ransan
New member
- Joined
- Jan 27, 2011
- Messages
- 9
- Reason
- CALS
- Diagnosis
- 11/2009
- Country
- US
- State
- alabama
- City
- gadsden
Hi, I am new here been reading forums and blogs the last couple of days and I wanted to share a bit of my story with ya'll. It starts about 2 1/2 yrs ago, my mom was having trouble with her left arm and hand it she went to doctor (03/2009) and they said it was this and that she had pinched nerves so a few months went by she couldn't use her left arm or hand at all and the right one was starting to do the same as her left one had. She went to doctor again (06/2009) and they sent her to another one and then another. They tested her for MS wasn't thought she may have had a stroke nope then found Herniated disks in her back sent her to surgeon which said she needed Surgery as soon as possible that the disk were pinching the nerves which was causing the problems she was having. So 09/2009 has the surgery said everything went fine and all was good that she would and should recover but the damage that had been done to the nerves may not heal. So she goes back to her doctor for checkup after surgery (not doing any better) could barely walk the doctor said her back was healing and look great but couldn't understand why she was having trouble with walking and such. So went to another doctor 10/2009 due to she could hardly walk and was falling more and more still couldn't use her left arm and right arm still being a bothersome. 11/2009 we got the word it was ALS a week after Thanksgiving. That is a day I will never forget I didn't know whether to cry, be angry or what. By this time she was no longer able to walk without someone holding her. She couldn't shower and bathe herself due to not being able to use her arms and hands. 01/2010 couldn't use her right arm or hand to feed self or anything. 04/2010 speech started getting slurred, still able to swallow just not well. 05/2010 had PEG tube placed.
I have a husband, children and a full time job. I have spent every off day and work days I go over after work and care for her til bedtime. I was the only one to bathe her and keep her meds straight and keep her personnel care done during this whole time she had been unable. I have a sister which rarely ever came around, lived next door and no job I may add. Two step sisters whom my mom raised because they were 2 and 6 when their dad married my mom and their mom had left them. Not much if any help from them. 06/2010 I told my step dad that we needed to get hospice started, he told me he didn’t think we were ready for hospice yet. So I continued on with no breaks any rest any time for myself or my husband and kids. I was asking for help from my sisters which had no free time always had an excuse. 09/2010 I had all I could take was on my last leg and was about to fall apart physically and emotionally. I told my step dad Call and get Hospice started once again he said I don’t think we are ready for them… I lost it and said maybe the WE that is not ready for them may not be but this part of the WE has got to have help I cannot keep going this way. So Hospice started the next week. This was a huge load off me. I still was going over there after work every day but she had been bathed and cleaned to where that was one thing I didn’t have to do it has been great. I have missed a lot of work and still don’t have time for me or anything else.
11/2010 speech is not easy to understand, swallowing very little. 01/2011 can’t understand her, swallowing not much at all, don’t want to be fed through tube, breathing still but not well, uses BiPAC and oxygen much more than before.
I have many friends that have helped me through all of this and my husband has very understood with my absence. I will tell you this is the hardest thing I have ever experience and pray that I don’t have to ever again. I pray that no one has to watch this and we could find a cure or at least a way of slowing down and stopping the progression.
I have days I just want to cry some days I want to scream and snap someone’s head off. But I don’t I love my mom and want to do all I can for her while I still have her.
One thing I would like for everyone to know that one reason as if the ALS is not bad on it’s own but worse is that some of the family daughters and some other family members don’t help nor even come and visit. I don’t want to hear the excuse of I can’t bare to see her like that….heck I can’t either but it would mean so much to her, it hurts her that some don’t come to see her. My mom has always been the strength of the family, friend and caregiver to all, that is why it hurts so bad now that so many of the family she had helped in the past can’t even drop by to say Hi I love you.
I am sorry for such a lengthy story but so much I wanted to share and get out of me.
Thanks to all reading this and I want all to stay strong and know you are in my prayers.
I have a husband, children and a full time job. I have spent every off day and work days I go over after work and care for her til bedtime. I was the only one to bathe her and keep her meds straight and keep her personnel care done during this whole time she had been unable. I have a sister which rarely ever came around, lived next door and no job I may add. Two step sisters whom my mom raised because they were 2 and 6 when their dad married my mom and their mom had left them. Not much if any help from them. 06/2010 I told my step dad that we needed to get hospice started, he told me he didn’t think we were ready for hospice yet. So I continued on with no breaks any rest any time for myself or my husband and kids. I was asking for help from my sisters which had no free time always had an excuse. 09/2010 I had all I could take was on my last leg and was about to fall apart physically and emotionally. I told my step dad Call and get Hospice started once again he said I don’t think we are ready for them… I lost it and said maybe the WE that is not ready for them may not be but this part of the WE has got to have help I cannot keep going this way. So Hospice started the next week. This was a huge load off me. I still was going over there after work every day but she had been bathed and cleaned to where that was one thing I didn’t have to do it has been great. I have missed a lot of work and still don’t have time for me or anything else.
11/2010 speech is not easy to understand, swallowing very little. 01/2011 can’t understand her, swallowing not much at all, don’t want to be fed through tube, breathing still but not well, uses BiPAC and oxygen much more than before.
I have many friends that have helped me through all of this and my husband has very understood with my absence. I will tell you this is the hardest thing I have ever experience and pray that I don’t have to ever again. I pray that no one has to watch this and we could find a cure or at least a way of slowing down and stopping the progression.
I have days I just want to cry some days I want to scream and snap someone’s head off. But I don’t I love my mom and want to do all I can for her while I still have her.
One thing I would like for everyone to know that one reason as if the ALS is not bad on it’s own but worse is that some of the family daughters and some other family members don’t help nor even come and visit. I don’t want to hear the excuse of I can’t bare to see her like that….heck I can’t either but it would mean so much to her, it hurts her that some don’t come to see her. My mom has always been the strength of the family, friend and caregiver to all, that is why it hurts so bad now that so many of the family she had helped in the past can’t even drop by to say Hi I love you.
I am sorry for such a lengthy story but so much I wanted to share and get out of me.
Thanks to all reading this and I want all to stay strong and know you are in my prayers.