05/29/2023
This is going to be a humiliating post for me to put up but at this point I feel like I have to. And it is not about just me.
I don't even know where to start but I will try to do my best.
This is not a post looking for pity or wanting anyone to feel sorry for anyone. It is a severe reality check and anyone going through what I'm going to describe will understand it
For me it started September 26th 2023 and did not end until May 9th 2023.
I am finally back to work after 5 months and it feels great. Seems like everything is falling into place except for one part. This is where many of you will understand
Anyone that knows me knows that I am a quadriplegic and I am dependent on people to get me in and out of bed drive me back and forth to work drive me to doctor's appointments meal preparation house cleaning and the list goes on.
I have spoken up only two fellow people who are as dependent as I am but I have also spoken with Professionals in every area of the medical community and this is the general consensus of everyone's frustration
If someone has a stroke and becomes dependent if someone becomes disabled and becomes dependent, if someone has a spinal cord injury and becomes dependent. And any other form of total dependency whatever the condition might be. We are told after they fix us up in the hospital as best as they can, to go home and live our lives. The reality is it is getting almost next to Impossible to do this. Just ask anyone that is Reliant on someone to come into their home and to help them do something as simple as get up out of bed.
The medical community says go home and take care of yourself but there are no tools to do this anymore. Those of us who are dependent on qualified caregivers to help us cannot find them. I literally had someone coming to my house today for an interview and they had to back out because the person they trained to help them backed out of the position now the person is stuck working 7 days a week for a client that has no one else.
I spoke to nurses doctors therapists and ask them the same question. I said to them
You fix us up and send us home and say live our life but there's no resources to help us. What are we supposed to do and every single one of them answer and frustration the same way
Their answer is, I don't know it's like this all over the place.
Then I say to them, so let me get this straight.
You're telling me to go home and take care of myself but there are no resources to do this. Then you tell me my alternative is to go into a nursing home where the care is so bad most people would rather die than go into one of those facilities because of the neglect and the physical and mental abuse they have to go through every day.
The caregivers in these facilities are burned out the ones that care are starting not to care and are leaving the field and feeling guilty as they do so. Then there are those who are there for nothing more than a paycheck. Those are the ones that neglect abuse and mistreat the very people they are supposed to take care of. This has become acceptable in these facilities because they are warm bodies feeling a need legally even though they could care less about the people they're supposed to be taking care of
Then I said to all these medical professionals, if you ask me if I'm depressed and I say yes, you will ask me why. Then I will explain myself. Then you will ask me if I am suicidal. If I say yes you will take and put me into one of these very facilities that will abuse me mistreat me and my health will deteriorate because of the lack of quality Care. That is insane.
If I tell you this is not a way for a person to live you consider me suicidal. This comes down to quality of life. 98% of people I am assuming that's a good number or not suicidal and they love life but they don't want to live like this.
If you think for one second that we who are dependent on caregivers do not feel guilty about what the people who take care of us go through day in and day out, you are wrong
Those of us who are dependent are riddled with guilt every single day knowing that the people who are there to take care of us have not gotten a break they are getting burned out and our hearts go out to them but we are so grateful that they are there, and even though we tell them how grateful we are I really don't think they have any idea just how grateful we are.
The healthcare field in general is fractured and broken and so dysfunctional and backwards in so many ways I can't even begin to describe it
We have assembly line medicine now. Medicine is nothing more than money private practices have sold out to Big Pharma to avoid being squeezed out by big Pharma they are offered a yearly salary do not have to carry malpractice insurance because they are under the blanket of corporate medicine.
As I said in the beginning those of you out there who are dependent understand those of you who are family members of those who are dependent understand.
I pray to God that those of you who are healthy and have not experienced any of this never have to. Because everyone at the professional end of this are all at the end of their ropes and will tell you the same exact thing I am.
I speak to people everyday when the subject gets brought up and simply ask them howdy would you want to be treated if you were in this condition being dependent and then try to treat others the way you would want to be treated because there is going to come a time when you will get older or something might happen where you will be dependent on someone for your health and well-being. I pray to God they are there for you
This is a daily struggle for those of us who are in this situation already. It is mentally draining. And I Am Not tooting the horns of those of us who are dependent like this but we have to be mentally strong in order to live these lives.
Every life has a story every life has a struggle this is the story I'm telling from the point of view of many people in the same situation as I am.
This is a long post I know, and there's so much more that has to be said and needs to be seen by others in order for them to understand or have an idea of what millions of people go through every day.
I don't know what the answer is but I will keep fighting as long as I have breath in my body and the energy to keep looking for answers. But it's pretty bad when those in the medical community have no answers yet still tell us to live our lives. It is quite the quandary.
I will close with this.
The next time you hear someone venting frustration over this topic, please don't dismiss them as whiners or complainers or exaggerating nothing could be further from the truth.
I would say to those out there reading this to look at your own lives and what your frustrated over what is your topic that frustrates you to know and that you have no answers for and that nobody can give you an answer for. Then use that feeling to try to understand others it's the only way we can all understand each other by using what we are struggling with and fighting with and frustrated with on a daily basis then understanding those with different situations but having the same sentiment behind it.
What this whole experience has taught me after 40 years of being dependent is compassion understanding patience Etc
I don't say this lately I say it with sincerity I love my fellow man. I understand your struggles and I will try to help anybody going through anything because I know what it feels like to feel hopeless and to feel as if there's no way out or no end to a situation. As long as I am here and have somewhat of a quality of life I will keep fighting trying struggling kicking and screaming for a solution.
The one thing I will not do is settle for a life that makes me miserable. No one should have to. Compromise yes settle for a miserable life no.
My love to all. I wish peace for everybody
Enjoy this day as much as you can thank you to the people who serve the country and gave the ultimate sacrifice of their life so that we could live the way we do today
