Saturday, October 4, 2014

I'm an expert, not a novice.

Well, here it is. The blog to end all other blogs! If you did not know, which you probably didn't, Bryan has been in the hospital since 9/25. My mom and I had taken him in for his HD Clinic appointment, (he goes once every three months) where he is supposed to see a Neurologist, Psychiatrist, PT, OT, and Nutrition. His appointment was set for 8:40 AM, we arrived at 8:20 AM and all seemed well, besides the nearly 10 other families who were scheduled for HD Clinic all at the same time to see the same exact doctors. So just after 8:40 we were taken back to a waiting room, where we spent over two hours sitting in our room with Bryan before being seen by anyone from clinic... Caregivers down the hall becoming desperate as HD loved ones began to lose patience and began walking the halls, cursing at their caregivers, and becoming extremely agitated. Finally, my mother had had enough and went to locate anyone who could speed up this process, only to be laughed at by the girls at the front desk of the Neurology Clinic...

After some more waiting, finally his psychiatrist arrived to a room of two emotionally, physically and mentally exhausted women and of course, Bryan. Begging and pleading for help she said she needed to make a couple calls and she'd be back. Ten minutes pass and a nurse comes in to tell us Bryan will be admitted into the psych hospital just behind UNMH for evaluation. So we get Bryan back into the car and around the hill, just to wait a little longer and get Bryan admitted, at this point no one can tell us how long he will be there, if we needed to wait around or what the next step was.

Now let the drama begin! Issues began on Tuesday, Bryan still at the psych ward... My mother and I received a call from a random woman whom we've never met saying that Bryan was being discharged the next day and was going to be moving into a group home that her friend runs, yet was unable to give us her friends full name, address or phone number...  We then panicked and called Bryan's caseworker at UNMH to find out what was happening and why no one called us to tell us anything. The next day (Wednesday) mom and I marched into the UNMH psych ward and met with his new psychologist, caseworker and a med student to go over what we were dealing with at home with Bryan. They began to give us the basic head nods and stares as though my mother and I knew nothing about HD/JHD and what it does to a patient, because apparently as they said Bryan was their first person with HD, but they had overnight become experts on his condition.

The meeting went on and on, finally putting them in their place that we were in fact knowledgeable about HD. His caseworker began discussing the home which we had heard about the night before from the random woman, it's located in the South Valley, it's run by a man who only goes by his first name, they did not know his last name, phone number, or address either, but tried to reassure us they do a lot of work with him and this place was safe, oh but not licensed. You must be high... We were then told Bryan was competent, that he was able to make decisions in regards to his care and even thought my mother and I had been his caregivers, he was his own legal guardian and if we wanted to become his LG we would have to go to court which could take up to 18 months. Then we were told we were not legally giving his medications and would have to go to court at the hospital on Friday to become Treatment Guardians (TG).

What is a TG you might ask?
A person appointed by a court to make mental health treatment decisions on behalf of an individual who the court finds by “clear and convincing” evidence is not capable of making their own treatment decisions or informed consent.

But I thought they just said Bryan was competent and able to make his own decisions...? We tried to explain to the caseworker and psychologist that we had the Power of Attorney for Bryan and the Medical Advance Directive which both said we could be in charge of these types of things because Bryan was not able to do so for himself. Still they set up the appointment for court on Friday... After leaving this few hour long meeting we went to visit a friend of ours who is a Social Worker. We went to her office pleading for any help or advice she could offer us during this very confusing time. She told us to wait and made a call... The woman on the other end of the phone was very understanding and listened intently to what my mother and I had to say about what was happening with Bryan, why he was at the psych ward, where they were trying to dump him off, and so on... She runs a collection of LICENSED group homes that are looked over by managers and are staffed 24/7. Bryan would have his own room, be looked after, three meals a day with snacks, and have plenty of activities to keep him occupied. Could this be? This sounds awesome! And they are willing to take him ASAP!

Too good to be true was more like it. Friday we showed up the the Psychiatric Hospital for court in regards to Bryan's TG. Prior to his hearing we were approached by his newly appoint doctor who was under the impression we were committing Bryan to the State Hospital in Las Vegas, NM and trying to become his TG. Then the DA came and told us a similar story and we showed him the POA and the Advanced Directives we had and began to tell it that seemed enough. Once we got into the meeting room where the court would be held we met Bryan's attorney, the judge, sat across from his doctor and the DA and discussed the legal paperwork we already had. The judge, DA and attorney were all confused as to why the caseworker made us go to court for something we technically already had... But, none of them were on the same page as us. They all believed Bryan was to be discharged and sent to Las Vegas, not that we were waiting to hear about the group home which we had already discussed with his caseworker.... Ball dropped.

We left and had a stressful and tense breakfast while waiting until noon to meet with the rep from this new and amazing group home we were hoping to God Bryan could get into. After a nearly three hour wait, we met with her and Bryan in the psych ward... Everything she was telling us was awesome! We were so happy and so was Bryan, he was excited to have his independence back and be able to live on his own. We left the rep there to talk to his caseworker about the next steps, Bryan was happy, and we were happy with this decision. Until twenty minutes passed and his caseworker called, she said the home would not be able to take him, that he had the wrong kind of insurance (not institutional medicaid) and would not be able to go there. Talk about a 180... What happened? She might as well have kicked us in the gut, are you kidding me?!

So now we wait, we wait to see what the owner of this home chooses to do as she has a meeting with Bryan's insurance Monday. We were supposed to return to the psych ward Monday for court again, for Bryan's commitment. But, the caseworker continues to go off and chooses to do her own thing finding more unlicensed group homes for Bryan to be sent to since he cannot stay in the hospital much longer and they are ready to dump him just about anywhere with anyone.

My issues with this process:
1. UNMH/Psych Hospital have no clue and not enough resources for what needs to be done.
2. No one anywhere talks to each other, not the caseworkers, doctors, social workers, court system...
3. Nursing homes, they will not take Bryan because of his age. Sorry HD doesn't choose an age over 50.
4. Group homes in NM do not have to be licensed, or run by individuals in the healthcare system. Nor do they have to be properly managed. And they do not need to have medically trained staffed on hand either.
5. What's the point in having or fighting for Medicaid or Medicare when you can't use it ANYWHERE!?
6. There aren't enough places for young people with disabilities or mental illness, which then causes the psych hospital to turn out people onto the streets.
7. I am an expert when it comes to HD, do not look down on me because I am not a doctor, I am not a novice, this is not my first rodeo, you are not the first doctor, neurologist, psychologist, caseworker, social worker or nursing staff I have had to deal with and I'm sure you will not be the last.
8. We want what is best and safest for Bryan, we wish that could be with us in our home, but unfortunately it is not at this time... We are involved in everything from picking out his clothes to taking him to his doctors appointments, do not push us aside like we don't matter and don't care for him, because that is not the case.
9. You do not live in our home, you have not cared for Bryan for five years through the progression of HD, and you do not see the way he is at home... DON'T brush aside the fact that he acts up, becomes aggressive, wanders off, crawls under the house, nearly lights the porch on fire, is up all hours of the day and night, or is constantly on a rampage of some sort. We have dealt with this much too long, with not only Bryan, but with my dad also. We are not new to HD like you are.
10. Do not dismiss our concerns. Do not make us feel like we are bad family members or caregivers. Do not make me and my mother feel like we aren't doing a good job or like we are giving up and going the easy way. Like I have said before...

I'm an expert, not a novice.