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My husband has bacterial pneumonia. He was looking better, but has taken a turn for the worse. I have been non stop nursing him for 4 days. He told me today on his phone that he is done. I am in dispair.. yet do not want him to suffer either. Today was rough, his family, who have never even...

My husband also has bulbar, and at times is a royal butthead. (To put it nicely.) I often think it is because they are scared, angry, and frustrated, and we are the closest person to take the aggression out on. For example mine likes to point and grunt instead of using the text to speech...

I am now feeling the tick tock of the als clock. My husband is declining. He is getting set up to do MAID in the next few months. I am having more issues than he is. He is actually happy now. I suppose because there is an off ramp before he loses his dignity . He says he naturally is afraid...

Jenny, I am so sorry. This is so similar to my journey with my Husband. Mine held out until his 2nd year in to get a peg tube, which just happened this week. He wouldn't even go to a neurologist until the speech was 90% gone, and he was getting drop foot and muscle twitching. And choking...

Thank you all for responding. No they didn't set me up with anyone. The connection is Enfit and they gave us luer lock. Instructions in a packet. The syringe I managed to get, worked but I am having to just barely put it over the inside part, and be extremely careful. I was able to put 50ml...

Hi my husband had his peg placed yesterday afternoon. Hospital sent us home with the wrong syringes to fit his port. I went to do a flush as instructed and the tip on the syringe would not fit the port. His port has inside threads. I had a crying fit, then threw on 2 n95's and went to the ER...

I have been making heavy soups with butter, whole milk, some cream. They are piling the weight on me. I asked him if he feels sick, he said no, food just doesn't taste good. (Except Ice cream) It seems he only wants fruit smoothies and ice cream. I am glad he's finally getting a tube. I go...

Hi everyone, my husband has had bulbar onset since June 2020. He is 1 week from a g tube, and all of a sudden he doesn't like the blended food I have been feeding him for months. I switch things up, but I am noticing he is leaving half, and doesn't look like he is enjoying. He says things just...

Thank you for replying, both of my parents ended up with dementia. Mom had FTD, Dad had vascular. I am hoping this is not the case. He is fighting getting a peg tube and if I don't whip something up he gets very nasty. He is ok now, I made cheesy broccoli soup blended. Hoping he was hangry .

My husband has had bulbar onset als since Oct 2020, finally diagnosed 2/2022. He has always been so sweet, now he is mean to me. Is this common? I know he is so depressed. He is going downhill now, and is angry. I cry so much now. I do not know what to do. I just try to be invisible.