Barbie
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  • Thanks Barbie, they are. The remodeling of the bathroom is done and not so crazy. Its a comfort to know that there is a place and someone that I can vent to. Hope your day is good and thanks again.
    Lol,sorry ......it might be the first thread on the pls forum.
    Was it about relapses and stability? if so I think its that.
    Why are you intrested?
    Sorry about that,dont get much sleep lately.
    Hi Barbie, Like Facebook I have little idea on how to work the ins and outs of this forum - let me know how to PM(private message?), because I have no idea. Now if you ask me to plug all the wires into my computer where they are suppose to go, setup the surround sound or wii, or paint a room, I'm a pro. Lol Let me know. Thanks.
    Boy, some days really test you. Jim is suffering from his back and it causes him bad days. He has no patients and I can't help him. By night time I'm ready for him to go to bed. We did make an appointment with an acupuncture to see if that will help. He does appreciate my help but that gets lost during the day. Just venting and wish he felt better. The doctors have nothing to offer but pain medicine.
    Hello! It is good to hear from you :) thanks for shaking up the forum a bit lol. It brought ppl out to share. That is what I was missing...the camaraderie. xo
    doctor said she is goin to refer her to another hospice in home I wanted to start a thread about this but not sure how to and im always busy on my feet day and night. I am participating in the personal preference program which is a program where medicaid pays me to take care of my mom. That how I was able to quit my job and still survive. Since I participate in this program I cannot get a home health aide. The reason I decided on this program was that in NJ home health aide dont touch vent or feeding tubes so it was a waste to have one for 40 hours a week who couldnt suction or move my mom around. I get a wound care nurse who comes to do wound care three times a week and then I do the wound care the other days. My mom never spoke about the als when she was diagnosed no plans were made so she is pretty much stuck on the vent. I dont think I could ever ask her if she wanted to be taken off the veny because I dont want her to think she is a burden to me.
    Hello I am a new member here but I have been reading post on the als forum for a few years just never had a chance to register. I take care of my mom who has als im 35 andsingle mother of three children ages 18 12 and 4. My mom was diagnosed in 2008 and is now on a ventilator completely bed bound and peg tube. My children and I are takin care of my mom I have a respiratory therapist comes in once a month and a nurse practitioner who comes once a month. I dont know anyone else living what my kids and I are going thru so I just wanted to reach out to you. My mom was referred to hospice but was not accepted due to her being on a ventilator. Her condition has progressed she has a pressure ulcer 4cm deep on her upper back and she is very small about 75 pounds or less. I feel so bad for my mother and some days find myself praying for her to go in peace. I read that a few caregivers have also felt this way. I feel like my mom ia just stuck in her body..
    Thanks for the info! And yes I have too many dogs, for a house with a wheelchair anyways! We started with 2, then adopted 2 more during our years of fostering rescue dogs (we have had 78 foster dogs over the last few years, I feel silly for adopting 2 of them but at least I let the other 76 go and didn't keep them all lol) and then we ended up with my step dad's dog here too because I couldn't separate them. It is a mini zoo but we make it work :)
    Hi Barbie, probably a silly question but how did you get a photo to show up beside your name on posts? I have tried to figure it out and just not seeing how to do it. Thanks!
    Hi Barbie! Just wanted to say hello and see how you are doing? Thanks for all of the helpful responses. Glad I can get helpful and supportive advice from you and others. Hope you are enjoying some of the summer weather!
    Barbie--I understand you are from Orlando and could really use some recommendations on any care you are pleased with for your husband's care since my sister and I are hoping to move dad and mom to Orlando to be near my sister (in Sanford). Currently living in Jax but believe this is not the type of condition that a 77 yr. old caregiver (mom) can deal with, without immediate family nearby. You can "friend" me if you like...
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