ShellyRenee
Active member
- Joined
- Jun 23, 2005
- Messages
- 30
Hello to all,
Sometimes I feel like dad and I are the only ones dealing with this. Then I will escape to my basement to see if there is any new post, just to kinda reassure myself we are not. So, a big thank you to all who share your thoughts, anger, confusion, tears, laughter, kind words and advice.
Last night I sat down to read some post when I started to read one from Pat, before I knew it the tears were running down my face. Thoughts going through my head of why am I crying I do not know this person but I felt her pain. I know she had (has) pain the SAME as I do. Her love for Jack, my love for my mom (stepmom but MY MOM) is the same, no different. I wish I could sit and talk for hours with people who are dealing with this same cruel disease. Yes, I do know there are support groups but mom does not want any part of it, besides that the nearest group is 45 to 50 mins drive time. That is 1 1/2 hrs. of drive time (sanity time I call it) that I unfortunately don't have. Having small children and a husband and then running to my parents house 2x's a day doesn't leave much time.
Now that I really got off base of the real reason for my post, sorry. Moms feeding tube was put in on the 5th, what a sad sad day. Mom cried everytime we made eye contact. Talk about breaking my heart, all I wanted to do was to take away her pain emotionally and physically. The hospital sent her home on NO PAIN MEDs and NO INSTRUCTIONs on how to use this feeding tube. The surgeon sent a prescription for us to fill for tylenol w/ codene, liquid. She could NOT take it. The hospital said Home Health would come out to the house to help, well since she already has Hospice the good ol insurance co. said oh no not both. Mom went home at 11:00 and cried and suffered until Hospice could get there at 3:00. I was so angry at all, for the confusion, for making mom suffer and for making my mom cry. You can believe I was on the telephone telling off some people. You treat people like that. All I would get is "we are sorry for the confusion". EVERYONE needed to be on the same "page" as far as I'm concernd. Would they of been ok with this if it was one of their loved ones? It's done now but I will not stand back and let bull dodo happen. For todays update, mom has infection at the sight. No way, huh? Why does this have to happen? After talking with Hospice and pushing that she DOES need an antibiotic finally that was taken care of. They just kept saying using antibiotics too much ones body will become use to it and it wont work later. Realalisticly, infection and ALS now or infection and ALS at a more progressed state why make them suffer any more than they already do?
My mom did open up a little the other day regarding how she feels about her having ALS. She said "why talk about it? I can't change it." I just wish she would open up to dad, if nothing else but to say I love you. Dad is hurting too but she wont talk about it because he can't change it or stop it for her.
The other day she gave me a card that had some money in it and a little note that said "thank you for all you have done and continue to do." Once again I turned to a flubbering fool, I could careless about any money but the card I will keep as long as I am alive. I am sure my dad put her up to it (just because that is how THEY are) but I know she appreciates everything. If I had one wish it would be to make this cruel ALS just stop right here for her.
I will stop boring you all with my sadness but may I say to all thank you for letting me vent. :evil:
Shelly
Sometimes I feel like dad and I are the only ones dealing with this. Then I will escape to my basement to see if there is any new post, just to kinda reassure myself we are not. So, a big thank you to all who share your thoughts, anger, confusion, tears, laughter, kind words and advice.
Last night I sat down to read some post when I started to read one from Pat, before I knew it the tears were running down my face. Thoughts going through my head of why am I crying I do not know this person but I felt her pain. I know she had (has) pain the SAME as I do. Her love for Jack, my love for my mom (stepmom but MY MOM) is the same, no different. I wish I could sit and talk for hours with people who are dealing with this same cruel disease. Yes, I do know there are support groups but mom does not want any part of it, besides that the nearest group is 45 to 50 mins drive time. That is 1 1/2 hrs. of drive time (sanity time I call it) that I unfortunately don't have. Having small children and a husband and then running to my parents house 2x's a day doesn't leave much time.
Now that I really got off base of the real reason for my post, sorry. Moms feeding tube was put in on the 5th, what a sad sad day. Mom cried everytime we made eye contact. Talk about breaking my heart, all I wanted to do was to take away her pain emotionally and physically. The hospital sent her home on NO PAIN MEDs and NO INSTRUCTIONs on how to use this feeding tube. The surgeon sent a prescription for us to fill for tylenol w/ codene, liquid. She could NOT take it. The hospital said Home Health would come out to the house to help, well since she already has Hospice the good ol insurance co. said oh no not both. Mom went home at 11:00 and cried and suffered until Hospice could get there at 3:00. I was so angry at all, for the confusion, for making mom suffer and for making my mom cry. You can believe I was on the telephone telling off some people. You treat people like that. All I would get is "we are sorry for the confusion". EVERYONE needed to be on the same "page" as far as I'm concernd. Would they of been ok with this if it was one of their loved ones? It's done now but I will not stand back and let bull dodo happen. For todays update, mom has infection at the sight. No way, huh? Why does this have to happen? After talking with Hospice and pushing that she DOES need an antibiotic finally that was taken care of. They just kept saying using antibiotics too much ones body will become use to it and it wont work later. Realalisticly, infection and ALS now or infection and ALS at a more progressed state why make them suffer any more than they already do?
My mom did open up a little the other day regarding how she feels about her having ALS. She said "why talk about it? I can't change it." I just wish she would open up to dad, if nothing else but to say I love you. Dad is hurting too but she wont talk about it because he can't change it or stop it for her.
The other day she gave me a card that had some money in it and a little note that said "thank you for all you have done and continue to do." Once again I turned to a flubbering fool, I could careless about any money but the card I will keep as long as I am alive. I am sure my dad put her up to it (just because that is how THEY are) but I know she appreciates everything. If I had one wish it would be to make this cruel ALS just stop right here for her.
I will stop boring you all with my sadness but may I say to all thank you for letting me vent. :evil:
Shelly