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As Am Adult With SMA, How Does One Deal With A Caregiver Who Treats You Like A Child Especially When Rely On Them For Basic Needs?

As Am Adult With SMA, How Does One Deal With A Caregiver Who Treats You Like A Child Especially When Rely On Them For Basic Needs?

I am 40+ years old, have held jobs, am reasonably intelligent, but I still look like a teenager aside from a few grey hairs. My dad is 83, a little hard of hearing. My attendant, the only reliable attendant I can find in the entire state, is nearly the same age, is physically in much better shape, but is even harder of hearing. So I was dealing with my father who gets very grouchie when he hasnt eaten trying to help him with cooking which he doesnt know how to do and caregiver of course walks… read more

A mySMAteam Member said:

First let me say that I am incredibly sorry for the way you are being treated.
Have you tried talking to them about their treatment of you? Maybe explaining to them that just because you have SMA it doesn't mean that you don't have feelings and also that you're not an adult who is capable of doing some things without help such as using your brain.
My husband is 46 yrs old with sma type 3 and I'm his caregiver however, there has been a time or two we've had to have someone come in and help while I went to work or whatever. Never in a million years would he allow any type of disrespect like that but more importantly, I will never allow anyone to mistreat him
Maybe try recording their way of treating you somehow. That way they can see how they are.
Does your state not have some kind of program that helps find caregivers?
Best of luck to you.

posted 3 months ago
A mySMAteam Member said:

Totally understand how that goes with unreliable care attendants, one's that you really don't want to be alone with or need to be either, or one's that actually really show up early or on time every day and then do absolutely nothing. It's definitely not easy finding good help (my husband got lucky with finding his caregiver,,ME. LOL)

And white it is EXTREMELY tiring some days and hard to find the time to take care of themselves,,it by no means gives anyone the right to be short tempered, rude or mistreat anyone.
I know 1st hand exactly how exhausting it can be. My husband has been in the hospital 18 times and 15 of those involved surgery of some sort which means several days at the hospital for us both (I do not ever leave him for any length of time bat any hospital) so yeah I totally understand how tired they probably are,,With that being said-- I WONDER HOW TIRED MY HUSBAND IS? OR HOW TIRED YOU ARE? I know that fatigue is a huge problem for y'all with sma anyway so I'm pretty sure it's a REALLY good chance y'all have us whooped with being tired and worn out.

posted 3 months ago
A mySMAteam Member said:

Maryland outsources its disability advocacy to private companies which are suppose to assist with obtaining services and is overseen by the Maryland Department of Health. The private agency that is suppose to look out for finding attendant services and coordinate with my attendant agency is Beatrice Loving Heart. So far, they have contacted every agency my waiver program will pay for and not a single agency in the entire state can find anyone willing to come out for the nominal pay and hours the state will pay for through the waiver program. Ironically, because i can't find coverage for the few hours i do have, they won't grant me more hours. I really can't blame my dad or attendant who is covering for their behavior as dad's health is poor himself and the poor attendant whom is helping out is so overworked covering me and another client who can't get help, he is practically exhausted with no time to take care of his own needs. As for the department of health, division of disability services...they wont even return my calls or answer my emails. i know indirectly they are aware of the situation as my coordinator keeps taking it up the chain of command...but they wont do anything until i am seriously injured or my dad is and it can be traced to their negligence. My agency has tried to hire four attendants in the last six months. One had a record for domestic abuse, was on parole and stole from me. The state fired him. Three accepted the job and never showed, only one communicated later she couldn't accept the job because the cost of gas was too high to drive out.

posted 3 months ago
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