesauce. All her meds are given to her with pudding, she prefers snack packs. Most of the time she is gagging and coughing while she eats and afterwards, but again this is her choice. I realize that some of these foods are bad for her and will eventually cause aspiration pneumonia, but again she is living, and dying, her way. I just wanted to point out that, like ALS, every situation and PALS is different.

I don't necessarily agree with her choices, but it is our PALS right to make them as long as they are cognitively able to do so.
 
Thank you very much for these perspectives and suggestions and insights. I agree that there are things unsaid and now is the time for even more frank discussions. I really appreciate you all taking the time to reply and help us out. You continually make this terrible journey less lonely.
 
I was dumb enough to delay the PEG a year after I should have gotten it. Now I would keep it even if I was cured of ALS.
 
Status
Not open for further replies.
Back
Top