Narrowminded
Extremely helpful member
- Joined
- Apr 30, 2016
- Messages
- 2,830
- Reason
- Lost a loved one
- Diagnosis
- 07/2007
- Country
- US
- State
- PA
- City
- Pittsburgh
Sometimes I even hate to do a rant like this because I feel like I'm whining. It's taken me 24 hours to get up the courage to put pen to paper, as it were.
Yes, I'm struggling. The why has multiple reasons. These are on no particular order.
1) sleep. Hasn't been going well. Mostly due to the fact that I still sleep in the same room with Brian, and he goes thru times when his machines, especially the vent seem extra noisy, even with earplugs to try and mute it a bit. I know lack of that just makes everything else seem all the more intense
2) April. Our little episode has really done a number on me. The kids too, esp DD which makes it even worse on me.
3) Brian being or having become what seems like a spoiled brat. I don't want anyone to take this the wrong way. We all agree that our PALS should be given as much control of their own lives/decisions as possible. However I think that sometimes there can be a detrimental side of that as well. Sometimes they get so used to being catered to that they forget that there is a human, that many times is at the other end of that request, is struggling just to make it through the next hour.
We all acknowledge in many cases, such as mine, their PALS can do nothing at all for themselves and if it were not for a speech device they would basically be considered locked in. We know that we are all they have and it pains our hearts greatly. However many times we feel as though we've become nothing more than a maid to deal with all their becks and calls and get no more respect than the ant crawling across a floor unwanted
I know I'm becoming burnt to a crisp. On wed i will be getting in touch with the therapist that DD has been going to, I know I need it. The trick will be finding a time that I can actually get there. I've been on meds in the past and had to get off of them, they were making me feel worse and I had a very difficult time coming off of them, so I'm not sure about that aspect.
I know I need help, finding a way to get that help is what is really causing issues. I definitely cannot afford to pay someone. If I can get the ACT 150 to pan out at all, I will than have to find someone on my own as it will only cover attendant care and since Brian is on a vent that means no agency will send someone in. That's my next difficult hurtle.
I've looked into a home, I cannot afford that and his disability all on it's own is just above the line needed for Medicaid to ever kick in no matter how much money we would spend down, not that there is a lot of that either. If there was I'd be using it to hire someone.
I feel so stuck, so alone, so burnt out and no where to turn. Not to mention trying to keep a somewhat happy face on for my DD so she will carry forward with her life.
Add to all the above, my back is still giving me issues. Yes I use the lift, but the lift doesn't work for washing his back. For that I have to push him onto his side and then hold him there with one hand, while washing with the other, it's quite the elaborate 2 handed ballet. Not to mention he's 6'2, his limbs are completely floppy but turning him is like doing a one handed tire flip. So then I take some ibu to calm the back, but that attacks my colon and makes me more weepy
I'm just so frustrated and have no where to turn
Ok rant over. If you made it thru all that, thank you
Hugs,
Sue
Yes, I'm struggling. The why has multiple reasons. These are on no particular order.
1) sleep. Hasn't been going well. Mostly due to the fact that I still sleep in the same room with Brian, and he goes thru times when his machines, especially the vent seem extra noisy, even with earplugs to try and mute it a bit. I know lack of that just makes everything else seem all the more intense
2) April. Our little episode has really done a number on me. The kids too, esp DD which makes it even worse on me.
3) Brian being or having become what seems like a spoiled brat. I don't want anyone to take this the wrong way. We all agree that our PALS should be given as much control of their own lives/decisions as possible. However I think that sometimes there can be a detrimental side of that as well. Sometimes they get so used to being catered to that they forget that there is a human, that many times is at the other end of that request, is struggling just to make it through the next hour.
We all acknowledge in many cases, such as mine, their PALS can do nothing at all for themselves and if it were not for a speech device they would basically be considered locked in. We know that we are all they have and it pains our hearts greatly. However many times we feel as though we've become nothing more than a maid to deal with all their becks and calls and get no more respect than the ant crawling across a floor unwanted
I know I'm becoming burnt to a crisp. On wed i will be getting in touch with the therapist that DD has been going to, I know I need it. The trick will be finding a time that I can actually get there. I've been on meds in the past and had to get off of them, they were making me feel worse and I had a very difficult time coming off of them, so I'm not sure about that aspect.
I know I need help, finding a way to get that help is what is really causing issues. I definitely cannot afford to pay someone. If I can get the ACT 150 to pan out at all, I will than have to find someone on my own as it will only cover attendant care and since Brian is on a vent that means no agency will send someone in. That's my next difficult hurtle.
I've looked into a home, I cannot afford that and his disability all on it's own is just above the line needed for Medicaid to ever kick in no matter how much money we would spend down, not that there is a lot of that either. If there was I'd be using it to hire someone.
I feel so stuck, so alone, so burnt out and no where to turn. Not to mention trying to keep a somewhat happy face on for my DD so she will carry forward with her life.
Add to all the above, my back is still giving me issues. Yes I use the lift, but the lift doesn't work for washing his back. For that I have to push him onto his side and then hold him there with one hand, while washing with the other, it's quite the elaborate 2 handed ballet. Not to mention he's 6'2, his limbs are completely floppy but turning him is like doing a one handed tire flip. So then I take some ibu to calm the back, but that attacks my colon and makes me more weepy
I'm just so frustrated and have no where to turn
Ok rant over. If you made it thru all that, thank you
Hugs,
Sue