I'm a caregiver for my mom...
I'm a caregiver for my mom who is 3 years post brain injury.
As far as advocacy; if my father and I didn't insist on everything and fight for every inch, the doctors and nurses were content to call mom a vegetable and insisted more than once that we forget about homecare and place her in a nursing home.
We rejected this idea. One, because my mother and I had worked in the ones around here and KNOW what REALLY is the attitude of many working in and for them (around here-I can't speak for other places).
The case manager, made promises that she had no authority to make according to the insurance company. They wanted her to be examined by a physiatrist to prove to us that she must be put in a nursing home and rehab was useless and there was no way we could care for her....
My father, myself and the case manager were there when he gave the results...the case manager was so angry with the results, her face actually turned red and she refused to pay the doctor (in fact they never did; WE were billed for it!!!). He suggested a Brain Injury Specialist Rehab. She was definitely NOT pleased.
We are still (3yrs post) trying to get the insurance company to pay for the rehab that brought her from bedridden to walking that the insurance company said was unnecessary because she would never be more than a vegetable!!
You have to be your loved one's advocate...you can't depend on anyone else. No one will answer questions about price...they only want to know about your insurance. I thought things should be priced, not depend on who was paying what the price was. I go to the store for bread it's 89 cents whether I'm paying or my husband, cash or check....
Expect to have to look for and find answers for yourself because you will be patronized and get half-truths or simply get unknowledgable people with good intentions--unfortunately this is as bad as and sometimes worse than the alternative!
Our homecare was cut off before the insurance ran out because the visiting nurse felt she was progressing well. I still have to bathe her myself and change her diapers and keep her house clean and take care of my home and my 3 kids and husband and my father.
She cannot take care of herself and needs constant supervision and care. No amount of insisting could make it continue; we were simply dropped because she "progressed", but we still needed help...I later got a job in the same office as a certified nurses assistant and heard through the grapevine that it was their intent that I should burn out so she could be placed in a nursing home without family resistance. This was an agreement made by her visiting nurse and the casemanager.
I am no longer employed there because I have seen similar things done to others and I was disgusted!
In my area there is no community help that I have found unless you are on welfare or only have "x amount" of resources. My father and mother own things jointly...if things were disposed of solely for her care where would this leave him in his time of need? It needs to be there for both of them. She is only 54 and so the senior services do not apply. Mom is one of those who fall through the cracks. I am doing my best to care for her on my own while my dad works. He is 67 and is afraid to retire for fear he will no longer be able to meet the bills---unfortunately his fears are well-founded.
I take care of mom 6am-8ish pm 7 days a week. When my father had surgery I took care of both of them. In the beginning everyone will seem to want to help out, but eventually that will die and it will be you and your loved one, Period, no one else unless you are supremely lucky!
The only uplift I have found is the local TBI group and more recently the e-mail group. There at least you know you are not isolated and there are others in similar situations and you can have a gripe session between yourselves and sometimes that helps. If there are any REAL solutions out there I welcome them with wide open arms....
In three years of searching and studying I have yet to find it in my area . I have contacted every official and "unofficial" office and person I can think of, to no avail. I have found if you don't do it yourself it doesn't get done. I am attempting to find the info on Interfaith Caregivers, which is an organization that helps train aids and such to help out caregivers for ADLS and respites and such. If there is no Interfaith Caregiver in your area they will help you to set up a chapter. There is none here so I am looking for their info or number so I can contact them and get some set up in this area to help those caregivers in situations similar to mine.
This is my experience as a caregiver.
I am also attempting my masters in Nursing (FT in the eves), wife of 10 yrs and mother of 3 boys (8, 5, 3 yrs old). (Yes I was VERY pregnant when mom came down with encephalitis---it took the doctors some time before they even knew what it was!)
Attorney Gordon S. Johnson, Jr.
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