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RANDOLPH30

New member
Joined
Jul 26, 2011
Messages
6
Reason
CALS
Diagnosis
04/2001
Country
US
State
NEW JERSEY
City
NEPTUNE
Hi everyone,
im new to this forum..i am a cargiver to a als patient for five years now. He has had als for ten years. Hes a father of three,and still resides in the home.. He is a young guy who started his own business hes a heart doctor. Very well known in his communty.. In the begining he was very hard to work for,he didnt care who he hurts or even cared if you did your best to please him. He is very controllling and demanding. With due time some things has changed..he has learn to accept and understand were here to help,and most would have left.. Hes on a feeding tube and on respirtory machine for breathing at all times,he also has machine to help with communication,which is controlled by his eyes,works well. When hes sick he has a couch machine to help mucus come up..and sits wit a pulse on his finger 24hours...he at last stage but doing well!
 
Welcome! You are a trooper having cared for him for five years. What are some of your coping skills/respite tricks?
 
I relize at some point he wasnt going to change,and up till this point we manged to work wit one another..he would put his fustration on us. So i treated him without feeling sorry. Treated him as if he was like you and i. A bond between aides and family is sord of better,hes jewish and very private and family wasnt use to new comers and stillcant cope wit his diease,well his younger boys are very infected by this. So im not just a caregiver to him,but i help wit family issues also,cause here theres alot!
 
May I ask how old the boys are?
 
19,14,15....all boys and their in family theorpy,syc for the oldest which is adhd,and the wife is also seeing a syc..when he knew the stages were occuring he was a smart man..he made sure family is taking care of finiacially in every way..still to this day he still controls whats needed. Even thou he had to sell his partnershiip of the his business,he still helps others with advice,but has so many family issues,but it all boils to his pass and how his sickness infected the family. He hide from his kids for a while and they were always told he will get better..
 
How sad that some choose to not be honest and up front about ALS. Too each is own, I guess.
 
Welcome. Sounds like you've seen plenty.

Ernesta, my thoughts exactly.
 
Exactly, i feel if your going to be in the home thur your stages ,and they see so much go on,,why keep that hidden! Your right to eaches own!
 
Yes,ive been a caregiver a long time my first als patient,private care long term...ive seen and learning alot at the same time!
 
The family is fortunate to have you, I can tell. Keep up the great work & I hope you are able to gain a lot from this forum.
 
Thank you ! And yes i will! Glad to share my experince with you all and more to come!
 
Welcome! You are a bravea and courageous man. Caregiving for ALS patients is one of the hardest jobs out there!
 
You must be a very strong individual! It's very hard dealing with all the aspects of ALS and then have a difficult pALS.

I'm sure you will have plenty to share with us all. Thanks for posting!
 
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