tifferlynn
Member
- Joined
- May 27, 2010
- Messages
- 16
- Diagnosis
- 01/2010
- Country
- US
- State
- IL
- City
- Divernon
This may silly but I need to know from others like us if having a benefit to raise money for mom who was diagnosed with onset ALS on Jan. 4, 2010, I believe the website refers to it as Progressive Bulbar Palsy ALS.
At that point she was just really weak but was still able to eat, talk and walk some. In March her ALS doctor explained that she was at a point where her breathing and swallowing were a real concern and advised her that it was time make the decision in regards to going on a ventilator and have the g-tube put in. He also explained with the vent and g-tube she would live about a year and without 3 months. So on March 18, 2010 she was placed on both.
She had been living on her own in West Virginia up until Nov. of last year when she went to go stay with (and now living at) my sister in St. Louis, MO., because she was getting worse and we didn’t know why. My sister has 5 great kids and an awesome husband (who all help when they can).
Now just after 5 months later she is not able to walk at all or talk. I know most of you already know what type and how much money it coasts just for the basic medical supplies and equipment and now she’s at the point that we have to get a lift installed, she just got her retro fitted wheelchair 2 days ago and as of right now we to rent a transport van for $100.00 to be able to take her to the doctor.
I live in Springfield, IL. Which is only about 2 hours from my sister’s in St. Louis, MO. And until we get the lift it’s really takes 2 people to take care of our mom. My sister is her main caregiver and is pretty much on her own with mom from Sunday evenings to Wednesday nights, because that’s when I get there. I currently work Monday, Tuesday and Wednesdays and then drive to my sisters to help till Sunday evening when I drive home to be at work on Monday.
We did just get 1 person hire (collage friend of my nieces) who can work for at fours a few times a week and Friday we have another interview with a woman that was referred to us by our coordinator from our local St. Louis ALS chapter.
The money we do have at this time. Mom does receive SS income of about $600.00 a month, she is on Medicare. She did sell her truck and got $20,000 (being used currently to pay for the girl we just hired as well as the other one we hire) it and that was her only asset expect for her house in West Virginia, which she is still making the house payment which is about $400.00 I think. he house is very old and deep in the country and we do have step sister living there that was mooching off my mom until my sister here and I put a stop to it.
My family is going to be raising money and participating in the Walk to Defeat ALS June 19th and June 26th. Then July 24th we have just started planning a benefit to raise money from mom personally. The money raised would be kept in its own account that will we are to make sure good records of where the money has been spent. We are wanting to use the money specify to help for her in home health nurse, van rental (so we could afford to rent it for fun not just doc. Appt.) out of pocket medical bills and there be an stipulation upon opening of the account stating that when she passes away then any money in account must be sent to the St. Louis Chapter of the ALS Association.
Ok, here’s my question. Is it ok to have benefit to raise money for my mom even though she still hasn’t liquidated her home?
Someone said they didn’t think was right since she still has a asset that has yet to be sold.
I the know I might not have to go into such great detail but I wanted to make sure people had all the information before giving your opinion because the opinion of the people on this website is very important to because all of you know what we’re going through and is you don’t think it’s right then be honest and why.
At that point she was just really weak but was still able to eat, talk and walk some. In March her ALS doctor explained that she was at a point where her breathing and swallowing were a real concern and advised her that it was time make the decision in regards to going on a ventilator and have the g-tube put in. He also explained with the vent and g-tube she would live about a year and without 3 months. So on March 18, 2010 she was placed on both.
She had been living on her own in West Virginia up until Nov. of last year when she went to go stay with (and now living at) my sister in St. Louis, MO., because she was getting worse and we didn’t know why. My sister has 5 great kids and an awesome husband (who all help when they can).
Now just after 5 months later she is not able to walk at all or talk. I know most of you already know what type and how much money it coasts just for the basic medical supplies and equipment and now she’s at the point that we have to get a lift installed, she just got her retro fitted wheelchair 2 days ago and as of right now we to rent a transport van for $100.00 to be able to take her to the doctor.
I live in Springfield, IL. Which is only about 2 hours from my sister’s in St. Louis, MO. And until we get the lift it’s really takes 2 people to take care of our mom. My sister is her main caregiver and is pretty much on her own with mom from Sunday evenings to Wednesday nights, because that’s when I get there. I currently work Monday, Tuesday and Wednesdays and then drive to my sisters to help till Sunday evening when I drive home to be at work on Monday.
We did just get 1 person hire (collage friend of my nieces) who can work for at fours a few times a week and Friday we have another interview with a woman that was referred to us by our coordinator from our local St. Louis ALS chapter.
The money we do have at this time. Mom does receive SS income of about $600.00 a month, she is on Medicare. She did sell her truck and got $20,000 (being used currently to pay for the girl we just hired as well as the other one we hire) it and that was her only asset expect for her house in West Virginia, which she is still making the house payment which is about $400.00 I think. he house is very old and deep in the country and we do have step sister living there that was mooching off my mom until my sister here and I put a stop to it.
My family is going to be raising money and participating in the Walk to Defeat ALS June 19th and June 26th. Then July 24th we have just started planning a benefit to raise money from mom personally. The money raised would be kept in its own account that will we are to make sure good records of where the money has been spent. We are wanting to use the money specify to help for her in home health nurse, van rental (so we could afford to rent it for fun not just doc. Appt.) out of pocket medical bills and there be an stipulation upon opening of the account stating that when she passes away then any money in account must be sent to the St. Louis Chapter of the ALS Association.
Ok, here’s my question. Is it ok to have benefit to raise money for my mom even though she still hasn’t liquidated her home?
Someone said they didn’t think was right since she still has a asset that has yet to be sold.
I the know I might not have to go into such great detail but I wanted to make sure people had all the information before giving your opinion because the opinion of the people on this website is very important to because all of you know what we’re going through and is you don’t think it’s right then be honest and why.
Diane
