New member, wife diagnosed

[wndshr]

Good Morning All,

I have been a lurker here since last year 07/2021 when my wife was dx with Bulbar. I want to thank all of you who participate on the forum for teaching me about this diagnosis. I am forever grateful for all of your input.

I initially noticed some speech issues back in 05/2021 and we went down many medical rabbit holes until ending up in the Neurologist office where they did the EMG and motor tests. Today she is still fully mobile but her speech is gone (using a boogie board LCD device) and her swallowing in my opinion is terrible, but she assures e she is "fine". She has not lost a lot of weight since last year but I am noticing its harder to keep weight on. She eats all the time and a meal that takes me 5 min to eat takes her an hour.

My wife does not have a life history of seeking medical attention other than routine checkups. It has been tough since I come from a medical family and I am used to the system. Unfortunately, she is very resistant to getting a feeding tube or using anything that will help with saliva management. She agreed to get a feeding tube once she lost a certain amount of weight and/or her breathing function decreases to a point anesthesia. She does have a line in the sand with regard to how far she wants to ride this wave, at which point she says she wants to discontinue feeding tube and go to hospice.

I am stuck. I know I should respect her wishes and I do, but I worry that I am not fighting for her longevity. I feel I don't want to give up but not sure how to meter that with her wishes. She wants to see a holistic doctor too; anybody have experience with that?

Thanks!

 

[Nikki J]

Welcome from the sidelines. Glad you have decided to speak up.

the feeding tube issue is so terribly hard and even people who are comfortable with traditional medicine resist. She will wish she got it sooner. My sister did. All the struggle to eat which is time consuming and exhausting won’t have ti happen. I doubt it will work but remind her she can have it and not use it but it would be there if she had a bad day or was sick and she could get food and fluids then go back to eating when she was better. Or use it for meds. Or eat for fun the things she loves and supplement calories. how much weight does she think is ok to lose ? My clinic starts recommending at 5% and are pretty insistent at 10 though if there is any hint of aspiration that is also a cue. And the one hour eating and struggle to maintain would be red flags too as you know

 

[wishmobbing]

All of what Nikki said!
It would be weird choice for a fashion piercing but it's a great invention to keep the fun in eating and let the tube do the heavy lifting. She can consider it a second mouth. And as with her first she will be in total control of what goes in. I promised to my PALS that there's no way he'll be force-fed and that refusing to take in calories (or when determined even water) would be fine by me, as long as there was this easy option to give him meds when he was needing them.
Drinking can become so very dangerous so quickly and then everything with meds and digestion goes sideways real quick. Staying hydrated is no work at all with a PEG. Another plus point being that it's an active prevention of choking and following pulmonary infections. So going to a clinic once to get the PEG placed ideally prevents having to go there in crisis mode again and again. Maybe this is something to consider it she's not a big fan of the whole system.