Mark's wife
New member
- Joined
- Jun 3, 2010
- Messages
- 4
- Reason
- CALS
- Country
- US
- State
- AZ
- City
- Mesa
Hello everyone,
I signed up here after my husband was diagnosed in March of 09 but I have never posted before. He is 32 and can only move his head a little and can blink, smile and mouth some words. He uses a dynavox to communicate. He spends most of his time in bed because his power chair is not very comfortable for him and he can't drive it anymore anyways. He wears a bipap 24/7. He needs the cough assist and suction every hour or so, sometimes more often. He got a peg tube about a month ago and I feed him whole foods blended in a vitamix. We have five children, the youngest of which is 8 months old, but I have always been his primary caregiver. His parents and siblings have given a half-hearted effort to learn how to care for him and give me a break, but it has always been a disaster and has come to the point that it is no longer safe for me to leave him for any length of time. The hardest part for me is not being able to spend as much time with our children. My mother has come and stayed with us for weeks at a time and often takes the kids home with her when she goes home since she lives several hours away.
Now we are coming to the point where his doctors and nurses say he is "critical" and needs a vent and though he has said he wants to get one eventually, he doesn't want one yet. I don't know if he is reconsidering his decision or not, he is really reluctant to talk about it and it is hard for me to bring it up. I am afraid he will either have an emergency with the bi-pap or his dynavox while I am sleeping and we will not make it to the hospital (you can't just jump in the car and go).
But at the same time I don't think I have any more to give if he does get a vent. I am fiercely protective of my children and still nursing the baby. But I don't see how it is possible to care for them and my husband at the same time. We are just barely making it work as it is and my mom does a lot of raising them for me when I just can't leave him for a minute when they need me. But I know he is not letting his family anywhere near him. They are totally incompetent.
I am also getting a lot of stress from his parents wanting him to put in writing just how often they will see our children and all the things he wants his parents to be involved in their lives after he is gone. That whole scenario makes me crazy because they are acting like this is a pending divorce and they have rights to my kids. Of course they will always be a part of our lives, but I will not be made to feel I have to hand over my kids to them every other weekend whether I want to or not.
thank you for allowing me to vent and reading this far. I am just wondering how those with young families deal with everything, not to mention how do you tell your little kids what is happening to their dad? Just how intensive is a vent and does anyone think it is possible for to continue doing everything?
Elizabeth
I signed up here after my husband was diagnosed in March of 09 but I have never posted before. He is 32 and can only move his head a little and can blink, smile and mouth some words. He uses a dynavox to communicate. He spends most of his time in bed because his power chair is not very comfortable for him and he can't drive it anymore anyways. He wears a bipap 24/7. He needs the cough assist and suction every hour or so, sometimes more often. He got a peg tube about a month ago and I feed him whole foods blended in a vitamix. We have five children, the youngest of which is 8 months old, but I have always been his primary caregiver. His parents and siblings have given a half-hearted effort to learn how to care for him and give me a break, but it has always been a disaster and has come to the point that it is no longer safe for me to leave him for any length of time. The hardest part for me is not being able to spend as much time with our children. My mother has come and stayed with us for weeks at a time and often takes the kids home with her when she goes home since she lives several hours away.
Now we are coming to the point where his doctors and nurses say he is "critical" and needs a vent and though he has said he wants to get one eventually, he doesn't want one yet. I don't know if he is reconsidering his decision or not, he is really reluctant to talk about it and it is hard for me to bring it up. I am afraid he will either have an emergency with the bi-pap or his dynavox while I am sleeping and we will not make it to the hospital (you can't just jump in the car and go).
But at the same time I don't think I have any more to give if he does get a vent. I am fiercely protective of my children and still nursing the baby. But I don't see how it is possible to care for them and my husband at the same time. We are just barely making it work as it is and my mom does a lot of raising them for me when I just can't leave him for a minute when they need me. But I know he is not letting his family anywhere near him. They are totally incompetent.
I am also getting a lot of stress from his parents wanting him to put in writing just how often they will see our children and all the things he wants his parents to be involved in their lives after he is gone. That whole scenario makes me crazy because they are acting like this is a pending divorce and they have rights to my kids. Of course they will always be a part of our lives, but I will not be made to feel I have to hand over my kids to them every other weekend whether I want to or not.
thank you for allowing me to vent and reading this far. I am just wondering how those with young families deal with everything, not to mention how do you tell your little kids what is happening to their dad? Just how intensive is a vent and does anyone think it is possible for to continue doing everything?
Elizabeth