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sara06

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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
 

Al

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Hello Sara. There is not a problem baring your soul here. We are not here to judge and how you react to the death of your mother is a very personal matter. It is between you and your God and no one knows how you are hurting and we are all sorry for your loss. AL.
 

autumn

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Sara, As you may have read in my last post, my mom passed away a few days ago. I'm in shock as well. Did your mom pass away recently? I just want to tell you how sorry I am about your mom. It really is a shock to the system. Take care of yourself, and know that you're not alone. Corinne
 

CNA

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Sara, prayers, hug and kisses to you. Try to take some time as soon as you can to recoup yourself to a level so you stay well.
 

anne

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Sara..I am so sorry to hear about your mom. She is in a much better place now. You and your family are in my thoughts and prayers. Anne
 

sara06

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Hi Autumn, yes my mother passed away on the 28th of October. 2 weeks ago tomorrow. Still feels like yesterday. She was my best friend and the moment she was gone the world just felt different because she wasn't in it. I know she is in a better place and she's walking and talking and breathing, but it's still hurts everytime I come home and she's not here.
 

CindyM

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Hi Sara and Autumn. I am sorry to hear about the loss of your Mothers. Pleae stay in touch as you grieve for the women who meant so much to both of you.
 

hope

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Sara,

I am sorry for your loss. All of us will have our own way of dealing with loss. No one will be the same. Sometimes when we suffer a loss as great as this we can detach from the pain. The brain can be numb and all our feelings seem to be hidden away for a time. It does not mean we do not love or have lost respect for someone, it means that the pain is so great that the mind decides to go away from the hurt. Never feel bad about how you cope with your loss. You are hurting so much right now. The road is long and very painful when looking after a loved one with als. Exhaustion sets in also which makes everything more difficult. Give yourself a hug and be good to you. Give yourself time to heal, get lots of rest, get proper nutrition and maybe if you feel up to it go for walks. Take good care of you.

Sandy.
 

MtPockets

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I pray that God will strengthen you both Sara and Autumn. Thanks for the details Sara, it helps me to read your message. I'm still trying to get over the loss of my mother-in-law. I know there are no words at a time like this that can comfort you and your probably still in a daze. Maybe later you can come back and read these messages again and get some comfort from all the caring members who have expressed their love and concern. May God give you both the strength and peace you need and more.

God Bless
Capt. AL
 

Pearl

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I'm so sorry to hear about your loss. I think your post was written beautifully.
 

liz

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:cry:

Sara

I am very sorry to hear that you lost your mother. It saddens me to know this is something my kids will have to endure because of my disease. They can cry for awhile but then I want them to be strong, to move on, and just be grateful for the time we had together. My memories of loved ones lost are a source of comfort for me and in time I hope that the memory of your mother will be such a comfort for you.

Liz
 

sufernan

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Hello Sarah,
Sorry for your lost. I actually had the same feelings about the body that my husband used while he was here. I knew he was gone because I felt his spirit with me (I still do). The paramedics worked on him for an hour, I told them he was gone. His body felt empty and not at all represented who or what Daniel was.
I am sorry for what ALS did to your family, and know that I felt just like you did ....
Sunny
 

PamB

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Dear Sara:
I am sorry for your loss. I am sure your mom will always be watching you and I am sure she is so proud of how you took care of her and enjoyed all the everyday memories you had. May God Bless
PamB
 

janf

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tift
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tifton
you are great sarah

Sarah, I am an ALS patient. I lost my mom and dad 2yrs. apart to cancer, now, I have this disease(als) I'm 53 and now I will leave my daughters and 3 grands (one of those just now due) When my mom died I begged God to take me (careful what you ask for as they say. ) I just didn't want to live without her. Then one day I woke upand thought about the 2 adopted infants God gave me to raise. At that time Johnna was 10 and Kayla was 5, now, they both have little ones. From that day on I knew I had a reason to live. I bought a day care and poured my heart into it and, my girls. My husband was on the road a lot so we found lots of fun things to do. It was so hard on my girls, they suffered a lot but, we made it. Healing takes time. Be kind to yourself. Take long walks pray and listen to praise music this will lift you up high, so,you can feels Gods presence and know your precious mom is sitting @ his side. We can't see your tears but we feel them, and, we will pray for you. Find your happy place and fall into it. GOD BLESS! JANF
 

sharonm25

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Sara,
I am very sorry for the loss of your mother. I can relate to your feelings. This disease has spread so rapidly in my mother that she is barely recognizable as the same person she was in early March. It is very difficult to watch someone that has always been your rock and support become so helpless. My mother is also proud and I just try my best to treat her the same way I always have. This past Friday marked our 1st week with in home hospice care but we have not had much of a chance to utilize their services. On Friday, the hospice nurse sent my Mom to the hospital because she was hallucinating and vomiting. They said she was very dehydrated but when her regular Dr came in this morning he suggested that she go to the hospice center for symptomatic care. We are all very frightened by this but we want what is best for her. The Dr said that 24/7 hospice care would be helpful in dealing with her breathing and swallowing problems because she does not want vents or feeding tube.
Although I would not wish this horrible disease on anyone, it is comforting to know that I can share my thoughts and feelings with someone who is or has been through this experience and can relate to my situation. I appreciate you sharing this very difficult moment in your life.

You are in prayers,
Sharon
 
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