sorry I wasn't here last night. In our case, what happened was one day we weren't supervising diligently enough I guess, so I woke up at 4 am one morning to hear Glen choking. Even though we thought we had carefully cleared out all the dangerous food items in the house, he'd found an apple. Several days later he developed pneumonia and died within 24 hours. The hospice nurses had him on morphine and atavan to keep him comfortable, he was in his recliner there because he couldn't breathe laying flat, and he simply stopped breathing. We had decided in advance there would be no agressive treatment of pneumonia, and he had been insistent on no peg or trach, so the kindest (and hardest) thing to do was to let him go.
As with everything in the ALS/FTD combo each case is so totally different. The biggest difference I think when you add in the FTD is that compliance is lower so there are more things that can go wrong, and more questions of "are we keeping him alive for him or us."
I'm actually wondering the same thing. Things are getting rough over here. We don't have the normal weight loss and such. As a matter of fact, I can't keep the food away from him, no matter how much he chokes and sputters, he just keeps forking it in. I have to gently take the fork from him and announce that we are "taking a break." Breathing is getting incredibly noisy at night and he makes these really loud and wet "ffffffffffffffffff" noises for 10, 20 minutes at a time. No one can tell me what we are doing, and its scary!
Is this at all what you are experiencing?
I do have to say, put on any game with a ball, and he is happy as a clam! I really am very grateful for his sweet and content nature.
Katie C`s husband contracted aspiration pnuemonia because he found an apple hidden
in the fridge. He also had no concept of eating causing choking. Cubcake, be very aware of his eating. The PALS with FTD that are still mobile are very much at risk of an accident causing death.
sadiemae is absolutely correct. Aspiration pnuemonia is more serious, because the bacteria from food particles in the lungs, is more harmful than "regular" pnuemonia. FTD PALS are more likely to choke, and to suffer life endangering falls. Their concept of dangerous behaviors, and the consequences is just not there--there' no connection. Due to impulsivity and lack of inhibition, it can be extremely difficult for CALS to be on top of everything 100% of the time.
PALS with FTD--I believe--pass away due to many of the the same issues all PALS do. Signs/symptoms, that you may be nearing the end, are on the internet. They are very helpful. You can also do a search here on the forums, as it has been discussed before.
Feel free to PM me. I'd be willing to share my mom's end of life experience.
Thanks for the advice. You are very right. He eats nothing unless I'm sitting right next to him. I also have baby monitors everywhere because I can't even change the laundry without him trying to move about on his own, something he hasn't been able to do for a few months, now. It's frustrating, exhausting and scary. When I catch him in the act of some foolish thing, he just laughs in my face. This stinks!
I'm not sure any of us has answered the original question. She's worried about what the end of Bulbar ALS with FTD looks like.
oh shelly I remember that phase. Not fun. I once told our hospice nurse that it was like having a 6 foot tall toddler. The worst was the day I just HAD to pee. By the time I got out of the bathroom he'd gotten the front door open and wandered off.
I guess the textbook answer to the original question would be that barring extenuating circumstances, death would be by CO2 buildup, with increasing sleepiness leading to eventual death. When aided by hospice "comfort package" of morphine/atavan it should be a relatively peaceful passing. The problem is that the PALS/FTD patient finds so very many other things to get in to.
As to the original question, my mom, who had bulbar onset, passed from respiratory failure. Most likely due to the diaphragm giving out, and co2 build up. When your PALS gets to this stage, DO NOT ever allow them to be flat on their back. It can cause respiratory arrest (suffocation).
My Mom passed away on the evening of Decemeber 5th, with close friends and family by her side. She did not show signs of distress due to the large amounts of meds she was given, but it was respiratory failure due to ALS that ultimately took her. I held her hand and told her how much I love her and asked her to let go and not worry about us. I know she is smiling down on us now and is ALS free. Thank you all for your support and kind words.