Caught Unprepared

We had a scare last Sunday morning and I thought we were going to have to make a run to the ER. The nurse woke me at 4:30AM because Maggie was struggling to breathe. I flew down the stairs and started pulling out all my tricks to calm her down so she could breathe normally. I put her in her chair because sitting her upright is better than being flat. We also changed the trach while the nurse suctioned and cranked up the oxygen. It didn't seem to be helping, but Maggie was so panicked it was hard to tell.

I figured we better go and I started grabbing things I would need. As I raced around the house grabbing things I realized how unprepared we were. It used to be that everything was in a bag ready  to go, but Maggie has been so stable lately that bag has been put away. I could see that Maggie was calming down, but I wasn't positive she was ok and kept gathering things.

As it turned out, she did recover fine and we did not go to the hospital, but I learned a lesson from that and have been getting an emergency kit back together for easy access. Now that I am Maggie's conservator, I have to include those papers in my emergency kit so that  I can make decisions for her. I decided to put the papers I needed regarding the conservatorship, her medical history including allergies and medications and  a copy of the insurance cards in an envelope in the nurse's chart. They are marked as for emergency use and I can grab them in a flash.

I will put her emergency bag back in the hall closet with a change of clothes, some food, feeding tubes, diapers, catheters, books, a change of clothes etc ready to go. Then I will just have to grab my phone and charger and her music we can hit the road.


I figure if I'm ready we won't need it.



I would make a suggestion to anyone out there caring for a person with special health care needs. Do a history on the computer and include the medications and allergies and update it whenever there are changes. It's so easy to get the doctors up to speed when you arrive and they are very appreciative of the organized delivery of information. I also put it on a flash drive that I keep in my purse so they can copy and paste if Maggie gets admittted. I know the information is correct and complete and avoid scary mistakes.  I even bring a copy with me to the various medical appointments because it is just too hard to remember all the drugs and dosages. If anyone wants my template I'm happy to provide it. I just made it up, but it has everything you need!

 

Done deal

It's a done deal. I have been appointed Maggie's conservator. It really doesn't change anything, but protects both Maggie and us in the unlikely event someone wanted to cut us out of any decision making, especially medical decisions. 

When we arrived we had to watch a 20 minute film about the responsibilities of being a conservator.  The film was designed for someone who will be the conservator for an elderly person, which are the bulk of the cases. One person in the film summed up the responsibility as that of a parent watching out for the best interests of a child. Right. I get that. 

Fortunately we did not hook up Maggie's dynavox because she would likely have said what she always says when we are watching something: "I don't like TV." 

  

Steve and Maggie and I all sat at the counsel table together. I did manage to grab a picture of my co-counsel before the judge entered the courtroom  When the judge took the bench he greeted Maggie by name saying, "Good morning Mary Margaret."  She just gave him the stink eye as if to say,  How the HELL does he know my name. Steve asked her if she was going to wave but Maggie took that question under submission and continued to eye the judge suspiciously. I smiled sweetly at her and then the judge and said, "She'll wave in a minute." We proceeded with the hearing and sure enough about two minutes later, Maggie started waving like crazy (emphasis on like crazy.)

The entire hearing lasted about 5 minutes. The best part was when Maggie coughed and the judge visibly jumped in his chair. It is quite a jarring sound. We are very used to it but people hearing it for the first time are always taken aback and the judge was no exception.  Steve considered suctioning her but decided it might be better to wait. I had suctioned her several times during the film, but the judge wasn't present for that. Suctioning isn't really part of the decorum of the courtroom. (Obviously if it was necessary we would do it, but this was one that could wait.)

We waited for a few minutes in the courtroom after the hearing for the judge to prepare a modified order in his chambers. We set up Maggie's dynavox while we waited.  She immediately said "Mom is beautiful" and the bailiff/deputy sheriff started to laugh. Steve looked at him and said, "I'm sure you can't imagine who taught her that." 

I just smiled and said Maggie is good for my self esteem. The court staff loved it.

Day in Court

I am dressed like a lawyer this morning. Maggie and Steve and I head to court for the hearing on Maggie's conservatorship. I am basically asking the court to appoint me to do exactly what I have done for 18 years. When the child is under 18 and a minor, no conservatorship is necessary because the parent is legally making the decisions anyway. After 18, the parent has zero authority. Maggie turned 18 in March. Obviously, Maggie cannot make decisions for herself, or at least cannot make people understand what those are. She needs someone running interference for her and I'm asking that person be me.

I am virtually certain this request will be granted. In a case like Maggie's it's merely a formality, though the judge does want to make certain I am the right person for the job. (No one is opposing it.) I learned in the course of this process that only 7% of the conservatorship cases are people with developmental delays. The bulk of the cases are dementia and cases involving the elderly.When one can no longer make decisions for themselves they also need protection because elder abuse runs rampant, especially for those with money. People are ripped off all the time and having the court oversee things hopefully prevents that. Those appointed to serve as conservators have to report to the court periodically and account for the money and treatment of the person conserved.  Maggie doesn't have any money, except what she gets from SSI, but I presume I will still have to report to the court on some schedule.

 While I am happy that this will be formally in place, I am feeling the weight of the all of this. Perhaps its the court formalities, perhaps it's simply telling the judge in no uncertain terms that my daughter cannot take care of herself, perhaps its just exhaustion after 18 years of doing this; but I approach this hearing with some trepidation. Not a concern that I will "lose" but rather that it is automatic that I will not.

If and when the judge agrees with me that my beautiful, smart, entertaining but very disabled daughter cannot care for herself I will not really feel like celebrating.

Protect me from my mother!!

On July 5 we all go to court for the hearing on Maggie's pending conservatorship. Because she is 18 and no longer a minor, she needs someone appointed to make her decisions. The likely candidates are Steve and me and we are asking the judge to appoint me.

As part of the process, a court investigator came to the house the other day to get the information she needs to prepare a report to the judge so he/she can make an informed decision. The woman was lovely and treated Maggie with great respect. She explained to Maggie that we wanted the courts permission to continue to take care of her and had to ask Maggie if she agreed. Maggie signed yes.

The woman looked to me to make sure that was a yes and I nodded. Maggie showed her again how she says yes and no. I was smiling to myself because there is no way on God's green earth that Maggie understands what a conservatorship is, or whether she needs one, but we have to go through this. Besides, Maggie  thoroughly enjoyed being the center of attention and wanted to entertain us both.  The investigator seemed to get that too. The questions continued:

"Do you think your mom is the best person to make decisions for you." 
Yes.   


Sometimes a person doesn't want someone else to make decisions for them and they need an attorney to tell the judge that. Do you want your own attorney?


Maggie pauses, grins and then signs YES. 

Ok, here we go.

The woman looked at me again and I just smiled wanly and said "Do with that what you will, but I do not believe that Maggie is comprehending all of this." The investigator agreed saying,  "I'm not sure that was an informed 'yes.'"  I told her that Maggie often says yes just to please people. Maggie was laughing her head off at this, and I thought I caught a bit of a mischievous glint in her eye. I wondered what she was up to.

"Do you know what a lawyer does?" 
 YES!
Do you want mom to be your lawyer? 
(Giant Grin from Maggie and then )   NO! 
Do you want Dad to be your lawyer?
(same grin) NO!

Now Maggie was beside herself with laughter.

I just sat there trying not to laugh as did the investigator. She said she will explain things to the judge and the judge will decided if Maggie needs appointed counsel. Given Maggies answers, counsel may well be appointed. I, of course, have no say in the matter. Technically, Maggie and I are adverse parties if she takes the position she doesn't want this. The question is, can she knowingly take that position. I don't think she can - in fact I know she cannot, but I am not the decision maker for this particular question. If the court wants to appoint counsel to represent her, that's perfectly fine with me, though I believe it will be a waste of  taxpayer money.  In Maggie's case it will not effect the outcome because she obviously needs someone to be in charge.

After the woman left Maggie was very pleased with herself. I just looked at her and said, "Did you enjoy that?" Maggie YES. Ok, let me ask you again, Do you want mom to be your lawyer? YES.

I just looked at her. "Too late, chicky. I have a conflict of interest. Besides, you can't afford me."  She thought that was hilarious, even though I know she had no idea what I was talking about. .

Maggie was quite proud of herself.

Mama Bear, with authority

Camp Mom starts today. Maggie is finished with school and we have two weeks until Summer school starts. That means I am chief cook and bottle washer for the next two weeks. We will have an outing every day, but I have no idea what those will be. Maggie is about the easiest person in the world to entertain, she takes absolute joy in the moment and is perfectly happy with an outing to the mall.  The mall is the easiest, but it drives me to drink so we have to mix it up a bit.

Generally we just have to fill the mornings and the nurse comes around 1 or so. That way I can split up the hours. Today the nurse is not coming until 3:00PM because we need to cover the hours this evening as I have tickets to the Giants game. (Seats are non accessible, so Maggie is out for this one.)

We do, however have to be home at 1:30 as the inspector from the court is coming. I filed papers to be Maggie's conservator and the court sends someone out to determine if Maggie really needs to be conserved. The hearing is in July and the inspector has to file a report for the judge before that time.  It's a good thing that they investigate. Once someone is conserved they really lose a lot of rights. They cannot run their own affairs, handle their own money or make their own decisions. Care must be taken that there are no shenanigans going on.

In Maggie's case it is really a formality. Obviously, one who cannot care for her own physical needs must have someone looking after and advocating for her. It is also pretty clear I'm not trying to take over her life to control her vast wealth. (She has about $80.)   It is for her protection and ours. Now that she's 18, she is an adult. Without a conservatorship, people don't have to check in with me on decisions involving her.  In a worst case scenario, doctors could prevent me from making decisions or even being informed about her health status. I'm not too worried about that but it would be stupid not to be prepared.

 I will have to report to the court annually to show what we did with her money, report where she is living etc. That's totally worth it to be able to shut people up who attempt to manipulate her, or us,  in any way. If the conservatorship is granted, I will have the courts permission to continue to act as Mama Bear, without the hibernation.  I think I know how to do that job.

Off to figure out some entertainment for the morning. Too bad she's not into drinking coffee and chatting. That would be my activity of choice.