sara06
Member
- Joined
- Aug 9, 2006
- Messages
- 29
- Country
- Ottawa
- State
- Michigan
- City
- Jenison
Well, I know that GOD will never give us more than we can handle...but I do believe he has been testing my limits and loyalty lately.
My brother was married on the 20th of Oct.. Which I did a lot to prepare for. My mother was not going to miss it for the world. Something very ironic... my brother came home 2 weeks before his wedding very upset because my mom's sister told him we have no way of knowing when she was going to go and that she may not make it to his wedding in 2 weeks. A harsh reality that goes without saying. My mother was upset that her sister thought she wouldn't last two more weeks.
Wow, let me back track a little bit...For those of you who don't know me or any of my story, Hi my name is Sara. My family has one of the rare hereditary forms of ALS. My grandfather, uncle and my great uncle have all passed from it. My mother was diagnosed in Dec. '05 and her cousin a month later.
Okay back to my story. If you would have asked me 3 weeks ago how my mom was doing and how long I thought she'd make it...I would have said at least another 2 or 3 months. She was on a CPAP machine that she only used to sleep and occasionally when she was exhausted. She spent the day in her wheelchair in the kitchen visiting with friends and family and in the recliner in the evening when we watched our shows together. The only time spent in her bed was sleeping. I'd lift her up and she could still bare her weight enough to shimmy her feet. So I was still taking her to the toilet, she was still showering and even taking baths occasionally. She still fed herself. So I never expected what was coming.
Carolyn was my mother's name, and she was a very proud person. Not arrogant in any way, just proud. She didn't want nurses she didn't know taking care of her, obviously my brother taking her to the bathroom was out of the question. She didn't want to embarrass herself or my brother by causing a scene at his wedding, so she decided she was going to go without using her breathing machine at all the day before and the day of the wedding. When she was completely exhausted on Saturday the 21st, I didn't really think to much of it...until I took her to the bathroom and asked her if she wanted me to brush her teeth and she said she was too tired...my mom too tired to brush her teeth? All day she just kept saying how tired she was. She said she thought she was coming down with a chest cold because she felt congested. She hadn't been able to cough productively for months. Through out the day it got harder for her to breath and we ended up taking her to the emergency room at 10:30 that evening. We are not doctors, but we were hoping they could do something for her, suck out the congestion or something. well she spent 6 hours in the ER with oxygen that she didn't need. They finally admitted her, my dad went home to get some rest, and within 45 mins after he left they had finally done a blood gas test and rushed her up to ICU. Nobody told me what was going on, and I really knew nothing about her declining condition. When we got to the hospital, she was completely co-herent and rather upset that they wanted to keep her there. By time they brought her to the first room, she was totally out of it. She couldn't keep her eyes open long enough to ask her a question.
Someone finally told me what was going on when they saw me balling my eyes out across the room. Apparently her carbon dioxide levels were at 98, normal is 35-45 and her oxygen was at 165 and normal is 75-100. And none of them noticed that she was slipping in to a coma before this? Like I said, I am not a doctor, I didn't know what was going on. So they put her on the BIPAP machine in hopes of it driving her carbon dioxide levels down. The other alternatives were death or intubation. My mom had said from the day she was diagnosed she did not want to live on life support. No vents or feeding tubes. They checked her gas levels about every 2 or 3 hrs and the machine was actually working. By monday night, she was out of the critical range and finally coming back to us. I just wanted to get her home, I did not want her to die in the hospital. We brought her home tues. afternoon, basically to let the whole thing happen again. We had hospice for 4 days. The first 2 days she was home she was really good but the next 2 she couldn't seem to get enough rest. Sat. morning I noticed her breathing was very shallow and her BIPAP machine was not kicking on to give her a breath like it was supposed to. And when it did the pressure just blew her mouth open so she was getting all that she was supposed to. Within an hour I decided to call all the family. She passed away at 2:35 pm with just about all of her family here with her. This probably sounds really terrible and I'm very sorry if I offend anyone, but I couldn't wait for the funeral home to come and get her. I didn't have any emotional attachment to that body. Even though it was my mother's, after what this disease had done to her, she didn't resemble my mother. And she wasn't in there. The moment she took her last breath she was in the arms of the LORD. I could just picture her shaking her head and laughing at any of us who were kissing her and fawning over her when she wasn't even in there. I really needed to just get this all out. I'm sorry this is such a long post. I feel like I'm babbling a lot. I really hope that I haven't offended anyone by what I said. It's not that I don't have respect for the dead because I do very much so, it's just that I have never experienced something like this before and I think I'm still in shock.
Thanks to all of you who had the patience to read this entire post, I appreciate it.
Sincerely,
Sara
My brother was married on the 20th of Oct.. Which I did a lot to prepare for. My mother was not going to miss it for the world. Something very ironic... my brother came home 2 weeks before his wedding very upset because my mom's sister told him we have no way of knowing when she was going to go and that she may not make it to his wedding in 2 weeks. A harsh reality that goes without saying. My mother was upset that her sister thought she wouldn't last two more weeks.
Wow, let me back track a little bit...For those of you who don't know me or any of my story, Hi my name is Sara. My family has one of the rare hereditary forms of ALS. My grandfather, uncle and my great uncle have all passed from it. My mother was diagnosed in Dec. '05 and her cousin a month later.
Okay back to my story. If you would have asked me 3 weeks ago how my mom was doing and how long I thought she'd make it...I would have said at least another 2 or 3 months. She was on a CPAP machine that she only used to sleep and occasionally when she was exhausted. She spent the day in her wheelchair in the kitchen visiting with friends and family and in the recliner in the evening when we watched our shows together. The only time spent in her bed was sleeping. I'd lift her up and she could still bare her weight enough to shimmy her feet. So I was still taking her to the toilet, she was still showering and even taking baths occasionally. She still fed herself. So I never expected what was coming.
Carolyn was my mother's name, and she was a very proud person. Not arrogant in any way, just proud. She didn't want nurses she didn't know taking care of her, obviously my brother taking her to the bathroom was out of the question. She didn't want to embarrass herself or my brother by causing a scene at his wedding, so she decided she was going to go without using her breathing machine at all the day before and the day of the wedding. When she was completely exhausted on Saturday the 21st, I didn't really think to much of it...until I took her to the bathroom and asked her if she wanted me to brush her teeth and she said she was too tired...my mom too tired to brush her teeth? All day she just kept saying how tired she was. She said she thought she was coming down with a chest cold because she felt congested. She hadn't been able to cough productively for months. Through out the day it got harder for her to breath and we ended up taking her to the emergency room at 10:30 that evening. We are not doctors, but we were hoping they could do something for her, suck out the congestion or something. well she spent 6 hours in the ER with oxygen that she didn't need. They finally admitted her, my dad went home to get some rest, and within 45 mins after he left they had finally done a blood gas test and rushed her up to ICU. Nobody told me what was going on, and I really knew nothing about her declining condition. When we got to the hospital, she was completely co-herent and rather upset that they wanted to keep her there. By time they brought her to the first room, she was totally out of it. She couldn't keep her eyes open long enough to ask her a question.
Someone finally told me what was going on when they saw me balling my eyes out across the room. Apparently her carbon dioxide levels were at 98, normal is 35-45 and her oxygen was at 165 and normal is 75-100. And none of them noticed that she was slipping in to a coma before this? Like I said, I am not a doctor, I didn't know what was going on. So they put her on the BIPAP machine in hopes of it driving her carbon dioxide levels down. The other alternatives were death or intubation. My mom had said from the day she was diagnosed she did not want to live on life support. No vents or feeding tubes. They checked her gas levels about every 2 or 3 hrs and the machine was actually working. By monday night, she was out of the critical range and finally coming back to us. I just wanted to get her home, I did not want her to die in the hospital. We brought her home tues. afternoon, basically to let the whole thing happen again. We had hospice for 4 days. The first 2 days she was home she was really good but the next 2 she couldn't seem to get enough rest. Sat. morning I noticed her breathing was very shallow and her BIPAP machine was not kicking on to give her a breath like it was supposed to. And when it did the pressure just blew her mouth open so she was getting all that she was supposed to. Within an hour I decided to call all the family. She passed away at 2:35 pm with just about all of her family here with her. This probably sounds really terrible and I'm very sorry if I offend anyone, but I couldn't wait for the funeral home to come and get her. I didn't have any emotional attachment to that body. Even though it was my mother's, after what this disease had done to her, she didn't resemble my mother. And she wasn't in there. The moment she took her last breath she was in the arms of the LORD. I could just picture her shaking her head and laughing at any of us who were kissing her and fawning over her when she wasn't even in there. I really needed to just get this all out. I'm sorry this is such a long post. I feel like I'm babbling a lot. I really hope that I haven't offended anyone by what I said. It's not that I don't have respect for the dead because I do very much so, it's just that I have never experienced something like this before and I think I'm still in shock.
Thanks to all of you who had the patience to read this entire post, I appreciate it.
Sincerely,
Sara