Advocacy For Care:
Martha on Advocacy in the early stages:
"As we drove down Route 95 to Boston's Beth Israel Hospital, the sky was beginning to brighten to a pale yellow. We were all quiet, alone with our thoughts for the long 45 minute drive -- Steve driving, Heidi (Jamey's girlfriend) in the back seat. I was praying that if Jamey wasn't going to have a good quality of life that God would just take him to be with Him. I even tried to plan a funeral, but my mind hit a brick wall, even thinking that we just wouldn't have one.
Then there were what seemed like hours, but was probably only one, waiting in the emergency waiting room at Beth Israel hospital, radio music piped in ---"Teach Your Children Well" by Crosby Stills and Nash (feeling guilty because for Jamey to be in this situation must be my fault as a parent), and then "You Fill Me up" by I don't know who, but it was then the tears came because I felt such loneliness, emptiness and grief at the thought of losing this son who had filled 25% of my heart for 19 years.
Not much ADVOCACY going on here, just a lot of dependency on these emergency room triage doctors, trusting that they knew what they were doing. Then being surprised when they finally came out to report all that they had done in a hopeful, matter-of-fact manner --- no doom and gloom like we had experienced with the ER doctors back at our local hospital --- "He may not live," they said. "It's his head."
We were asked to go into another private waiting room where we would meet a doctor who would be doing an angiogram to make sure Jamey's heart was intact. He would need our PERMISSION to do this, and of course part of their job, in order to protect themselves from a lawsuit, was to inform of us the horrendous, but miniscule risks involved. For a fleeting moment, I wanted to say, "No! Not if he could die!" But he could die if they didn't, so how could I say no!
Certainly we had the choice. We always had the CHOICE. And before Jamey would leave ICU 6 weeks later, we would be presented with many chances to make a choice or give PERMISSION, as it were, to let these doctors perform a myriad of tests and surgical procedures on this very sick human being, our son. There really was no choice, and had we ever said "No" at any of those times, a whole other system would have have come into play. We would have had to sign a waiver of refusal.
Although we were certainly given the choice, we would put our TRUST in these doctors and their vast knowledge and experience.
At 6:00 a.m. we decided it was late enough to deliver the bad news to Jamey's grandparents, who would then inform the aunts and uncles. The hospital had become a beehive of activity, and things looked better in the light of day. We were told to go get some breakfast while Jamey was "checked in" to ICU.
It was the long Memorial Day Weekend, so we didn't see anyone from the business office until Tuesday. It seems like such a trivial thing in the face of such a horrible situation, but it is their job to let your insurance company know as soon as possible -- especially since the situation is going to be defined as "CATASTROPHIC." No kidding! At the same time, if you don't have insurance, they give you a form explaining that the hospital has funds you can apply for and how to apply for them if you need them.
I vaguely remember someone asking me if we wanted a SOCIAL WORKER. Before the word "No" escaped my lips, thinking that only people on welfare had social workers, I asked the question, "Why would I want a social worker?" It was explained to me that this person would be only a telephone call, or a page, away from being by my side to answer any questions I may have about anything. And when it became obvious that I would probably never see the doctors just by chance when I was there at the hospital, I realized that having this social worker would be my FIRST POSITIVE STEP towards real advocacy for my son.
As time went on, I could ask Barbara, now my friend and ally, "Who advocates for people who have no family?" Oftentimes, the social worker is appointed temporary legal guardian of a person in a coma. Now it was beginning to dawn on me just how great our responsibility would be in the coming days and months ahead.
Advocacy. I would need to gather as many allies with as much knowledge as I could.
The first of many would be a LAWYER. What would we need a lawyer for? Don't lawyers just chase ambulances looking for money? No. Lawyers are especially trained to ADVOCATE FOR YOUR RIGHTS. They know what those rights are. All of a sudden a whole new world of advocacy opened up before our eyes, and we had a new respect for these oft maligned men and women.
We were fortunate in that Steve just happened to be installing a computer system for a major law firm in Manchester, NH. The first thing they wanted us to do was apply for guardianship. Guardianship? This was our son we were talking about. Of course, we're his guardians! But there are legalities involved in advocating for one's family member --- Jamey could not speak for himself, and therefore needed someone with his best interests at heart to be his guardians. Steve even thought it would be best if he were the sole guardian, so that I would be spared the responsibility. But the judge, in his wisdom, told Steve that I would have to be co-guardian, and looking back, it really has more to do with expediency, especially since I am so involved in Jamey's day to day care.
The second thing was getting money to which we might be entitled. How much insurance did the driver of the car have? Was it enough? Did we have what is called "underinsurance" money on our auto insurance? We did. But it's the lawyer who has to go after it, because it has to be put in an estate fund administrated by the law firm, not in our personal bank account. And any substantial amounts of money to be spent, needed to be approved by a probate judge. So later on when we wanted to purchase a wheelchair van and a handicapped accessible home, we had to make an appointment way in advance to see the judge before we could access the money.
So, along with MAKING TIME to visit Jamey, we also had to take time off from work to meet with lawyers and judges. Guardians need tolerant employers! Unfortunately, many aren't, and they have a way to terminate you that is legal!
CALLING ON THE PHONE
--- every morning before the night nurse went off duty at 7:00, "How was Jamey's night?" Calling every evening, "How did Jamey's day go?" So they would know we were always there, asking the question, keeping them accountable.
Calling FAMILY MEETINGS with the doctors and primary care nurses
to discuss Jamey's prognosis or making plans to attend meetings to discuss any procedures that would need to be done, like the tracheostomy and placing of the g-tube. As time went on, permission was given over the phone in the middle of the night, signatures sent by fax from our work places."
"I was lucky to have a couple of great nurses in our days at NICU and one taught me something that I must share with you..."the doctors work for you dear." DEMAND they come and show you the FIRST CT and every CT after that and EXPLAIN in layman's terms what each one shows. I was very intimidated by doctors for some reason, but now I'll take 'em to the dirt just like anyone else... Please don't hesitate in calling them 24/7 if you have to to get what you need. Once I overcame MY fears, and just asked, I found they usually aren't opposed to telling you things IF they know...they just don't think to tell you. They are in their own little world."
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