Texans 2014
New member
- Joined
- Sep 2, 2014
- Messages
- 9
- Reason
- CALS
- Diagnosis
- 09/2011
- Country
- US
- State
- TX
- City
- ARLINGTON
Every day seems more like "Ground Hogs Day". My son and I have been caring for our PALS since September 2011.
The first few years were not bad. He still could talk, walk, and eat. As the disease progressed, he decided on a feeding peg tube and much later, a ventilator. He is paralyzed completely from his neck down. Our son and I are not able to work out of the house. We do everything for him as I know he would do the same for me. He gets a nurse for about 20 minutes a week just to check on him and OT and PT twice a week, most of the time.
He has been in this state for 4-5 years now. We can't afford a VAN and we can't afford any RESPITE care. We even had an organization offer to pay for about 30 hours RESPITE care over 3 months. They required that the care would be from an licensed/insured company, who was certified in at home VENT care. We have not been able to find anyone in the DFW area. Can you believe that?
My PALS doesn't sleep well at night but takes cat naps almost all day long. My son and I have to have to stagger our sleeping and we do not even come close to getting enough. I finally talked my son into going back to college to finish his last year. One semester down, one to go. We have friends and family that call occasionally which we appreciate but we receive no help.
I have been married for 34 years and I signed up for this. I love him. My son, however, has given up his life for the last 5 years and it is breaking my heart. He is 28 years old and all of his friends are married, with children, or are getting married soon. Sometimes we feel like unpaid servants and it can be frustrating.
My PALS has a TOBI Dynovox (given by the State of TX-Grant) which we are thankful for. He gives us commands and orders all day, between his short naps, and all night sometimes up to 30 times a night. We understand that he is uncomfortable and can't do for himself but it can be overwhelming to us. We finally had to let him know that we would appreciate an occasional please or thank you. That did help some and he also explained to us that it is difficult sometimes for him to focus on the TOBI because his eyes are tired so he takes the shortcuts of short commands. We get that and at least we aren't arguing but we still are stressed and exhausted.
I know that this is happening for most everyone who is caring for someone with this horrible disease but I needed to Rant as well. I do not know what comes next or how long he will be with us, but I do pray to GOD that he gives us patience, compassion, and strength to continue to care for our PALS. I feel like I can be short with my PALS sometimes and it makes me feel like an Axx. I have nothing else to say other than I am glad that there is somewhere to express my feelings and not be judged. I do feel a little better.
The first few years were not bad. He still could talk, walk, and eat. As the disease progressed, he decided on a feeding peg tube and much later, a ventilator. He is paralyzed completely from his neck down. Our son and I are not able to work out of the house. We do everything for him as I know he would do the same for me. He gets a nurse for about 20 minutes a week just to check on him and OT and PT twice a week, most of the time.
He has been in this state for 4-5 years now. We can't afford a VAN and we can't afford any RESPITE care. We even had an organization offer to pay for about 30 hours RESPITE care over 3 months. They required that the care would be from an licensed/insured company, who was certified in at home VENT care. We have not been able to find anyone in the DFW area. Can you believe that?
My PALS doesn't sleep well at night but takes cat naps almost all day long. My son and I have to have to stagger our sleeping and we do not even come close to getting enough. I finally talked my son into going back to college to finish his last year. One semester down, one to go. We have friends and family that call occasionally which we appreciate but we receive no help.
I have been married for 34 years and I signed up for this. I love him. My son, however, has given up his life for the last 5 years and it is breaking my heart. He is 28 years old and all of his friends are married, with children, or are getting married soon. Sometimes we feel like unpaid servants and it can be frustrating.
My PALS has a TOBI Dynovox (given by the State of TX-Grant) which we are thankful for. He gives us commands and orders all day, between his short naps, and all night sometimes up to 30 times a night. We understand that he is uncomfortable and can't do for himself but it can be overwhelming to us. We finally had to let him know that we would appreciate an occasional please or thank you. That did help some and he also explained to us that it is difficult sometimes for him to focus on the TOBI because his eyes are tired so he takes the shortcuts of short commands. We get that and at least we aren't arguing but we still are stressed and exhausted.
I know that this is happening for most everyone who is caring for someone with this horrible disease but I needed to Rant as well. I do not know what comes next or how long he will be with us, but I do pray to GOD that he gives us patience, compassion, and strength to continue to care for our PALS. I feel like I can be short with my PALS sometimes and it makes me feel like an Axx. I have nothing else to say other than I am glad that there is somewhere to express my feelings and not be judged. I do feel a little better.
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