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How are you doing? Things on my end are not great. Dad's VA. benefits are not yet in and he refuses to make many decisisions before that. Meantime, he is not sleeping well at night and dozing off even during conversations during the day. He's not succeeding with the bipap and its all a vicious cycle. I honestly honk he just wants it to be over. He and I had an argument last night because I wanted to stay over and he would not let me. I'm at a loss for how to help and am getting a hospice consult tomorrow.
My dad can still speak though not always so clearly. It depends on how fatigued he is. My dad is about 10 minutes away, 15 minutes with traffic and this does make it so much easier. My son is 10 and is frustrated with losing out on doing certain things because I am busy with my Dad and also is a bit scared about it all, though he doesn't know about ALS, just that grandpa's body is "wearing out". We are still thinking assisted living though I am planning to get an evaluation on whether or not Dad can stay where he is with help. And yes, I have taken over doctor's discussions but it is these darned visiting nurse, PT, dieticians people that refuse to call me and keep calling my Dad. I am learning that there are good days and bad days and to cherish the good ones and put the bad ones off to the side. It is not easy.
My dad is napping with the BiPAP now! Some progress. The tech said to gradually build up so we will go from an hour today to 2 hours tomorrow. I feel a tiny bit better though I know he feels this is just postponing the inevitable.
I think my dad wants out too. It's all so overwhelming for anyone but when you're 86 the machines are so intimidating and the behavior change required is so hard. My dad has lost so much weight and continues to lose. I'm concerned that the feeding tube insertion might be too much for him (he has a risk of strokes) and the BiPAP has been scary. I'm very sad and depressed and feel very alone.
The doctors of course won't (can't?) say anything about prognosis but I am feeling very much like we won't have tons of time. Just my gut based on what I've read about ALS in the elderly, those with bulbar onset, and those that have rapid weight loss. It really, really sucks.
Thank you so much for asking. It's been a whirlwind, trying to find a good assisted living facility nearby. He's fighting all the help that is being offered and still trying to do as much as he can himself (very stubborn). He is easily fatigued but is getting the bi-pap tomorrow and I am helpful that things will improve a bit after that. He does not want the feeding tube right now (though I am guessing it might help). His weight has more or less stabilized but he needs to put some back on.
I am sad and stressed. He has hearing issues as well (that he refused to admit) so every time someone calls him, the information gets very confused and I have to clean it all out. It would be easier if they would just call me first but I can't take away all of his independence while he is still speaking.
His problems started with a hoarse voice and then he started slurring his speech. We went to ENTs and vocal chord specialists and were told it was old age or a thinned vocal chord. Lots of speech therapy that didn't really help.Shortly after that he just got so bent over. We thought it was spinal stenosis and it wasn't. Then he noticed his head was harder to hold up when he was walking (almost fine when sitting). And he's lost sooooo much weight and has tremendous muscle atrophy. First neuro he went to said ALS but suggested a second opinion. When we first went to the ALS specialist, he said that because of the muscle atrophy it did not look like ALS but then repeated the EMG and said it was ALS. I'm still somewhat in denial. I'm grasping at straws and giving false hope but I am insisting he get a lyme test before we go too far down this path. Thank you for chatting with me. I feel very alone. I am his only caregiver and I have a young son as well. Jennifer