tmackenzie

Thank you. She's hanging in there, she's really tired, but the meds make her tired also. She's on Lorazepam and morphine as needed. She's fallen a couple times. She just hates the BiPap, but knows it helps her breathe and not feel like she's suffocating. You have been in my thoughts as well. Are you doing ok?

Hi Tina,
Thinking of you. How are things going with your mom? My dad is coming home to his house for awhile. I haven't seen him since Labor day and its been very hard. He has been staying with my sister and her family in Dallas. Dad is starting to lose use of his fingers now and his arms are getting weaker. He has a bi-pap that he uses just at night and it has improved his breathing and energy level a little. Take care, Kim

Hi Tina, thinking of you and wondering how your Mom is doing.

Also, it's scary to hear of her weight loss. Did she ever get the feeding tube? Not sure how that works with her being on hospice now. It is good to hear she wants to get online and connect, I feel it's so helpful for coping with everything.

Tina, I am hoping I read you right and your Mom no longer has fever and is feeling better. Very glad to hear that. I am sure it was (and still is) really scary for all of you. My Mom has FTD, so she doesn't cry or act afraid, I'm not really sure how much she understands about the progression of ALS. I have many crying spells when I am not around her. Like you, I try to keep her smiling and happy. Since your Mom knows and understands what ALS does, I'm sure it's REALLY hard. We have not put my Mom on hospice yet. She can't really take a deep breath anymore. Still won't use the biPap. I hope and pray for you and your Mom to have more time to spend together!

okay... I had to put my week in a couple posts...

It has been such a rough week. Mom developed a fever a week ago Monday. Her hospice nurse gave her a pain patch for her breathing and pain. By Tuesday night her fever was gone, and so was her ability to talk, move, everything. She slept and slept and slept. I came back home Wednesday to go to work and was told by my aunt staying with her that she was in and out of it so to speak, very anxious and aggitated. I went back on Thursday to see her and she seemed okay at first. I gave her a shower and she was beginning to act like herself. Her nurse came again and checked her over, changed her pain patch, etc. By 2 hours later she was back not able to talk, full of phlem and wanted to sleep. I thought she was just needing to rest after having the fever. I left and came back home.

That night (Wednesday) my dad called me at 2am and said she was not making sense walking around pickignup things, dropping them etc. We called the nurse to ask again if this odd behavior was from the pain patch and could we remove it. Then said yes and sent a nurse to see her. She then went back to sleep, I went there Friday night after work and stayed until Sunday night and all she did was get up for a few short moments and went right back to sleep. She has been up and down during the night a few times each night as well. She's been really battling saliva. I got her some mucinex which seems to help a bit. So all week long, my dad and I thought this is the next level. Her energy level is gone, etc. Until today. The U of M nurse practitioner called and I explained all of this to her. She thinksmom needs xrays to see if she had phneumonia.

With Hospice we can't bring her in to be checked, although hospice did say they could look into provising antibiotics. Don't get me wrong, hospice is nice and they are good to her. But I thinkt hey over medicate her. My mom's overall well being was so vibrant. She was so excited to FINALLY get her computer and be online. It was just today actually that she is talking about it again and able to finally talk on the phone to me. I am going there this Wednesday thru Sunday. I am getting prepared for her benefit dinner on Saturday. It is going to be so nice. Our entire family is coming for it. She is excited about it. And after talkign with the U of M nurse today, she told me it may take a few days to get the medicine out of mom's system. Momw as not even eating solid food (until today). Andhe bipap... when she is out of it she panics with her machine. She does not feel it's working right.

There was a respiratory therapist going out there today to adjust the settings so that when her breathing is shallow, the machine will sense that and force more air into her. She really needs to be on it more, but she gets so scared of it. She does use oxygen as often as possible now. Also, my sister is coming home from Indiana to stay with her. I think with my sister there, I can have her show and teach mom this forum. I was teaching mom facebook as well. She has a lot of family members on there. Moms weight was at 140 for a long time and this past week is now at 129. She drinks ensure all the time. I just feel so bad for her. She really thought she was going to die last week. She has many, many bouts of crying. Just a wrong thought and she will cry. I want her to get it out, but I try to bringher spirits back up too. Are any of your family members going through this? Thank you so much for being there. Tina

Tina hope you are ok. I know your mom was so very sick. Please let us know what is going on!
Love
Nikki J

Hi Tina,
Thinking of you. Hope your mom is doing well with her bi-pap machine. My dad uses his just at night and he sleeps so much better with it. If you haven't used it already you might have your mom try Boost or Ensure to help maintain her weight. Take care, Kim

Hi Tina, I am hoping things get better ASAP for your Mom. It is so hard!! I am thinking of you and praying for you! Take care.

My reply to your post went to moderation. If your mom qualifies for Medicaid, she should also be eligible for welfare and food stamps (can she still eat?). The only org that gives financial help for pALS is the ALSGA. Call Stu and explain your situation. Funds are limited, but a grant for your mom may help tremendously.
http://www.alsguardianangels.com/

Hi Tina,

Just wondering if Chris has her internet up & running. Would love to hear from her. How are you holding up?