Frank is lying in a hospital tied down to the bed 23 hours a day, I think he knows Matt, but I don't think he knows anyone else There's no place to put him that accepts Medicare around here. We've tried. The social worker for the hospital is calling us every few days to see how our search is going. Almost as if she hasn't tried anywhere herself. Every time Matt asked if she tried different places, she acted like she hadn't thought of that one yet. These are places in a 30 mile radius that she hasn't tried; we're wondering just what it is that she does. She speaks the lingo they may be looking for and we don't, so we have to push her to call. She just wants to put pressure on us to figure it out. The hospital administration is putting pressure on her to get rid of Frank. They can't help him and he's costing them money now because Medicare stopped payment for him.
It's July, we were supposed to have our "emergency" hearing for spousal support for Frank that we tried to schedule in February. The woman in Domestic Relations at the courthouse must either really hate Frank or really love Fargo. The hearing we asked for in February was scheduled for April, but that got cancelled by Fargo and rescheduled for July. Now, Fargo says she has a "medical procedure" and it's been re-re-scheduled for October. I guess Delaware County's idea of an emergency is different from ours. From being tied to the bed all day, Frank can no longer walk without assistance. Matt pointed out to the nursing director that there are regulations regarding restraining a patient, she thought that if it was for his safety that she could just keep him tied up all day. They explain that they don't have the staff to take him to the bathroom and feed him all day, so they put him in diapers and put a tube in his stomach to feed him from a bottle. Complaining to the judge in our case does absolutely no good, she couldn't care less, and she let Fargo get away with canceling another hearing. It's inhumane, and I'm getting quite angry.
I called the Disability Rights Network to complain about the treatment we are receiving by the courthouse. Maybe we're doing something wrong, because this doesn't seem right. They do actually listen to Frank's story and call me back two days later to say that they can't take his case. They can only take on so many cases and this one doesn't meet their criteria. I call the ACLU next, they listen to my story, but are not interested. I call the Association for Frontotemporal Dementia. They listen to my story, but decline to get involved. They tell me that they really only do education, like giving out information to patients and caregivers. I explain that Frank still has DUI charges pending because he couldn't follow the series of instructions the officer gave Frank to test for DUI. Despite having no alcohol or drugs in his system they refuse to drop the charges. If they want to give education, how about giving education to the police forces in the area about dementia and how it can be mistaken for DUI. No, they can't do that either. This truly disappoints me because they could have really made a difference just with this one topic. But they tell me that they can give me some information if I want it. I politely decline. I called the Alzheimer's Association and tell them Frank's story. They don't advocate, they just give out information they explain to me.
"Okay, now why do they do all this fundraising if they don't actually do anything?" I ask Angelo.
"I guess to pay for all those pamphlets they give out." Angelo offers. "Susie, maybe if we get a reporter interested in the story, you know, shed a little light on the case, the judge will feel some pressure to stop siding with her girlfriend Fargo."
"Well, I've made so many calls already, what's a few more." I agree.
I start with the Philadelphia Inquirer and Daily News. I send emails with this crazy story to every reporter listed on the web site. I'm sure they get tons of people thinking they have a story. I don't get even one reply back. I contact the local newspaper next. Again, I send the same email detailing Frank's deteriorating condition and the unfair treatment we have received by the courthouse employees and judge. I explained the missing documents, the hidden divorce decree without notification, the judge's refusal to appoint a guardian for Frank even though the court's own psychiatrist said he was incompetent to stand trial, the delays in our "emergency hearing", allowing his physical condition to decline in prison for something we're not even sure that he did, but we are sure it was in retaliation for asking for alimony, Fargo telling the judge that Frank never paid child support even though it drove him broke, also telling the judge that Frank was the one holding up the divorce because he wouldn't sign the papers even though we have letters from Fargo, in writing, saying that she will not agree to any settlement. Fargo lies so much I think she doesn't even know the truth any longer and I've had enough of their abuse of poor Frank. He can't carry this torch any longer, but we can, and we're fighting back.
I park my car at work on a Wednesday morning and I am about to go inside the building when my cell phone rings. I pull it out of my purse and look at the screen and see it's the newspaper. I'm so excited, my mouth suddenly goes dry. "Hello?" I ask with trepidation. My voice shakes a bit. I know this could be really big or a really terrible mistake, but I won't know until I do it.
"Hi, Susie?" the caller asks. "Yes" I say sounding more excited than I feel.
"I'm a reporter and I'm interested in the story you sent me about your brother-in-law."
He asks a lot of questions. He wants to know about my relationship with Kat, if Frank was abusive in any way that I know of. I explain to him the phone call she made to Matt recently where she described Frank's anger at the vacuum cleaner. If there was any anger directed at her or the children, she would have said it then. He asks about the courthouse and he says that everyone knows that Delaware County has a corruption problem, but no one knows what to do about it. He does warn me that if he writes this story, we may not be happy with the outcome. He explains that he's done this type of story before and sometimes the public opinion is different from what one expects and it actually has negative consequences. I discuss this issue with Matt and Angelo later that day and we all decide that it can't get much worse for Frank and this may be just what we need to level the field a little bit. Maybe some sunshine on these people will help end the torment they have put Frank and our family through. The reporter was very thorough. He spoke to Angelo even longer that he spoke to me and Angelo gave him all the briefs and correspondence that he had that related to the case.
The first thing I did was call my contact at The Association for Frontotemporal Dementia. I was really excited. I told him, "You say you are interested in educating the public in FTD, well here's your chance. Talk to this reporter about what this thing is so the people reading the article will know what FTD is. I think it will give a great dimension to the story and bring some publicity for what you do."
"Well, I have to talk to management first. I'll get back to you as soon as I can." my contact explained.
"Well, okay, but don't take too long. He's writing this story now." I say.
I get a phone call back from him about an hour later and he says. "Sorry, they say they can't get involved in legal issues."
I am absolutely incredulous. "Are you kidding? This is your opportunity to do what you say you do in a big way. How could you let an opportunity like this go? There are people out there just like us, going from doctor to doctor, trying to figure out what's wrong and not finding answers. It took us four years to get a FTD diagnosis. You don't even have to talk about Frank, just give a general statement about what FTD is."
"Sorry Susie, the director declined. She said she can't get involved." the guy explains to me.
"Well, tell her I think she's making a huge mistake. I truly question her commitment to her job and her stated mission to help people find information. I am terribly disappointed."
I get an email back from the director:
Thank you for contacting us, and I am sorry to hear about the situation with your brother in-law Frank. The Association for Frontotemporal Degeneration is a non-profit organization whose sole mission is to advocate for people who live and work with FTD. Our goals include: promoting public awareness of the disease; providing information education and support, to people diagnosed with FTD their families and caregivers; educating health professionals such as, doctors, nurses, and residential facility staff; and supporting research into treatments and ultimately a cure.
A key part of our mission is to help people find the information and support they need to manage the effects of FTD. One of the most useful things we can offer is a connection to others who live or work with the disease and are willing to share what they have learned. Please consider this message an introduction with an open invitation to check back with us whenever you need help finding resources or support.
I think AFTD can be most useful in this situation by offering information about FTD and dementia care to your family or the attorney handling your brother-in-law’s case. I encourage you to direct people to our website and anyone is welcome to contact us via the helpline by e-mail or phone with questions. I have also attached an overview of FTD as a pdf which you are welcome to share as you want.
We do not have the resources or qualifications to do advocacy on an individual basis beyond providing information but I have included some links to other resources below. Because FTD is rare there is not a lot of professional expertise available and often the real experts are other caregivers who may have faced some of the issues you are confronting and are willing to share resources and support. This may be most helpful in terms of finding a long-term care facility able to provide Frank with the care he needs. We list caregiver support groups and medical centers with expertise in FTD on our website at the link below and I encourage you to contact the people listed for more information.
They want to give information to people who already know they have the disease; that's the easy part. By the time this thing is diagnosed, we already know more than we want to know. I have no choice but to accept this; we go on with the article without them.
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