Was It Worth $20?

Today I called Daughter's medicaid plan about the ongoing problems with needles for her insulin pens. The woman told me (again) the pharmacy was billing it wrong, and weren't billing my insurance first. I had the denial in front of me, and informed them that the pharmacy was billing my insurance company first. Then she tried to tell me I needed to change pharmacies because this one didn't know how to bill. I informed her they were handling all of Daughter's other prescriptions without a problem. Then she told me that they needed to call in. I explained they had called in, and was told they weren't covered. Finally she put me on hold to make some calls.

I finally got an answer. It seems that they don't want to pay for pen needles unless they are billed with the insulin pens. I explained to her that there are 5 insulin pens in a box, which lasts for a couple of months. She goes through a box of needles in a month's time. That doesn't make any difference. I told her it was a waste to stockpile pens we weren't going to use so they'd pay for the needles. They put in an override to pay for the needles this month. I picked them up this evening, and they had removed the $20 co-pay from my insurance company.

I find myself asking if all the trips to the pharmacy and all the phone calls weren't worth more than the $20 I saved. More importantly, though, I wonder what happens to people who don't have a strong advocate, or someone who will pay for the prescription rather than go with out while fighting for payment. It's no wonder people stop taking their medication. I think it would be much more cost effective to pay for the medication than to pay for the hospitalization. But then, I'm not an insurance company.

The Final Week

This is the final week Daughter's program will be housed at the church. What was supposed to be a couple of weeks has turned out to be over 6 months. Once we gave Program Coordinator a key and alarm code, it got much easier. In fact, Administrative Assistant has commented that she'll miss having them here. They were downstairs, and there was an entrance right by their room that they used for most of their comings and goings. We could hear some of their movement, and they'd come up occasionally to use the copy machine. We had to buzz them in through the office entrance occasionally if PC was out when they came back from an outing.

Daughter, of course, is anxious about the move. We have been careful to minimize the contact she has with me during her program. She can't come up and see me, she has to call or text as though I weren't around. She does call and text-- regularly. The same type things she called and texted when we were in Tiny Village. She often has a crisis and needs me to rescue her from the program immediately. Just like in Tiny Village I offer encouragement and tell her I'll see her at the end of the day.

A couple of weeks ago we drove to the new location from the church, and then from the new location to home. We measured the time and mileage, and both were shorter than what we'd had to deal with in Tiny Village. This reassured her some. More challenging is the fact that she'll be away at camp for their opening week. I'm sure that the week of her return will be challenging. They have a number of people waiting to enter the program when they complete the move. Their space here has been limited, so they had to limit the number of participants.

This morning, Daughter is upbeat about the upcoming move. I hope that her upbeat attitude will continue and the transition will be a smooth one.

Interesting....

Yesterday evening I told Daughter we didn't have to take her friend to the dance, she could meet him there. This morning, she was dry. I'm beginning to suspect that this last round of bed wetting was a direct result of getting a boyfriend and the drama that followed.

We spent over 3 hours working in the yard today. We spread 15 bags of mulch in the front and did some weeding in the back. Daughter worked with me. She isn't a fast or careful worker, but at least she was out there working. I edged one side of the driveway this morning (I'd done the other side Saturday, but it was badly overgrown and I decided that it was best to not do it all at once). She just doesn't get the concept of sweeping. She did pretty well for Daughter, but I still had to go behind her to clean it up.

I am considering paying for the yard waste removal through the summer my trash service offers. I could take the bags to the recycling center on my own, but the hours are very limited, it still costs money, and I'm not thrilled about transporting the stuff in my car. I also considered a compost pile, but there isn't a good place for one in my yard, and I have lots of stuff to put on it. I'm finding owning a home in suburbia is not cheap.

A Holiday

Since today is Memorial Day, Daughter's program is closed and I decided I'm not going into the office. That doesn't mean I don't have work to do. I am going to write some newsletter articles, and I'm going to work in the yard. I hope to get started in the yard early, as it's supposed to get up to 90 today. It's going to be very humid, so I don't think I'll be doing much work outside once it heats up. I may have to turn on the AC for the first time this year. I had to turn the heat back on last week. It's been a crazy spring.

Daughter told me last night she's stressing out about the prom this weekend. So is her "just friend." He called the church yesterday morning for details about how I'd pick him up for it Friday. I told the individual who answered the phone to tell him to talk to me Wednesday. I told Daughter last night she doesn't need to take him to the dance, she could meet him there. "Thank you!" She was so relieved. This is why I've refused to make plans to pick him up. I figure she'll change her mind a few more times before the dance. The meal better be good, because I'm not looking forward to this dance at all.

I will be firing up the grill today for the holiday. Friday Sister invited us to come to her house today, but I decided I didn't want to drive, I wanted to work in the yard. I hope everyone has a good holiday, and remembers the mean and women who have given their lives in service to our country.

Dealing with the System

I'm in the process of getting guardianship for Daughter. Lots of paperwork. I'm sending her to camp in a week, more paperwork. I'm applying for personal care assistance for her so that that funding can be used to help provide staffing for an out of home placement. More paperwork.

Then there's the ongoing battle with her medical assistance. My insurance is primary, so it just picks up the co-pays on her prescriptions. Except it's not paying the co-pays. I finally go them to cover her insulin pens, but now they won't pay for the needles so she can use the pens. I called them last week. "It's the state's fault. They say she has another insurance that is primary."

"She does."

"Oh, well the pharmacy isn't billing properly. They need to run it through the primary insurance first and then bill us."

"That's what they're doing."

"Well if they can't figure out how to do it, have them call the help line."

So the pharmacy called. The individual they talked to said that the needles aren't covered, but didn't offer an explanation. The person even noticed they covered them in the past. They told the pharmacy to tell me I'd have to call to straighten it out. I think this is where I started, calling them.

I came home from the pharmacy today frustrated, to say the least. I will call again on Tuesday. I will mail out the latest round of paperwork on Tuesday. I will be frustrated, though. It's not only the emotional demands that come with dealing with Daughter and her issues, it's the time demands that come from dealing with the system. I was exhausted this afternoon.

She's Still Alive

It's something of a miracle that she's still alive and I didn't kill her. Sunday mornings are not a good time to mess with mom. We had baptism and new members today, making it a little more stressful than the usual Sunday. I walked by the unlocked kitchen at the church (I'd opened it so volunteers could get in to make coffee for the coffee hour following worship) and found Daughter with her head in the refrigerator. She'd told me she was going straight to the restroom.

I didn't yell, but I did tell her she'd let me know I couldn't trust her. She responded by getting her purse and heading out the door. She was wearing sandals with heels, so I didn't think she'd get very far. A couple went out searching for her when she didn't return as quickly as I thought she would. They found her a mile from the church, headed home. She was not happy at being found, and didn't speak to me until after worship. She sat as far away from me as she could.

We were invited to join the family celebration of the new members following worship, but I decided it would be best to come straight home. The good news is that the congregation is wonderfully supportive. Several were willing to go searching for her. She is apologetic. I didn't kill her (yet).

Easter's Done, Where's the Slower Pace?

I was anticipating a much slower pace after Easter. I wouldn't have the extra work with the more complicated worship services we were doing during Lent. I wouldn't be teaching a book study and developing a PowerPoint presentation that provided a summary for those who didn't read the material without boring those who did. I was sure things would slow down. It was a great theory. The problem is, everything I put off until after Easter now has to be dealt with. Further complicating things is the reality that the late Easter leaves less time before the start of summer-- and vacations.

I've been spending a great deal of time in all the meetings that were put off until after Easter. We are making big plans for the fall, and coordinating them is going to take some work. I am very much into the big picture and coordinating all of our programs around a theme. The pattern here has been, at least recently, that each ministry goes off and does its own thing. Pulling together all the people to coordinate the various pieces takes time. Getting everyone on board and contributing their pieces in a timely manner isn't easy. Just finding a time when everyone can meet is almost impossible.

I'm teaching a Bible study at the conference Daughter and I attend every July, and I need to begin planning for that. I also need to begin working on adult study and worship plans for the fall if everything is going to coordinate. I've decided I'm going to have to find a quiet place away from the church where I can do some work. I have a steady stream of people through my study all day. I love the interactions and conversations that take place, but it makes it hard to focus on a big task. It's time to get away from the office and begin exploring the are in search of good places to get some work done, away from the distractions in my home and study.

I'm really looking forward to the fall, and am eager to begin to lay out the study and worship piece of our plans. Daughter goes to camp on June 6th, and I think that week I will set aside some blocks of time for planning. That is also the week her program moves to its new building. Why wait until June 6th? This week's calendar is already too full-- most days I have morning and afternoon commitments. I'll be gone most of July, so I need to get busy.

Figuring out the Source

Daughter had a very good period of over a week. She was happy, dry at night, being responsible, and then she regressed. I've been pondering the source of the new problems,and have identified several:

Since she was feeling better, she got a new boyfriend. He began making emotional demands upon her, and she got scared. That was the first trigger for her PTSD.

A staff member in her program came in and talked about how her mother and various other family members had been in a bad accident. Daughter has been paranoid about car wrecks and injuries since we were rear-ended 12 years ago at high speed on the interstate. My six month old car was totaled, and we were very fortunate to walk away from it. We were hit in the left rear corner by a speeding car, spinning us completely around. I remember looking at my side of the car hitting the guard rail that had been on the passenger side and seeing the headlights coming toward us and wondering how badly we'd be hurt. When the car stopped, Daughter was wrapped around my arm, sobbing. She has been paranoid about auto accidents ever since. That was the second trigger.

The same day, another staff member was getting calls about her mother, who was in the hospital. Daughter remembers all the phone calls about my parents when they were in and out of the hospital in the last few years of their lives, and is terrified that I'm going to get sick and die. Trigger number 3.

The same staff member, on the same day, received a phone call from her daughter, who had been abused by her boyfriend. Daughter overheard part of the conversation, and filled in the blanks with pieces from her own past. It was at this point that she sent me a text saying she was hearing voices (severe flashbacks). I responded with something about her being safe. Unable to communicate directly with me, she shut down and went to sleep for the rest of the day.

Of course staff are not supposed to talk about their personal lives in front of the clients. As Program Coordinator has pointed out, Daughter may well be smarter than one of them. Program Coordinator sat the staff down today and shared in graphic detail the impact it had on Daughter when they shared personal information with her. She also shared my threat: the next time one of them shares personal information with Daughter that triggers her PTSD, that individual gets to take her home!

"Just Friends" and Residential

Daughter and Boy Friend seem to have different definitions of what it means to be "just friends." For Daughter, it seems to mean that she doesn't want to talk to him or think about him, but the night of the big dance she wants to go with him. For Boy Friend, it means that they talk on the phone daily. Daughter doesn't want to talk to him on the phone-- ever.

I feel bad for the men in her life. She sends them such mixed messages. She is so conflicted when it comes to men and sex. Next week she has a psychological evaluation done in preparation for the guardianship hearing. I finally sent the paperwork in. Filing for guardianship feels like a failure. My goal for her had been independent living, and now I'm asking a court to rule her incompetent and declare me her guardian. Many things will be easier, though, once I'm her guardian. It will be easier to take care of her business once I'm her guardian.

I also talked to Case Manager about the residential situation for Daughter. It looks like she'll go on a waiting list for a placement in an adult foster home with 6-7 other residents. Case Manager really doesn't get the need for 24 hour a day supervision. She wondered again if she couldn't be alone in an apartment with 2 other residents at night. I explained (again) that if she has access to food at night, she'll eat it. If she doesn't have access to food and has a low, she could die. Sometimes they can arrange for overnight staff in the apartment situations, but according to their assessment, Daughter only needs 2 hours of staff support a day. Sigh. I've applied for personal care support, which could get her additional staffing based on health and personal care needs. We'll see what their assessment says about her needs.

On June 6, I will be taking her to camp. I am looking forward to experiencing life without all the food locked up. It may be hard to go pick her up on the 10th....

Surprise!

When I got out of bed at 5:30 this morning, the hall light was on and the washing machine was running. I was pleasantly surprised.

The bathtub and Daughter's towel were wet, and the bathmat had been returned to it's proper place. I was amazed.

Daughter was in the family room watching a show on her computer. This didn't surprise me.

I got dressed and got to work, making lunch, iced tea, sugar free punch, and various other tasks. I finally told Daughter she had to turn off her computer and come to breakfast. She immediately said, "Yes, Mom," and turned it off. Another nice surprise.

Then she vanished into her bedroom. I continued what I was doing and waited several minutes before I realized she wasn't coming right to breakfast. This was more in keeping with her behavior or late.

I called her again. Her response was immediate, "I'm doing my hair." Sigh. She often decides to experiment with new styles, meaning it can take her over an hour to do her hair.

I told her she needed to come immediately if she wanted breakfast, and she did. Another nice surprise.

The final surprises of the morning: she anticipated my need for an umbrella, and reached around to grab one out of the backseat as we approached the church. Then, she asked if she could help me carry things into the church. Since I had my purse, briefcase, lunch, umbrella, and two cups of iced tea, I gratefully asked her to carry one cup of iced tea, and she did. Today got off to a much better start.

Do I Look Stupid?

Monday night Daughter didn't turn the TV off at the agreed upon time, and Tuesday morning she didn't want to get out of bed. Last night I wouldn't let her watch TV. She tried to convince me she'd learned her lesson and would be sure to get up in the morning. I still wouldn't let her watch TV. She asked to get on her computer, and I allowed it, with the stipulation that she not watch any shows on it. She had to be in my presence without earphones. She got on FaceBook. I told her it was time to turn it off and go to bed. She didn't do that. Once again, she wouldn't get up this morning. So tonight, she begged me to let her watch TV or get on the computer, and insisted she'd learned her lesson. I said no. Of course that prompted the usual: I was called names, informed she is an adult capable of making her own decisions and doesn't need my help (of course, she didn't put her linens in until I reminded her this evening), and she informed me she was leaving (the rain and storms put a damper on that).

Eventually she apologized (she's very good at that-- it was her 4th or 5th heart felt apology and promise to treat me better today). She has now gone to bed early, and insists she'll be up before 5:00. She can't figure out why I'm not excited about her commitment to get up so early....

Victim Mode

Daughter has fallen back into the victim mode. When I point out that I've tripped and almost fallen twice over shoes I asked her to put away yesterday evening, I'm the b*tch trying to control her life by screaming at her. (Of course it doesn't matter that I haven't raised my voice and she's yelling at me). It's one of those days when she's going to do anything she can to get me to say something to justify her raging at me. It doesn't matter what I say or how I say it, it will be seen as proof that she is the victim of a terrible mother and justify verbal abuse of me.

Choosing not to engage causes her to escalate. She can't sing the song she's been practicing for over a week because she sang it once with Grandma and it's not fair that Grandma had to die. When that didn't get a response from me, she went on a tirade about how all of creation was stacked against her and trying to make her life miserable. I gently informed her that her problems right now were the results of choices she was making, and that I knew she could do better, she had for almost two weeks. She didn't argue-- she fell asleep, unable to face that reality. I had to wake her up to go to her program. Usually she wants to go down early.

Part of the issue, unfortunately, is that staff engaged in conversations about issues that triggered Daughter's PTSD yesterday. She became psychotic with flashbacks. One was describing a serious auto accident that injured multiple family members. Another was dealing with her daughter who wanted to be rescued from an abusive relationship. That same one was dealing with her mother's hospitalization. They truly don't understand the impact they have on people like Daughter when they share details from their personal lives. Program Coordinator is going to explain again why this is inappropriate.

I know this post jumps around and doesn't make much sense-- kind of reflective of they way life is here in Capital right now....

Evenings at Home

With no meetings tonight, we were home. It was a beautiful evening, so Daughter and I worked out in the yard. I planted some flowers and did some weeding. Daughter worked with me, after first having a hissy fit because I told her no TV. She watched more TV than she was supposed to yesterday, and then didn't want to get up this morning. If watching TV makes it too hard for you to get up in the morning, you don't watch TV in this house.

I had a conversation with my next door neighbor. She may have a teenager who would be willing to mow my lawn while I'm out of town in July. She has several young boys, and I assured her I didn't mind if their play extended into my yard. Daughter wants to kick them out of the yard when she sees them, but it doesn't bother me. Ministry is supposed to be slower right now, but my daytime calendar is filling up. It's all good stuff, but it certainly is keeping me busy. Good thing I love what I'm doing!

PTSD

Daughter's having a bad day downstairs. Several of the staff members are dealing (quite vocally) with situations that serve as triggers for Daughter. She tried to convince me she was hearing voices and I needed to get her medication. I expressed my confidence in her ability to cope and gave her some suggestions. According to Program Coordinator, she shut down. PC came upstairs to deliver something to me, and I confirmed that the conversations would serve as triggers for Daughter. We are also approaching the 2 year anniversary of Mom's death. I hadn't thought of that until PC asked.

Daughter wet the bed again last night. She has an appointment with Therapist today, so hopefully she will be able to help her get back on track.

On the ministry front, Administrative Assistant is gone this week. It is turning into a very busy week. We're beginning to work on fall plans, and while I'm excited by the plans we're making, I already feel like I'm behind. The good news is that the evening commitments are lessening. In fact, last night was my only evening commitment this week. I'm looking forward to evenings at home, and hope I'll be able to get out and do some work in the yard.

Day Three

Daughter wet the bed again last night. She announced this morning that she knows why she's wetting the bed. It's because Boy Friend gave her a friendship ring. She's returning it today and breaking up with him. I think her PTSD was triggered Friday by the anger expressed by Boy Friend and ex-boy friend.

We had another long talk about not needing a boy friend right now. She came out wearing revealing tops, and I explained why that isn't a good idea. She put a blouse over the tank top and spaghetti strap top she'd layered. I don't know that she'll keep it on, though.

It could be an interesting day....

Baby Nephew and Boy Friend

Baby Nephew was baptized this morning. I couldn't be there, as it was graduate recognition here, but we made the drive over to their home this afternoon. It was a pleasant afternoon cuddling a very sweet and laid back baby and visiting with Brother and his family. Sister and Short Niece were there for a while, too.

Daughter has decided to break up with Boy Friend. She was waiting for me to tell her she had to break up, but I just kept saying I trusted her to make the right decision. She was telling everyone she knew that she had a Boy Friend and he's 48. They were all expressing dismay and encouraging her to break up.

She's wet the bed the last two nights, so I told her she needed to tell me what had gone on Friday. Apparently, the old boy friend was jealous and yelled at her. Her PTSD was triggered, she didn't feel safe, and the bed wetting was back. I bought a sack for her mattress today.

She continues to dream of a big wedding, marriage, and children. I reminded her that she has to be able to walk before she can run, and if she wants to achieve her dream she can work on being responsible. I suggested that was more important than having a boy friend right now. Will she take that to heart? I doubt it. I consistently tell her the same thing. Maybe some day she'll take it to heart. I keep hoping.

Emotional Demands

Poor Daughter. Both Birth Brother and Boy Friend are making emotional demands on her right now. She wet the bed last night-- first time in a week. She says it was because of the extra food she was into. I think it was a combination of things. BB wants her to dump BF. He says he's too old for Daughter. I told Daughter I trusted her judgment, and fully anticipated that after the dance BF would be history. She didn't dispute this assessment. What BB doesn't realize is that he's pushing her toward BF by encouraging her to break up with him.

Today we met Sister Best Friend and her mom for breakfast and an art fair. I spent too much money, but it was a fun day. Daughter was quite frustrated because I wouldn't give/loan her any money. Thursday when I gave her the money she'd earned, I reminded her that we would be going to an art fair today. She decided she didn't want money or the art fair, and spent it all on Thursday.

Daughter is now sleeping, and I need to get busy and get my sermon written for tomorrow. I may go sit on the porch to do it, as it's a beautiful day outside.

Some Things Haven't Changed

I went to the grocery store this morning, and then came home and made about 50 breakfast burritos for the freezer. I got a call from one of the saints, who was going to come clean out my clogged gutters, so I decided I needed to head outside and get the part of the lawn that was in danger of getting wet if he used water to clear the clogs. By the time I finished the lawn and came back inside, I was negligent and forgot to put all the groceries away.

Daughter came home and tried to pick a fight with me. That didn't work, so she took a long nap. She woke up when Sister called, and immediately decided she was being neglected and that justified getting into the groceries. I had bought a package of 100 calories packs of a sweet and salty snack mix to put on top of salads. She at 5 of the 6 packs. She confessed when I looked for them to put on top of the salad I was making for supper.

As much as she's improved, she still has an issue with food. I need to be more vigilant about keeping the food locked up. Today was a productive day, though the house is still a mess. I just finished cutting up a bunch of honey roasted deli ham and turkey, and putting it in half cup containers for the freezer. I use them on salads for lunch and supper. I think we're going to eat a lot of salad this summer. I also cooked quite a bit of marinated chicken on the grill last week. It's already in the freezer. I like to have a variety of toppings available to put on salads. I'm going to buy some more half cup freezer containers when we head to the store to pick up Daughter's prescriptions.

She'll be going to camp in a couple of weeks, and they need all the prescriptions in their original containers. As a result, I'm not going to be able to fill the pill boxes for the entire month. I'm going to have to sit down and so some calculating to see how much I can fill....

News on the Boyfriend and Residential

Yesterday morning I received a warning from staff about New Boyfriend. I was strongly urged not to allow him to take pictures of Daughter or Daughter to give him any pictures. It seems he likes to use those pictures when he is engaged in self-stimulation. Of course, Daughter had already given him 2 of her senior pictures.

While I was getting my hair cut at the mall yesterday evening, NB came to see Daughter, transported by a staff member from his home. The staff member helpfully took a picture of Daughter and NB together, and then asked if it was okay if NB printed it out. I said I'd prefer he didn't. NB then began calling me asking when he could have a picture of the two of them together. Sigh.

I'm going to have to set some limits on his phone calls. He's calling multiple times a day. When he couldn't reach us at home yesterday evening he tracked us down at the church and called twice. He also gave Daughter a ring yesterday evening. It's a "real ring from a jewelry store." I'm trying to stay out of it, and I'm really hoping that the relationship will end after the dance on the 3rd.

In Tiny Village staff was not so willing to transport residents to meet Daughter. Of course, there wasn't a mall within 2 miles, either.

In other news, Case Manager is exploring a possible placement for Daughter 20 miles from here. My initial reaction was no way. I don't want Daughter pulled out of her program and the church at the same time she's moving. I feel like that would be too much change for her at once. It would also be harder for me to see her through the week. I fear that moving her that far away would result in her feeling completely abandoned. I prefer to minimize the disruption. She's just stopped wetting the bed, which I see as a response to all the change and uncertainty brought on by our move. Of course, the other reality is I will really miss her when she moves. Case Manager pointed out that there is on demand public transportation available she could use to get to choir practice and such. I agreed she could continue exploring it, but would have to do some praying before I agreed this was a good thing for Daughter....

Freedom is Hard

Daughter earned some money working in the church office yesterday. I asked her if she wanted it, or if she wanted me to hold onto it for her. This morning she told me she wanted it. She was considering how she was going to spend it. I reminded her of several things she had said she wanted to save her money to buy. She asked me what the boundaries were on the money. I told her there were no boundaries, she could do whatever she wanted to do with it. She continued to run through various possibilities and ask me questions about various options. Finally, she said, "Freedom is hard." I fully anticipate that all the money will be spent by the end of the day. That's fine. I won't be buying her things, though. I hope that eventually she will learn a bit more about managing her money. I hope. I won't think about all the times we've tried this before. I'll just hope that this time will be different.