Friday, August 12, 2016

Help Is Only Available In Certain Zip Codes; Get Pregnant To Get Help

Government and private organizations claim they're there for you when you need them.

Once inside their doors, you find mostly lip service and very little real assistance.

Each one has parameters, limitations, scopes and directives.

In plain language that simply means they don't have the time, the money, the staff or whatever to help you and me when we need it.

Everything's on the internet, you're told

Finding the correct site, the one that applies to your situation, going through all the steps and then discovering you have to submit a form, make a call or visit in person with specific materials that may or may not qualify you ...

All at a time when money is most likely very tight, time is not available because you're care giving a person who may be mentally and/or physically incapable or incapacitated (let alone two people as I was doing) ...

Money goes quickly when no one can work because they're 24/7 caregiving for two loved ones and their needs surpass the "allowances" given by agencies and programs that might be available FOR a very limited time AND to a specific level or amount.

There's help, all you need to do is reach out and let us know ....

Really?  Where?  One visit to "assess" someone by your organization? 

Then you're told if you're "being considered" by one agency, you aren't eligible for being considered by another. You'll have to wait and see. WAIT AND SEE????  

The need is now. The challenges are getting greater. 

What and where is the help, the assistance for someone who's found themselves in a life situation for which their "self supporting never asking for anything" life has not prepared them, not provided information and does not include "knowing the system" or "abusing it" as they were taught so many choose to do. 

When Seeking Provision of adult pads for incontinence.

Was told to go to the local Area on Aging who had allocations for this purpose. 
They'd gone through the money set aside for this purpose; it was August.
They didn't know anyone else who made them available.

Don't like to compare in this way but babies and infants have the same need and yet there are organizations set up specifically for this purpose. 

Why don't we recognize there are others, the aged and those with physical challenges, also in need of these supplies?

When Seeking Help understanding Mom and trying to provide the best personal and medical care.

Feeling there was possible Alzheimers. 
Had no idea there were various types of Dementia.
Went to the Alzheimer's Association. 

Interviewer said AZ could not be fully diagnosed without an autopsy --- this was 2010, times have changed somewhat and some Doctors will provide a diagnosis and there are new ways to scan the brain and look for this possibility -- that is "if" you can afford it, "if" the insurance covers it and "if" the person agrees to having the procedure. That's a lot of "ifs"

Second Visit to Alzheimer's Association and another conversation with another "representative":

I'd discovered there were other types of Dementia.

Found what little information there was on Lewy Body Dementia at the time because Mom's symptoms didn't match Alzheimer's but they did Lewy Body Dementia.

"Counselor" didn't know about LBD. 
Suggested books and pamphlets. 
And around in circles we continued to go as we spent precious time we didn't have and money we barely had to try to get help for our loved ones.

Interviewer listened to my pleas for help and concerns about Julia H. 
Guided me to books and pamphlets. 
No other direction.

What help was that?

While I tried to care for two adults at the same time, daughter realized help was only going to be given through our hands and so she quit college. Junior year. 

So much potential. She'd achieved so many awards and opportunities now shelved as she dropped out and looked for minimum wage jobs, all she could qualify for, while helping me with the growing needs of two people needing highly individualized care giving.

Institutionalize them?  We couldn't. We didn't see the path ahead and all its challenges for both of them. It's not that clear when you move from day to day and you're told "if he gains enough weight, we can go back in and repair and close the opening(s)". And, with Mom, it was "all older people have these times" and "she's doing so well for her age". 

It's what they don't tell you, what they fail to tell you and how they do not come alongside with anything more than verbal remarks, comments and not even specific suggestions.

POSSIBLY BECAUSE WE ONLY HAD MEDICARE for husband and Medicaid for Mom?

We are so uninformed as a society as to the reality of what is and is not covered by these two plans. 

We do not know what is "allowed" and what is "covered" and where and "for how much".

We live in "The Greatest Country On Earth" and we truly have the worst, the least and the most secretive medical system where the only way you truly know, on government "provided" health care or individually purchased, what's included, what's limited and what's not allowed is when you actually need it and are provided with a service that's less or none at all and question the Dr's "recommended" procedure for your needs.

Did you know many times these "recommendations" are based on what the Insurance will cover and not on what would best be done?

Savings gone. Part time jobs with no guaranteed hours and no guaranteed income,
daughter tries to get us help by personally visiting a government agency seeking assistance including Food Stamps.

They could offer nothing. They suggested she try a food bank. 

Do you know what else was recommended? 

If she was pregnant, she could get support and assistance. 

Yes. That's correct. She was actually being advised to get pregnant out of wedlock if she wanted "help". Then, she, at least, would be taken care of. 

How demeaning and demoralizing can we be as a society to see this as a solution when all we asked for was a little assistance to get past these challenging times we truly believed were surmountable and would end positively.

This amazing human being is trying to help her family and she's told -- have a baby, bring another life into a home struggling to overcome medical and financial challenges.

She and we "lived in" a home located in a zip code that wasn't considered "within the parameters of programs that were "designed", we were told, for defined parameters/zip codes.

Health challenges know no boundries. 

There are no Counties, Cities or areas where you can live assured what happened to us, what happens to others, cannot happen to you but there apparently are "lines of demarkation" when it comes to assistance either publically or privately.

This story happens every day. It may be slightly different but it's happening as I write and it will continue until we realize and recognize neighbors, friends and relatives of all ages are just steps away from impending disaster. 

We have survived. We are making it. But why did we have to make the journey in this way that would take so long and almost destroy us on the way?