Citlalli
Member
- Joined
- May 25, 2007
- Messages
- 27
- Reason
- CALS
- Country
- Mexico
- State
- Morelos
- City
- Tepoztlan
This is my first post though I have been reading some and have found this forum to be a blessing.
I am the caregiver for my husband Andres, we are both 35 and have been living with ALS for 5 + years now since it started about a week after we got married. Andres is now totally paralized from the neck down, in a wheelchair for the last 3 years, cant talk and has had a PEG tube for the last year and a half altough he still eats a little ice cream and some liquids.
We live in Mexico and it is hard because there is hardly any information here about ALS , the doctors barely know about it, and we have had almost zero contact with other people going through this ordeal. So I have many questions, especially since reading certain things about how people cope, I don´t know if what we are doing is normal if we are doing something wrong etc. I do a lot of research through the internet.
Not that we really go to doctors, we have opted for a natural aproach, and used some alternative medicine. For example Dr Bach flower essences, rescue remedy, was the thing that helped Andres sleep better after 3 years of sleepless hell for both of us, (that and changing his sleep patterns. He has to be turned in bed about every hour or half an hour. So we went from about 10 times a night to about 5. He uses a memory foam matress and has a hospital bed that vibrates and even so will get nasty red marks on his hips after a little time. This is my question, I have read that some people will stay in the same position all night, that they are nor assisted at night, How is this posible? do they take sleeping pills? painkillers? are there other options?... isn't this dangerous. like if you can't feel the pain you don't move and then are morre likely to get pressure sores?
Andres will not take even an aspirin, he is very tough but he is also very uncomfortable most of the time even though he has a new chair equipped with an alternating pressure air cushion and it is practicaly covered in sheepskin. He has a lot of position related pain. How do people deal with this?
Everything about his positioning which he also needs to be assisted with constantly is extremely precise, to the point that no one is able to help him unless he is rigurously trained before. I have al but given up that a nurse can learn what is needed to spend the night with him, the only other person who can is his father, he is coming one night a week and also gives me a free day. The thing is Andres needs someone (well trained) around him all the time, since he can't talk it has to be someone that understands his signals etc. MAinly that is me.
Is there anyone out there trying to do this without the alopathic medicine? if you use painkillers and other things, what is your experience with them.
He has said he wont use any ventilation support and is already having some problem with breathing, I can't help worrying that he will suffer.
This post is pretty long so I will ask about other things later, thank you for reading this and I would really apreciate any feedback.
Thank you,
Citlalli
I am the caregiver for my husband Andres, we are both 35 and have been living with ALS for 5 + years now since it started about a week after we got married. Andres is now totally paralized from the neck down, in a wheelchair for the last 3 years, cant talk and has had a PEG tube for the last year and a half altough he still eats a little ice cream and some liquids.
We live in Mexico and it is hard because there is hardly any information here about ALS , the doctors barely know about it, and we have had almost zero contact with other people going through this ordeal. So I have many questions, especially since reading certain things about how people cope, I don´t know if what we are doing is normal if we are doing something wrong etc. I do a lot of research through the internet.
Not that we really go to doctors, we have opted for a natural aproach, and used some alternative medicine. For example Dr Bach flower essences, rescue remedy, was the thing that helped Andres sleep better after 3 years of sleepless hell for both of us, (that and changing his sleep patterns. He has to be turned in bed about every hour or half an hour. So we went from about 10 times a night to about 5. He uses a memory foam matress and has a hospital bed that vibrates and even so will get nasty red marks on his hips after a little time. This is my question, I have read that some people will stay in the same position all night, that they are nor assisted at night, How is this posible? do they take sleeping pills? painkillers? are there other options?... isn't this dangerous. like if you can't feel the pain you don't move and then are morre likely to get pressure sores?
Andres will not take even an aspirin, he is very tough but he is also very uncomfortable most of the time even though he has a new chair equipped with an alternating pressure air cushion and it is practicaly covered in sheepskin. He has a lot of position related pain. How do people deal with this?
Everything about his positioning which he also needs to be assisted with constantly is extremely precise, to the point that no one is able to help him unless he is rigurously trained before. I have al but given up that a nurse can learn what is needed to spend the night with him, the only other person who can is his father, he is coming one night a week and also gives me a free day. The thing is Andres needs someone (well trained) around him all the time, since he can't talk it has to be someone that understands his signals etc. MAinly that is me.
Is there anyone out there trying to do this without the alopathic medicine? if you use painkillers and other things, what is your experience with them.
He has said he wont use any ventilation support and is already having some problem with breathing, I can't help worrying that he will suffer.
This post is pretty long so I will ask about other things later, thank you for reading this and I would really apreciate any feedback.
Thank you,
Citlalli
