Next....

Psychiatrist thinks we need to talk to Neurologist about seizure activity. She thinks that explains most of what is going on right now-- the excessive sleeping, the cognitive dulling, etc. So, now I get to track down neurologist and see what he wants to do. Psychiatrist said it may be as simple as increasing her dose of the generic keppra-- she may not be absorbing it into her system as well. Daughter has been much more cooperative tonight, which makes life a little easier.

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Today was my day off. So, I went to the hospital to visit one of the saints. I only had one phone call to deal with, fortunately, and I spent over an hour with the Sunday School Superintendent. She stopped by to talk about a meeting we're having tomorrow evening. It should be interesting. Hopefully I was some help to her.

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I also had breakfast with a friend and spent 3 hours on the appointment with Psychiatrist (it would be so nice to have doctors who were closer to us.) The result is that I didn't get the things I had hoped to accomplish on my day off done. But then, that's typical of my life.

If It Doesn't Make Sense....

Last night we had supper with a friend who moved away about a year ago. She thought Daughter looked terrible. Her depression was obvious immediately, and her tremors interfered with her ability to hold and eat her sandwich. Tomorrow afternoon I take her to see Psychiatrist. It will be interesting to see what she thinks. I had called over a week ago and talked to a nurse about the tremors, and took her in last Saturday for lithium and depakote levels. This week I got a message from a different nurse telling me her blood levels were fine, and I shouldn't change anything. That wasn't helpful. I'm still wondering if the tremors are a result of her changing to generic Keppra for her seizures.

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Today after church Daughter lobbied had for a trip to Town for Mexican food, and since I was tired and wanted to get some hamburger and buns for tonight to go with the fresh picked corn one of the saints brought to church, I agreed. When she checked her blood sugar before lunch, I was pleasantly surprised at how good it was. Her blood sugar had been a little high this morning, and it hadn't been that long since breakfast, so I was expecting a higher number.

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We came home and had a pleasant afternoon watching the Sound of Music together. Munchkin Mom had gotten the music stuck in my head, and I was singing the songs on the way home from the City last night. Daughter and I were having a friendly discussion about words and tunes. We decided we needed to watch the movie.

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After the movie, she fell asleep, and I finally pried myself out of the recliner and went downstairs to begin preparing supper. I was weighing out hamburgers for tonight and the freezer, preparing 4 ears of corn, starting water boiling and lighting the grill, when Daughter came downstairs. "Oh. I thought you'd have it ready by now."

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I asked her to clear off the table and get out the condiments. I put the hamburgers on the grill, and then came in and put the corn in the boiling water. Daughter critiqued what I was doing. I came in with the hamburgers and she was on the phone and hadn't gotten the condiments out like I asked her to. I asked again, and my frustration showed through. She informed me that after supper she was going to go to her room because she didn't have to put up with my attitude.

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I got the corn out and buttered and salted it (she can't/won't cook corn or butter and salt it). We sat down to eat and she checked her blood sugar. It was very high. "Is there anything you want to tell me?"

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"No, I haven't been into anything."

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I drew up the appropriate amount of insulin, and she took it. I sat there pondering the puzzle of her blood sugars-- they didn't make sense. Bingo. "Please give me your meter."

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"There's something I need to tell you."

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"Yes?"

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"My blood sugar wasn't 106 before lunch."

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"What was it?"

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"206."

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Sigh.

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So now not only do I have to keep her pills and insulin locked up and watch her take them, I have to check her meter to make sure she's telling me the truth about the reading.

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It is exhausting. Instead of becoming more independent, she's becoming less.

Decluttering

Yesterday I began the process of decluttering with my desk. I filled the recycling bin with paper, much of it shredded. This morning I continued the decluttering process with my spiritual life. The truth is, my spiritual life has not been great lately. I've been avoiding spending time alone with God. This morning I was up, Daughter was still asleep, and I knew it was time to engage with God. I listened to a Saturday morning prayer service on my ipod, and then paused it to spend time with Scripture, in prayer, and reflecting in my journal. I engaged in a spiritual decluttering.

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I discovered that I am very angry with God right now. That's why I've been avoiding God. The irony is that I regularly urge people to take their anger to God. I tell them that God is big enough to handle it. I make the confirmation class write a prayer in which they express anger at God. I explain to them that if they aren't able to take their anger at God, when they do get angry (and we all do), they will turn their backs on God rather than going to God and releasing the anger.

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This morning I followed my own advice, which was long overdue. I knew I was angry over my mother's illness-- her death brought healing, but I'm angry that she was robbed of her ability to communicate, robbed of the opportunity to travel and enjoy her retirement years. When she first retired, they were taking care of Dad's mother. By the time Gram died, my parents' health was not good enough to allow them to enjoy travel. What surprised me is how angry I am at Daughter's challenges. She's an 8 year old in a 22 year old's body. She is saddled with physical illnesses that she can't manage because of her mental illness and developmental disability. I still remember her words to me when she was struggling with the reality of living with diabetes, "Mom, it's not fair. It's one more thing that makes me different." It isn't fair. It isn't fair that she was born into an abusive family. It isn't fair that she has a low IQ. It isn't fair that she got rotten genes. It isn't fair. I tell her that life isn't fair. It seems like she's had way too much dumped on her, with limited abilities to cope with all that has been dumped.

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I'm angry that I am still here in Tiny Village. My ministry here is not as effective as it was at one time. There are key families within the church who want me gone for a variety of reasons, but they don't dare display their animosity openly because there are many more people who are very grateful for my ministry and all I've done here. As a result, I'm constantly dealing with passive aggressive stuff and subtle sabotage of my ministry. Moving is complicated by Daughter's needs, which severely limits my options, multiplying my anger.

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This morning I began the process of expressing my anger to God. It will be a process, but I know that God will now help me heal and move beyond that anger. I've begun decluttering my spiritual life, by addressing the emotions that were getting in the way of it. Just beginning the process created much energy. Daughter and I went out and began cleaning out the garage. We sorted through our camping equipment and threw some of it out, identified other things that can be donated, and put the rest away in an organized manner. We now have much more room in the garage.

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There is much more decluttering to do-- in our home, the garage, our personal lives, my spiritual life. I feel much more equipped to address it now. I am going to finish the sermon for tomorrow, celebrate a wedding this afternoon, and then we'll go to the City to meet an old friend for supper. This morning I received an email from a search committee. They are interested in more information from me. At the right time, God will call me to the right place. I can prepare myself by continuing to declutter my life.

Seeing God's Hand

Last week one of the teenagers in the church brought me a note from his mother. She wanted me to add her brother-in-law, who had just been diagnosed with a serious disease, to the prayer list. I asked if this man was related to someone who has been attending and has the same last name. The teenager didn't think his uncle was connected to that family. Since the last name is relatively common in this area (I know at least 3 different clans that share the last name in this area), I didn't think any more about it. The bulletin was done, so I promised I'd announce it during worship on Sunday morning. Midway through the service, I realized I'd forgotten. I decided I'd say something before the benediction. That afternoon, I realized I'd forgotten again. I was quite frustrated with myself, and with the reality that my brain still isn't working the way I'd like.

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During the joys and concerns at the board meeting, I mentioned this man's name and that I had forgotten to announce him as a prayer concern. Several of the board members thought they knew him, and thought he was the brother of the man who has been attending regularly. So when I saw the brother for pre-marital counseling later that evening, I asked. He told me it was, indeed, his younger brother. He had learned of his illness during dinner that very day. I have decided that it was a good thing my brain was not working very well and I forgot (twice) to mention the prayer concern. I've decided maybe God's hand was at work. I would not have wanted this man to find out that his brother had an illness requiring prayers during the worship service.

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After my time in the woods while we were camping, I've been more aware of nature around me. I've been seeking to be more conscious of the beauty around me. There have been the most beautiful wildflowers in bloom on the route to Town. I've also had the joy of seeing deer twice in a field on the way to town. One day I saw two does and 3 fawns. Daughter was with me, and we were both delighted by the treat. I was also grateful that they were munching soybeans and not running across the road in front of me.

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Last night Daughter decided to be more cooperative. The fact that she wanted me to take her to her softball game might have had something to do with the improved attitude. Her cooperation gave me the boost I needed to tackle 2 jobs I had been avoiding: clearing off my desk and filing an expense report. Both are now done, and I am feeling like I am overcoming this depression. Today I realized I had been approaching Sunday's sermon all wrong, and I'm now excited about the direction it is taking. I will know joy again.

Depression

Okay. I've said it. Daughter and I are both struggling with depression right now. It's a part of our grief, but we are feeding off one another in our depressions, and I'm struggling to figure out a way to pull us both of it-- or at least get myself out of it.

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Daughter has been doing a lot of sleeping, and complaining about a variety of vague physical symptoms. When she's like this, her attitude sucks all the life and energy out of this house. I have spent the last 2 nights working on various cooking projects in the kitchen. She's spent the last 2 nights complaining about any task I ask her to do and "forgetting" to do about half of them. Last night I asked her to unload the dishwasher (it's not even a full size dishwasher). You'd have thought I'd asked her to take on the biggest job ever.

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Of course, my outlook is not helped by the fact that I have been experiencing a good bit of back and shoulder pain as a result of extended time spent standing and working at counter height. So while I'm keeping going through my pain, she's complaining about the smallest things. Last night she was "too sick" to take care of the clothes in the dryer. I informed her I was going to be too tired to take care of her insulin and pills or fix her meals if she didn't begin to do her fair share around the house.

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She slept for 2 hours when she got home yesterday, went to bed early last night, and still didn't want to get up this morning. My third call for her to get out of bed was none too pleasant. I told her with all the running I've been doing with her (softball game tonight) and her lack of help, the state of the house was really beginning to stress me out. She apologized. I pointed out she's been apologizing every morning and refusing to do any work every evening. She left here in tears.

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She came home and apologized again, and told me she had lots of time before the softball game to work around the house. So far she's put away clean laundry and dishes. I've begun cleaning off my desk, where important papers have gotten buried. Maybe I'll actually find one or two of them in my mining expedition this evening. Maybe she will start being cooperative every night. I will hope. I always hope.

The Last Thing

For Daughter, the last thing that happens always overshadows everything else about any event or day. During our two weeks away, we did many things she thoroughly enjoyed, and she expressed her pleasure about these things to me throughout the trip. The last day, we went to worship at the church where we held Mom's memorial service. For Daughter, that became the focus of the entire trip. When someone asks her how her trip was, she says it was terrible and talks about how painful it was for her to worship there again.

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Yesterday, I took her to see Harry Potter and out for her favorite restaurant meal. On the way home, she asked about watching a TV show when we got home. I told her no, because we would be late and she needed to get the trash out and shower before bed, which needed to be on time since she'd been late getting up that morning. She was mad, and the movie and supper were immediately gone from her memory.

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After a few minutes of her sitting next to me pouting, I said, "It's too bad you can't remember that I took you out to a movie and for supper." She continued to pout all the way home, and tried to argue with me about the trash and her shower when we got home. I frustrated her by refusing to engage. This morning she got up and apologized. The only thing she remembers about yesterday is she went to bed mad at me, so for her, the entire day was terrible.

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One day while we were on vacation I had her make a list of the good things, trying to shift her focus away from her complaints. (Once again, being teacher/therapist) I continue to struggle with how to just converse and be with her. The movie and supper were a start yesterday, and I wish she would remember that about our day, and not her frustration with the lack of time for TV in the evening. Even without TV, she was a little late getting to bed last night, and again struggled to get up this morning.

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Tonight I will seek to make our final interactions something fun. If we can end the day on a positive note, maybe that will be her memory of the entire day.

The Cost of Avoidance

I have been working very hard at avoiding my grief since Mom's death. I sobbed during worship the last night of the conference, as the closing hymn had been the closing hymn at Mom's memorial service. Daughter was very concerned. She's always watching me to make sure I'm okay-- she's terrified something will happen to me. If I sigh or move in a way that she thinks is unusual she's right beside me demanding to know what is wrong. It was very disconcerting for her to see my cry that way. That has been the only time I've really cried since Mom's death.

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Last week there were lots of things to remind me of Mom's death. I was hanging out at the nursing home ministering to dying members on a daily basis. As A confessed her despair to me and asked where God was, I found my self wondering if Mom had felt such emotional pain. As M sat by the bedside of her dying father, I regretted that Mom had been alone when she died, and wished one of us could have been with her. When I came home, there were all these items we'd brought from my parents' apartment that I needed to find a place for in my home. Then D died, and I found myself facing my first funeral since Mom's memorial service. Rather than facing my emotions, I set about to avoid them, and to avoid the things that would serve as reminders.

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So we came to Saturday night with the house still a mess, no sermon for Sunday, no funeral written for Sunday afternoon, the house not fit for the board meeting that would be happening after the funeral, and the challenge of trying to figure out when I could meet with the couple I'm marrying next weekend (who are only available to meet with me on weekends due to work obligations). Rather than dig in and tackle these tasks, I continued to avoid, and it was 1:30 Sunday morning before I finally went to bed-- and the sermon and funeral still weren't done. Not the best way to prepare for a very full day.

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At some point I realized that I was avoiding things that were painful to face, and that in the process of avoiding, I'd dug myself into a pretty deep hole. I was exhausted yesterday, but made it through worship and then Daughter folded funeral bulletins while I figured out all the liturgy. We had time to eat at McDonald's before the funeral, and then skipped the funeral dinner (after I did the obligatory prayer) so I could finish preparations for the board meeting. We had just finished supper (with fresh picked corn courtesy of one of the members) when the couple arrived for their premarital counseling.

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All that I accomplished by avoiding my grief was create a great deal of stress for myself. It would have been less painful to face my grief and have a good cry. Matters weren't helped by the fact that I worked every day last week, visiting the hospital, nursing home, grieving family, and/or funeral home. That gave rise to lots of emotions I had to work very hard to avoid-- which is exhausting.

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Today I'm not going to do church work (it is supposed to be my day off, after all). I'm going to pull pork to put in the freezer for my Dad's birthday celebration. I'm going to experiment with a blueberry dessert. I'm going to seek to bring some order to the chaos of my home and find places for the treasures I brought back with me. As I deal with those treasures, I will grieve. Daughter is safely at the workshop, so she won't be hovering and asking me what's wrong. When she gets home, we're going to go see the Harry Potter movie. We'll go out to eat after the movie. I will use my day off to address the stress in my life. I will make time for something fun tonight.

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My hope is that be facing my grief I will begin to heal and will be able to face the challenges of the week and be more effective in my work. The cost of avoiding it was just too high last week.

An Apt Analogy

Trying to work with Daughter on various projects can be quite frustrating. She is slow. Very slow. Slower than molasses in winter slow. She was helping me unload the grocery cart into the car today. I put in 3 bags and 2 5 gallon water bottles in the time it took her to put 1 5 gallon water bottle in the car. She is also has spatial disabilities. Tell her to move right, and she'll go left. Tell her to come forward and she'll go sideways. Tell her something is on the floor right behind her and she'll move forward and look of in who knows what direction.

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I bought a new desk chair at the warehouse store today. The old one has has a spring poking my left thigh for several years, and the height doesn't adjust. I'm having problems I know are connected with working on my computer with the keyboard too high. I'm getting a small inheritance from Mom, so today I bought a new desk chair. I wrestled the box out of the car and onto the back steps. Daughter wanted me to take it back down the steps because she couldn't figure out how to get around it. I told her to just hold the door open. I stood inside the door and she was standing outside, I told her to lift up on her end and I'd lift up on mine. I would have done it all myself, but she was concerned it was too heavy for me and I'd hurt my back. She put her hands in the appropriate spot, but she didn't lift. I finally lifted my end and pulled it up the last step. We got it into the back porch, and she's grunting and groaning at her end. "Just push it." She looked confused and took her hands off the box. I easily pulled it forward on the carpet runner.

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One year Brother went camping with us. We decided to go canoeing one day. He got a kayak, and Daughter and I were in a canoe. I would give Daughter directions and she would do the opposite of what I was telling her. At lunch I informed him we were trading, and I'd take the kayak for the afternoon. That evening he told me that canoeing with Daughter was like trying to push a shopping cart with a broken front wheel. I thought that was an apt analogy. She wants to be helpful, she just isn't able to comprehend spatial directions. Occasionally it would be nice to have someone who could truly help me push something heavy, but she's more likely to pull against my pushing. She has a difficult time maneuvering a shopping cart, too.

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It's one of the little things that can be both surprising and annoying. A broken wheel on a shopping cart.

More Thoughts on Camping

I love walking in the woods. We go camping so I get away from people and take those long walks. For me, they are very healing. I always get a list of hiking trails in the area where we are camping, and then read the descriptions carefully looking for day trips for us. We don't go for long hikes, but we will go for several miles on various trails, and fewer people who are on them, the better. Daughter is not as enthused about my passion for spending time walking through forests. Even the promise of a view at the end does not do much to increase her enthusiasm. She complains about how exhausted she is and how she can't possibly go another step. I have discovered, though, that when I finally believe her and we head back to the trail head and the car, she has a spurt of energy and will find the strength to run with enthusiasm, urging me to hurry up. Once in the car, she never shows signs of fatigue. I would find that her complaining had not only shortened my time in the woods, it hadn't taken the pleasure out of what time I had there. I began to tell her that everytime she complained, I would add another mile onto the hike. This helped some, but I still had the knowledge that my companion was not happy about our current activity and was counting the steps until we could return to the car.

This year I made a deal with Daughter. If she would accompany me on hikes without complaining, we would do the things she wanted to do the following day. She thought this sounded like a good idea. So, we set off on our hikes and she didn't complain. When she stopped complaining, she began to discover that there were good things about hikes. She began to point out small critters in the forest, and stop me so we could listen for a woodpecker. She admitted that she enjoyed the hikes. She became a cheerleader during the particularly strenuous uphill walks, "Come on, Mom, we can do it!"

After our first day of hiking, we spent the next day at an outlet mall with an Old Navy outlet. She was delighted to be wearing a smaller size, and thrilled with the new clothes I purchased for her. I was pleased with the bargains we found, and the L'eggs, Hanes, Bali store gave me the opportunity to buy the underwear we'll need for the coming year. We were both pleased, and she was very willing to undertake a hike the following day. The beautiful picture above is from the hike we took the following day. There was a bench there where we rested, enjoyed the view, and she checked her blood sugar and ate a snack.

By the end of our week, she was talking about how she couldn't wait for next year, and how much fun she'd had. She still had moments of complaining, and was still convinced that the smoke from the campfires was out to get her and the insects were going to kill her, but she was much happier, and our trip was much more relaxing as a result. I guess we both are able to learn-- at least in some areas.

When Will I Learn?

I've often wondered when Daughter will learn something, but I've decided that I've been asking the wrong question. The question is not when will she learn, the question is when will I learn? When will I learn that if I'm not checking her bedroom and closet regularly, she will wad her clean clothes up and hide them in the corner instead of hanging them up properly? When will I learn that it's not enough to ask her if she's keeping her blood sugar records, I need to see them? When will I learn that if I'm not inspecting her teeth or toothbrush, she will insist she is brushing her teeth when she isn't? When will I learn that she isn't going to put family items away properly, and she won't remember where she hid them when we next need them?

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I keep forgetting that her body may be 22, but emotionally and intellectually she's no where close to 22. I keep forgetting that she doesn't learn from her mistakes, and cause and effect is not something she understands. I forget, because I want her to learn and grow. I want to think she's not going to be perpetually 8. I have decided, though, that I need to learn. Both of us will be much less frustrated when I learn to accept her limitations, and work around them. She may not be able to learn, but hopefully I will.

Tremors

Daughter has been experiencing severe tremors lately. They could be a medication side effect, or the result of switching to a generic for her seizure medication. (Insurance said I'd have to pay $570 a month to keep her on the name brand, as her neurologist wanted. I said we'd try the generic and file an appeal when she had a seizure.) When she focuses on them and tries to stop them, they get worse, and she panics. If she is distracted, they get better.

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Today I called and talked to the nurse at the psychiatrist's office. The tremors could be a side effect of the lithium, but Daughter isn't very stable right now, so we're reluctant to reduce her medication more. I'm taking her in for blood levels Saturday morning, then we'll make a decision about adjusting medication next week.

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Daughter is quite frustrated by the tremors, and continues to fight against them, even though I have pointed out that that makes things worse. At softball practice tonight we could see her shorts shaking, the tremors were so bad. She called me into the dugout after her turn at bat. I distracted her with things going on on the field, and they stopped. I point out how this works, but she can't or won't shift her focus on her own. She's very frustrated that I can't fix this immediately.

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I hope that the blood levels on her medications will provide the information needed to figure out how to reduce the tremors. I know it is very frustrating for her. I share her frustration. There are times when life just isn't fair.

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Last night she broke a mug that had been a favor at my parents' 50th wedding anniversary party. She sobbed, even as I assured her it was okay and we had more. "But Mom, I feel like I just broke Grandma and Grandpa, not the mug." Mom's death really hit her hard, and I find myself wondering how much her grief and stress are contributing to the tremors.

Why I Go Camping

For years my pattern was to disappear for 4 weeks in July. We'd go to the conference we attend annually and I'd reflect on the past year of ministry and wind down. We'd spend time with family, and we'd go camping for at least a week, if not longer. By the time we returned, I'd be refreshed, renewed, and excited about new possibilities. I'd be ready for another year of ministry.

Several years ago, things conspired to prevent us from camping for several years. Daughter had a summer where she had 3 psychiatric hospitalizations. She wasn't stable enough to handle camping. Then my parents' health began to deteriorate, and vacation time was spent tending to their needs. I missed that time in the woods, but I didn't realize how much until I was able to camp this year.

Away from our normal routine and distractions, I made some discoveries about my interactions with Daughter. We were sitting in a downtown shopping area one afternoon and I watched a mother and her daughter walk by, talking animatedly about something. I realized that most of my conversations with Daughter involve teaching, being therapeutic, or her health. "What's your blood sugar?" "Pull the zipper back and try again." "What are the good things that have happened today? Put your focus on those things." "What did you learn from your mistake?" "Take some deep breaths and relax."

Now I'm not sure that Daughter is capable of the kind of give and take I saw that pair engaging in that day, but I do think I need to make more of an effort to just be present with her, and not as teacher or therapist. There were two incidents that helped make this clear to me. One morning she sat down at the picnic table to check her blood sugar and said, "Oh, that's what that battery meant." A battery had been showing up on her meter for some time, but she didn't know what it meant. Now, the meter was dead. Fortunately, we had a back-up, but I told her she needed to tell me these things so we could be prepared. She informed me she had. I insisted she hadn't. Then she said the words that stung, "Well, if you'd get off the phone and pay attention to me, maybe you would have known." Another time we were sitting side by side in chairs next to the campfire. The smoke drifted over towards her, and she made sounds of frustration. I suggested if the smoke was bothering her, she move her chair. "But I want to be near you."

Trying to practice what I seek to teach her, I looked at what I could learn from these incidents. I need to be more attentive to her and just spend more time with her. I resolved that I would spend less time on the computer and the TV and more time just being with her. We will go for walks, play cards, and hopefully have conversations about things other than her physical or emotional health.

Daughter always struggles when we camp, because she needs her routine. This year she allowed herself to enjoy it more, and told me she is looking forward to next year. I suspect that at least part of the reason is because she finally had my undivided attention, and we were able to have fun together. I need to make sure that we have those times throughout the year, and not just in July.

The Honor of Being a Pastor

This morning I went to the nursing home to catch up with the saints and then over to the hospital to visit the 93 year old saint in ICU. She had been asking about her friends at the nursing home last night, so I promised to check on them before I visited today.

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When I got to ICU, she was alone. She is still weak, and was worn out from her bath. I pulled a chair up next to her bed and sat down beside her. We talked, and I read her a portion of Psalm 27 and prayed with her. As I was getting ready to leave, she called me back. She wanted to tell me about a strange experience she had.

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Her family had told me that the other night they thought she was dying, and she had been in a lot of pain and calling out to God. She has often told me she wonders why she is still here. Her husband died years ago. So this morning, she told me the following story: "I was talking to God, just having a conversation like I always do. I asked God to come to me and put his arms around me. I was struggling and asking God for help. I asked God to put his arms around me and lift me up and hold me." She went on, describing her prayer, building up the courage to share what she wanted to tell me. "Then I saw these giant arms coming down and holding me. They were just there, these arms. I keep thinking about them."

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I think she was afraid I'd laugh. I told her that what she saw was a gift from God, and she should hold on to that image to carry her through the hard times. I assured her that even though she could no longer see them, God's arms were still wrapped around her. I am honored to be walking with her through this illness, and by sharing her experience with me this morning, she gave me a wonderful gift. It is at times like this that I am in awe of the honor it is to be a pastor.

Home

We arrived home from our adventures yesterday just before 5:00. We had stopped at the kennel on our way into Tiny Village to pick up Cat and Kitten, who were as delighted to be home as we are.

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There was a message on my machine about a woman who was hospitalized and not doing well. We unloaded the car, and headed to the hospital. I felt bad that her family didn't know I was on vacation. Fortunately, they had figured it out and found another minister to come in and give her comfort. I had a brief visit with them, and then took Daughter out to eat and we got groceries.

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While I was away, I was contacted by a search committee about a position in a church a couple of hours from here. I spent some time last night researching the congregation on the Internet, and sent an email with my observations of their congregation and expressing my interest in the position. We'll see. I am being more proactive in my search for a new position, and have expanded the area I'm willing to consider greatly.

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Daughter did remarkably well with vacation this year. I also noticed a number of things I don't notice when we're in our normal routine. She has a very low tolerance for frustration, and isn't able to step back and consider different ways to approach a task. She is still very volatile. We were in the car and she was showing signs of frustration. I asked her what was wrong and that really set her off.

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I became aware of some changes I need to make in our routine. I'm going to cut back on both computer and TV time. My hope is to share some of the specifics of our vacation experiences over the next few days. For now, though, it is good to be home. It is good to hear Daughter singing on the front porch as she waits for the bus to pick her up and take her to the workshop. It is good to have Cat sleeping at my feet again, and to sleep in my own bed.

Camping

After 2 restful nights in a motel, today we pack up and start the next phase of our vacation. We'll go to church and then head north. My hope is to have camp set up and get a campfire going for dinner by 7:00. I think we'll make pizzas in our pie irons tonight. The weather forecast looks good, but that's no guarantee, of course.

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Daughter is excited, because we'll go back to some places she enjoyed and I've promised her a day of shopping. I know there will be some complaints along the way. There always are. I'm concerned because she has been taking long naps every afternoon. That could be a challenge with all I want to do. Hopefully it has been boredom, and not medication issues.

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I doubt I'll be online much the next week. It's truly going to be a break from everything. It will be good, and I suspect I'll find it challenging, too! I have always enjoyed camping, and I know our time in the woods will be renewing.

Hangin' with My Niece

I'm at Sister's house right now. Daughter is sleeping. I have laundry in the washer and dryer. Niece is playing a computer game. She's 4 years old-- and it's a spelling game. She spells 95% of the words properly. She keeps reminding me of how well she spells for a 4 year old. Sister is packing, as tomorrow they are getting on a plane to go visit Far Away Sister.

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This is a different visit for us. We will be staying in a motel-- it's the first time we've been here and haven't stayed with family. It is also the shortest time we've had with family. The family is changing. Mom is gone, and Dad is in a nursing home. It's a fancy nursing home, but it is still a nursing home. I grieve some of the changes, but I'm also enjoying the freedom we have to go off and do our own thing.

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Tomorrow Daughter and I will hang with Dad, and then Sunday we will head out on our camping adventure. It looks like we will have excellent weather-- highs in the 70's and lows in the 50's and sunny. It will be great weather for hiking.

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I'm tired, but it is a good tired, a content tired. I'm looking forward to campfires and walks in the woods.

Snapshots

Last night Daughter was downstairs with a group of about 20 adults and youth who were sitting in a circle and talking. Daughter decided to give them all back rubs, so she made her way around the group, giving everyone a brief back rub. They loved it. They had a napkin they were passing around ahead of her because they were all drooling in anticipation.

Today I made Daughter walk around the lake with me. One end is shallow and marshy, and there is a bridge over it. I took the picture from that bridge. We also saw a pair of swans. After I forced her to go, she enjoyed our walk.

This evening the closing hymn in worship was "Here I Am, Lord." That was the closing hymn at Mom's memorial service. I stood there and sobbed. Daughter was quite concerned, and found a friend to comfort me.

Daughter had desperately wanted to sing a song and dedicate it to Grandma during the talent show after worship, but I vetoed the idea. She always tortures herself when she's in the talent show. Before I could even ask, they had decided to have everyone sing Amazing Grace in the talent show in memory of Mom. Once again, I lost it. But there was lots of good humor in the talent show. The youth made a joyful noise to the Lord on kazoos. There was lots of good, clean humor. We had an opera singer serenade us, and a teenager sang a song she had written. A kindergartner put her feet on her head, and we all shook our bushy tales. There was a slide show of a bunch of face book pictures because people have been having difficulty getting online this week, and they were concerned about withdrawal.

In short, this has been a wonderful week of worship, learning, fellowship, and renewal. We say tomorrow after breakfast.

The Labyrinth

This afternoon there was an indoor labyrinth set up for our use. I let Daughter sleep after lunch, but at 4:00, I woke her up to go with me to the labyrinth. We walked over, and her awesome teacher was explaining it to her. She said, "This is a place of peace," and Daughter began to cry. I held her as she cried, and finally she told me that peace had been a word in Grandma's memorial service.

She didn't want to walk the labyrinth, so she sat with awesome teacher while I walked it. There were slips of paper with Scripture verses for us to take and reflect on while we were walking the labyrinth. The one I picked up said, "The Lord... gathers the outcasts... heals the broken hearted and binds up their wounds." As I walked I was praying/reflecting on Daughter's current emotional state and the possibility that we will be moving to a new community. I pondered how she will handle it.

The path of the labyrinth goes toward the center and out again, teasing you with the center, and then taking you away from it again. As I prayed for Daughter's healing, I recalled God's presence with us in the past, the way the call to serve in Tiny Village came about, and pondered how there is always strength for the current day's challenges. Right now I don't need the strength for the move, I just need the strength to deal with today's challenges.

As we walked back, I talked to Daughter about grief. I also discovered that she didn't know what grief or peace meant. I explained them to her. She spent some time talking and laughing with the community tonight. I could hear her downstairs, but I sat upstairs, with a smaller group. I decided we both needed time away from each other.

Daughter's tremors are getting worse. I don't know if it's because she's suddenly getting all her psychiatric medications on schedule and she's on too much, or if it's because she's now on a generic version of her seizure medication, and she's having partial seizures. It could also be exhaustion and stress. She slept for 3 1/2 hours this afternoon, and she's been sleeping well at night, too. She didn't want to go to the fireworks tonight. Usually, I make her go. Tonight, I decided to let her go to bed.

The labyrinth and the Scripture verse reminded me that though our path twists and turns, God knows where we need to be and when, and God will bring healing. Daughter will recover from her grief.

Blessings

Our theme this week is "Let your light so shine...." Yesterday evening's worship was in the outdoor chapel. The picture, taken with my blackberry, doesn't do justice to the beauty of the setting sun reflecting off the lake. It was a beautiful setting in which to reflect on the meaning of God's light in our lives and how we can/should reflect that light into the darkness of our world.

At the campfire last night, one of our friends, who was sitting between Daughter and me informed Daughter that when she came here, she gained not only a bunch of brothers and sisters, but a whole group of mothers. Daughter wanted to leave, and I told her she needed to wait a few minutes for me, so our friend put her leg across Daughter's lap so she couldn't leave.

Daughter has loved her first class of the day, which is taught by an old friend of mine. It is about more artistic approaches to God, including movement, dance, music, etc. The second class, which I am in is also taught by an old friend. It has been harder for her, because it is less active. I'm getting lots of good ideas and information, but it's too much information, and Daughter is overwhelmed. Another friend dropped her second class today and recruited Daughter to help her prepare craft material for Vacation Bible School. She brought drinks and snacks with Daughter in mind, so Daughter drank caffeine free diet pop and worked on this project with our friend during that class time. She was much happier.

This is why I love this community so much-- they are sensitive to Daughter and her needs and will bend over backwards to help her and give me a break. I am truly blessed by God in this community. There is friendship, support, worship, beauty, and opportunities to learn and grow. It is why we come here each year.

Dealing with Change

Daughter is struggling this week. It started even before we left home. She packed her own bathroom things, and I didn't check them. I did ask if she had specific things, like toothbrush, toothpaste, shampoo. Each time I asked, she'd run back upstairs to the bathroom. That should have been a clue. This morning I realized that she hadn't brought shower gel or a shower poof. Her showers the last two nights consisted of getting in and rinsing off. I handed her a bar of soap and wash cloth and made her take a shower this morning.

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Yesterday afternoon one of the activities was viewing the movie, "To Kill a Mockingbird." Not knowing the plot, I went in to watch it with Daughter. The family violence and racism triggered her PTSD. She did a craft yesterday afternoon, but her tremors are such right now that it was very difficult for her. Her aunt is going to help her with this afternoon's craft, as the activity director warned me Daughter wouldn't be able to handle it on her own. We both need a break from each other, so I recruited her aunt.

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She's struggling with staying awake in the classes she's taking. She's just tired over all. She's sleeping right now, and I'm not going to wake her up until right before it's time for the craft. This afternoon's movie shouldn't bother her-- it's Second Hand Lions. The weather is pleasantly cool. We're having a campfire tonight, and that will feel good. Tonight's worship service will be outdoors in the lake front chapel. That will be nice, too.

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The community is supportive, and Daughter will probably adjust to being here right about the time we leave. Then we'll get to start the adjustment all over again. It will be worth the frustration, though, as I'm finding time for rest and renewal....

Renewal

Daughter and I arrived at our conference yesterday afternoon. I've been catching up with old friends and making new friends. I'm learning about how to set up a web page for my congregation and resources for teaching prayer. I'm eating food I didn't cook, and I don't have to clean up after meals (I con Daughter into taking my dishes up to the dish line). I'm sitting in worship for which I have absolutely no responsibility. I'm doing this all in the most beautiful location-- there is a lake and lots of beautiful trees. Life doesn't get much better.

Getting Away

Tomorrow afternoon we will leave for 2 weeks. Our time away will begin with a conference. This is a conference we have attended for years, and it has become a community. There is a core group that is there every year, and others that come in and out. This is where people can come tell me that they've seen progress in Daughter. This is where I can find a listening ear. This is where other people will watch out for Daughter, giving me a much needed break. At this conference center we will have a motel like room (and they're even providing a small refrigerator in our room for Daughter's insulin), three meals a day that I don't have to prepare or clean up, and an opportunity to learn new things and sharpen my skills for ministry. It also gives me an opportunity to reflect on the past year's ministry. It is a wonderful way to wind down for vacation.

We will go from there to a motel for 2 nights. We will have an opportunity to spend time with Dad. He is becoming more confused. He was doing really well for a while, but I think now the relief is past and the long reality is setting in, and he's having a harder time. It will be good to have a couple of days to spend with him, and I'm sure that we'll eat plenty of good restaurant food with him.

From there we will go to a state park and pitch our tent and camp for 6 nights. We are going back to campground we have stayed at many times before. We will go hiking. We will take scenic drives. We will search for fossils. We will attend a concert. We will cook over the campfire. Even Daughter is excited about it (at least at times). Vacation, with its unstructured time, is hard on her. We haven't been camping in three years, because she hasn't been stable enough to handle it. Or maybe it's been because I've been too exhausted to deal with the challenge of keeping her on an even keel while camping. We are going far enough north that I hope the weather will be cooler. Usually it's warm enough during the day to swim in one of the many lakes in the area and cool enough at night that the campfire and sleeping bags are welcome. The picture is from our last vacation in that area.

The last time we were there, it was very hot. We spent our time in movies, the mall, and anyplace we could find that was air conditioned. I'm hoping for better weather this time. I want to go out and hike one of the scenic trails. Maybe we'll go tubing this year. Daughter, unfortunately, prefers shopping and movies to the outdoor activities that I love. I will threaten her into compliance: "Every time you complain I'm going to add another mile to the hike." I'll also give her the opportunity to make choices so she feels like she has some control.

For several days, I will forget about all my responsibilities here and enjoy time in God's creation. I'm looking forward to it. What I'm not looking forward to is all the things I need to do before we can leave.... Daughter is still asleep, but I'm going to have to get her up soon and see if I can convince her that she wants to be wonderfully cooperative today.

"I Didn't Know It Was Called Stealing."

We are getting some furniture from my parents' apartment today, so yesterday I was doing some cleaning/rearranging to make room for it. As I cleared off a card table in my dining room (which functions as a meeting room for the church), I noticed that the gift bags for shut-ins were too light. They were too light because someone had taken the candy, puzzle books, and other goodies out of them.

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Since there are only two of us living in the house and I hadn't touched them, it was pretty obvious Daughter had been into them. I asked her, and after the briefest of denials, she acknowledged what she'd done. I pointed out she had stolen the items out of them. I have always comforted myself by telling myself that many kids with similar backgrounds/challenges, at least she doesn't steal. She didn't try to minimize what she'd done, and seemed disturbed by it. Finally she said, "I didn't know it was called stealing."

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I believe that. She knows stealing is wrong. She was outraged with UB when the money went missing from Dad's checking account. Somehow, she never made the connection that removing everything from those gift bags was stealing. Once again, I am reminded that her brain is missing certain connections. Once again, I find myself wondering what the future holds for her.

Appointments

Daughter has 4 different doctors who prescribe medications for her: her family doctor, the endocrinologist (diabetes), the neurologist (epilepsy), and the psychiatrist. The family doctor is 12 miles away (if we can catch her when she's in the office near us), and the others are all at least 45 miles away, with the neurologist 100 miles away. She sees the neurologist twice a year and the endocrinologist 4 times a year. We've seen the psychiatrist as often as every 2 weeks and when she's stable have gone as long as 3-4 months between visits. She also sees therapist regularly. It is a constant balancing act, trying to get her the medical care she needs without spending all of our time running to appointments. Her doctors and I work hard to minimize the appointments as she has a tendency to play up her ailments. We want her to see herself as able.

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A couple of months ago they tested everyone is hearing at the workshop. Daughter flunked. The nurse wanted me to take her to the doctor immediately. Daughter is able to hear the TV when it is turned down to a very low level, and I've not seen any signs of hearing loss, so I decided not to make another appointment, but to mention it to her family doctor when I take her in for her meds. The nurse continues to bug Daughter about how she needs to get to the doctor because she can't hear. I continue to assure Daughter we'll get it taken care of. Today, I called and made the appointment with her doctor for next month. She needs a new physical for Special Olympics by July, and two of her prescriptions need renewal.

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I'm sure the nurse thinks I'm neglecting Daughter's health. In the last 2 weeks she's had three appointments. I still need to schedule appointments for an eye exam and the dentist. The dentist wants me to get her wisdom teeth pulled. The closed oral surgeon who takes medicaid is over 100 miles away. They aren't bothering her. It will be complicated because of her diabetes. I'm not in a huge hurry. I'm sure the dentist thinks I'm neglecting her, too.

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There are those who probably think I'm neglecting the church because I spend so much time transporting Daughter to doctor's appointments. It doesn't matter that I work on sermons in waiting rooms, or that I work many evenings and seldom get a full day off. I have actually been told that they don't care about my family and don't want to hear anything about it.

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Endocrinologist walked into the room Monday and gave Daughter a high five to congratulate her for her excellent blood sugar control. I'm glad there is someone who doesn't think I'm neglecting Daughter's health.

A Better Day

This afternoon I went and visited a woman who just lost her daughter to cancer. Her daughter was supposed to be dead 8 years ago, but was a strong woman who beat the odds. Even in November, when they started hospice, her doctor didn't give her much time. Up until the last couple of weeks, she was still going. This woman I visited today has now buried her husband, 5 of her siblings, and now her daughter, not to mention parents and such. We were remembering her husband and sister today. When I look at what she has gone through, it makes my own grief seem minor. Most of my grieving was done before Mom's death. I know I will grieve more in the weeks and months ahead, but I also know that there is much I can celebrate even in the midst of my grief.

Daughter came home today and used her words to tell me about her grief. That is much easier to deal with than her acting out. We read a book about grief, and she rested with her head on my shoulder for a while. I'm going to have to make time each day to nurture her as she continues to work through her grief. She wore a pair of Grandma's socks today. My 4 year old niece is sleeping in one of Grandma's t-shirts. She told Sister that it smelled like Grandma.

Far Away Sister has arranged for the furniture I'm getting from Mom and Dad to be delivered on Friday. I am very grateful. Now I need to go finish the newsletter, or Secretary will not be happy tomorrow morning....

Abuse

Daughter accused me of abusing her tonight. What terrible thing had I done? I went upstairs and took the remote out of the TV room. She has been avoiding cleaning her room and taking care of the load of whites in the dryer. She hates doing them both. I knew if the remote was up there, the temptation to sneak some TV would be strong. Seeking to avoid a scene, I removed the temptation. She had a screaming fit and accused me of abuse. She claims I don't care about her, and has suggested I get lost. Some days I just can't win....

The Atheist Next Door

There is a young woman who lives next door to me who is an avowed atheist. She also has Asperger's, sensory integration issues, a genius IQ, major depression (that at times leads to psychosis) and a very dysfunctional family. She and I have managed to connect, probably because unlike most people around here, I accept her as she is and appreciate the talents and gifts she possesses.

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The evening we got home from our time with family, she called me. She is vacationing in a major city, and was assaulted and raped by a stranger. Her physical injuries were minimal, fortunately. Her intellect saved her. She realized this guy wanted to think she liked him, so she quit struggling, and he quit beating her up. I told her how impressed I was with how well she was handling it, and encouraged her to write about it, as that is how she best processes situations.

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She has called and emailed several times since. She is a country girl in the city, and can't understand why the police haven't caught him, why they have questioned her and doubted portions of her story, and why she has become a prisoner in her friend's house until he is arrested. She tried to go out sightseeing on her own, and ran into him again on public transportation. She had the presence of mind to get his name and phone number before fleeing. She provided this to the police, which makes her even more frustrated by their inability to arrest him.

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I wish I could go get her and bring her home, but distance makes that impossible. I have assured her that while I know she doesn't believe in it, I'm praying for her. Once she gets home I will take her out to breakfast and listen. I will continue to assure her that it's not her fault and her feelings are completely natural. I will try to help her understand the actions of some of the other players in her drama. I will mourn the damage done to a remarkable young woman who is working hard to overcome her challenges and follow her dreams. I will encourage her to continue to pursue her dreams, and seek to give her some of the tools she needs to protect herself.

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I wish there was more I could do. I wish she had connections with more people who would support her. I will do what I can do. I will continue to be the pastor of the atheist next door.

Whining

A number of years ago I read an article that reported that scientists had determined that children's whining is at a pitch that irritates the nerves. Of course, any parent could have told scientists that and saved them a great deal of time and trouble. Daughter is demonstrating this right now. I know it's her way of grieving, but she is being incredibly annoying. She is complaining constantly about being dizzy, and being quite dramatic about staggering around. She doesn't seem to be able to speak without whining. I know that she isn't able to talk about her pain and grief, so they come out in physical symptoms.

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I am not showing much sympathy for her physical symptoms-- in fact, I'm pretty much ignoring them. I am encouraging her to talk about her feelings and grief, though, in the hopes that then she won't have to feel sick.

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We leave next Sunday for two weeks. I am behind starting out, and need to get so much done before we leave. I really need Daughter's cooperation if we are going to get everything done. We aren't done unpacking from our last trip, but we need to begin thinking about packing for our next trip, which will include 6 nights of tent camping. We haven't camped for several years, so we need to go through all our equipment.

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As hectic as this week will be, I'm grateful we will be leaving next week. I'm tired, and I'm thinking that it is those two weeks we are gone that will really bring healing. The first week will be spent at a conference we have attended for years. It's a safe community where Daughter is known and we are both supported. I'm looking forward to the opportunity to get away and have some time to sit and reflect. Right now my goal is to get through this week. Next week I'll have time and space to mourn. But not this week.

Dad and Daughter

It looks like Dad has more life left in him. His blood sugars are getting better, he's doing his physical therapy. He has begun going to the bathroom without help. He's supposed to be getting a walker with a seat, and he's eager to get it so he can get out more and won't need his walking chair. He had several visitors yesterday, and was pleased to see them all.

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I'm pleasantly surprised. The night of the Memorial Service as we waited in the ER, I didn't think he'd be with us much longer. I wondered if I'd have to interrupt my vacation (which begins June 29). Today, I'm not worried about my vacation being interrupted. He actually called me today-- and left a message when I didn't answer. He'd called Sister earlier, bragging about his blood sugar and his weight (both of which were very good).

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I wish I could say Daughter was adjusting as well. Today's she's moved from one spot to another, sleeping. When she walks around, she complains of being dizzy, or she cries. She showed some excitement about vacation earlier, but is back to sleeping now. Grandma's death hit her hard. Maybe she really is sleep deprived, and will feel better for all the sleeping she is doing today. That is my hope, anyway.

Rewarded

Today I received a report from Daughter's endocrinologist. I had taken her in for her blood work earlier this month. One of the tests measures her average blood sugar over the last 3 months. Daughter's last test had been her highest ever, and her blood sugars were all over the place, from sky high to lows that wouldn't respond to treatment.

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I took over her insulin once I figured out that she hadn't been handling it properly, and I put an alarm on her bedroom door to stop the middle of the night snack runs. Her A1c is now 6.3, which is fantastic. (The target range for diabetics is less than 7.0 or 6.5, depending on who you talk to.) It works out to an average blood sugar of 129 (normal is less than 120). Needless to say, I am delighted. There have been times when I have been frustrated by the fact that I have had to take over so much of her diabetes care. But today, I saw the reward of my efforts in that little piece of paper from the endocrinologist. My hard work is protecting her from the complications that are so much a part of diabetes.

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Perhaps most rewarding, there was a warning from the doctor to avoid low blood sugars. Daughter hasn't been having any. I don't remember her last low! We've achieved excellent control without low blood sugars. I needed some good news this week, and this definitely qualifies.

Home....

We arrived home at about 7:30 tonight. I decided not to go to Niece's dance recital. We wouldn't have gotten home until after midnight if we'd gone, and I am just exhausted. I slept for about 10 hours last night, and that helped some....

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Dad continues to sound congested. His blood sugar continues to be entirely too high. Yesterday we took him out to lunch. His blood sugar was 441 (the meter in the ER read high after 475). I more than tripled the insulin that was ordered, and he was still close to 400 at supper. If I hadn't given him that extra insulin, we'd have been back in the ER. Supposedly they were going to see about getting him breathing treatments, but nothing has happened yet. He tires very quickly, which is not a good sign, but not surprising.

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We didn't get the apartment cleaned out. I'm still trying to figure out how to get the furniture I'm getting down here. I have entirely too much to do in the next few days, which will be made more challenging because my brain is still not operating on all cylinders.

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I appreciate all the prayers that have kept me going through this. In a week and a half I leave for study leave and vacation. I'm hoping that the time away will be an opportunity to begin to heal and recover.

Sunday

Daughter had a rough day yesterday. She hadn't slept well and her blood sugar was running high. She was clingy and needy. I nurtured and kept going. We didn't go to church yesterday-- too exhausted and it would have been too complicated with her over at Sister's house. We watched My Big Fat Greek Wedding on my computer last night. Neither one of us had seen it, and we both enjoyed it.

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We spent about 3 hours with Dad yesterday afternoon. He is doing really well. When we walked in, he had an infomercial on TV. I grabbed the remote and turned to Encore Westerns or whatever it's called. He used to enjoy watching their movies, but hasn't in quite a while. We watched a western together, and after initially telling me how he doesn't watch them anymore, he really enjoyed it. The assisted living place has a large, wrap-around front porch with lots of rocking chairs. We pushed him down there since it was a beautiful day. He decided to stay down there when we left, assuring me he could get back in for supper. I saw this engagement and interest as a very positive sign.

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I'm still not sure when we'll head home.... Sister's birthday is Wednesday, and Niece has a dance recital that evening. Sister would really like us to stay for that, but I really need to get home and get to work, too. I think at this point, we'll probably just stay. Thanks, everyone, for your ongoing support.

A Long Day

The Memorial Service for Mom was very nice. Daughter tried to escape several times, but managed to stick it out. Daughter and Far Away Niece (who is 15), both were sobbing at points. Dad did well, and was very pleased with the service. It was over an hour long, but had lots of music and such and was nice. We went over to see Dad yesterday evening (I figured he'd be exhausted and want to rest, but he wanted us to come over). While we were there, they did his evening blood sugar check. It was too high for the meter to read. Sister tried to page the doctor, but he didn't respond.

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The doctor had taken him off novolog, which is a fast acting insulin used to cover food. His blood sugars had been creeping up all week. He told Sister that his blood sugars were good. They weren't. I ended up taking him to the Emergency Room. I dropped Daughter at Sister's house. Far Away Sister came to the ER, too. His blood sugar was 490. The ER doctor thought he'd be admitted, but his doctor (who finally responded to the ER page) said to give him 10 units of novolog and start him back up on it. Of course, they didn't have any novolog. I drove over to Sister's house (about a mile from the ER), and got Daughter's novolog pen. Far Away Sister took him back to assisted living (it was close to her hotel). It was after midnight, so Daughter chose to stay with Sister (she was asleep with Sister and Niece in her king size bed). She didn't get her Lantus (long acting insulin) last night, so I expected her blood sugar to be sky high this morning. It was a little high, but not bad, all things considered.

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This morning Dad's blood sugar is 112. He's tired, but asking me to bring him things. I'm hoping Sister can drop off Daughter at Panera on her way to Niece's dance recital dress rehearsal. Dad was a little confused about things yesterday, mixing up stories, time lines, and such. I think he'll do fine while Far Away Sister and I are here and he's getting lots of attention. I don't know how he'll do once we leave.

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I decided not to go to church this morning. I'm exhausted, and don't want to be around people. I may take Daughter to a movie. She needs a fun escape. Far Away Sister warned me not to take her to Up, since apparently it begins with the old man's wife dying. Daughter has had far too many PTSD triggers this week, and so I'm going to work hard at avoiding any additional ones.

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Thank you all for your prayers and support. We're going to be fine.

Grateful for Panera

This morning I'm sitting in Panera. We've eaten breakfast (Daughter had a bagel with cream cheese, I had a breakfast sandwich). Daughter is on a roller coaster this morning. She wanted to write something to say at the Memorial Service, but couldn't. Now she's teary and pouty and just wanting to get out of here. In a little bit we'll leave to go pick up Dad.

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It was supposed to be a sunny day, but it's rainy and humid. Daughter's carefully straightened and curled hair is beginning to frizz. We tried. I'm sure today will be a long day.

Cut Off

I’m writing this on Friday evening. I’m not sure when I’ll get internet access to post it. But these are my thoughts as of now, and be warned, I’m feeling very sorry for myself tonight. A death brings out all the worse in a family system. When we began discussing funeral plans months ago, anything I suggested was rejected, so I decided to stay out of it. Against my advice, they decided they didn’t want the standard funeral dinner the church offers, so my siblings have been doing all the things they shouldn’t have to worry about, including cooking multiple stewing hens and buying all the food and paper products. They’ve decided that the church will be too small to hold all the people who want to pay tribute to Mom, so they’ve rented a tent. They are creating a great deal of stress for themselves, and while I am staying out of it as much as I can, I am still catching the backlash.

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Several times now we’ve made plans, and then my sisters have changed them, failed to tell me about the changes, and been mad when I didn’t know about the change. Daughter and I are sleeping on air mattresses in Dad’s old apartment. We don’t have TV or internet access, and the first night we didn’t even have a working shower. Brother noticed it was broken but didn’t bother to turn in a maintenance request. The apartment is a disaster and there is much work to be done in it. Twice now my sisters have scheduled times to work in it and then cancelled at the last minute. So Daughter and I are here in the chaos, surrounded by reminders of Mom, and cut off from the outside world.

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My siblings are collecting sympathy cards and calls. I’m cut off from the internet, so I’m not. I’ve been able to get online briefly at Dad’s new assisted living place a couple of times, but I can’t do much since I’m supposed to be visiting Dad and don’t want to spend much time on the internet—I do a few mindless things, but not much.

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Daughter, predictably, is not coping well. This morning I washed her hair for her. It desperately needed it, and it was an easy way to provide her with some nurturing. I took off her catapres patch, and then forgot to put on a new one. As a result, she was irritable today. My sisters decided to meet back at Sister’s to set up the display boards. Daughter didn’t want to go, but we went anyway. When we walked in, Niece greeted us with disappointment that it wasn’t other family members who were on the way. My sisters ignored us. Nephew came in, and he wanted me to do something with him on the internet. So I went to interact with someone who actually was willing to interact with me, hoping I could also get some internet time. While I was gone, Sister asked Daughter to go outside to play ball with Niece. Daughter sighed, so Sister snapped at her. Daughter stormed out to sit in the car, insisting we had to leave right then.

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I set Nephew up with what he wanted, and left. I stopped and bought a new straightening iron and lotion for Daughter’s hair, and then we came back to the apartment and put 27 Dresses on my computer and I began straightening her hair—more nurturing behavior. While she loved the movie, I was identifying with Jane—always taking care of everyone else to my own neglect. We paused the movie to run out and get a Little Caesars Hot N Ready pizza, and then came back to finish the movie and eat dinner. When the movie was over, Daughter had a meltdown. She wanted to go home immediately and informed me she couldn’t go to the service tomorrow.

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She finally fell asleep leaning against me. Then Sister called and demanded to know why I wasn’t answering her phone calls. Maybe I didn’t answer because I wasn’t getting them. Cell coverage in this apartment is notoriously iffy. She informed me that I was to pick up Dad earlier than planned for the service tomorrow. I said I’d do that, provided I could convince Daughter to go. She’ll go, but I’m tired of being taken for granted. Tonight I’m feeling very cut off and alone.

Thank You

Thank you all for your good thoughts and prayers. By the time I had found someone to cover the committal service, figured out a hymn sing for Sunday, done laundry, packed and done the other things I needed to do, we didn't get here until 9:30 last night. I spent much of my time yesterday on the phone, pacing. By the time I got here and got my air mattress blown up, I was exhausted.

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We're sitting with Dad now in his new assisted living apartment. I had to call ATT to get his internet working, but I'm now back online. I was going through withdrawal!

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The grief didn't hit me until I got to the workshop to pick up Daughter, and told her. When I saw her face as I told her the news, we both ended up in tears.

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I'll have more to post later. For now, we're doing okay.

Finished

Mom died this morning. Dad had begun to recognize reality, calling me to tell me she had about a week left. I've been pacing all morning as I make arrangements to leave town. Secretary has been wonderful. A colleague will handle the committal service I had tomorrow afternoon. In a few minutes I will head to town to tell Daughter and bring her home so she can help me pack.

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Brother and Sister were both there when the nurse and hospice chaplain told Dad what had happened. He keeps asking them not to leave him. There will be a memorial service Saturday at noon at their church. Daughter and I should arrive this evening. Far Away Sister will fly in very early Thursday morning.

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I am surprised by how well I'm doing right now-- of course, I'm busy focusing on everything that needs to be done and the needs of everyone else. At some point I'm going to have to sit down and face it all, but for now it's good to have things to keep me busy and occupied. I suspect that I won't be posting regularly for a few days.

Denial

Sister had a conversation with Dad last night. He explained to her that the doctor had prescribed antibiotics for Mom, and she was going to be fine. Sister expressed doubt about this report, but he was quite insistent. She called the doctor. "Is Dad confused? Did you really prescribe antibiotics for Mom?"

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Dad is confused. We always thought he would die first. He has always had health problems. Mom has always been healthy. The nurse or one of us tell him something, and then he reworks it in his own mind. "She has less than 20 days," becomes "She had about 30 days, but since she's eating now she'll be around much longer." "She has a high fever," becomes "She has an infection, so antibiotics will cure her."

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I've encouraged Sister not to take away all his defense mechanisms. This morning Dad asked her, "How much time does your mother have?" She told him not very long, and that Far Away Sister was making arrangements to fly in. He immediately shifted his focus to how nice it will be to see Far Away Sister.

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He knows. He just doesn't want to. It's going to be very hard on him. I don't anticipate him living long after she dies.

Once Again....

Once again we are being told that Mom is near death. Once again she is not responding. Once again I am surprised by the level of grief I am experiencing. Once again I am struggling with whether I need to jump in the car and drive to her side. Once again I am going over the weekly schedule, thinking about what I need to get done early and what needs to be rearranged.

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Once again I am struggling with my responsibility to my parents and my responsibility to my Daughter. Once again Daughter is struggling as she seeks to process all of this. Once again I sit waiting for the phone call. Once again....

Insurance Rant

My insurance company wants us to use their mail order pharmacy for all maintenance prescriptions. If we don't, we have to pay more for our prescriptions. I dutifully transferred my prescriptions to them over a year ago. I really don't want Daughter's prescriptions coming through a mail order pharmacy, as she has 4 different doctors prescribing medication for her, and I'd prefer to have a local pharmacist keeping tabs. The deciding factor, though, is that the mail order company does not take medicaid. Medicaid pays most of the copay, leaving us with a $2 copay on a few of her prescriptions. For us, it would be much more expensive to go mail order for her prescriptions.

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I contacted the mail order pharmacy by email several months ago to ask if they'd take her medicaid. They wrote back that they didn't, but I could save money by transferring her prescriptions to them. No, I couldn't.

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Every time we fill her prescriptions at the pharmacy, I get a letter from the mail order pharmacy telling me how much I could have saved by using them. They send a letter, complete with .44 postage, for each prescription. Last month I got 16 of them. That's 7.04 not counting the cost of all the paper and generating the letters. I sent another email, telling them I would not be switching as she had medicaid, so they would be more expensive, and asking them to stop wasting money sending me the notifications.

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Friday I received a message on my answering machine from someone at the Board of Pensions telling me I could save over $1,700 every three months if I'd switch her prescriptions. Today, I received 7 more letters from the mail order pharmacy telling me I could save money by switching her prescriptions to them.

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I give up.

Like Grandfather, Like Granddaughter

Dad's blood sugar was high last night. He refused to tell the nurse what he'd been into. She assured him she'd find out. It turns out he ate another resident's dessert and convinced another resident he hadn't eaten and so ate part of his meal. The nurse told Sister about it today, and Dad just grinned.

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In so many ways he reminds me of Daughter, or maybe Daughter reminds me of Dad. They both love food, and neither one is particularly concerned about the longterm implications of their diet. Daughter gets upset when she sees Dad doing things like that, and is furious when I point out that she does the same thing.

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Daughter is very distressed with Mom and Dad's declining health. Everytime I call Dad, his first question is about how Daughter is. They have a strong bond, for which I'm grateful. I just wish they didn't share a similar neglect of their health.

The Next Challenge

Dad is in his new apartment at the assisted living facility. This once easy going man has suddenly become very demanding. He calls for an aide to hand him the remote control to his television. He called me yesterday and told me to call Brother and tell him to get over there. I explained that Brother was busy (Brother had taken vacation time to get Dad moved and settled). He still insisted I call Brother, so I did. Brother was on a conference call for work, so I called Dad back and explained it again.

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Yesterday afternoon Dad called me again. "Do you know where I am? I just woke up from a nap and I don't know where I am."

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Today they moved Mom into the room across the hall from him. The hospice nurse told him she had less than 20 days left. Sister told me that she noticed a marked decline in Mom over the past week. Dad told me that they initially thought Mom had 30 days, but now that she's eating, she has more time left.

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We think he might not be getting enough oxygen while he's sleeping, so the doctor is going to check on that next week.

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Sister and I both made vacation plans for the week of July 5. I figure that will be the week Mom dies.

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One day at a time. We will have the strength to face the challenges of each day.

Finally, a Good Day

Dad called this morning. He sounded great. Dad doesn't generally call us, and I had just spoken to him yesterday evening, so this was unusual. He was calling because he had exciting news he wanted to share: UB has an appointment for credit counseling tomorrow. Dad was so pleased. I could tell that he felt like a huge weight had been lifted from his shoulders.

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I think we are all relieved. Spouse kept complaining that it would be embarrassing to go for credit counseling. I was ready to tell spouse that going to jail, into bankruptcy, or losing their home would be more embarrassing, but fortunately that wasn't necessary. I hadn't had a conversation with Spouse, but Far Away Sister did, and Far Away Sister had been too angry to continue the conversation. Far Away Sister wanted me to call Spouse, and fill in the blanks, but instead I chose to call UB. I read UB the riot act, explaining that the lack of responsibility was having a negative impact on Dad's health. I told UB that Spouse needed to be fully informed and told how generous and understanding Dad had been. I listened to all the excuses about why they had been too busy the last 5 1/2 months to schedule an appointment with a credit counselor. I didn't buy that, and told UB to make the appointment and talk to Spouse. Apparently, UB heard me. I am the oldest, and am significantly older than my youngest siblings. I was often seen as a third parent. I made use of that authority yesterday. Most encouraging, UB is still speaking to me. I called Dad a while ago, and UB answered and was quite friendly and talkative. Spouse may not be speaking to any of us, but UB is. We can deal with that.

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I had the opportunity to visit with 6 of the saints at one of the nursing homes in town today. I always enjoy my time with them. Today, I took them communion. It was wonderful to be able to visit with them. They are all such good people.

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Daughter came home in a chipper mood this afternoon, and she got to work doing things without me saying a single word. I was impressed. Hopefully now that she has readjusted to her meds and is getting them regularly she will be on a more even keel.

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The new vacuum cleaner I ordered with Dad's money arrived today. The hair that Cat and Kitten leave all over the house is very hard on vacuum cleaners. I was doing well if I got a year out of them, so I ordered a rebuilt Dyson designed for animal hair. I was amazed at the amount of dirt it picked up. I knew the old vacuum cleaner was bad, but I hadn't realized how bad.

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It was wonderful to have good news on so many fronts today. It does much to lighten my own stress level. Tonight, I'm going to make campground reservations for the vacation Dad is financing. It will be wonderful to go camping again. I'm looking forward to long walks in the woods, campfires, and concerts. My time camping is always renewing for me.

Turmoil

Some of you who have been reading for a long time may remember that back in January I discovered that Unauthorized Borrower had been taking advantage of Dad financially. Dad rewrote his will, forgiving the loans he had given UB. We also told UB that credit counseling was a necessity. UB has been "too busy" to get the counseling. The stress is off UB, and we fear that UB is not doing the necessary things to get the finances in order.

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Dad has decided to be generous lately. He has given several gifts of money to his kids. The first was just because, and the second was to help us go on vacation. Far Away Sister, who is the keeper of the money, suggested to Dad that he tell UB that the vacation money was contingent on beginning credit counseling. UB's Spouse has expressed displeasure at this condition. We suspect Spouse doesn't understand that Dad generously decided not to send UB to jail for theft. We suspect Spouse doesn't know how much money was involved.

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Dad listened to Spouse express disapproval of the conditions on the money. Dad is now hurt, and angry. Dad was discharged from the hospital today and moved into the new assisted living facility. Dad really didn't want UB around.

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I hope and pray that UB will get their financial life in order, and recognize how generous Dad has been. I hope Dad will live long enough to see UB do those things. I fear that there are breaks taking place in the family now that will be hard to heal. That grieves me.

Disconnects

Sometimes Daughter just doesn't make connections. She has times when cause and effect just aren't in her tool kit. Today I picked her up to go see Therapist. She hadn't realized she had another appointment this quickly, and she wasn't pleased.

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"It hasn't been two weeks."

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"I know, but you haven't been doing well."

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"That doesn't make any difference. It hasn't been two weeks."

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I filled Therapist in on my anger with her on Saturday.

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Therapist reported after their session that Daughter couldn't understand why I had been so angry, after all, she had told the truth. Therapist pointed out that she lied twice before telling the truth and caused me more work. Daughter just couldn't comprehend my anger.

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These are the kind of disconnects that make it so difficult for her to learn and acquire the skills she needs to live independently and work in the community.

Regression

Yesterday Daughter had to remain in my line of vision at all times. It's been a long time since I've had to do that with her. I was reluctant to do it, because I didn't want to be her target all day long. She has been so exhausting lately that much of the time I haven't wanted her any where near me. It had become clear, though, that she was making very poor choices and could not be trusted at all. She was "stuck on stupid" and showed no desire to get unstuck. So, I went back to something I used to do a very long time ago-- telling her she had to keep herself where I could see her at all times.

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Much to my surprise (and relief), it wasn't an exhausting day. In fact, as the day went on her mood lightened and she became more cooperative. Why would making her stay within my line of vision make her happy?

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My parents ongoing health issues have created much stress. (As of now, Dad is out of ICU. The bleeding has stopped, but his hemoglobin is still low, so they're still giving him more blood. Mom has not only regained the ability to swallow, she's picking up the glass of ensure and feeding herself.) Whenever she is stressed, Daughter regresses. I have also been stressed, and Daughter has been frightened. Am I going to keep her safe? Can I keep her safe when I'm so distracted? Do I still love her?

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So, she's testing me again. Yes, eventually I'm going to figure out that she's not taking her medication and that she's sneaking food. Yes, I will rein her in when I need to to keep her safe. I am paying attention. I do still love her (even when I'm angry with her). She can relax. Life is okay.

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She will continue to be on a short leash, but I think (hope) she is done escalating. I think when I made her stay in my line of vision yesterday, she was finally convinced that will continue to keep her safe-- even from herself. I get frustrated with her for not realizing she can trust me, and frustrated with myself for not recognizing what is going on sooner. Maybe eventually one of us (or better both of us) will learn....