Question about respirators and care at home (please help if familiar)
- Thread starter Pearl
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ramonadegraaf
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- bamfield
Hi, there,
I'd rather not talk about medical care systems.
what I really need information on is the day-to-day realities of caring for some one with bulbar onset needed a ventilator.
My brother, Ray, has full use of his limbs. Granted there is now muscle wasting in the hands. But he can still lift things, brush his teeth with his hands.
CAN YOU EXPECT the patient to be also help with the equipment?
He has a spouse but they have two very very needy kids (autisim etc.).
I'm his sister and can be available two days' a week.
so when they say 24/7; I'd think that his spouse can do her daily chores. if she needs to go downtown, well, Ray would go with.
right now we are being told that he'd have to go into a residential facility. but maybe in the future when the limb onset progresses.
but right now, I wonder.
are they just trying to push into considering not ventilating and a earlier close to his final chapter?
Ray is 49.
Ramona
Canada
I'd rather not talk about medical care systems.
what I really need information on is the day-to-day realities of caring for some one with bulbar onset needed a ventilator.
My brother, Ray, has full use of his limbs. Granted there is now muscle wasting in the hands. But he can still lift things, brush his teeth with his hands.
CAN YOU EXPECT the patient to be also help with the equipment?
He has a spouse but they have two very very needy kids (autisim etc.).
I'm his sister and can be available two days' a week.
so when they say 24/7; I'd think that his spouse can do her daily chores. if she needs to go downtown, well, Ray would go with.
right now we are being told that he'd have to go into a residential facility. but maybe in the future when the limb onset progresses.
but right now, I wonder.
are they just trying to push into considering not ventilating and a earlier close to his final chapter?
Ray is 49.
Ramona
Canada
Dave C
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- 03/2009
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I can tell you from my personal experience, Jennifer came home on a ventilator two and a half months ago. It was definitely more than i can do alone. Jen has Bulbar ALS, had a trache in December and we have twin 3 year olds.
We pay for Nurse care 10p to 10a, to the tune of $45 an hour, this may be less in areas outside of Chicago but is standard around here from my research. We were denied Medicaid because the Ventilator was an "option to prolong life", what ever that means. So we pay out of pocket. We moved in with her sister who cares for Jen and the twins during the day with the help of MANY other family members, and i can work.
She needs oral suctioning every 10 minutes (give or take), trache suctioning 4-5 times a day, all hygiene related activities, feedings, etc. Not sure what your PALS needs are but Jen is fairly disabled.
With all that said, it is worth it every night I watch the kids give her a kiss and tell her they love her.
We pay for Nurse care 10p to 10a, to the tune of $45 an hour, this may be less in areas outside of Chicago but is standard around here from my research. We were denied Medicaid because the Ventilator was an "option to prolong life", what ever that means. So we pay out of pocket. We moved in with her sister who cares for Jen and the twins during the day with the help of MANY other family members, and i can work.
She needs oral suctioning every 10 minutes (give or take), trache suctioning 4-5 times a day, all hygiene related activities, feedings, etc. Not sure what your PALS needs are but Jen is fairly disabled.
With all that said, it is worth it every night I watch the kids give her a kiss and tell her they love her.
handinhand
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Oh Dave, you are so caring. I know how much your wife must love and appreciate you.. Linda
LauraW
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2007...lol. I was reading and wondering why Joel did not pop on about this....he he. I had a lot of "professionals" tell me that I could not do this at home. Luckily, I did not listen. It is a 24/7 but you don't have to be right at their side. Mom has a bell, and she rings it when she needs me. Medicare pays for ALL of her supplies.
Hansell227
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Dave, My prayers are with you and your family. My children are grown and are able to help me out.I cannot imagine if the were dependant on me to.My husband is completely on a paralysised and is on a ventilator and is completely bedridden.He has upper and lower ALS.He was diagnosed. with ALS 5 years now.It is difficult but is well worth it. For our 28th anniversary my son in law helped me make a bed that is level with my husband hospital bed and is on wheels.I push them together at night and pull them apart during the day so nurse can help me.On weekends they stay together. My children and there spouses and my grandchildren snuggle next to Mike and watch T.V. He loves that!
I went to Walmart when they were clearance tvs and my son in law hung a 42" flat screen TV. so he could watch t.v. We hung his hawaiian shirt collection on the wall and over every shirt is a photo of him wearing that shirt.
I want so much to build a house that would have 4 or 5 bedrooms like this so that I could start a group home for ALS patients.So husbands or wives could work.Maybe even a couple of childrens rooms.I have been working on a plan and praying God will help me find away to make it happen.I have a Doctor that comes to our house.A Dentist.A podiatrist.I have the best Church in Atlanta for support.I believe God is leading me.Mike and I met in 1982 and I was 17, I worked at a nursing home and started working with lift and quadepelgics .Before I knew it I was working with all the lift etc.In 2005 Mike was diagnosed. with ALS. We were devastated.Things progressed so fast and seemed to happen on a date I will always remember.Dx.on Jan.1,2005,stomach tube a day after his birthday Jan.20th 2006, lung collapsed on my grand daughters birthday July 3, 2007.My husband sailboat was 227.We moved in an apartment and they have post office the box was 227.The ambulance that came to get my husband was Metro 227.They took him to Wendy hill for me to be trained on the ventilator he was in room 227.Went to the bank to get a safety deposit box to put important papers in they gave me box 227.My breaks went out on my van and went to pep boys it cost 227.45 my washer quit cost for repairs were 52.27. I believe God is either leading me somewhere or to something?Can not figure it out?A nurse was pointing out that Mikes birthday is Jan (which is 1 month) 19 day=20 Year 61 (6+1)=7=27. Anyone else have any ideas? I have kept all the receipts.
I went to Walmart when they were clearance tvs and my son in law hung a 42" flat screen TV. so he could watch t.v. We hung his hawaiian shirt collection on the wall and over every shirt is a photo of him wearing that shirt.
I want so much to build a house that would have 4 or 5 bedrooms like this so that I could start a group home for ALS patients.So husbands or wives could work.Maybe even a couple of childrens rooms.I have been working on a plan and praying God will help me find away to make it happen.I have a Doctor that comes to our house.A Dentist.A podiatrist.I have the best Church in Atlanta for support.I believe God is leading me.Mike and I met in 1982 and I was 17, I worked at a nursing home and started working with lift and quadepelgics .Before I knew it I was working with all the lift etc.In 2005 Mike was diagnosed. with ALS. We were devastated.Things progressed so fast and seemed to happen on a date I will always remember.Dx.on Jan.1,2005,stomach tube a day after his birthday Jan.20th 2006, lung collapsed on my grand daughters birthday July 3, 2007.My husband sailboat was 227.We moved in an apartment and they have post office the box was 227.The ambulance that came to get my husband was Metro 227.They took him to Wendy hill for me to be trained on the ventilator he was in room 227.Went to the bank to get a safety deposit box to put important papers in they gave me box 227.My breaks went out on my van and went to pep boys it cost 227.45 my washer quit cost for repairs were 52.27. I believe God is either leading me somewhere or to something?Can not figure it out?A nurse was pointing out that Mikes birthday is Jan (which is 1 month) 19 day=20 Year 61 (6+1)=7=27. Anyone else have any ideas? I have kept all the receipts.
Bobbie,
You have very useful information! How did you find out about the CSSP program and are there financial limits to qualify? In asking if we could get some sort of help, we were told no by the social worker at Emory.
You have very useful information! How did you find out about the CSSP program and are there financial limits to qualify? In asking if we could get some sort of help, we were told no by the social worker at Emory.
Hansell227
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- May 2, 2010
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- CALS
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- 01/2005
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- Woodstock
Hello Brooksea, I do not even know if Emory knows about it.We stopped going to emory due to what happened to my husband when we had his feeding tube in.The doom and gloom they also make you feel.We have found a lovely Dr.Neely who come to our home.She was a Emory graduate.We live in Woodstock.Listen I really do not have the guidelines.But it would be worth a try.We didn't have anything.I do not know what financial state you are in.With ALS it is treated a little different.When you are on CSSP you automactically recieve medicaid which pays the other 20% that medicare does not.What part of Georgia do you live? the number to CSSP program is- Atlanta Regional Commission In take line~404 463-3244(CSSP?Source HCBS) I found these programs by accident.I want to pass them along.I was told by my social worker that they were accepting new applicants now.Contact them.Do not take no for an answer.Keep calling back until you talk to someone that can help you.Please check into to EZ Keys computers systems now.Record your voice on a tape recorder so they can make a copy.Unfortunately I did not have anyone tell me that.If you have grandchildren read a book on tape for them or better yet on Video and have it put on DVD at wolfe camera.My granddaughter says all the time.I can't remember poppie's voice.This really upsets her.Even my daughter has mentioned this.Once you get on CSSP- then ask about ACumen (look up on internet.You hire the people and you are in charge of who comes in go in your house.If you get this far email and I will even help you do this I have come up with a formula easy to do payroll. Do not be scared about it I know nothing about this .They do it all.Also I can send you pictures of how I have set up Mike's room(my sweet husband). It is amazing how you can come up with things when you have to. Hope this helps.~Bobbie
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