Tuesday, September 30, 2008

Diabetes Update

Daughter made it through the day without a low. She was very high at lunch, but the rest of the day her numbers were decent. She will be returning to the sheltered workshop tomorrow. I will be having a quiet celebration and keeping my cell phone handy. She still is not getting the full dose of her long acting insulin. I will have to start it up again at some point, though.

How Parenting and Ministry Inform One Another Part 1

The other day Daughter was raging about something or other. I work hard at not reacting to her rages. I let them run their course, and then we talk about ways to avoid triggers and deal with emotions after she’s calmed down and become somewhat rational. I always assure her of my continuing love. I’m able to do this because I know the rages are not about me. I know that she spent the first couple of years of her life in a house of horrors, and that even though she may not have verbal memories of all that went on, she was deeply damaged. I also recognize that she may have brain damage from prenatal exposure to alcohol. Anyway, the other day when she was done raging and I assured her again of my love, she told me, and not for the first time, “You shouldn’t love me.”

I have heard variations on this a number of times. “I don’t deserve to be loved.” “You shouldn’t love me.” “I shouldn’t have a family.” Yet how could I not love her? I have loved her for 18 years, since she came for the weekend as a big eyed little girl who stood at the edge of the room watching everything that went on (hyper vigilance, though I didn’t know that then). I have made life decisions based on her needs. I have been less concerned about making moves that advance my career than about making moves that advanced her healing. She continues to argue with me about whether or not I should love her, and my love only grows. I can’t begin to describe the hateful things she has spewed at the height of her rages. I work very hard at not hearing or remembering them. Occasionally she will come up with a new phrase, and her therapist and I will chuckle over her creativity later.

Now don’t get me wrong, her rages do have an impact on me. I don’t hate her or want to get rid of her or give up on her, but I am exhausted. One of the things I realized early on, one of the things that keeps me going, is that I recognized that what happens in her rages and my continuing love and commitment to her is at the heart of the Gospel. We don’t deserve God’s love. Yet there is nothing we can do that can stop God from loving us. According to Luke 23:34, on the cross Jesus made a plea for the ones who were responsible for his death, “Father, forgive them; for they do not know what they are doing.”

There have been times when she was threatening to kill me, and she has had realistic plans. I have told my family and friends that even if she one day kills me; I do not for a minute regret adopting her. I would do it all over again, even knowing what I know now. Yes, there are times when I’m exhausted and wonder how I can possibly keep going. Even at those times, though, I can’t imagine life without her. I can’t even think about how empty my life would be if I weren’t sharing it with her.

Because of Daughter, I have this profound understanding of the Gospel and God’s love for us. I regularly remind people that our love is just an imperfect reflection of God’s perfect love. If I can love Daughter this much, in spite of all her challenges and the hatred she spews at me sometimes, how much more can God love me? This understanding informs my ministry. How can I remain angry at someone who God loves so much?

When Daughter is raging, I know that what she needs is for me to remain calm and present. She needs to know that I won’t abandon her. So, too, does the church. I strive to remain calm and present for them, as well. I don’t always live up to that, but that is certainly my goal.

That’s the beginning of my reflections on parenting and ministry. It was what I had originally intended to do when I started this blog. It wasn’t until Process prodded me that I did it. Thanks, Process.

Good Morning

After the alarm went off, I fell back to sleep. I was sound asleep when Sister called me on her way to work. Niece has had strep throat, so this was their first day back to school. Sister wanted and update on Daughter. She dropped into the 40's again at 9:00. Sister suggested maybe I bought the wrong brand of low fat cottage cheese, since it wasn't the miracle cure the endo thought it would be. Daughter had some glucose tabs, a banana and ice cream before she went to bed. It brought her blood sugar up to safe levels over night. Her blood sugar was decent this morning we want it under 110, and it was 135. She's staying home again today-- this morning she expressed an interest in going, but she slept all day yesterday. I told her if she got up and did some work today and stayed awake, we'd talk about her going back to the workshop tomorrow.

I have to be in the office at 9:00 this morning. She will have to go with me. Hopefully I'll be able to find something for her to do. More later.

Monday, September 29, 2008

Low, Again

Sigh. So her blood sugar was high until 4:00. It didn’t stay in range. By just after 5:00, she was in the 40’s. I’ve been feeding her ever since, and haven’t even been able to get her blood sugar up to 60. We treat anything below 70. I called the endo, who told me the problem is that I’m not feeding her fruit mixed with low fat cottage cheese. Yes, she wanted me to drive 12 miles to town and buy low fat cottage cheese. She has now had fruit and low fat cottage cheese. Sure enough, it cause her blood sugar to drop—again.

I’m supposed to start her back on her long acting insulin tonight—though not the full amount. I’m reluctant to do that when she can’t keep her blood sugar up when she hasn’t had any insulin in her system since her short acting insulin wore off 4-5 hours ago. At best, it will be another night when I worry and set an alarm so I can check her blood sugar while she sleeps.

Maybe tomorrow I’ll have a post with more substance.

Stress, Continued

Well, we made it through the night without any more lows. I talked to the endo this morning, and of course it’s my fault. She told me what to do with her insulin today, and I’m to call her back this evening for instructions for her long acting insulin.

She’s running high today. That’s probably my fault, too. Daughter is bored, I’m just tired. I cancelled a breakfast appointment but dragged Daughter with me to get my hair cut. She twisted herself around on the bench where I left her to wait so that she could watch me the whole time. At least while she was staring at me she wasn’t hanging on me.

I know she’s still scared from last night, and she finds physical contact reassuring when she’s scared. So I allow it, even though I would prefer she allow me a bit more personal space. When I’m tired, as I am today, and she’s clingy, I can feel her sucking the energy right out of me. I may send her up to watch TV, but I don’t know if she’ll be able to tolerate being that far away from me right now.

I’m thinking on a post about how my parenting and ministry have informed one another. I hope that after lunch it will provide a pleasant diversion to take my mind off diabetes and Daughter....

Sunday, September 28, 2008

Humor, Joy, Stress

Take your pick, tonight I have something for everyone!

Following worship this morning I was standing in the aisle talking to 4 women when suddenly I felt the half-slip I was wearing slip. I looked down, and it was around my ankles. I said, “Well, I’m glad that I’m talking to women.” I then bent down and picked it up and placed it on top of the books I was carrying. There had been no warning, and that slip had always fit well. I really was grateful it happened when it did rather than 10 minutes earlier. It would have been exceedingly embarrassing if it had happened when I was leading worship. Our pulpit is open, so the whole congregation would have seen. As it was, we all laughed about it.


I have been here for 12 years now, so I have watched many of youth and young adults grow up. This morning I was sharing praise for the leadership of one of our older youth to his mother. When I told her I wanted to praise her son, she said in surprise, “J?” I told her she shouldn’t act so surprised, but he was always the most challenging of her three children. She told me that he had told her recently that when he doesn’t get to church on Sunday morning his week just doesn’t go right.

This afternoon we reviewed our new model for children’s ministry. We have some post-highs who had been continuing to attend the youth Sunday School Class, so I had pulled them in as leaders for this new way of doing things. The kids love them, and the new leaders are having fun. The one young man, who is 20, gave me fits in junior choir when he was younger. We were discussing ways of dealing with the more challenging kids in the group. I asked him if one of his techniques would have worked for him. He grinned and said, “No.”
He has a big truck with a fancy stereo. He has the bass turned up so loud you can hear him coming. I told him about wondering if he was in front of my house when the cats got trapped in the attic. He was amused. I'm so glad we asked him to take on this responsibility. We didn’t even know if he would be willing to handle the games, but he is having a blast. He has lots of ideas and wants to do more decorating. He’s going to meet with us next Saturday morning to plan next month’s lessons. “I’ll get up and start working the ground at 6:00. I can take a break at 9:00 to do this.” There is so much joy in seeing this challenging little boy grow into a responsible, caring, Christian man. When he left, I heard this loud rumbling. He had pulled his truck (which needs a new exhaust system) up to the open door and was sitting there revving the engine with a huge grin on his face as he waited for me to come out and say something. So I did.

Tonight we had youth group. The kids had wanted to make pizzas, so tonight they did. They also wanted to do a Thanksgiving dinner, and tonight one of the girls came in with the suggestion that they each invite one senior citizen they know to come share our Thanksgiving meal. They loved the idea. We’ll have to sit down and do some planning, but I was really proud of them and their desire to reach out to our seniors. They were pairing up to make their pizzas, and it was wonderful to see them making sure our special needs kids were included and no one was left out. I love these kids. I've known them since they were preschoolers, and it's great to see them growing up and being so thoughtful.


Daughter had a low right after breakfast and before worship. She was sitting with a saint who is experienced with diabetes, so I knew she’d be fine. She had another low right before lunch. I cut her insulin way back for lunch. Then about 4:00 she had another low. Since that time she’s had more glucose tabs than I can count, pizza, brownies, pineapple, and peanut butter crackers. Her legs have given out on her, causing her to collapse onto the floor. She’s been bent over in pain, sobbing, as she held her head. We left youth group early because she was so miserable and kept dropping.

When she dropped into the 50’s again and told me she didn’t think she could eat anything else I took her to the ER in Town. I decided to go to the local one 15 minutes away instead of the big one in the City 40 minutes away. I wanted to get there quickly, and I knew the Town one would be faster once we arrived. I was right. When I walked in and showed them her blood sugars for the day, with the majority of them in the 50’s, they had her in a bed before they’d even seen her insurance cards. The ER doctor (who didn’t look much older than the young man with the big truck) wanted to admit her. He called her endocrinologist, who didn’t want her admitted to the adult unit in the City (where local hospital wanted to transfer her). She pointed out that she was due for her once a day shot of long acting insulin, so I should just skip that tonight. I’m to let her eat whatever she wants and check her blood sugar every 4 hours. If it is above 240, I’m to give her some fast acting insulin. I’m to call the endo at 6:00 in the morning to report on how she is and get further instructions, which will probably include being admitted to the pediatric unit in the City so they can figure out what to do with her insulin. We were in and out of the ER in about an hour. As we were leaving, 2 squads came in. The staff in the ER were kind of freaking about 2 squads at once. That’s a lot of action for Town ER.

Since we’ve been home, she’s dropped into the 50’s again. That drop took place when all insulin should have been out of her system. She had glucose tabs, a banana and ice cream. It could be a very long night.

Saturday, September 27, 2008

Listening, Loving, Waiting

I was debating between two possibilities for today’s post: Daughter or M, a young woman who has sought out my ministry over the years. Then I got a comment from Process asking to hear more about my ministry, and decided that I’d write about M.

I remember the first time I met M. We were in town for the interview. M was 10, about a year older than Daughter. M came up to our car as we were ready to pull away from the curb, and I rolled down the window to speak to her. She was excited to think that maybe Daughter could become her friend. She was obviously lonely and a little bit different. I was pleasant and encouraged the idea of a friendship.

Shortly after we moved in, she explained to me that she was reading Winston Churchill and wanted to read some of the passages to Daughter, because they were so intriguing. I knew then that she was in a completely different league than Daughter. Her family is interesting to say the least. They delight in being different. Both of her parents are exceedingly intelligent and well educated—we have joked that there is more education in our two houses than the rest of Tiny Village combined. M is the youngest of many children. I think her parents were worn out by the time she was born. Mother is a screamer. She once screamed at her husband because he mailed some checks she had sealed into envelopes and ready to go. She didn’t want them mailed yet and he should have known that. M tells me she was awakened by the sound of her mother screaming at her father because he’d made his own dental appointment. What if she’d wanted him to do something at that time? Father is a professor, lacking in social skills, common sense, and an awareness of his surroundings. He reminds you of an overplayed and exaggerated nerd from some sit-com.

The brother closest to M’s age was hospitalized shortly after Columbine. He had made out a hit list of classmates he wanted to kill. (Talk about an interesting challenge in ministry—some of those listed were members of the church, as are his parents!) His parents were outraged. There was nothing wrong with him and he was being unfairly persecuted. He was sleeping in a coffin he’d made in shop and claimed to be a vampire, but that was just his unique personality coming out! He is very verbally abusive to M. When she is talking to her parents, he will tell her to shut the f___ up and that no one wants to hear what she has to say. Her parents will let him rant and rave at her without intervening. Most of the time her parents aren’t at the house; they spend a great deal of time at their second house in a tourist area.

There’s more, but I think you begin to get the picture. M has had a rough life, and she has turned to me at various times for guidance and conversation. I find this interesting, because M is an atheist. I have welcomed her into our home, taken her out to eat so we could converse (at breakfast with her less than a year ago she tasted scrambled eggs for the first time in her life.)

M is within a few classes of finishing her undergraduate degree. She is working third shift stocking shelves for a local retailer. She has been involuntarily committed twice in the last year for severe depression. I encouraged her mother to take her for counseling when she was a young teen, but her mother dismissed her need. I’m just so relieved she’s now getting help. With both hospitalizations, her mother has ranted and raved over perceived mistreatment of M. This past time she contacted her state legislators. M and I have laughed about it later, but as I pointed out to M, at least it shows her mother really does care about her. M’s psychiatrist thinks she is autistic, so she’s practicing looking at people now when she talks to them.

M is a brilliant writer, but her writings are very dark, and usually focus on death. I have been allowed to read excerpts from the young adult novel she is writing. My comments have been well received and led to revisions. I have been encouraging her to finish those last few college classes so she can go to grad school. Right now she’s feeling trapped in Tiny Village. One of her professors suggested she consider becoming a librarian (I know, it’s called something else now). She dismissed the idea, but I told her I thought it was a great idea and a perfect match for her gifts and interests. Once I encouraged her to look into it, she did, and decided it was what she wanted to do.

Yesterday she sent me a disturbing email. She had found out something about her most recent psychiatric admission that had her questioning whether she could trust her psychiatrist. I told her to come over so we could talk. She was on her way to work, so she couldn’t then. I suggested she stop in this morning, and she did.

I listened and empathized. I pointed out why this discovery about her psychiatrist had been so hard on her and how it connected to her family experiences. I suggested what she might want to include in a letter to the psychiatrist. I praised her, and pointed out how well she’d dealt with this. She hadn’t gotten drunk. She hadn’t abused her prescriptions. She hadn’t run away. I pointed out her progress. I suggested that feeling trapped here was going to make things like this hard, and encouraged her (again) to take the first step towards finishing her degree so she could get on with grad school. I told her that would be a good way to escape this place.

As she left, she said, “You’re awesome, I love you!” I was blown away—I’ve known she connected to me and that I was offering something she needed, but it’s the first time she’s expressed it in quite that way. The memory of her parting words will carry me through my next few frustrations.

Now here’s the thing: M recommends books and lyrics regarding Christianity. She sends me articles about how a minister handled a particular situation with the subject “What would RM do?” When she first told me she was an agnostic, I told her that was fine, because when she did come to faith all the questioning she had done would make her faith stronger. I think everyone else she told had been horrified or argued with her. She has told me things she has done that have horrified me. I'm careful, though, not to let that horror show through. I can make suggestions and offer guidance, but it's her life.

On one of her school breaks she was filling me in on all her friends at her out of state college. She told me she didn’t think any of them were happy, with one possible exception. She had earlier told me she thought this young man would end up a priest. I told her I could explain to her why this young man was the happiest of her friends, but she wouldn’t like what I had to say. She became silent and reflective. She didn’t pursue it, and neither did I.

I have no doubt that M will become a Christian. I also know that if I push her about Jesus, she will run away, and a door will close. So I listen to her, I love her, and I wait. Sometimes it seems that much of my ministry comes down to listening, loving, and waiting.

Thursday, September 25, 2008

I Knew It

Okay, I knew I was going to regret it. I never should have praised Daughter’s coping skills.

There were two phone calls from her today. She was crying in the first one—one of her friends was teasing her. She asked him to stop, but he didn’t. I reminded her that if she had used her voice and he wouldn’t stop, she should talk to a supervisor. In the second one, she wasn’t crying, but she still didn’t think she wanted to stay at the workshop. She did.

I bought some chocolate covered pretzels Tuesday. She asked for some Tuesday night as we were driving home, so she read me the nutrition information, and I figured out how much insulin she’d need to have some. Tonight I asked her where the pretzels were. She started in on a long story. She got into them and ate them last night. Her blood sugar wasn’t high this morning because I’m trying to correct my mistake and get all her long acting insulin back to evening.

I may have sighed, but I didn’t say anything about what she’d done. She, however, went ballistic. She walked out. She swore at me. She told me her health was none of my business. She told me she didn’t need my help with anything.

She eventually apologized, of course. When she finally calmed down, I pointed out that when she asked me for pretzels, she was able to have some. I suggested that if she had tried the same thing last night, she could have avoided all the drama.

Do I expect her to remember that next time? No, but I hope. I have to keep hoping. It’s an occupational hazard.

Wednesday, September 24, 2008

Coping Skills

I will probably regret this, but I’m going to brag a bit on Daughter’s improved coping skills. Visiting grandparents hasn’t been easy for her the past few years. She has found Grandma’s dementia to be very disturbing. She once said to me, “The fun Grandma is gone and this Grandma scares me.” When we visited in their home, she could escape when the stress became too much for her, but that’s not possible with Dad now living in a one bedroom apartment.

I was concerned about disrupting her routine to go there Monday, as she hasn’t been very stable in recent days. She told me, though, that we needed to go, which surprised and pleased me. Normally she hates visiting when one of them is in the hospital.

So we went. We visited Dad, and Daughter was fine with that. She also did well with Mom. She was cooperative on cleaning the apartment. Almost as soon as we got in she tackled the refrigerator. Tuesday morning I left her at the apartment while I went to the cottage to meet the new nurse practitioner that was to examine Mom for the first time that day. She cleaned up the bathroom and did some other things while I was gone. When I got back, she decided to walk over on her own to see Grandma, which really shocked me.

She was very helpful with Dad, anticipating his needs for his walker or for the car door to be opened and taking care of them cheerfully. When I asked her to do something, she did it without questioning.

We ended up staying much longer than I had planned. She did well with that delay, too. She didn’t complain, though she did come over and kneel in front of me and put her arms around my waist and her head in my lap at one point. As we waited for supper to finish cooking, she voluntarily cleared the dining room table and set it.

When we finally left, she had a number of issues she wanted to talk to me about. She was quite realistic in our discussion. She stayed awake all the way home, even after I put in an audio book. Often she’ll sleep when we’re on the road. When it’s late and I’m struggling to stay awake (as I was last night), I prefer to have her stay awake and keep me company. She did that without me asking last night.

I thanked her for her cooperation, and suggested that when we got home it would be better for her to tell me with her words if something from our trip was bothering her, rather than showing me by her behavior, as she does sometimes (often). She thought that was a good idea.

Those trips to care for my parents are always hard on me, and by her behavior she made it much easier. I celebrate her progress and the hope it gives me for her future.


Tuesday Dad was discharged from the hospital. He’s doing very well. After he was discharged, I took him to the grocery store and over to see Mom. He helped me chop things for the apple meatloaf he’s been craving. He didn’t take any of his normal catnaps, which amazed me. We left later than I had hoped, and didn’t get home until about 10:15. When we drove into Tiny Village, all the houses were dark. I thought it was pretty early for everyone to have gone to bed, and then I realized the street lights weren’t on, either.

There still wasn’t any power this morning. Since we’re on a well, that means no water. I wouldn’t let Daughter open the refrigerator door. I couldn’t check messages or caller ID. I have sleep apnea, and since my cpap machine wouldn’t work I slept in the recliner in my room so my head would be elevated and I could breathe. Daughter slept in my bed. We were only able to find one flashlight—the one I keep in the car. In the confusion, we forgot Daughter’s long acting insulin, so she was high this morning.

I talked to one of the saints this morning, and it seems that a transformer blew before 8:00 yesterday evening. The power company said they’d have it fixed by midnight. Maybe they should have asked midnight what day. I brought Daughter to town and bought her breakfast at McDonald’s and bought some ice and something she could take to the workshop for lunch.

Our first senior luncheon is supposed to be today, but we’ll have to cancel it if the power doesn’t come back on soon. I came into McDonalds to connect with their wireless network, but haven’t been able to connect. I’m going through withdrawal without my internet fix.
I am in desperate need of a shower.

Later... the power came back on about 10:00 this morning. I was able to shower, and we were able to have the senior luncheon. Attendance wasn’t great, but we had a good time. Daughter went to the workshop because she was supposed to go to observe on the apartment cleaning again today. They didn’t let her go, and they didn’t have any work for her. She isn’t very happy, as she has always enjoyed the senior luncheons, and would have stayed home if she’d known she would just have to sit and watch her friends work today.

Monday, September 22, 2008

Guilt Trip

Mom has always been the champion of guilt trips. She turned the guilt trip into a very effective way of influencing our decisions. After stopping at the hospital to visit Dad (who is doing very well and will be home tomorrow), we went to the Cottage to see Mom. When I walked into her room, she recognized me immediately and began to cry. The good news is she knew me even though she hadn’t seen me in over two months. The bad news is I immediately felt guilty for not making the trip up here for over two months.

I thought she was in pretty good shape today. I told her we’d been to see Dad, and she immediately looked at me and asked, “Where’d he go?” I explained that he was in the hospital. I’m not sure if she understood, or not, but she seemed satisfied. I sat with her as she ate lunch. At one point she looked at me and said, “You’re cute.” I’m fat and old, and it has been many years since anyone called me cute. When I told Sister, she observed that Mom’s dementia has become very advanced. I suppose that is a more reasonable explanation than that I’m actually cute.

We took Dad’s watch to a jeweler to get a new battery, and after stopping by the hospital again, met Sister and her family for supper. Niece is the cutest, smartest 3 year old I’ve ever seen. She has decided that she is Violet, from The Incredibles, and informed the waitress that we needed a chair for her brother, Dash. After supper we stopped at a department store to get the new sheets Dad wanted us to buy for his new, thicker mattress.

Daughter cleaned out the refrigerator and the kitchen today. I need to tackle the cupboards. I’m supposed to remove all the food he’s no longer allowed to eat. I’m also supposed to go meet Mom’s new nurse practitioner tomorrow morning, and before I go, write a letter about why we requested the change. I think that the powers that be will find our reasons compelling, given that the old NP kept insisting that Dad wasn’t in congestive heart failure but was just getting fat, even after he gained 60 lbs. of fluid. We’ll bring Dad home whenever he’s discharged tomorrow and get him supplied with groceries. Whatever time we leave, I will once again leave with the feeling that I should have done more.

I spent this evening writing newsletter articles and planning the worship service for Sunday so I could email all the information to the church for the secretary to work on tomorrow. I’ll have the same feeling of leaving things undone when we get home tomorrow evening, too. Sometimes it feels like it doesn’t matter where I am, I feel like I should be someplace else.

Sunday, September 21, 2008

The Concert

have been taking Daughter to concerts since she was 5 years old. We have gone to indoor and outdoor concerts; we have been to classical, country, folk, rock, jazz, ragtime, world music and others I can’t remember right now. We’ve heard orchestras, vocal groups, bands, solo artists, and pianists. We’ve been to ballets, musicals, and comedies. Daughter enjoys all kinds of music, and has an amazing ear and memory for music. She enjoys all of it.

Last night we heard a man who did Sinatra songs. It was very good. Now as much as Daughter enjoys these concerts, it seems like she always tries to convince me we should leave at intermission. Last night she started in early. We took our seats and she told me she felt like she was going to have a seizure. She has never predicted a seizure, and hasn’t had one in over 18 months. After the last one we increased her medication, so I don’t anticipate her having another one. Then she checked her blood sugar; it was fine. As the concert progressed, she put her head on my shoulder because she was sooo tired. She held my leg down when I began tapping my toes. She wrapped herself around my arm, not wanting me to clap. I heard all about how she didn’t feel good. At intermission I asked her if she wanted to go to the restroom with me. She didn’t. She was pouting because I wasn’t willing to take her home.

When I came back from the restroom, she was eating some of her emergency crackers. I asked her if she had dropped, and she assured me she had. I asked if I could see her meter. She got upset, and dropped the remaining crackers in her bag. I told her she had to take insulin to cover the crackers she had eaten. Now she was mad. I wasn’t to touch her. She sat there, rigid in her seat, as the concert resumed. About half way through the second half she leaned over and whispered in an apology in my ear. Then her head was back on my shoulder, and she was once again wrapped around my arm. She again asked to leave early. I refused. As I expected, the closing song was My Way, and the encore was New York, New York.

Daughter doesn’t have to enjoy the concerts, but I will not allow her to interfere with my enjoyment of them. Our next concert is Irish dancers. She asked me to buy this series when she saw the advertisement for them. She’d better be grateful. The sad thing is, I know she enjoyed the music last night. She was just in one of her moods.

Tomorrow morning we head to my Dad’s. He’s feeling much better, and his kidneys are fine. The doctor said he could go home tomorrow or Tuesday. Sister wants to meet us for supper tomorrow evening. Our ability to do that will depend of when Dad gets out of the hospital. Our trip will make a busy week busier, but it will be good to see family again. Daughter has indicated that she is eager to go and be helpful. I hope that she continues with that attitude.

Saturday, September 20, 2008


Dad is feeling much better. He got hungry during the night and ate a tuna sandwich. It’s the first solid food he’d had in about a week, and it tasted good and didn’t bother his stomach. His kidneys are doing fine now. He will probably go home Sunday or Monday.

I’m hoping for Sunday, because then I wouldn’t need to make the trip on Monday. We still need to go up for a day or so sometime soon. Daughter pointed out that it’s been a while since we visited, and we need to go. One of the reasons we hadn’t gone was because I was concerned about her ability to handle it, but she seems to think she won’t have any problems.

She’s still not as stable as either one of us would like. She wanted me to call Psychiatrist today because she was feeling very weepy. She continues to get into food at night and have high blood sugar in the mornings.

Tonight we have tickets for a concert through a series we subscribe to. I think it will be good for both of us to sit back and enjoy a concert. Tomorrow will be a very busy day. In addition to worship and Sunday School, we have Special Olympics Bowling in the afternoon and I have two meetings in the evening. I so hope we don’t have to leave to go to take care of Dad Monday morning.

Friday, September 19, 2008

Putting Together the Pieces

Dad has not been feeling well this week. Actually, it’s been over a week, since food stopped tasting good over a week ago. He was attributing his problems to a stomach bug. Wednesday when I talked to him, he was feeling some better, but had been sleeping quite a bit. He mentioned that he needed to drink more water, as his diuretic didn’t seem to be working. When I talked to him yesterday, he was drinking more, and while he was now urinating, he also was struggling with diarrhea. I’ve been calling him daily this week to check on his well-being.

I began to think about how long this had gone on, and the fact that his kidney function isn’t the best, and the weekend is approaching. I recalled all the hours that had been spent with him in emergency rooms on holidays and weekends waiting for him to be admitted to the hospital. I called Sister and Brother. Brother had no idea Dad has been sick all week. Dad had told him not to pick him up to take him for blood work that morning, explaining he was having some problems with diarrhea. Sister made an appointment with the doctor this morning, and Brother agreed to take him. I have just talked to them both. Dad’s blood work is out of whack, and depending on the results of some stat blood work the doctor ordered, he may be admitted to the hospital today.

It’s at times like this I hate being 150 miles away. I’ve been weighing my schedule, my to do list, and Daughter’s stability, trying to figure out when (or if) I can make a trip up there to see Dad and take some of the load off Sister and Brother. Daughter still isn’t stable, so I’m reluctant to disrupt her routine. Brother flies out on a business trip tomorrow morning, beginning several weeks of travel. Sister is balancing teaching first grade and the needs of her 3 year old daughter with the needs of our parents. She’s been dealing with Mom’s health issues this week, and has switched Mom’s doctor after yet another screw up by the nurse practitioner who was seeing her in the cottage.

So, I waited by the phone and ran through various scenarios in my mind. I visited the saints in the nursing home and waited for my phone to ring. It rang, but not with news about Dad. Daughter was having a low blood sugar and I needed to go pick her up from the workshop. I rushed through my last two visits and went to get her.

Dad was admitted to the hospital at 8:00 this evening. Brother flies out early tomorrow morning. Early Monday morning Daughter and I will head up to see Dad. We’ll come back on Tuesday evening. It’s newsletter week, which will make the rest of the week stressful, to say the least. Hopefully Dad will be discharged while I’m there and I’ll be able to handle getting him home and settled.

Thursday, September 18, 2008

White Pills

Today I picked up the new prescription for Daughter’s Abilify. Instead of taking one 30 mg pill in the evening, she’ll now take one 20 mg in the evening and half of a 20 mg pill in the morning. When I opened the bottle when we arrived home, I groaned. They are white. Lithium, Trazadone, and Vasotec are also white. Daughter now takes six white pills in the evening and two and a half in the morning. To make it more challenging, the Trazadone and Lithium are about the same size.

We fill pill boxes for four weeks a time. I handle the more challenging pills—the ones where she gets multiple pills or they are all white. I don’t know how many times I’ve had to take all the white pills out of an evening box and carefully read the microscopic numbers to make sure I didn’t drop an extra pill into that particular compartment. Daughter gets to handle the colorful pills—like the orange Simvastatin, the formerly pink Abilify, and the green iron supplements. I can easily check to make sure she has one in the appropriate compartments.

The day we fill the pill boxes just became more complicated. I needed more complications in my life.

Wednesday, September 17, 2008

A Vote of Confidence

Daughter is concerned about a friend at the workshop. This woman is in her 30’s and is living with an abusive boyfriend. She has a 4 year old daughter. Daughter asked tonight if they could come live with us and I could adopt them. I was mean and said no. I’m glad Daughter is so concerned, and sees me as being able to help them. However, I really don’t think I need any more stress in my life right now.

Daughter is still anxious. The last two nights she’s been into food, which has resulted in very high blood sugars yesterday morning and today. I know much of it was caused by my attendance at the meeting yesterday evening that didn’t get me home until after her bedtime. Several times today she’s come up behind me and put her arms around me and just leaned.

Today she had the opportunity to go with the work crew to get trained on the apartment cleaning. She was so excited about it, and called me as soon as she got back to the workshop. I hope that a spot will open up for her to be a permanent member of the crew soon.

The pastoral care load just got a little lighter—the saint who has been in the hospital due to complications from a “routine” outpatient procedure is being discharged this evening. She still has a long way to go in her recovery, but the improvement from yesterday to today was amazing.

Tuesday, September 16, 2008

It's September

This is always a busy month with the start-up of fall program. Today was a 12 hour day, and I didn’t stay until the end of the regional church meeting I had this evening, or it would have been much longer. Daughter knew I had this meeting, so she announced she didn’t feel good this morning and couldn’t go to the workshop. Being the suspicious mom that I am, I didn’t buy it, so she gave up quickly. I acknowledged that I knew she was worried about me not being home when she got home.

She called me during her break this morning, and I called her this afternoon when I knew she would be on the bus home. I had left her a chore list and money so her respite provider could take her shopping. She bought a CD she has wanted for quite some time, so she was happy. I knew that if her time was structured, she’d be okay. I was right.

Moving her Trazadone up to 7:00 p.m. helped her sleep last night. I need to get to the pharmacy so I can make the change with the Abilify, too. I’ll drop the prescription off when I’m in Town tomorrow to visit the saint who is in the hospital.

I talked to Dad on my way to Town today. He has been fighting a stomach bug. He thought he was over it this morning when he got up, so he ate his normal breakfast. That set him off again. He was trying to decide if he should go visit Mom in the memory care unit. I told him if he was sick he couldn’t go over and breathe on all those women. I asked him if he had anything in the apartment that he could eat that would be easy on his stomach. He said he thought he’d grill a steak for supper. I suggested toast would be better. I called Sister and asked her to check with him on the way home and see if he needed her to stop by the grocery store to get something easier on the stomach. She called, and convinced him that an English muffin and weak tea were a better idea than a steak. Fortunately, he had both on hand.

He was very talkative for both of us. He hasn’t been out of the apartment in a couple of days and is lonely. Hopefully he’ll be recovered by tomorrow and can resume his normal routine. Brother called last night to tell me that Dad had told some women at the church that he thought he’d need to move into assisted living soon. I guess that gives us something to look forward to....

Monday, September 15, 2008


We made it to the appointment with Psychiatrist. She told us to move her evening medications up 2 hours, and also is splitting her Abilify between morning and evening. If this works we’ll go back in 2 months, if it doesn’t, we’ll make an appointment to see her sooner.

On the way home, I decided to stop at the nursing home where Daughter’s friends and one of the saints are currently residing. Daughter didn’t want to go visit her friend. His room faces the parking lot, and I suggested that he would be very disappointed if he saw us and she didn’t go visit. She went to see him, reluctantly. When I went to pick her up, she said, “Can’t you go do something else and come back and get me later?”

So, I went to the hospital to visit the saints there. One is being discharged; one still has a long way to go. Both were glad to see me. I called Daughter to tell her I was on my way, and still had to wait when I got there.

Since we got home, she has been very busy. She finished cleaning her room, complimented my cooking, and is still hard at work. She is surprised and pleased by her attitude. I suggested that she had been worrying about seeing Psychiatrist and was relieved it had gone so well. She thought I was on to something. She has announced that tonight she is sleeping in her own room.
Tomorrow I have a meeting 90 minutes from here, and won’t be home until well after 9:00. I’ve arranged for a respite provider to come stay with her. She was disappointed that I would be gone, but bounced back quickly. She wanted to stay awake until I got home, but finally decided it would be okay if I just came in and told her I was home.

Today was supposed to be my day off. I spent almost 2 hours on pastoral calls this afternoon, and called to straighten out a mess with an order this morning. There were also an unusually large number of phone calls today. I love it when people start the call with, "I know this is your day off but...." The week is filling up quickly. Some of the commitments will be fun. Several will be stressful. If Daughter maintains her current attitude most of the week, I will be fine.

Sunday, September 14, 2008


I allowed my frustration to show with an innocent young man this evening. I’ve apologized, but I still feel very guilty.

This has been a stressful day. It was busy. I led worship, taught Sunday School, took Daughter to bowling (and helped with record keeping), did hospital calls, ran to the grocery store to get ice cream for youth group, and then came home and led youth group. Daughter’s situation continues to be a stress. Sister has been having a rough week, and I’ve been getting calls from her.

Then there is the whole equipment situation at the church. The money is managed by a group of men who do not want my input. For well over a year I’ve been telling them the office computer is on its last legs and they need to budget for its replacement. It was donated a couple of years ago and was used then. The operating system is corrupted. The keyboard sticks. (I found an old okeyboard in the attic that I will take over to the church this week). Most recently we’ve begun getting warnings that the hard drive is almost full. I checked, and it only has a 6 gig hard drive, so it’s no wonder. It takes forever to start up, and we usually have to reboot at least once every morning. We have dial up internet, which ties up the phone line. When we’re online, we can’t do anything else on the computer. It took an hour to download a photo someone sent us for a press release. We have 7.5 hours of secretarial time a week, and over an hour of it is lost each week to computer issues. I have asked them to get DSL, which would cost the same as dial up, but they keep refusing, saying they don’t understand why we even need the internet at the church. So tonight an elder went to these gentlemen with the message that we need a new computer and DSL in the office.

I’ve also been telling them that the console TV we have been using for years was dying. The picture has been crooked for several years. They’ve been putting me off on that, too. Tonight I went over to set up the DVD (on the DVD player I donated) I was going to use for a discussion starter at youth group. The picture was rotating horizontally—there was a vertical control, but no horizontal control on the TV (yes, it’s that old—it has a channel dial and vertical control and contrast, brightness, tint, etc. dials). I tried working on the connections (we have an adapter so we can attach coaxial cable from the VCR to the antenna leads on the TV—we have to run the DVD through the VCR). Nothing worked. I moved the DVD player to the 13 inch TV we have in a Sunday School room. (Oh, the controversy when I asked for that.) I had 14 youth gathered around the little screen to watch the DVD. I had to read some of it to them, as the print was so small they couldn’t make out what was on the t-shirts. We have movie night in 2 weeks. I don’t think it will work on that TV. So, I asked the elder to let them know about that need, as well.

One of our youth then took the lead to tell us all of the things she wanted the group to do this year. She had some wonderful ideas, and some unrealistic ones. The reality is we need some younger, more energetic people to lead the youth. I’ve asked everyone I can think of, and they all have excuses. So, another mom and I lead it. I was told that what we plan is boring. So, we got out some calendars and let them plan the events between now and December. Some of them are going to be more work. I encouraged them to recruit other leaders.

So, as we are winding down our meeting, the elder comes out and informs me that they said no to all of our requests. There are times that I feel like they refuse to spend any money in support of ministry. So out comes innocent young man and wants to look at the TV. I let my frustration show. He quickly left. After elder left their meeting innocent young man had offered to donate a TV he had at home. Someone else will donate a computer by the first of the year.

They still aren’t sure about DSL, but they’re considering it. I went over in great detail what we use the internet for, and why. I explained that we send out all of our press releases by internet, and that we receive a great deal of information for the bulletin and newsletter by email from members. Innocent young man didn’t know we were having computer problems. Apparently all the warnings I have given that they need to start thinking about replacing it never got through.

I feel guilty for allowing my frustration to show. I’m not supposed to be human. But I am. It wasn’t the young man’s fault. I apologized tonight, and will write him a note tomorrow. I’ll still feel guilty, and I’m sure there will be those who continue to hold it against me. You see, in this congregation, it’s been made very clear to me that they don’t want to know that my parents are in the hospital. My job is to take care of all of their needs, not to have needs or get frustrated. I feel guilty for being human.

Why I'm Scared for My Daughter

After spending most of the day raging, Daughter finally calmed down and went into her bedroom and listened to her Christian music, as I had suggested. She quickly calmed down and began dealing with her clothes, which was another of my suggestions. By bedtime she was happy and cooperative. She made significance progress in her room, but told me she hadn’t been able to clear off her bed so she could sleep in her own room. I think this was an excuse, and she needed the security of the recliner in my room and proximity to me.

This morning she was up on her own and decided to spend some time working in her room before breakfast and church. Her cooperative attitude has continued. I’m sitting in the bowling alley right now watching her bowl. She hasn’t reclaimed her softball jersey or Special Olympics medals yet, but she reclaimed her bowling bag, obviously.

This morning she asked if she had to continue to help with children’s ministry. I told her to finish out the month and then we’d talk. By the time she was done today, she decided she liked it and would continue.

Her blood sugar was down about 50 points this morning. It’s still not as low as it should be in the morning, but it’s definitely progress. She was obviously doing a good job of staying away from extra food yesterday evening. Once I realized that she’d been sneaking food, I had decided to hold her night time insulin at the same level. I’m very glad I did. This afternoon she had another low. It was not as bad as the last one, but it still took lots of glucose tabs, milk, and ice cream to get it to come back up. I hate to think what would have happened if I had increased her insulin yesterday evening as I had planned. I sat her down and explained the importance of this again. I hope she understood, but even if she understood then, that’s no guarantee she’ll remember it tomorrow, or even tonight.

She continues to hear voices. It will be interesting to see where she decides to sleep tonight. I hope Psychiatrist will be able to tweak her medication and get her moods leveled out some.

Saturday, September 13, 2008


The community garage sale was a waste of time. For all the work, we made maybe $10. The remainders will be packed up and taken to Goodwill in Town.

Daughter has a difficult time understanding and handling money. My most recent attempt to help her was a bank that counted the change she put in it. I wanted her to see that coins are money, and that if you save them for a while you can buy something you want. So I asked Daughter to bring me her bank, as I was going to add the change from the garage sale to it. She was reluctant, but complied. While the counter said she had over $13 in it, she actually had less than $5. She’s been taking money out of it buy pop at the workshop. I pointed out with the amount she spent on pop, she would have been close to buying a new album on itunes. She was not happy. She never wants to see the bank again, and she threw the currency I’d given her back at me. After she’d calmed down a bit, I reminded her I was trying to help her manage her money so she could live independently. I suggested that every week she kept her room clean; I’d give her money on Friday for the pop machine. She wants nothing to do with that idea.

Her blood sugars have been inching up in the morning, but I’ve been reluctant to increase her insulin, as I didn’t want another low. She has been steadfastly denying that she’s been into any extra food, so today I said I thought I’d increase her Lantus tonight. She wasn’t too thrilled, but when I said that her morning numbers were running high, and she said she hadn’t been into anything, so she must need more insulin. She agreed with the plan. She showed me an invitation she had to a friend’s party. It’s tomorrow evening, at the same time as youth group. I told her I was sorry, but she wouldn’t be able to attend (if she’d shown it to me sooner, I might have arranged something). She asked what we were doing at youth group. When I mentioned we’d be making sundaes, she became upset.

Every night I offer her ice cream for her bedtime snack, but she has been consistently turning it down. It turns out that she’s been eating it without telling me or taking insulin to cover it. That’s why she’s been running high in the morning. This is why I’m so reluctant to increase her insulin. I’m so afraid I’ll be adding insulin to cover extra food, and then she won’t be eating the food and will go low and die. I finally lost my patience, and told her that I offered her ice cream every night, and she said she didn’t want it, and then she snuck it, endangering her life.

She informed me she eats the food because she wants to destroy her life. Do I believe that she thinks, “Okay, how can I destroy my life? I know, I’ll eat some extra food and not cover it with insulin.” No, I don’t. I think she wants food and eats it without thinking. She later rationalizes it by thinking, “I don’t deserve to live.”

She went up to her room and brought down her bowling bag, softball shirt, and Special Olympics medals down and asked me to destroy them. I told her I’d keep them safe until she wanted them back. It’s been downhill from there. I took away her cell phone, as she was calling friends, and I feared she was going to find someone to come pick her up. She’s now talking about suicide by cop. When she’s in this frame of mind there is no way to reach her or calm her down. I’m the enemy, and she doesn’t care what happens to her. She doesn’t want to turn things around.

I’m back to wondering if we’ll make it to her appointment with the psychiatrist on Monday.

Friday, September 12, 2008

Mind Reading 101

Contrary to popular belief, mind reading is not offered in seminary. I am not able to ready minds, and I don’t magically know that someone is in the hospital. So it was that late last night I got a phone call to inform me they were going to put one of the saints on the prayer list. Okay. Why? It seems that a routine outpatient procedure she was having this week went horribly wrong, and she ended up in intensive care. I was supposed to know that.

I was supposed to be able to update the people who called and stopped by today to ask about her condition. Didn’t I know the family had been called in? No, I didn’t. Then I wonder if maybe there is some reason they don’t want me at the hospital. Have I somehow offended this family? Should I go, and risk upsetting them more?

It’s been a long time since something like this happened. I thought I had folks well trained. I tell them I’d rather hear about something like this 100 times than not know. This evening I went up to see her. She’s out of intensive care, but has not had good news. My visit was brief, and I promised to stop by again tomorrow. I ran into her family on the way out, and was able to check in with them. They all seemed open to my ministry. I apologized for not being there sooner, and told them I’d just heard about it.

I took Daughter out to eat, which is part of the deal when I drag her to the hospital and abandon her in the lobby. When we got home, the phone rang. One of the saints wanted me to know her mother was rushed to the hospital early this morning with a possible heart attack. She’s three rooms down from the other woman. If I’d known, I’d have stopped in to see them while I was up there. But I didn’t know. The daughter decided she’d better call me after she ran into the other family.

Maybe they’ve updated the curriculum and seminaries are now offering a mind reading course. It sure would come in handy.

And Now for a Rational Day

Daughter slept in her own bed all night last night. She helped with the garage sale. Unfortunately the weather did not cooperate. It was raining all day, and less than half of the planned sales took place. We didn’t sell very much.

She was on an even keel, and there were no signs of voices. Then, tonight the amazing thing happened. She decided that moving out is not a realistic goal. Instead, she wants to work on keeping her room clean with the goal of earning a move back into the large bedroom. She thinks if she can do it for 5 months I should be willing to allow her to shift back to the other room. She wants me to make her a chart so she can keep track.

She says she’s not ready to manage her diabetes on her own. She says that the people she had selected as house mates are not dependable and she can’t trust them. She doesn’t think it would be a good idea to live with them.

How long will this last? I have no idea. If I’m lucky, it will last through Monday, and maybe Psychiatrist can tweak her medication so that her mood will be more stable. She’s sleeping in my room tonight, but she says that is because she has things on her bed from her sorting and cleaning and she didn’t want to clear it off tonight. She’s planning to get up at 5:00 tomorrow morning to continue the cleaning. She often has such big plans. Occasionally, she actually gets up that early. If she does, she’d better not wake me.

Thursday, September 11, 2008

Rough Day

It has been a rough day for Daughter. She slept in her own bed last night, but was up and getting ready for work at 5:00 this morning. Therapist saw her at the workshop at 10:00, and she was bright and chipper. About noon she called me, distressed. When I asked what was wrong, she told me she was losing all her friends. I asked what had happened. She had loaned Best Friend her ipod. When Best Friend gave it back, she didn’t talk to Daughter and had a look on her face that Daughter said meant she didn’t want to be her friend anymore. I calmed her down some, but she was crying when we hung up.

At 12:30, she called again. I was on my way to Town to get lunch and go to the nursing home. Now Daughter was sobbing. She’d taken insulin for all her lunch but she couldn’t eat it. She wasn’t losing her friends, and she didn’t know why she was crying. I encouraged her to eat as much as she could of her lunch, and then told her to go wash her hands and face, put on her ipod, and see how much work she could do this afternoon. I told her to call me at 1:15, and if she was still so miserable, I would come get her. She called at 2:00. She was no longer sobbing, but still wasn’t happy. She told me she’d ride the bus home.

Tonight we had a discussion about her plans to rent a house and move in with 3 friends in December or maybe January. These are the friends she wanted to move out of state to escape last week. This week she doesn't want to ever move away from her friends. I just showed her that her income doesn’t even cover half or her expenses, yet she was determined she could do this. I finally suggested we make a list of the things she had to be able to do before she moved out so she could begin working on them now. We decided the list was too overwhelming for her to do all at once (but she’ll have it mastered by December), so I set up a chart for her diabetes management with the tasks she listed. Once she masters those, we’ll come up with more goals for her. I doubt she’ll make it through the first list. I pointed out she has to be able to wash her own hair before she can live on her own.

The garage sale is tomorrow, so she went upstairs to find things she wants to sell. She came down with a laundry basket containing most of her clothes (including the clothes she wore today). She said she had another basket just like it upstairs. I asked her what she was going to wear if we sold all of that. She wasn’t sure. She said, “But these are things I don’t wear every day.” I pointed out it’s impossible to wear all her clothes every day....

Most troubling is that she thought she heard me calling her several times tonight. She has been denying it, but I am fairly certain the voices are back. She has an appointment with Psychiatrist on Monday. I just hope she can hold it together until then. It could be a very long weekend.

Wednesday, September 10, 2008


Daughter came home and fell asleep in a chair in my study today. She slept for over an hour. I think she was exhausted from the anxiety and poor sleep. Tonight she decided to sleep in her own bed. I’m hoping that means the current crisis is past.

Brother sent a text message to Sister yesterday, telling her not to panic if she saw my email before she talked to me. Sister was in an in-service meeting, so she was reading this under the table and trying to respond the same way. Brother may have intended to be reassuring, but the messages that followed certainly did not calm her fears.

He explained I’d sent a picture of a sweatshirt that had burned. Sister told me about the text messages that had gone back and forth, and unfortunately I don’t remember them all. My favorite, though, was when she asked if the fire department had come. He told her not for the sweatshirt, but they’d come for the second fire. Poor Sister. I suspect that by this point Brother was enjoying himself immensely.

To make matters worse, when Sister tried to call last night, I was in Bible study and didn’t have my cell phone with me. Daughter was at the church, too, so she couldn't answer the phone. Sister didn’t leave a message, and while I’d seen she’d called, I didn’t call her back because I knew she’d be getting her daughter into bed. I had several calls from her today, though. Niece fell and cut her lip on the playground. Sister was trying to figure out if she needed stitches. She said, “You know, this is the kind of thing where I would have called Mom.” I told her I’d been thinking about that a lot lately. She was stopping by the nursing home to see Mom tonight, and I assured her that Mom would have a wonderful time fussing over Niece.

Mom has been deteriorating, and is now incontinent at night. Dad says there are more days now when she doesn’t know him when he goes over to visit her. The other day when he went over they'd temporarily locked her out of her room because she was taking all the clothes out of her drawers and hanging them on the handrails in the hall. But when Sister and Niece walked in this evening, Mom knew them. She wanted to know what happened to Niece’s lip. Sister explained, and asked Mom if she thought Niece needed stitches. Mom examined it closely (she’s a retired nurse) and told Sister it would be okay and didn’t need stitches. Sister said Mom looked at it again later, and again announced there was no need for medical attention. I think Sister enjoyed her glimpse of Mom this evening. I think she needed that. I'm a little bit jealous.

Tuesday, September 9, 2008


Why do we spend thousands of dollars on placements for special needs kids and then decide that once they’re 18 they are cured and able to live on their own? We have an RTC in our county, and I have come in contact with some of their kids who have graduated to therapeutic foster homes. I have seen two of these young men graduate from high school. One is now in prison and has been labeled a sex offender. When Daughter went with him to the prom, I was assured that he was a “nice boy.” He graduated with Daughter 2 years ago.

The second is currently in the psych unit after his second suicide attempt. He moved into his apartment in June. Less than 3 months later, he has tried to kill himself—twice. I knew him better because he came to church. I knew him well enough to know that setting him up in an apartment on his own with no money and no job was an invitation to disaster.

I could go on about the disasters I have seen happen or see coming. I’ll be the first to acknowledge that living with a special needs young adult is not easy, but the answer is certainly not to throw them out into the world with minimal supervision.

I’m too tired to continue my rant, and I don’t have any answers. I do have a profound sadness for two young men who were set up for failure when they were kicked out of the nest too soon.

I’m going to go upstairs and see where Daughter is sleeping tonight. I hope she is back in her room. It has been exhausting to be around her again today, and I want some distance from her tonight. She hasn’t been up prowling, so maybe tonight the trazadone did its job and she’ll actually sleep.
On a more humorous note (on the other hand, maybe it's on a more tragic note), I was talking to Brother and emailed him the pictures of the sweatshirt remnants and the burning power pole. I cc'd my 2 sisters, and didn't put in an explanation. I got an immediate response from one sister demanding to know what had happened and if everyone was okay. She was trying to connect the two pictures, and had envisioned the pole fire somehow causing a beam that hit the sweatshirt. She was concerned about the health of anyone who had been wearing the sweatshirt when the event occurred. I called her and offered and apology and an explanation. The resulting conversation was a good one. My other sister tried to call me while I was at Bible Study tonight. By then, I had sent out an explanation of the pictures. She didn't leave a message, so I'm hoping one of my siblings filled in the details.

Fire, Again

I somehow found and turned off the alarm when it went off at 6:00 this morning. I don’t remember the 6:15 alarm. At 7:00 Daughter woke me up. “Mom, I know you didn’t get much sleep last night, but I really am sorry.” Then she burst into tears. So, of course, I had to drag myself out of bed and comfort her. She had realized that we all could have died—including the cats. “I almost burned down the house—and we don’t even own it!” Interestingly, that thought had gone through my mind, too. “They would have found our bodies and they would have wondered what caused the fire and then they would have found the lamp and hoodie and known it was my fault.” I hugged her, and assured her of my love.

It’s good she’s feeling remorse. I told her I was more upset about the extra food than the fire. I suggested she use this to motivate her to do better. This morning she was working on a poem about a guardian angel. I only remember one line: “When there is fire in a child’s eye, a guardian angel is there.”

So she went out to wait for the bus and then came running in. “Mom, come quick, you’ve got to see this.” I went to the door, lovely in my pj’s, and she pointed to the sky and said, “Fire!” Now she’s pointing straight up, so my first thought was that she was hallucinating. I dutifully followed her, and the power pole in front of the house was on fire. It’s burning and crackling away up at the top. I called 911, and they said the fire department was on the way (the mother of the boy who originally saw it had already called). I was about to tell Daughter to move away from the power lines when her bus came and picked her up.

Since the fire was right outside my bedroom, I turned off the fan in my bedroom. I didn’t want the smoke from this fire mixing with the smoke from Daughter’s fire. I decided to get dressed before the fire department showed up, because I knew that people would gather. I should have taken a shower, but I didn’t want to be in the shower when they arrived, and I didn’t want to risk losing my water half way through if the power went out. I needn’t have worried. Like clockwork, 19 minutes after we called I heard the siren.

Tiny Village doesn’t have a fire department, so we are served by the volunteer department in Less Tiny Village 9 miles from here. It always takes them 20 minutes to respond to a call. When Daughter had her first grand mal seizure (on the school bus) I got to the bus before they did. I’ve finished worship services while we’ve waited for them to arrive for a stricken parishioner. (It got us an AED—the nurses in the congregation decided it was too long to do CPR in the event of a heart attack). One truck carrying the captain and asst. chief pulled up. The captain had to finish getting dressed once they arrived. They said they could smell the fire, but couldn’t see it. I had to point it out for them. They’re stood outside watching the pole and waiting for the power company. The cross bar holding the wires burned through and was hanging, but none of the wires have broke.

I decided I’d best pick up the garbage the neighborhood cats pulled out of our trash bag since we’d be having company. One of the saints drove in from the far north end of the village (she lives about ½ a mile from here). She was frustrated she had to come herself, since the Source of All Information hadn’t called her to report or showed up to investigate yet. Even more frustrating was the fact that she was on her way to bowling, so she wouldn’t have time to brief the north end of the village. I suggested she use her cell phone.

Assistant Chief and Captain put out some orange cones to keep traffic away from the pole, and waited for the power company. Daughter called, and wanted to know if the house was still here and to make sure that Cat, Kitten and I were okay. This may underline for her the danger of putting sweatshirts over light bulbs.

When the power company finally arrived, the first thing they did was turn off the power, which was off for over 2 hours. It made for an interesting morning in the office. Over 3 hours after the fire was reported, things were finally back to normal. I hope that’s all the excitement we have in Tiny Village today.
As I could have predicted, Daughter just called in tears. She doesn't feel good and wants me to come get her. I'm sure that all of this has taken a real toll on her. It will be a rough evening, I'm sure.

Monday, September 8, 2008

Too Much

Daughter decided to try sleeping in her own room tonight. She was having difficulty falling asleep, so she kept getting up and wandering. Finally she turned on her lullaby CD.

I was sound asleep when she started asking me about the smell. She said it smelled like someone was burning something. I couldn’t smell anything. Then she said, “Oh, my hoodie is smoking.” I was half asleep and annoyed by her ongoing chatter, so it didn’t really register.

I finally smelled the smoke and woke up. She announced she was in my recliner. She’s probably asleep by now. I’m wide awake. Half of her hoodie is soaking wet in the kitchen sink. The other half is ash. She had her hoodie draped over her lamp, where it got too hot. The lamp shade has melted. The hoodie is history, and it stinks of smoke upstairs. I think I need to replace the smoke detector. It’s right outside her bedroom door, but it never went off.

Oh, and when I went into her room to investigate the smoke and make sure nothing else was burning, I discovered she’s been into food again. Tomorrow I’ll have a good reason for being tired. I should go back upstairs and try to go back to sleep. But it stinks up there, and I don’t want to be near her right now. Eventually I'll be grateful that the house didn't burn down, but for now I'm just mad at her.

If I'm Scared, You Must Be the Enemy

Daughter followed up Friday’s success by calling Therapist this morning to reschedule her appointment (it will be at the workshop now so I don’t have to make a trip to Town—she’ll ride the bus home) and going in to talk to her Case Manager to see what was happening with jobs. A week from Wednesday, she’ll go observe the cleaning crew, and then she’ll be able to sub, and possibly get on the crew permanently when there is an opening. After each event she called me all excited to tell me about it.

She’s excited, but she’s also scared. After moving back to her own bed, she was back in my recliner last night. When she’s scared, I become a target. If she’s scared, she must be in danger. Since I’m the only one around, I must be the danger. Therefore, she needs to defend herself against me.

So, she objects and doesn’t want to eat the supper I fixed.

She complains that she should be able to control her SSI.

She needs to get away from me and into her own place.

She can’t work because I haven’t given her a list.

She can’t work because I’ve piled too much on her and she can‘t handle it.

She hates taking pills and we should hire a nurse to fill the month’s pill boxes.

I’ve learned not to argue. It isn’t about me, and most of the time I remember that. I just fixed a plate of food and sat it in front of her. Eventually she checked her blood sugar, took insulin, and ate.

I showed her the spread sheet and explained that her SSI covers less than half of her expenses. I also made it very clear that I love her and I’m not complaining, I don’t mind spending money on her. She was indignant that I have to spend so much money on her each month—it’s not fair.

I reminded her that I want her to be able to live independently, too, and that we’re working on that goal together. I reminded her that when she started school, she couldn’t immediately read. She had to work up to it gradually, just like she has to work up to living independently gradually.

I assured her that while the steps she’s taken are scary, they are good steps and she will be able to handle a new job when it comes her way.

But mostly, I’m silent. I’m just here and present, going about the daily tasks. She has grown in her ability to identify her stressors and talk about them. I have learned more about what her triggers are and how not to react when she gets in one of her moods.

The dishwasher is unloaded. The litter boxes are clean. The trash is out on the curb. Pill boxes are ready for the next four weeks. She’s upstairs watching TV, and agreed to turn it off at 8:00 and get in the shower. All in all, it was a successful evening. So why am I so tired?

Sunday, September 7, 2008


Fall is coming, and the nights are much cooler. I threw open the windows yesterday and put a fan in the window in my bedroom to pull in the cool night air. As I was sitting here last night, I heard what sounded like thunder or the loud bass on a passing car. With the noise of the fan, it was hard to tell what it was. At one point I even got up and went and looked out a west window to see if there were signs of a storm. There weren’t, and eventually I forgot about the noise and went to bed.

When I got up this morning, the thunder/bass was back. I didn’t think that anyone would be driving by with a booming bass at 6:00 on a Sunday morning, and there was no sign of a storm. I then realized that Cat had not slept at the foot of my bed last night. I knew what the noise had been. I went and opened the attic access in my closet, and sure enough, Cat came running out. He was mad. He paced and meowed. He went and visited Daughter. He demanded I turn on the water in the bathroom sink.

Eventually, I realized that I hadn’t seen Kitten. What's more, Kitten hadn'd appeared to annoy Cat. I asked Daughter if she’d seen Kitten. She hadn’t. I went back and opened the attic access again. Out ran Kitten. Cat calmed down once Kitten was out. They were locked in there for well over 12 hours. I’m just glad it wasn’t a hot day.

I’m sure that the next time there is an opportunity, they will both go in and explore the attic again. Maybe next time I’ll realize that I’m not hearing thunder, but Cat throwing his body against the door.

Saturday, September 6, 2008

A Trip Down Memory Lane

There is a community garage sale here in Tiny Village this coming weekend. I decided that this would be a good opportunity to clean out the attic. A number of years ago we cleared out Daughter’s old toys and moved them to the attic. I’m not sure why we saved them. I guess maybe I thought she’d want to play with them again someday.

It was a cool day, so I sent Daughter into the attic to pull things out (it’s not really an attic, more storage under the eaves—no lights and lots of crawling involved). I decided I would go through the 5-6 boxes of papers I had stored in there. So, today, I recycled my college and seminary class notes, papers, and exams. They’d been carefully stored for over 20 years, and I hadn’t even looked at the boxes since we moved here 12 years ago. I decided it was safe to assume I wouldn’t need them in the future. I pulled a few things out to save. I’m not sure why.

Daughter enjoyed finding old toys and books. I told her she could have the money from any of her toys, books, and clothing we sold at the sale. She’s excited about it. I had forgotten about some of the things that we had stored in there. It’s unbelievable the number of different comforters Daughter has had for her bed over the years. I can trace her growth through those linens.

I was also marveling at the advance in electronics. I have a number of plastic boxes containing my Day-Timers from over the years. Each month I would pull out a new calendar book. There were two pages a day, with plenty of space for appointments, tasks, mileage, expenses, etc. A number of years ago I got to the church and discovered I had left my Day-Timer at home. I had to turn around and go back to get it—I had no idea what I was supposed to be doing. About 15 years of my life is recorded in those pages. They are being recycled.

I now use an electronic organizer, and when my last PDA died, I went to a Blackberry Pearl. The only drawback to that is that cell phones aren’t allowed in the psychiatric hospital, so when I get in there with Daughter for an appointment or admission, I don’t have access to all her information or my calendar. I’ve found the electronic version also is more of a nag. I don’t like seeing the past due tasks listed on the screen in red.

I found lots of writings about the turmoil that was life in the Ghetto Church where I spent 10 years. We hired people off the street, and they often had significant mental health issues. That means we often had significant staff issues. At one point my brother thought we should have a question on our employment application that asked how often the applicant heard voices. There was a great deal of turmoil. When people were successful with us, they left us and moved up to better jobs. When people weren’t successful, they often left in a dramatic way: theft, threats, psychotic breaks—in one memorable incident our custodian imprisoned a workman in the building. The sad thing was that until he became psychotic, he’d been one of our best employees. I considered saving some of that history, but decided that living through it once had been painful enough. I shredded the more sensitive material before recycling it.

I also found some of the court papers on Daughter. I saved those. They’re part of her history, and she’ll need to decide what to do with them. Other than those papers, most of the things we found held good memories for Daughter, and I think she enjoyed seeing them again.

We didn’t finish today, but we made a good start. We’ll continue this journey through our history all week. What doesn’t sell next weekend will be donated. I hope that after next weekend our attic will contain Christmas decorations, storm windows (or screens, depending on the season), and suitcases. In another month or so we’ll put the fans back in there, as well.

I’m very much aware of the fact that over the past 12 years we have managed to fill this very large 4 bedroom house. It’s time to begin getting rid of some of these things. Someday we will be moving, and I’m sure our next home will be much smaller. I want to be ready. I also want to learn from this, and cut way back on our spending. Two people don't need most of what we have crammed into this house. It's time to simplify our lives.

Friday, September 5, 2008

Snatching Defeat from the Jaws of Victory

Daughter had her good day, and came home and told me about it. She talked to Best Friend and set her boundaries. We spent some time together when she got home. I made the enchiladas she requested for supper.

We brought our enchiladas upstairs so we could watch Tom Hanks in Big. Somehow, neither one of us had ever seen that movie. I paused the movie for a bathroom break and suddenly Daughter, who had been laughing through the movie, decided it was more important to go for a walk than watch the rest of the movie. I knew she wanted to take a tour of the kitchen. I insisted she watch the rest of the movie, which she did. Then she went for a walk and her tour of the kitchen. She of course kept denying she wanted to go sneak food.

At bedtime her blood sugar was 251. She finally acknowledged she had eaten two pieces of cinnamon bread. She ate it because she wants to die. Sigh.

We talked about why she ate the bread. We talked about what else she could have done. I pointed out her strength earlier in the day, and said she was strong enough to control her eating as well. I assured her I loved her. I suggested she focus on the good parts of the day. She told me she can’t take and offsite job until she can control her eating. She did let me hug her before she went to bed.

Tomorrow is another day. I hope she will allow herself to make it a good one.

Thanks, Mom

I just had a phone call from Daughter. “Thanks, Mom.” That was all she wanted to say, and to wish me a good day. I had earlier had a call from Case Manager who was meeting with Daughter. Daughter had called her this morning while she was waiting for the bus to tell her she needed to meet with her. I participated in their meeting via speaker phone.

Case Manager had not been getting the message that Daughter wanted to meet with her. Case Manager was not happy with the things Daughter was telling her. The outcome of Daughter’s initiative in meeting with Case Manager:
Case Manager is going to talk to Supervisor and see that Daughter’s messages get relayed quickly. She also gave Daughter instructions for other ways to reach her.

Case Manager is going to see that Daughter is allowed to do the offsite jobs from the workshop as a substitute, an opportunity that while promised, has not been provided.

Case Manager told Daughter that Best Friend is not allowed to ask for money at the workshop, and assured Daughter that Best Friend has plenty of money. She offered to talk to Best Friend, but Daughter wants to handle it on her own.

Case Manager assured Daughter that they don’t allow people who are a danger to attend the workshop. She is going to check on the report that a new client is a registered sex offender, but assured Daughter that she is safe.

Case Manager made additional suggestions as to how Daughter can stop Best Friend and Best Friend’s boy friend from dumping their problems on Daughter.

I am so proud of Daughter. I praised her, as did Case Manager.

In a brief private conversation, I told Case Manager that I suspected Daughter is being stone walled because of the diabetes. Case Manager is not happy. I understand why they really didn’t want Daughter talking to Case Manager. We are very fortunate in the Case Manager that Daughter has assigned to her.

When Daughter called to thank me (all I did was back her up and remind her of things she could bring up with Case Manager), I told her again how proud I was of her. I could hear the relief in her voice. This is such progress for Daughter. She is finding her voice and learning how to stand up for herself and keep herself safe. Therapist and I have been working with her on this for a long time. She’s getting it. The extra trazadone enabled her to sleep through the night, so her morning blood sugar was down some, though still not in target range. It looks like maybe we’ve weathered another storm.
A heartfelt “Thanks, Mom,” like Daughter just called to offer makes it all worthwhile. I’ll be smiling the rest of the day

Thursday, September 4, 2008

Mission: Impossible

I told Therapist today I was considering recording a tape with the theme song from Mission: Impossible and recording instructions on it for her with regard to Daughter. She laughed. I was able to schedule an appointment for Daughter for 1:00 today. I told therapist I knew something was wrong, but hadn’t been able to determine what it was. Daughter wanted me to stay in for her conversation with Therapist, and I learned a great deal and I understand why Daughter has been struggling so much later.

As I had figured out, Daughter is upset with Best Friend. She’s being pulled into all of Best Friend's problems, and is hearing about them not only from Best Friend, but from Best Friend’s boyfriend. She has really been shaken by the problems Best Friend has been having living independently, and it has shaken her confidence in her ability to someday live on her own.

She is finally beginning to suspect what I have suspected for sometime: they are stonewalling her at the sheltered workshop and blocking her attempts to try one of the jobs off-site. I suspect that they are afraid of problems with the diabetes if she goes to one of the off-site jobs. I can’t prove any of it, and had decided to remain silent as long as it wasn’t a problem for Daughter. She has been asking for an appointment with Case Manager for over a week and Supervisor keeps “forgetting” or being “too busy” to schedule it.

Finally, Best Friend told her this week that one of the new clients at the workshop is a registered sex offender. Daughter can’t remember his name, so we can’t look him up to see if that is true. This has triggered her PTSD. We pointed out that she has been safe, and has the skills to continue to keep herself safe. Daughter doesn’t want Therapist or me to intervene. She wants to continue to try to deal with it on her own.

Therapist showed her how to give Best Friend’s problems back to Best Friend. I kicked Daughter out, and Therapist and I strategized about how to deal with the workshop. For now, we’re going to respect Daughter’s wishes. Therapist had offered to go over to the workshop and meet with Daughter there for her next appointment. Daughter didn’t like that idea, but did agree to allow Therapist to pick her up. This will give me an extra hour to work before I have to go pick Daughter up from Therapist’s office. It is a wonderful gift to me. There will be a meeting about Daughter’s service plan, probably in October. Therapist wants to attend that meeting. We also gave Daughter some suggestions on how to get her meeting scheduled with Case Manager.

Daughter was much happier after the appointment. She agreed to take an extra trazadone tonight to see if that will help her sleep through the night. (She’s currently taking 200 mg, and Psychiatrist told us we can go up to 300 mg if necessary). She acknowledged that her night time wanderings have been taking her by the refrigerator, which is why her morning blood sugars have been so high.

I took Daughter over to visit her friend who is in rehab at the nursing home. I visited one of the saints while she was with her friend. When I went to get her, her friend asked me to pray with him, and I did. I hope that she will be able to sleep tonight. She deserves a better night’s sleep. We both do.

Wednesday, September 3, 2008

Reading the Signs

Daughter is struggling right now. Since Sunday she’s been sleeping in the recliner in my bedroom. Her blood sugars are mysteriously high in the morning, which probably means she’s taking a tour of the kitchen during the night. Yesterday she had a mysterious stomach ache that necessitated me picking her up early from the workshop. This morning she called with a nothing question, just needing to touch base with me. At least she stayed at the workshop all day.

This evening she informed me she wanted to move. Now. She’s willing to stay to get her last paycheck on Friday, but then she wants to move. If I can’t move, she wants to leave and move in with a family member. She doesn’t want to go back to the workshop, ever. She tried to convince me she should stay home tomorrow. She insists she’s not hearing voices, but does acknowledge nightmares.

I’m not sure what to make of it all. It’s obvious she’s in distress. I’ve wondered if the extended low Sunday night has triggered increased anxiety. She was upset today because Best Friend was begging everyone for money today because she wanted to go to the demolition derby tonight at the fair. Her father gave her money for the fair Monday, but she spent it all. Of course it wasn’t her fault she didn’t have any money. Daughter called her tonight, and discovered that Best Friend was at the derby. This bothered her a great deal. She couldn’t figure out who she’d convinced to pay for her ticket. I think that Best Friend is contributing to her current struggles, but I doubt it’s the main issue.

I’m going to call her therapist tomorrow and see if I can move her appointment up. I find it interesting that at a time when she’s sleeping in my recliner and calling me through the day, she says she’s willing to move away from me. Progress is that she’s not seeking to live on her own, but recognizing that she needs to live with family. Of course, it’s not going to happen. If there were someone in the family in a position to take her, I still wouldn’t do it. She’s too unpredictable and too much work—her diabetes and medication management alone would be too much to ask of them.

I’m frustrated tonight, because I can see the warning signs, but am not sure what to do about them. Hopefully we’ll be able to figure it out without another hospitalization.