No Rest for the Weary

I’ve been feeling pretty yucky the last couple of days. So what I wanted to do today was kick back. Maybe sleep in a bit, get my blog written early, and binge watch some Netflix program. Tracy is out of town, so no need to cook.

But then I woke up in the middle of the night last night and realized that today is already the 12th of July. And Travis’s birthday is Wednesday. Don’t worry, I have his gifts figured out.

His birthday also means that my annual legal guardian court report is due. So guess what?

No rest for the weary. Today at least.

I spent most of today working on the report. In between the eight calls from Travis. For real. I just counted. If you remember from a previous post, his average is “Nine Times a Day”. But the day is not over and I have no doubt we will get to at least nine.

I did a search for the form. In Colorado its form JDF 850. I always look online because they update the form every couple of years. One small change to keep you on your toes. And yes, updated June, 2021. Which means I cannot use last year’s report and add some updates.

I did get a slap on the wrist one year because my report was too similar to the year before. That’s easy to do when he lives in the same place. For eight years now. Has been seeing the same primary care doctor for his entire adulthood. Ten years. His psychiatrist was assigned by the case management agency when Travis qualified for services. So ten years for him too.

We work at keeping a regular routine for him. It’s important. When you find doctors that work well with him, you hang on to them. Even if it means driving to another town.

The first few pages are simple. Filling out his address, email and phone number. (I use my email for him. I think he has like 23,000 unread emails. So no point in making it 23001.) Then my information, Tracy’s and Corey’s, as his co-guardians.

No, we have not had any criminal charges filed against us, or convictions since the last report.

There is a section called the current condition of the ward. (Travis). Please describe in detail the current mental condition of the ward.

If you’ve been following our story, you already know Travis’s current mental condition. Per my report, “Travis continues to struggle with his mental health. He continues to see the same psychiatrist through his services at Foothills Gateway. The visits have been taking place on Zoom every three months. Travis continues to receive his monthly Abilify injection. Travis interacted with his therapist two times per month by phone until a few months ago. Travis refuses to continue talk therapy at this time. Travis says it doesn’t help and that if feels like ripping off a scab from the same wound over and over. Travis has been in some form of therapy since he was a child. His mental health is not improving at this time.”

Same exact information as a year ago. It’s hard to find different ways to say the same thing.

Please describe in detail the current physical condition of the ward. It’s nice that the report says please. Lol.

Same stuff. Type II diabetes, gout. But oh, wait. Something new. Travis had his tonsils removed since the last report. Unfortunately it didn’t work as well as the doctors had hoped and he still needed to get fitted for a BiPap machine. Which he is only wearing about 70% of the time. I remind him of the importance often, but he’s not able to make the connection between using it and feeling better the next day. Trading a bit of comfort from sleeping for a bit of comfort while awake.

Even more unfortunate, his most recent blood work shows his red blood count, hemoglobin, and hematocrit even higher than before his tonsils were taken out. His tonsils are gone, he is using a BiPap and the results are worse. Travis’s pulmonologist said he needs to wear the Bipap more. I know I am not a doctor, but I’m thinking if his low oxygen level is caused solely by his sleep apnea, shouldn’t the blood work results be even just a bit better with any use of the Bipap? Not worse?

In fact, the blood work showed lots of areas of concern. His glucose was higher than the usual high number. His A1C as well. I’m thinking we need to figure out how to get his organs more oxygen so they can do their jobs!

I type the information on the report in a more professional and less smart alecky way. I add that Travis has received both doses of the Covid vaccine.

Please describe in detail the current social condition of the ward. I’m going to cite my report because I think it may give my readers a better sense of what caregiving looks like and why it is continuously ongoing.

“Travis continues to receive services through Foothills Gateway. Travis is once again receiving help with cooking with a new provider agency. The last agency lost their employee that worked with Travis and didn’t replace him. Help with cooking was then put on hold for several months as provider agencies were limiting contact during Covid. I filled in until it resumed.

Travis’s provider that helped him with cleaning dropped him as a client. A different agency has responded to the RFP from Foothills Gateway and we are hoping they are able to hire an employee to work with Travis soon. Provider agencies are struggling attracting new employees, so this agency is trying to hire an individual that worked with Travis in the past with a previous agency. The agency talked to her a month ago but has yet to send her the required paperwork. I am currently filling in to help keep his home clean and safe.

Travis’s live-in aide moved out four months ago to live with her boyfriend. Travis decided that he would like to try living on his own without an aide. Travis needs a great deal of support to keep him from inviting strangers into his home. This does create more safety issues and stress on the family, but we will continue to support his wishes and make a decision about whether he will be able to continue living without an aide in the next few months.

Travis continues to have a tribe of friends. The entire group needs support in maintaining their relationships as they all have varying disabilities that affects their social abilities.”

Please describe in detail any medical services provided to the ward. This is where I talk about getting teeth cleaned twice a year, having one at home sleep study (which we did in my home) and one in lab sleep study. Travis has a nurse that comes by once a week to check his vitals and fill his med box. This nurse also does his monthly prescription injection. I detail his doctor and psychiatrist appointments as well.

The next question asks for a list of medications provided to the ward.

Please describe any educational services provided to the ward. Travis tells everyone that he wants to go to college and that we won’t allow it. Let’s be real. Each time he says that I pull out the study books for the entrance exam and he says not now, I don’t feel like it. Travis wants to get a degree in video game design, but doesn’t want to take the other required classes. Like English and Math. The local community college offers support for individuals with disabilities. Like tutors, or note takers. They do not however have someone to roust your butt out of bed, and get a grouchy dude to class on time.

Front Range Community College (FRCC) has a Fort Collins location. FRCC offers a Digital Animation Associate of Applied Science. Many of the classes are only available at the Westminster (closer to Denver) campus. If Travis gets to a point where he can handle this type of responsibility, I would be happy to financially support his endeavors. I am simply not going to be able to give the level of support I had to give him in his high school classes. Like reading the entire American History book out loud to him and then fight him daily over completing any type of homework.

Please describe in detail any vocational services provided to the ward. This one has been an interesting one to fill out from year to year. I have detailed in previous blogs the nightmare of working with the Division of Vocational Rehab (DVR). Travis was a client for several years. The assistance given is totally dependent on the counselor that is assigned to you. And you have to be able to get to the point where you can work in a community job. DVR will not support working within an enclave of individuals with disabilities, even if that job is offering training and support to ready a person for a community job.

This past year Travis worked at Spirit Halloween for a few weeks. He didn’t enjoy it this year as much as when he worked there five years ago. This year he had a 1:1 job coach, which made him crazy. I would compare it to having to eat lunch with an aide in middle school. Talk about making you feel different than your fellow students. This made him feel different than his fellow employees. He would rather blend in a bit.

Then of course his most recent experience with the vape store. Aye-aye-aye.

Funny story. This didn’t make it into the report. It just happened. Travis stopped to get gas at a local convenience store. It is close to the vape store. Travis being Travis, when he went in to pay he struck up a conversation with the girl behind the counter. He shared with her that he used to work at the vape store but that he ended up quitting because his boss was a, I’ll just say jerk. Not the term Travis used. The girl told him the convenience store was looking for late night help and that the manager that did the hiring would be working the next day. Travis said late nights would be perfect for him.

Travis called me last night to fill me in. I listened. I figured he would forget about it, which would be a good thing because it’s probably a full-time position. I’m guessing the closer probably works alone. Travis would need support working a cash register. And staying focused. Not sure how his job coach would feel about working late at night. At a convenience store.

One of the times Travis called me today was to tell me that the convenience store manager called and set an interview for 2pm tomorrow. He must have left his number. Travis has his cooking provider showing up at 2:15pm tomorrow. I told him to call his job coach to see if she could attend with him. Travis would tell the convenience store manager he could do it all, and work open to close every day. The job coach wasn’t available, so the supported community employment manager from the agency will meet him there.

I’ll be at his home tomorrow. It’s “Travis Tuesday”, so I will send him off on time and appropriately dressed. Maybe the convenience store manager will have some type of opportunity for him and the supported community employment manager can sell her on the support they offer.

One thing for sure, if Travis is going out and looking for opportunities, his team will bend over backwards to try to help make it happen. I will keep you in the loop, and if something becomes of it, it will be in next year’s court report!

Please describe in detail any other services provided to the ward. Since Travis’s state waiver hasn’t been paying for 1:1 job coaching all year due to his job ending due to Covid, there was some room in the budget for a provider to spend time with him each week in the community. The plan is to swim or play frisbee golf. Anything involving some exercise with a goal of improving his health. And available once the provider agency can get an employee hired.

Next there is a question about how often I contact Travis’s medical providers. A lot.

Then how do I contact his medical providers. Seriously? By phone, email and in person. I attend every medical appointment with Travis.

Describe your plans for future care. Just like now. Whatever it takes. Only that is not what I report. Instead, “Our family continues to support Travis in order for him to live as independent a life as possible. We have provided a mobile home for him, and continue to make necessary repairs and updates so that he has a safe place to live. I am in constant contact with his case manager at Foothills Gateway and all of his service providers. Our family intends to care for him in the future.”

I am really in constant contact with Travis’s case manager. I’m afraid we’ll lose her because she is just too good. She will get promoted or a headhunter will contact her with some offer. She says that I am the only parent on her caseload that is so supportive of her child. I have no doubt!

How often do I visit the ward. A lot.

How often to I have contact with the ward. At least nine times a day. Lol!

When was the last time you saw the ward in person. July 9th.

Indicate how long your visits are and summarize your activities with and on behalf of the ward. By this time I am worn out continuing to report the same information again and again. This is what I come up with, “I spend time with Travis weekly, usually around four hours each time. We run errands together and oftentimes each lunch together. We continue to do family activities together. Travis enjoys his two nephews. I talk to Travis several times each day, he calls me to process emotions and friend drama. Travis adopted a dog from the humane society, he brings her to our house to run and play with our dogs as he doesn’t have a fenced yard to let her loose in. Travis will sometimes spend the night at our house when he is feeling overwhelmed. I attend all of Travis’s medical and case management appointments.”

Does the ward participate in decision making? This is an important one. The court wants Travis to have a say in his life. We get it. Sometimes the decisions are not good ones, but we all make bad choices from time to time. This question says to briefly describe.

“Travis decided he wanted to try living on his own without a live-in aide. Travis decided he wanted to adopt a dog. Travis decides how he is going to spend his paycheck money. Travis decides what businesses to drop off his resumes. Travis decided it was time to quit the vape store job. Travis decides what he is going to eat.”

Some of the decisions mean that I have to offer more support.

If you were to ask him, he would tell you that we make all of his decisions. He will tell you that he is my puppet. Which makes me sad.

Finally, since I am also his representative payee and oversee his finances, I have to give an accounting of his money for the year. As part of that accounting they ask how much I paid care providers and how much I charge to be his legal guardian.

For real. Charge for being a supportive mom? Free. And several hours of sleep.

“We find no rest for our weary bones unless we cling to the word of grace.” - Martin Luther

“I wanted to relax today and then I remembered…I’m a special needs mom. It was a cute thought. - Author Unknown