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roxie

New member
Joined
Aug 29, 2008
Messages
1
Reason
CALS
Diagnosis
08/2006
Country
US
State
ny
City
amherst
Hi- This is my first post, I have been reading for a while and am hoping I can get some suggestions. My husband Rick was diagnosed with als in august of 2006 and we have been dealing with it one day at a time, trying to maintain a positive attitude and keep life as "normal" as possible for our family. We have 5 children-1 boy 21 and 4 girls 19, 16, 14 and 12. They have helped with his care but as the disease progresses it gets more difficult and patience levels are wearing thin. I work 2 partime jobs so the i have flexibility but I am finding it almost impossible to work-but if I don't work we lcannot afford luxury items-ie: our home, food. I have spent hours on the phone trying to find home care but to no avail-they will be happy to put him in a home and pay for that but no help is availbale to keep him in our home and a part of our family. I have contacted ALS, MDA, medicare, blue cross, hospice and our doctors - we earn too much to qualify for medicaid so non of the agencies can provide any help. We can do private pay but an aide who cannot feed or suction him starts at $22/hr?(there goes the luxuries-home & food).The only family member is his 75 year old mother who cannot meet the physical demands necessary to take care of him.He decided on the trach in July and it really has been a turning point-instead of waiting for him to die we know there is a future and we are all learning to live again. Rick still loves life , his smile still lights up a room and even though he cannot speak a word he communicates thru his eyes-we all know exactly what he wants! We have all learned so much from this and this is hardest thing we have had to overcome.

I would truly appreciate any suggestions you may have so I can keep us all together!
Sorry for being so long winded- but thank you for your patience and I look forward to hearing from you-Cindy
 

Shane the Pain

Active member
Joined
Jul 12, 2008
Messages
97
Diagnosis
05/2007
Country
US
State
CA
City
San Diego
Social Security

Hi Roxie:

so sorry to hear how hard it is 4 you. i applied & was approved for SS

it's not alot but it sure helps. then you're eligible 4 medicare part

A & B, so you might save money on health insurance. you probably

know all this already. lastly, i heard of a group called ALS Angels,

maybe there's one by you ?

good luck & God bless you,

Shane
 
Joined
Mar 31, 2010
Messages
19
Reason
CALS
Country
US
State
Ca.
City
Yuba City
hello, i personaly believe that thier is somone out there that god has out thier 2 help you my personal beliefe is that if you have a heart to heart talk with him about it it and tell him exactly what you need ( of course he alredy knows) he will send you your helper, that help will more than likely be in need of something you will have that he needs and it will be a trade off so to speak' it will all fall imto place just remember when it does to tell know it was him who sent the person and dont be shy about telling all//i believe he injoys gettn the crdit for things like that. that is my advise. he is the heavenly creator who can do all...


Bye
 

JOSIEM02

Distinguished member
Joined
Aug 7, 2009
Messages
133
Reason
CALS
Country
US
State
PA
City
waynesboro
Roxie, I am sorry you are going thru this. I know exactly how it is to hit a wall everytime you turn around. My mother in law's insurance wouldn't cover in home care. We did get an aide thru our local ALS clinic but like you, she couldn't suction or do her feeding tube and that was what we needed. Try your local Office of the Aging. We were waiting on a PDA Waiver that would have provided about 5 hours of in home care but until that would have come thru Barb decided she needed a nursing home so we could work, she lived with us. The process is long but worth a shot, and call Hospice, they may be able to help with some. Josie
 

adkdreams

Active member
Joined
Jan 8, 2010
Messages
67
Reason
CALS
Diagnosis
08/2007
Country
US
State
New York
City
Bloomingdale
Check around your area I just learned of a group of nurse's who volunteer their time to help people in such situations and charge nothing. I have not used the service be such a weight is lifted knowing their are people out there who really care and try to help. The best of luck to you.

Jodi
 
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