Jason's Dream
Distinguished member
- Joined
- Sep 5, 2010
- Messages
- 310
- Country
- US
- State
- As Usual
- City
- On My Own
Hey Everyone ~
My name is Becca (age 31).
My husband, Jason (age 37), was diagnosed with ALS in the beginning of May 2010. His first onset was in December 2009. We have a 2.5 year old son, William, and are expecting his sister, due December 12, 2010. This was a twin pregnancy, but we lost one of the twins early on. We also lost another baby to miscarriage in Novemeber 2009.
Jason and I were both college students. Thats how we met. We lived together for a year and got married in December 2004.
Jason's first onset was tingling and weakness in his left hand. He is left handed. At first he thought that it was just the way he slept on it, and so we tried various pillows and nothing seemed to work. In January (2010), his speech became slurred. It was almost as if he was talking like he was drunk. In February (2010), he started having the pseudo-bulbar effect on his emotions. In March (2010), he started falling. By this time we had withdrawn from classes, and I had kept working, but now couldn't keep working with him falling and trying to take care of our 2 year old. In March (2010), with no medical insurance, we set out to try and find out what was going on. In May (2010), with a thorough neurological exam and listening to his account of the progression of his symptoms, and an EMG to confirm it, he was diagnosed.
His doctors are saying he is progressing more rapidly then the average ALS patient. I can still remember word for word, the doctor telling of how all our hopes, dreams, goals, for our future were gone. "He doesn't have 20 years, not 15, 10, or even 5. At best you are looking at 6 months to 2 years tops. I'll leave you guys to process this." .. and the doctor walked out of the door. That same day, Jason wanted to tell his family all at once, all at the same time. So on top of processing this nightmare, I began to call each of his family members, one by one, to have a family meeting that same evening. I had to take charge, I had to be Jason's voice, as with his emotional responses and speech being soo bad, .. I had to tell his Mom.. his family, that he is dying.
Jason now walks with a walker or a cane. He falls alot more. He has a patient lift, hospital bed, and his motorized wheelchair is in the process of being made. He also is on a 45 day wait to get a computerized speech device that will let him select icons and communicate to us.
We have already pre-planned his funeral, done power of attorney, last will, and living will, while Jason could still communicate his wishes. He has written notes to William (via his laptop).
We have taken a couple of trips, and basically are trying to shoot the moon and let Jason do what he wants while he can. I don't care the cost, I'll worry about it after he is gone.
With this being a high-risk pregnancy, its made it difficult to care for Jason. I bathe him, dry him, dress him, shave him, wipe his butt when he poops, empty his by-the-bed toilet, give him his medicines, tuck him into bed, cut his food, feed him, hold drinks for him so he can drink (as his hands are soo shaky), translate when he is trying to talk to others, etc.
Inbetween taking care of him, of our 2 year old son, this high risk pregnancy, making sure we make it to both of our doctor's visits, and therapies, and ultrasounds, keeping our bills up to date, doing all the legal stuff, getting ready for our 2nd child and a newborn schedule to boot... I am sooo wore out!
On top of that, his family has been a pill to say the least. I have bided my time, for his sake, but I've had enough. They have not been any help, never respect me, respect us, or even Jason. His mom loves to make this disease and everything connected all about HER. She now goes to the church we attend, to gain sympathy and attention from strangers. She doesn't call first and see if he is awake (as he sleeps in and takes naps more frequently) or if today would be a good day for a visit. She shows up uninvited, and when confronted with a "please call first, for Jason's sake".. she blows up and makes it all about her. We have chosen not to make the time we have left about the disease. We don't want to become angry and bitter. We want to shoot the moon and enjoy that time. She comes over and tells me "It's soo hard to see him this way. I just can't stand to see him this way...etc". I want to scream at her, "Then don't come over. If you can't come and enjoy the time you have with your son, and make it about the time we have together, instead of the disease, then we don't want you here,... LEAVE!" She (nor the rest of his family) is helping AT ALL! His grandfather had the gall to ask Jason what he was doing with HIS grill (like after he is gone). We made that purchase TOGETHER, it is OURS, not his, and how dare he already try to claw at Jason's limited remains!
It is soo hard to even have a chance to get excited about our little girl coming in December, as between worry about her health, taking care of Jason, taking care of William, and keeping up on everything else. We are in our 30's, just starting out in life. We shouldn't be also having to prepare and deal with "end-of-life" issues.
I don't feel I have a moment's peace to myself. I feel like I have lost myself in this. That we have lost our role in a relationship and suddenly I have swapped roles from wife to caregiver of both boys. I miss our relationship. I miss Jason. At times, it feels like I am only taking care of the shell of the person he use to be, yet I know by reading and all, his mind is still in tact and all... I just miss him... I miss us. I miss the life we use to have, and all our hopes and dreams and goals. I wish someone would wake me up from this hellish nightmare and soon. I feel soo alone... sooo abandoned and overwhelmed.
Sorry to unload. Just don't know where to turn to anymore.
Thanks for listening to me.
~ Becca
My name is Becca (age 31).
My husband, Jason (age 37), was diagnosed with ALS in the beginning of May 2010. His first onset was in December 2009. We have a 2.5 year old son, William, and are expecting his sister, due December 12, 2010. This was a twin pregnancy, but we lost one of the twins early on. We also lost another baby to miscarriage in Novemeber 2009.
Jason and I were both college students. Thats how we met. We lived together for a year and got married in December 2004.
Jason's first onset was tingling and weakness in his left hand. He is left handed. At first he thought that it was just the way he slept on it, and so we tried various pillows and nothing seemed to work. In January (2010), his speech became slurred. It was almost as if he was talking like he was drunk. In February (2010), he started having the pseudo-bulbar effect on his emotions. In March (2010), he started falling. By this time we had withdrawn from classes, and I had kept working, but now couldn't keep working with him falling and trying to take care of our 2 year old. In March (2010), with no medical insurance, we set out to try and find out what was going on. In May (2010), with a thorough neurological exam and listening to his account of the progression of his symptoms, and an EMG to confirm it, he was diagnosed.
His doctors are saying he is progressing more rapidly then the average ALS patient. I can still remember word for word, the doctor telling of how all our hopes, dreams, goals, for our future were gone. "He doesn't have 20 years, not 15, 10, or even 5. At best you are looking at 6 months to 2 years tops. I'll leave you guys to process this." .. and the doctor walked out of the door. That same day, Jason wanted to tell his family all at once, all at the same time. So on top of processing this nightmare, I began to call each of his family members, one by one, to have a family meeting that same evening. I had to take charge, I had to be Jason's voice, as with his emotional responses and speech being soo bad, .. I had to tell his Mom.. his family, that he is dying.
Jason now walks with a walker or a cane. He falls alot more. He has a patient lift, hospital bed, and his motorized wheelchair is in the process of being made. He also is on a 45 day wait to get a computerized speech device that will let him select icons and communicate to us.
We have already pre-planned his funeral, done power of attorney, last will, and living will, while Jason could still communicate his wishes. He has written notes to William (via his laptop).
We have taken a couple of trips, and basically are trying to shoot the moon and let Jason do what he wants while he can. I don't care the cost, I'll worry about it after he is gone.
With this being a high-risk pregnancy, its made it difficult to care for Jason. I bathe him, dry him, dress him, shave him, wipe his butt when he poops, empty his by-the-bed toilet, give him his medicines, tuck him into bed, cut his food, feed him, hold drinks for him so he can drink (as his hands are soo shaky), translate when he is trying to talk to others, etc.
Inbetween taking care of him, of our 2 year old son, this high risk pregnancy, making sure we make it to both of our doctor's visits, and therapies, and ultrasounds, keeping our bills up to date, doing all the legal stuff, getting ready for our 2nd child and a newborn schedule to boot... I am sooo wore out!
On top of that, his family has been a pill to say the least. I have bided my time, for his sake, but I've had enough. They have not been any help, never respect me, respect us, or even Jason. His mom loves to make this disease and everything connected all about HER. She now goes to the church we attend, to gain sympathy and attention from strangers. She doesn't call first and see if he is awake (as he sleeps in and takes naps more frequently) or if today would be a good day for a visit. She shows up uninvited, and when confronted with a "please call first, for Jason's sake".. she blows up and makes it all about her. We have chosen not to make the time we have left about the disease. We don't want to become angry and bitter. We want to shoot the moon and enjoy that time. She comes over and tells me "It's soo hard to see him this way. I just can't stand to see him this way...etc". I want to scream at her, "Then don't come over. If you can't come and enjoy the time you have with your son, and make it about the time we have together, instead of the disease, then we don't want you here,... LEAVE!" She (nor the rest of his family) is helping AT ALL! His grandfather had the gall to ask Jason what he was doing with HIS grill (like after he is gone). We made that purchase TOGETHER, it is OURS, not his, and how dare he already try to claw at Jason's limited remains!
It is soo hard to even have a chance to get excited about our little girl coming in December, as between worry about her health, taking care of Jason, taking care of William, and keeping up on everything else. We are in our 30's, just starting out in life. We shouldn't be also having to prepare and deal with "end-of-life" issues.
I don't feel I have a moment's peace to myself. I feel like I have lost myself in this. That we have lost our role in a relationship and suddenly I have swapped roles from wife to caregiver of both boys. I miss our relationship. I miss Jason. At times, it feels like I am only taking care of the shell of the person he use to be, yet I know by reading and all, his mind is still in tact and all... I just miss him... I miss us. I miss the life we use to have, and all our hopes and dreams and goals. I wish someone would wake me up from this hellish nightmare and soon. I feel soo alone... sooo abandoned and overwhelmed.
Sorry to unload. Just don't know where to turn to anymore.
Thanks for listening to me.
~ Becca