Search results for query: *

The one time there was a 2 hour gap between family/private caregivers in the ICU my husband almost died. There was a code Blue two rooms down and all attention was on that room. He needed suction and couldn't signal anyone. From then on, if I had to leave to use the bathroom I called for a...

In the midst of what you are doing everything is exhausting; I remember all too well. People take poop for granted--until they can't. I was lucky to not deal with the big D, but used everything from Miralax to digital stimulation and manual extraction (yep, had to google those two). I have two...

We looked into accelerated death benefits, and just as we were about to pull the trigger, learned that on one of the policies if he did not pass within a year we would owe interest on the money at 10% a year. Be sure to ask if there is a penalty if he lives longer than a year.

Tomswife, Matt originally said no feeding tube and no vent. Eventually he did both. Some PALS stick to the decision and others change their minds, probably depending on how they read their quality of life at the time. Having the BIPAP will give him time, if he choses it. One of the hardest...

ST, as I read your heartbreaking thread I don't see what your partner was asking for (ill), but I wonder if it's what I faced with my husband. At one point he was considering driving his chair off our dock and into the lake. I think he may have either tried or done a trial run one day, but...

I am so very very sorry--with the kind of sorrow that only someone who has been through this can understand. My husband was 55 also when he was diagnosed. He's been gone four years, and as I look back I think I made it through his five year journey by focusing on him. Nothing else mattered, but...

Allie, I can look back and see symptoms two to three years before Matt was diagnosed. Among the things that I"m thankful for is that we did not know any sooner than we did. Frankly, that knowledge would not have changed a thing except to rob us of the last "normal" years we had. If this was a...

I'm coming to this thread late, as I don't visit the forum often these days. You have probably already learned this, but there is (or was) a grant to adapt temporary housing (such as living with a relative) the the Vet does not own. That would help get through the transition to a new adapted...

Robin, as a CALS, I wanted my husband with me as long as possible. At some point, I finally realized that I needed to let him drive the train. We had some crazy adventures during his progression, but we had means to do what he was up for, and I was at a point in life where I could devote myself...

I can't say enough good about Dr. Bedlack and the Duke ALS Clinic. They are not only incredibly knowledgeable, they are also wonderfully compassionate. One fo the things about Dr. Bedlack that always amazed me was that he responds to patient emails himself, and quickly. I don't know how he...