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  • Hi Jennifer,
    Thanks for checking in. Not much has changed since we last communicated. My mom hasn't changed a whole bunch except for getting a bit more confused. I keep getting a runaround about the bipap - and it is just really getting old with me. I'm so tired and so sad and I feel like there is no end in sight. Sorry so negative - just can't muster up much joy these days. I hope you and your son are doing well.
    Take Care, Trina
    Hi Jennifer,
    I think I sent you a private message. Let me know if I didn't do it right. : )
    Hi Jennifer,
    Just wondering how you and your son are doing. Things are pretty much the same with my mom. We have her pulmonologist appt. on Tues. Drop me a line when you get a chance.
    When I read your post this morning I had to hold it together because I didn't want to cry in front of my mom. I can't believe your dad progressed so quickly and my mom is still here 6 mos. after diagnosis. This is the most random, horrible disease. I am so sad for you, but I have to tell you I am sad for myself too because it has been really nice to connect with someone who was caring for an elderly parent. We had some of the same challenges. I hope the end was peaceful for your dad, as I hope it will be for my mom. I know the next days, weeks and mos. will be so difficult for you and your son. I wish you the strength to get thru them . I haven't even (known) you for two months but I will miss you. You are a very caring person and I know that your dad was blessed to have you. Take care Jennifer. Trina
    Hi Jennifer,
    I posted in caregivers but it has gone into mod land. That doesn't usually happen to me. I'm glad hospice suggested the Ativan, and hopefully that will allow him to get some rest with the bipap. Maybe then he will be more open to talking about the peg. I am also glad that hospice will be some support for you and your dad. I'm thinking about you and hope for a restful nite. Take Care, Trina
    Hi Jennifer, just saw your post on how your dad is doing. Hope you will be getting some good help from hospice to make things a little easier. Your dad's sleepiness is perhaps related to his breathing (co2 build up?) so if he can tolerate any time with the Bipap that'll help. Its such a crappy crappy disease. Hope tomorrow a little easier.
    I'll be interested to hear what hospice has to say. My mom is in a program that is a bridge from home health care to hospice, but they do nothing but check in with me once a month. I also can call them if I have any questions. My mom's pcp said that hospice will get involved only if the patient could die within 6 mos., but I guess our parents would certainly qualify :_( I am anxious to know what they can do aside from giving them morphine.
    Sorry things are so rough right now. When I get frustrated I think of you having to deal with this all by yourself. Its so unfair to pals and cals alike. I am dreading that damn bi-pap, I know that my mom is going to fight it just like your dad. Part of me thinks I won't force the issue, because I know how tired and afraid my mom is - but if it can give them a little bit more energy, why the heck not just give it some time? I think a lot of the issues (yours and mine) are so much more magnified because we are dealing with 86 year olds who just shouldn't have to be doing these kinds of things. I don't think ANYONE should have to deal with this crap, but at 86? Seriously??? Strength to you, me, and everyone on this forum.
    Hi Jennifer,
    I apologize if I sounded like a know-it-all when I told you to take over talking to your dad's docs. I know it's not always easy to be around when they call or come around. I am fortunate enough (?) to not work so that I am always at my mom's whenever the various health professionals come (speech, visiting nurse, and so on). Thankfully now we are off of the home health care merry-go-round, so no more unnecessary home appts. Again, I didn't mean to offend you.
    Certainly not now with the loss of speech and some confusion setting in. Are you still looking for assisted living? Can he still speak? Before this diagnosis we were also looking for assisted living, but with the loss of speech we just thought she would be totally left out and/or bullied by her peers. Try to stay strong, I know this is such a difficult road we have been dropped off on. How old is your son? My son is 13 1/2. I can't even think what I would've done if this had all happened when he was younger.
    It must be so exhausting and scary for you to have no one else to help out with your dad. At least I am not alone with this because I have my brother's family here. Do you live close to your dad? My mom is only 5 min. away - which makes it a lot easier for me. I also read about your frustration with having to decipher what the docs say thru your dad. I understand he want to be independent, but you have to be the one to talk to them. I have taken over my mom's dr. appts for the past several years, and its a lot of work but I can't rely on her to do it.
    Hi Jennifer,
    Thanks for responding to my post and sending me a visitor message. I'm sorry to hear about your initial experience with the bi-pap. We have our pulmonary appt. 7/16, but like you are finding out with your dad, 86 is just not the age to have to start using these machines. My mom never embraced either change or technology, so it is definitely a lot of work on my part and my family's part to attempt to explain things to her. The feeding tube has worked out great for us because she isn't choking on her food all the time. But she can't do it herself so we take turns 3x a day. And the suction machine she will use when I am with her. I just know that the bi-pap is going to be a huge chore, but its the last thing we can do for her to make her comfortable. She will certainly never go on a vent.
    Hi jennifer, thanks for request, i think i checked the accept button (dummy when it comes to this stuff!) i had a sneaky read of your profile to check you werent crazy first, hee hee... I remember reading one of your initial posts re the diagnosis& feeling so sad for ye-some people express it better than others i guess. It's a really crappy situation. My mom is in her 60's & things are continually sliding, it's very difficult to watch - distressing is the word. I hope the BiPap helps your dad out. Do PM me if I can be of any help, i check in&out but guilty of not always posting as I'm a bit of a "talk when you have something vaguely intelligent to contribute" kinda person!
    Hi Jennifer,
    You might look up the threads on here on nutrition. There was something I think called benecal or something like that that you sprinkle on food that's supposed to help a little. Take care, kIM
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