Juggling

This morning I went over to feed Mom. When she's awake, she eats well. But she falls asleep after every bite. I had to leave before she had eaten everything to pick up Dad for his doctor's appointment. He wanted to go for pizza for lunch today. I vetoed that idea even before we saw the cardiologist. The cardiologist was not happy. Dad is carrying around a lot of extra fluid right now. He has also gotten noticeably weaker since I've been here. While waiting for the cardiologist to consult with his family doctor, I started dealing with church calls.

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Our organist has been off for surgery, and had told us she'd be back this Sunday. Well, she's not ready to come back, and won't be back until after Easter now. Our substitute organist is not available for Easter. We don't have musicians for Maundy Thursday or Easter as of right now. Another man is in the hospital after he filled up with fluid. I spoke to his wife, who is hoping he may get home today. This man had heart surgery about a month ago. We are also having a crisis with the youth group fund raiser. I was on the phone when I wasn't talking to the doctor or checking out at the store.

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We made it to Trader Joe's, but Dad was too weak to walk all the way through the store. Daughter took him out to the car. We bought some low sodium food, and hopefully that will help make up for my refusing to take him for pizza for lunch today. In a few minutes, I'll be picking him up for his afternoon appointment. He will hear again how dangerous his current situation is. He finally acknowledged that he needs to get some of the fluid off because he is getting weaker. They checked his pacemaker while he was at the cardiologist. It's keeping his heart going about 74% of the time. Maybe we have the wrong parent on hospice....

The Best Laid Plans

So I came here determined that I was going to have some fun and do things other than take care of my parents. Today a colleague was going to come over so we could work on worship planning. Today I went over to the feed Mom breakfast at 8:15. I then drove to the nursing home she was in briefly for rehab to pick up her belongings. I stopped at Target to get a small coffee maker and alcohol preps for Dad. When I walked into the apartment, there was a message that someone over on the unit with Mom was looking for me, so I rushed over there to visit with one of Mom's old friends.

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I got back here, and Dad asked me to call and see if I could get him an appointment to get new glasses. I called and they had an opening today, so I rushed to eat lunch and feed Daughter, and then wrestled Dad and his wheel chair into the car. While he was getting an eye exam, he asked me to go get some CD's of hymns for Mom. I rescheduled my time with my colleague for Wednesday.

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The optometrist told Dad he needed to see an opthamologist and a neurologist. He has another retinal bleed, and she thinks his stroke has affected his vision. Dad wants me to make those appointments and take him while I'm here. Tomorrow he has an appointment with his cardiologist at 9:15 and with his internist at 1:45. Wednesday my colleague is coming, and I'm not cancelling again (I probably shouldn't have said that).

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Sister announced yesterday that she and Niece would come join us for supper tonight. I'm trying to make low sodium meals for Dad (since his eating out in restaurants resulted in an additional 8 lbs of fluid retention). Last night I had put some chicken into marinate in olive oil, balsamic vinegar, and assorted herbs. I was trying to figure out what I would do with that for company, when I remember how much Dad had enjoyed the chicken curry I'd made last time I was here. I decided I'd make chicken curry and cook the marinated chicken for use in salads and with rice and such.

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Sister called and told me she thinks the bites I'm giving Mom are too big. (Not that she's been there when I've fed or been there to feed her herself). She doesn't know if Niece will like curry, so I'm cooking some of the marinated chicken for Niece. I sent Aide to the store for some more chicken and other ingredients.

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Brother showed up to take Daughter to a movie and dinner, so I had to figure out carbs and insulin for her supper. I shipped Aide and Dad over to feed Mom. I promised Dad I'd get him to Trader Joe's while I'm here. Sister just called and an old friend wants to come see Mom, but she doesn't want to see her alone. Sister told her I'd be glad to take her over there.

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I also need to meet with the home care agency about changing from live-in to daily aides for Dad and adding services for Mom. At some point, I have to write a sermon for Sunday, and begin planning Maundy Thursday and Easter. I'm going to Sister's for supper on Thursday, and a friend will be there that I'd like to see.

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Friday morning, we're headed home. I'll probably have to finish my sermon after I get home, so I'm not waiting until Saturday. I hope Daughter has fun with her uncle. She needs to have some fun, as this is really hard on her. I'm so grateful that we're staying in an apartment this time so we can at least get a bit of a break. It seems like every time I come here, the things that need doing exceed the time available for doing.

Projects

Daughter has a history of taking on big projects, and then having difficulty following through to complete them. Sister was out shopping with Daughter after Christmas, and bought her things to make a scrapbook about Brother's wedding which she then planned to give to Brother and Sister-in-law as a gift. She had done two pages, using a few pictures I had printed out for her. I ordered a bunch of prints for her that Niece had taken. I bought her some more paper and decals and scrap booky stuff she could use to complete the book.

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This afternoon she pulled out all her supplies and confessed she was overwhelmed. I often have to break big tasks down into smaller pieces for her. I suggested she sort out the pictures by subject. She did, coming up with four groups. I suggested she take the pictures from the rehearsal dinner (the smallest group) and sort them out so that everyone who was there was in at least one picture. That was too much for her. She's now taking a nap.

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She is so easily overwhelmed and frustrated. Unless I find a deep reservoir of patience and sit down and direct her, this scrapbook will join the pile of unfinished projects that are in various places around our house. She will be very angry the next time I decline to finance a new project until she finishes at least one of those she has started and then abandoned.

A Good Day

Mom was moved back to her familiar room today. She's having a great day. I got more coherent thoughts out of her today than I have in months. She only ate a few bites of her pureed lunch. She told me, "I don't like it." When I tried to give her more, she said, "No, really." Brother is bringing her a frosty.

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Daughter is doing better with it this time, and leaned in to give Grandma lots of hugs and kisses today. Grandma ate it up, of course. Last night we had a room with twin beds, but starting tonight, we have an apartment-- complete with a small kitchen and living room, and a bedroom with twin beds. It will make being here much less stressful.

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Dad's Aide is a little bit younger than Daughter, and the two of them have latched onto each other. Aide walked to the store to get some stuff today, and asked Daughter to go with her. Aide is African American, so I suggested to Daughter that maybe she'd be willing to teach her how to wrap her hair. I think Aide will make this trip much easier on Daughter.

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I escaped Mom's room to come back to the apartment for a break, but Daughter just called and they want me to come back and bring some things, so I guess I'll go back over. I think Dad is enjoying spending time with Mom when she's more with it. Daughter said they were holding hands. For now, life is good.

And Now, Back to Your Regular Life

Mom ate a little food yesterday. I wasn't sure whether this was worth celebrating or not. It's good she's improved, is interested in food, and was able to swallow it. It also means that the waiting game is going to continue a bit longer. This morning, I made a decision. We are officially off death watch. We're headed up there today, and I'm going to find some fun things we can do while we're there. There are lots of museums and such in the area, so we're going to take advantage of some of those things while we're there. A colleague and I will meet to do some worship planning. We will spend time with Mom and Dad daily, but we're going to do other things as well.

I'm sure there will be times when their health issues will once again seem all consuming, but for right now, we're going to live as normally as possible. In light of that, a lighter story for today:

Kitten is a brat. She's almost 3 years old now, and she still is a brat. She still won't use the litter box all the time. She still empties the trash looking for things to chew. She still likes to chew on plastic bags and electronic wires. I've lost count of how many earphones she's destroyed by chewing through the wires. She also likes to chew on the hoses for the cpap machine I use for my sleep apnea. I made a long fabric tube to put over the long hose, and I hide the mask with the short hose that connects it to the long hose under my pillow every morning. This has worked well. Or it did, until last night.

Now Daughter and Cat learned long ago that it is not smart to wake me up in the middle of the night unless it is a dire emergency. They have learned that it is dangerous to wake me up in the middle of the night. Cat sleeps calmly at my feet until my alarm goes off for the second time in the morning. After the second alarm, he occasionally will come up to the head of the bed to say good morning. Kitten isn't that smart. Kitten doesn't learn. Kitten likes to live very dangerously.

Last night I was awakened by a crunching noise, not once, but twice. Kitten was right up next to my face chewing on the short hose. Both times I bellowed and she was thrown rather rudely from my bed. I suspect all she learned is that she has the opportunity at night to get at the hose that is so well protected from her during the day. Lucky for her she's cute. Sometimes I don't think even cute will protect her indefinitely. Fortunately for her, she is now at the cat motel for a week. Maybe by the time we pick her up I will have forgotten her newest trick. I wish I had hope that she will have forgotten it.

Illness

Daughter doesn't have a good sense of her body. She often magnifies minor symptoms as she seeks attention, but what is scary is the way she ignores other symptoms. When she was in 3rd grade, I got a call from her teacher. They thought she had a UTI, but she kept insisting she was fine. I went and picked her up. She had to sit down and rest 4 times on her way out to the car, and stopped to vomit twice. She continued to insist she was fine.

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For about a week she has been dramatically complaining about minor cold symptoms. I've learned to tune those things out. Then something comes along that shocks me. When we were in the dressing room tonight, I noticed a huge purple spot behind her knee. It kind of looked like a bruise. I bent over to investigate, and found that the skin around it was very dry. I asked her what it was. She looked and said, "Oh, I guess it's spreading." She has this same rash on her inner thighs-- two huge spots. She had shown me this when it was much smaller several weeks ago. I suggested that the nylon shorts she was wearing to bed were irritating it, and told her to put lotion on it and wear long pajama bottoms. Obviously that hasn't worked.

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I considered whether I needed to get her to the doctor before we leave tomorrow, but finally decided that I would give her some anti fungal cream to put on it first. We'll see if that helps. I don't know how big the rash would have gotten if I hadn't noticed it in the dressing room tonight.

Happy Birthday!

Today is Daughter's 22nd birthday. I didn't even remember until she started singing "Happy Birthday to Me" at the breakfast table. Fortunately, I had purchased a card and an itunes gift card when I was in Town earlier this week, so I gave her those. Tonight I will take her to City and we'll buy dresses for the memorial service and go out to eat.

We will be leaving tomorrow. I have arranged a room in the building where Dad lives. I haven't heard anything on how Mom is doing today. I have managed to get more things ready for worship during Holy Week. I still find I have very little patience.

But we will make it through. Daughter seems to be getting over her cold, so hopefully she will not be complaining about how sick she is all the time.

Seeking Patience and Understanding

I know that everyone deals with their grief in different ways. I know that everyone is on edge at a time like this. I'm telling myself that, repeatedly. I'm trying to find my patience. I'm looking hard for it. I'm having long talks with myself. It's not working.

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My siblings have grabbed hold of the memorial service. They want lots of music, which is fine, but some of the music they want the congregation to sing the congregation won't know. There's nothing worse than a congregational hymn at a memorial service that no one knows. In their enthusiasm, nothing I suggest is being heard. I've done a few of these services in my 24 years of ministry. I have a little bit of knowledge.

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I have explained to them my desire to be with my congregation for Holy Week and not to miss too many worship services. So now they are talking about scheduling the service for a Sunday. I'm glad they heard my concerns. They want it to be at a convenient time for people. I guess I'm not people.

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I won't even get into their ideas for the meal following the service, but they involve cooking and boning 20 stewing hens. In the mean time, I still don't know where I'm staying or even when I'm going to go up there. Mom was not as alert today. She is in isolation because they think she has c. diff. They don't know when she'll leave the hospital.

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I need to be patient and let them work through their grief in whatever way they choose. I just keep wondering when someone cares about my grief, and when my needs become important.

Lenten Reflections

I wrote the following reflections to put in our newsletter yesterday:
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This year, my Lenten journey has been enriched by what has been going on in my family life. I want to share some of what I am learning with you. Lent is the season set aside to prepare for our celebration of Christ’s crucifixion and resurrection. It is a time when we consider our sinfulness and need for the forgiveness that Christ offers. It is a time when we reflect on our own mortality: ashes to ashes, dust to dust.
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This year, it has been a season of watching my parents’ lives on this earth wind down. I am writing this the day after a swallow test confirmed that my mother is no longer able to swallow food or liquids. My mother has always been adamant that she did not want a feeding tube used to prolong her life. We have agreed to hospice, and now we wait. I made a trip up to see her on Sunday, March 22. She had been pretty out of it on Saturday, but antibiotics had eased her pneumonia and she was very alert the day I was there. Her face lit up when I walked into the room, and then she began to cry. We both knew we were saying good bye, and we both sought to comfort the other. She never spoke to me in words, but we communicated much that day. We cried, we hugged, we prayed. I told her that all we wanted for her was peace. Leaving her that day, knowing I would probably never communicate with her again in this life, was hard.
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I am very much aware, though, that it could be much harder. As my family mourns, we mourn as people with hope. We await not her death, but her healing. We know that because of Easter, she will soon be set free of the body that has become such a burden to her. Throughout this Lenten season, we have been considering our brokenness in worship. My mother’s body is broken, but as she comforted me last Sunday with her hands and her eyes, I knew that her spirit was whole. That is the gift Christ gives us: healing in the midst of our brokenness. We will cry as we bid farewell to my mother. Yet even as we say good bye, we know great peace. In his letter to the Philippians, Paul talked about the peace of God, which surpasses all understanding. In the midst of my sorrow, I know that peace. In the midst of my sorrow, I rejoice in the hope we have received through Christ’s resurrection. Christ is risen! Alleluia!

The Best Laid Plans....

I talked to Daughter's case manager. They tried to get her to work, and she refused. Case manager observed that she is quite good at manipulation. I called her on her lie when she got home, which set off an afternoon of raging. I got called some choice names, and some doors were slammed and items thrown around. Then she stopped raging and started talking about how she deserved to die. I've gotten pretty good at tuning it all out, but it is still exhausting.

Then came the reminder that God's time is not our time. I had very carefully done lots of work today so I could leave town tomorrow. I arranged to have important events covered. I worked ahead on worship planning. My hope was this would all be over and done and I'd be back for Holy Week. But Mom is still alert. The hospice nurse came to make arrangements today, and she doesn't think it will be this week. She thinks she has a while to live. Mom will probably stay in the hospital until Thursday, and then she'll go back to her bright, sunny private room at the memory care unit that has been her home for over a year now.

So I've arranged for someone to lead worship tomorrow night. I have a supply preacher coming in on Sunday. What I don't have is an immediate need to leave. I'm not sure what's best for Daughter. I'm not sure what's best for me. At this point, I will stay here tomorrow. I will go to the worship service, but not lead it. I will do some work on worship for Holy Week. I will seek to be patient with Daughter, who is demonstrating her wonderful talent to find my last nerve and stand on it.

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On a lighter note, the Sisters have decided that the attire for Mom's memorial service will be bright spring florals, preferably in pink. She always loved to see her daughters and granddaughters in pink. We chose a wonderful bulletin tonight. It's at the top of this post. The internet is a wonderful thing. It enabled us to shop together even though there are thousands of miles between us.

Unhelpful

I've had two calls from Daughter at the workshop. She's in tears, and needs to come home and be near me. Why does she need to come home and be near me? Because even though Therapist and I have explained numerous times the importance of keeping her busy and how unstructured time sends her into depression, some helpful individual decided that because Daughter was stressed about Grandma, they shouldn't have her do anything today, but just let her "sit and relax."

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I don't have 45 minutes to go pick her up, and she'd be worse off with me, as I'm trying to write newsletter articles and liturgy. If I brought her home, she would be clingy, making it harder for me to get my work done. I would become impatient, which she would pick up on, prompting her to become more clingy, and we'd end up in a downward spiral of deep despair.

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Not only have they not kept her busy, they gave someone else the work she was supposed to be doing to ease her stress. How many times do I have to tell them that makes things worse? How many times do I need to explain this to them? I'm probably going to have to go get her, because she will sink deeper into despair and they will continue to enable it. They need to get her up and make her move. Put on some music and make her dance.

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I'm going to make the most of the time she is still at the workshop, and see how much more I can get done before I need to go rescue her from their incompetence. I think my current lack of patience may be showing through in this post....

Balancing Needs

My congregation needs to worship, and Holy Week is rapidly approaching. They need a newsletter that will highlight the events of Holy Week, and they need to know that their pastor is present for them.

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My Daughter needs stability and to maintain her normal routine for as long as possible. She needs to be protected from too much time with her dying Grandmother, but she needs to be allowed enough access to her to allow her to properly grieve. She needs to be protected from unsupervised access to insulin, medication, and food.

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My family needs to provide one another support but also allow enough space for each of us to deal with things in our own way.

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Mom needs to know that she is loved and appreciated. She needs the peace that comes from being enfolded in love and prayers.

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I need to know I am juggling all these needs appropriately. I had the opportunity to say good bye to Mom on Sunday. I'm grateful for that visit. I'm finding that I'm having difficulty being patient with Daughter. Little things she does all the time are suddenly very annoying. I know I need to be patient and provide comfort and reassurance, but there are times when it's hard. She has a cold, and is coughing some. It's not a severe cough, but yesterday she was telling me how her whole chest and back hurt every time she coughed. She made it sound like she was dying. I know that she's expressing her emotional pain through physical complaints, but I'm not feeling very sympathetic right now. Because she can't be trusted around insulin or medication, it's not practical for us to stay in Dad's apartment any more, which complicates our trip to Michigan.

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The majority of the congregation will be sympathetic and understanding, but there will be others who are going to complain and resent any time I spend away from here. I want to minimize the time I am away, and am having a difficult time figuring out what my needs are in all of this. I'm taking it one day at a time.

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I've arranged for someone to preach this Sunday. I'm going to get newsletter and some planning for Holy Week done today. Tomorrow is senior luncheon and Wednesday night supper and worship. I haven't made any decisions yet about whether I will stay for those things or not. I'm supposed to be making mashed potatoes for the senior luncheon, but haven't decided if I will be here for that or if I will ask someone else to do the mashed potatoes.

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Yesterday Mom was still alert and responsive. This could go on for a while, or she could die very quickly. I'm waiting for a report on how she's doing today. I'm taking it one day at a time. Today, I'm here. I don't know where I'll be tomorrow, but I do know that God will be with me wherever I am.

Hospice

Mom flunked the swallow test this morning. Since she said no feeding tube, we're going with hospice. I've been on the phone today, calling relatives. I'm going to try to get as much done as I can so that I will be free to leave. I've already arranged for someone to preach on Sunday. I'm very grateful for the time I had with Mom yesterday.

Twists and Turns

Sister called yesterday. Mom was slipping fast. She was on oxygen and minimally responsive. She woke up briefly and recognized Sister and Niece, and then she was sleeping again and couldn't be roused. After much internal debate, I decided to make a trip up to see her after church today. This morning's report was that they were going to use a tube to deliver meds, but not nutrition, to see if she would perk up to the point that they could do a barium swallow study. She has aspirant pneumonia.

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We left about 11:30, arriving at the hospital about 2:15. When I walked into the room, she was awake, and her face lit up in recognition before I could say anything. Then she started to cry. It was a very emotional visit. I hugged her. I cried. I tried to comfort her. She tried to comfort me. She never said a word, but we communicated. It was hard to leave. Sister could promise she'd see her tomorrow. I don't know that I will ever see her again.

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Or, she may rally, and I may say good by to her a dozen more times before she finally dies. Daughter couldn't stay in the room. It was too hard on her. I'm glad I went. Dad went up to see her yesterday, but it "tore him up," so I don't know that he will go again. It's just hard. I'm going to seek to get as much done as possible this week, in case I do have to go back for a memorial service....

Reflections on the Roller Coaster

Once you're on the roller coaster, there is no getting off until the roller coaster hits the station. Parents of children with Reactive Attachment Disorder are encouraged to stay in the station and allow their children to ride alone. I've mastered that pretty well. I'm not sure that's possible, though, when the roller coaster is the health of aging parents.

Roller coasters are beyond the rider's control, and if the roller coaster is health related, we can't see or predict the drops or turns that may be coming. It's like riding the roller coaster blindfolded. In my younger days (before I got smart and stopped going on roller coasters) I would sometimes get off the coaster with sore muscles. I'd hold onto that bar and try to force that car to go in a different direction, which was impossible, of course. It's much the same with aging parents. We can't change the direction of the car.

Yesterday Mom's car was on an easy straight away, and the journey forward looked easy. Sister went to visit her and was delighted to find her bright and chipper. They'd gotten her to stand up during PT. She told Sister no when Sister tried to roll her wheelchair back into her room. Sister had taken her down to the dining room and fed her, and she ate all her supper. They'd given her thickened liquids, and she drank all of them. Sister called us all quite pleased with the improvement she'd seen in Mom. She promised Dad that she would take him over to see Mom on Saturday.

I talked to Dad this morning, and he sounded great. He was pleased with the improvement Sister had seen in Mom and was looking forward to visiting her. Then Sister called. Mom is headed back to the hospital. This morning she has a temperature of 101, wasn't eating much, ans wasn't very responsive. The doctor suspects aspirant pneumonia. She's been taken to the hospital.

My Sisters and I have talked, and we have agreed that there will be no ventilator, no feeding tube, and we aren't even sure we'll allow them to transport her to the hospital again if she survives this one and is discharged. Mom was always very firm about no life support. She never feared death. She would not be happy with her current quality of life, and would not want us to approve heroic measures to continue it.

We think the roller coaster may be approaching the final station, but there also may be a number of unexpected dips and turns yet to come. Now we need to stop trying to steer the car and trust God to get us safely to the station, knowing that God's time is not our time.

We have been surprised by our grief, as we thought we had grieved when she lost the ability to communicate verbally. We also recognize that Dad will probably not live for long after she dies. We know that, and we are as ready as we can be. I continue to reflect on these issues as part of my Lenten reflections. It seems that Christ's journey towards Calvary and my own family's journey are parallel this year. My family family's journey is made much easier by the knowledge that Easter follows Good Friday.

Implementation

I go off and get inspired at conferences, and then I come home and get back into the daily grind, and the great ideas I had fall be the wayside. Once again this conference reminded me of how much I miss regular intellectual stimulation, and how much I miss the opportunity to worship without responsibilities for the worship.

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So today I purchased an ipod. I've located some podcasts by preachers I respect, and I've loaded them onto my new ipod. My plan is to walk while listening to intellectual stimulation/inspiration. It will be good for my body and soul. I hope that this time I will be able to follow through.

The Roller Coaster

I've often used the analogy of a roller coaster with families who are dealing with the chronic illness of a family member. A month ago we were holding on for a wild roller coaster ride with Dad. He is now doing well, and our ride with him is smooth and easy.

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Now we're on an even wilder ride with Mom. Less than a month ago, she was dancing at Brother's wedding. Then she had a seizure and developed a UTI. Monday she was discharged from the hospital to a nursing home for rehab. She was being seen by her doctor's associates, and they would have discharged her Friday if we hadn't insisted on PT and OT evaluations to see if she needed therapy before she went back to assisted living. They discovered she couldn't even stand up anymore, and a swallow test showed she was having difficulty swallowing, especially liquids.

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Tuesday morning, Doctor called Sister. Mom was refusing all food and water. He wanted to admit her to the hospital and insert a feeding tube. Mom has always told us she didn't want a feeding tube. He asked Sister to give him a chance to figure out what was wrong, and if the problem was temporary. Sister called me, unsure what to do. I suggested a compromise: a temporary feeding tube to give him a few days to figure things out. I spent the day fielding phone calls from family members and attending lectures and discussion groups. We were preparing for Mom to die in the next week or so.

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Today, she's doing better. Doctor switched her antibiotic. Her UTI was either coming back or had never gone away. They started an IV to get some fluids in her. She's eating some food for them. Doctor is giving her another day to see if she continues to improve. We have mixed feelings. We were surprised by how much grief we felt at the thought of her death. We thought we had grieved over the years as she lost the ability to communicate with us. While we are relieved that she's recovering, we're also concerned: How many more times will we be faced with difficult decisions? How much longer will she suffer? Far Away Sister and I talked about it today. We're not praying for her healing, we're praying for her peace and comfort.

The Conference

I arrived at the conference at my seminary today. I got here a little later than I had hoped, but in plenty of time for the first lecture. Daughter has called me 6 times. She's doing well, and I suspect that she won't have to trouble me as often tomorrow. At least I hope she won't.

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The lectures have all been wonderful. I've heard three today, plus worship, plus a panel discusssion. I haven't missed any of it. It has reminded me how much I miss being stimulated intellectually. In worship I sat there with tears rolling down my face. It has been almost 9 months since I attended worship where I could just sit in the pew.

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On the drive, I was having trouble staying awake. Since I got here, I've been wide awake. There are tons of old friends here. Why is it that after 20+ years men look pretty much the same and all the women look old? I've been reading lots of nametags today, and fortunately they gave us all big nametags. I'm feeling very old. The campus has changed so much that I didn't recognize it when I drove through the gates. There are lots of new buildings and old, familiar buildings have been totally remodeled and are now used for different purposes. They've renamed a number of the main buildings. I've actually had to ask for directions today.

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My closest friend and I are staying at a conference center on another campus about 1 mile away. We chose it because the rooms were cheap-- less than $90 a night with taxes. We don't have a room-- we have a suite, complete with a living room with a sofa bed (which K volunteered to use), a bedroom, two TVs, a refrigerator, and they even have complimentary mouthwash among the other little bottles in the bathroom.

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It's going to be very hard to head back to reality on Wednesday.

A Conversation

Daughter turned things around yesterday and was very helpful as I prepare to leave town in an hour or so. I was relieved. I think she saw how tired I am and recognized I need a break. She has healed a great deal, and she is capable of empathy now, which I celebrate.

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Yesterday evening we went to the store. She took advantage of that time to update me on one of her friends.

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"Do you remember my friend M?"

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"Yes."

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"Well, she's married, and now she's had her baby." (This young woman was not ready for marriage and a parenting, but that's another story).

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"She did?"
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"Yes, and she's healthy and she had a healthy baby."

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"That's good. Was it a boy or a girl?"

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"She didn't tell me."

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"She didn't tell you?" I was a bit surprised by this.

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"She refused to tell me."

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"Why would she refuse to tell you?"

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"I don't know. I'm going to have to email her and ask her why she won't tell me the baby's sex."

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"Hmm. Did she tell you the baby's name?"

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"Yes. The name is Elizabeth."

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This was a real conversation. She honestly didn't realize that a baby named Elizabeth would be a girl. What can I say? She does keep life interesting....

"Not Much Going On"

We had our board meeting today. At the end of these meetings, we always make a list of things that need to be communicated in the newsletter. Of course at the top of the list was Holy Week. Holy Week is the busiest week of the year for me. There are two extra worship services, and all the services have more people involved and more things happening than usual. After Holy Week, nothing else was listed. One of the women stated, "There's really not much going on next month."

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I think there's enough. I think there's more than enough. But then, what do I know.

And So It Begins

Today we went to town to run some errands, some of them connected to my departure and aides coming in to stay with her. It is now becoming real to her, and the acting out is beginning. She has come down to help me in the dining room several times, and quickly explodes and retreats to her bedroom. I have to give her credit-- she does keep trying.

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I've invited conversation about her concerns, but she's not able/willing to talk about them right now. It's something new, and even though she knows and likes the aides, she's scared. I have been seeking to reassure her, but she is beyond reassurance right now.

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She was convinced she almost had a seizure in the car while I was in the pharmacy.

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The phone calls I've had about the family drama are not helping. Now there is a great disagreement as to where Mom should go for rehab. We all want what's best for Mom, but you wouldn't think that by the way two of my siblings are talking about each other. Both are beyond reason at this point. I sent them an email asking that they refrain from taking their frustration with one another out on me. One hasn't received the email yet and the other is only communicating with me via text message and email, which is fine.

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Hopefully Daughter will be able to calm down enough that we can address her fears before I leave on Monday. There's just so much I need to get done between now and then....

In the Middle

The two siblings who live closest together are also the two who have always had the most trouble getting along. Both of them are under a great deal of stress right now without throwing our parents' troubles into the mix. Both of them are complaining to me. Both of them think I'm taking the other person's side.

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Dad is doing some better, which raises the issue of a long term plan for him. He can't continue to pay for live in help indefinitely. Mom is ready to be discharged from the hospital, but is so weak she isn't able to do anything for herself. She can't go back to the assisted living facility right now, and may never be able to go back there. Figuring out how to meet their needs is a challenge, especially when the two siblings who live closest to them aren't on speaking terms.

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I, of course, have no stress whatsoever in my life. I love hearing them yell at me about the other. Do you hear some sarcasm in those statements? Do you hear a great deal of sarcasm in those statements?

It's a Miracle!

The door alarm I had ordered for Daughter's room arrived yesterday. I set it up yesterday evening. This morning Daughter was up before her alarm clock went off. Her blood sugar was good. I'm sure it's just a coincidence. But I hope not.

Running Away

Monday morning I am running away. I'm going to a conference/reunion at my seminary. My closest friend and I will be sharing a room. We will have an opportunity to catch up with old classmates (and unfortunately, we're all getting old) and have intellectual stimulation from some top notch speakers. We will eat food prepared by others on dishes washed by others. I am looking forward to this break. I mean, I am really, really looking forward to this break. Unfortunately it will be a short break, as I will be coming back on Wednesday evening before the Lenten supper and worship. But it will be a break.

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There will be respite providers coming in to take care of Daughter. They will get to carry the keys to the insulin and medication. She won't rage for them. She'll be wonderful and cooperative. I'll pay for it when I get back, of course. But after a break, I should be better able to deal with her payback.

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Hopefully Mom and Dad will cooperate and stay alive until I get back. Did I mention I'm really looking forward to this break?

Learning

Occasionally, Daughter learns from her mistakes. Other times....
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A couple of weeks ago Daughter failed to bring the recycling bins in when she walked past them after getting off the bus. The wind blew them away, and the next day I spotted one of them about 100 yards out in the corn stubble in the field beyond the church parking lot. I made Daughter go retrieve it. The field was very muddy, and she had a real challenge cleaning off her boots following her excursion into it. I made some comment along the lines of this serving as a good reminder of why she should bring the recycling bins in right away.

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Yesterday morning, I heard the recycling truck go by, and within minutes, I heard the front door open and Daughter go outside to retrieve those bins. The wind was strong again yesterday, and she remembered her trip into the corn stubble, and didn't want to repeat it. I was pleased that she actually had made that connection, because too often she doesn't.

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Yesterday evening we were over at the church for supper and worship. A week ago she had helped clean up after the meal and then gone out of the basement door (so I wouldn't see her), and gone home. I had not been happy (especially since that was the day I had brought her home from the hospital following her premature dismissal). I told her she was not allowed to leave the church like that without checking with me first. Once again she stayed downstairs to help clean up after the supper. When she was done, she noisily made her way up the stairs, crossed the back of the prayer room where worship was, and disappeared into the office. For a brief moment, I hoped she was putting down the plates and her book bag and would come back in for the remainder of her worship service.

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When she didn't return, I hoped that I would go home and find her working on her chores. I am always optimistic. It's an occupational hazard. When I came home, I called her. She was upstairs watching unauthorized TV. I was not happy. She came down and told me she had left a note on my desk at the church telling me she was coming home. I told her to get to work. That prompted a rage. I was called names, given suggestions as to where I should go, and generally told how terrible I was until she went to bed. I had asked her to help me in the kitchen, but she refused, of course. So I cleaned up the mess from the items I had made for the church supper (as usual, I had been running late and hadn't had time before). I stood down there and bagged up items we'd bought at Sam's Club the previous day for the freezer. She finally stopped screaming and slamming things around and took her shower and went to bed.

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Next week, she will not be allowed to stay downstairs and help clean up after the supper. Next week, she will come upstairs for worship and be told she is not allowed to leave until I do. Next week I will take the remote control for the TV over to the church with me, so if she does ignore my rules, at least she won't be able to watch TV. She may not learn, but I do.

Thank You, Linda B

Linda B gave me the Dardos Award. It's my first blog award, and made my day. So here is what the Dardos Award is all about:

The Dardos Award is given in "recognition of cultural, ethical, literary, and personal values transmitted in the form of creative and original writing. These stamps were created with the intention of promoting fraternization between bloggers, a way of showing affection and gratitude for work that adds value to the Web.The rules:

1) Accept the award by posting it on your blog along with the name of the person that has granted the award and a link to his/her blog.

2) Pass the award to another five blogs that are worthy of this acknowledgment, remembering to contact each of them to let them know they have been selected for this award.

It was a challenge to come up with five blogs to pass the award to, because many of them I most enjoy have already been nominated. Here's my list:

1. Sarah's Recipes for a Post-Modern Planet. The recipes are always good and she is a great story teller.

2. Kari's Thoughts Preserved. In addition to a realistic look at the challenges, frustrations and joys of raising damaged kids, she also is a great source of information and ideas.

3. Cindy's Big Mama Hollers is another realistic look at life with troubled children. Her faith is an inspiration.

4. Munchkin Mom is a friend. She has a great sense of humor, which helps her survive her challenging children. The progress they have made in her home is amazing.

5. Busy Intersection Torina juggles work, school, challenging kids, and now major health issues. She does it all with a wonderful sense of humor. Of course, she's already been awarded this-- several times. She deserves it.

Hospitals

Dad called Brother and told him he was feeling lousy and thought he might need to go to the hospital. This was right after Brother got home with Sister-in-law, who has a badly sprained ankle, after spending all night in the ER with Mom. They still don't have a room for Mom, though they did manage to find her a bed so she's no longer on the gurney. Some people have been waiting in the ER for two days for a bed. There are three hospitals in this particular hospital system that are parents have visited. One has no power, so isn't accepting patients, and the other two both have no beds, and have closed their ER's. Brother suggested to Dad that he wait until tomorrow.

The Sisters got involved. Sister paged Doctor (again-- it was at least the 3rd page in less than 24 hours). He said to stop the diuretic, push fluids, and if he isn't feeling better in the morning take him to the doctor's office for possible admission. If he has to be in the hospital, we would like to have them in the same hospital. That is problematic, since there aren't any rooms for either one of them. Hopefully the fluids will help, and he'll feel better by morning. If he gets worse during the night, they will call 911 and the squad can figure out which hospital can take him. Aide is comfortable with this plan. Dad is comfortable with this plan.

Sister's 4 year old daughter (Niece) is sick. Her ex-husband is complaining that she is a hypochondriac (she has a temperature of 102) and telling Niece to stop lying about feeling bad. Of course, that sends Niece crying for Sister for comfort. (Sister didn't pick her up tonight, she went to the hospital to see Mom). Brother is complaining that Sister should forget about Niece and go to the hospital. Sister is in tears.

I've considered heading up there, but Daughter still is not stable. She is depressed and not doing well. She is also very concerned about her grandparents. Have I mentioned lately that I'm tired?

Pay Attention to Me!

One of the things I've noticed over my years of combining ministry and parenting is that when my family demands too much of my attention, the church acts out, and usually it's a staff member. This time its Secretary. I have been exhausted recently, so now every time I see her she tells me all about how tired she is and how little sleep she is getting. Sunday I heard how she didn't get any sleep Saturday night because her husband was up all night watching TV. Today it was because one of her foster sons was in the bathroom masturbating for 2 hours. (Just what we all wanted to know). I'm being very careful not to say anything about being tired around her, though I know it is very obvious that I am distracted.

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Brother ended up spending the night at the hospital in the ER with Mom. She's number 21 on a waiting list for a bed. She has a raging UTI, so they are giving her IV antibiotics. She seems to be improving, so they think the UTI was the source of all her problems. Sister-in-law stepped off the porch wrong this morning, and thinks she broke her ankle. Her stepfather took her to the ER, where she is waiting amid a huge backlog of patients for x-rays. She called Sister to tell her that she would have to go take care of Mom, because she needed Brother. We think she is something of a drama queen, and know she resents anytime that Brother spends with his family. This just seems to confirm our perceptions.

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I got a phone call this morning. One of the saints was transferred by ambulance from the hospital in Town to a hospital in Big City after a possible heart attack. The latest report is that Big City hospital thinks she just has pneumonia, and she hasn't had a heart attack. For now, I'm not going over there. She's still in the ER, her family is with her, and Daughter has an appointment with Therapist this afternoon that we need to keep.

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Nurse from the workshop called. She is concerned because Daughter seems very lethargic. She wondered if there had been any med changes. This just seems to confirm my impression that she is deeply depressed right now. We see Therapist this afternoon. I've decided I definitely am not going to go deal with Mom. I need to stay here and keep Daughter in her routine. She is too fragile right now for me to do anything else.

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Four Days

Dad and Daughter got out of the hospital last Wednesday. Mom was admitted last night (sort of-- she's in the ER waiting for a bed). The family went four whole days with nobody in the hospitals. I was on the phone with my sisters when Sister got a call on her home line from Dad's live-in aide. He was having GI trouble. We directed Aide to the imodium and told her to give him lots of water. We don't want him back in with dehydration.

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The nursing home transferred Mom to the hospital last night because she was in pain. She had fallen earlier in the day when she tried to get up from a chair without help. She still wasn't making any effort to feed herself. So far we know she has a massive UTI, and they have started IV antibiotics for that. Her doctor also wants to do a CT scan to check for strokes.

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We decided not to tell Dad last night. We'll have to let him know today, but we knew he would be awake all night worrying if we said anything last night. He's been laying awake and night worrying about a variety of little things, so we decided not to give him a big thing to worry about.

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Daughter overheard the phone conversation, so she knows. She doesn't seem to be too concerned. Once again I find myself going over my schedule and wondering whether I should head to the hospital. For now, I'm staying here.

Slip Sliding Away

The old Paul Simon song has been running through my had the past couple of days. I've been thinking of it in terms of both of my parents. Dad is home from the hospital with his live-in Aide. He is having more trouble with confusion. He told Far Away Sister that the time change really messed him up because he lost 3 hours in it. She told him that was interesting, she'd only lost one where she was. He insisted he'd lost three.

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He called me the other day, wanting to know how to treat a low blood sugar because he couldn't figure it out. With Aide's help, he'd already done what was necessary. He's been dealing with diabetes for almost 35 years, so he knows how to deal with lows, but that day he sure was lost. He doesn't have any use of his right hand, probably because of a stroke. That means he can't get on the computer. We are attributing the confusion to lack of oxygen to the brain as his congestive heart failure progresses.

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Mom has been very lethargic and is tilted towards the right. She won't even try to feed herself right now, and she is completely incontinent. It took Sister and Aide to get her in and out of the car for a doctor's appointment on Friday. The doctor thought maybe her depakote level was too high. She started on depakote after she had the grand mal seizure the morning after Brother's wedding. She's been off the depakote for a few days, but seems to be getting worse, not better. She also has a UTI. If she doesn't improve after treatment for that, the doctor wants another CT scan to see if she's had another stroke.

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I haven't been calling Dad quite as often. I'm so exhausted from dealing with Daughter that there are days I just can't deal with him and his confusion. Psychiatrist thinks Daughter likes being hospitalized because of the attention it gets her. She was amazed by how depressed Daughter seemed today, as that wasn't what she'd seen in the hospital. She thinks she needs more stimulation. Therapist and I are meeting with the workshop people on Wednesday to discuss this need. The reality is, we need to move to a more metropolitan area where there will be more opportunities for Daughter. The economy is not making a move easy.

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Sometimes, as I deal with all the needs around me, I feel like I'm slip sliding away, too.

Is It Safe?

This morning Daughter woke up with her best fasting blood sugar in months, maybe even years: 98. She was up with her alarm, and was completely dressed before I rolled out of bed. After the moment of shock at her blood sugar, she became concerned: "Is it safe to have a 98 in the morning?"

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I assured her it was safe and healthy. I believe she has now gone 2 nights without getting up to eat during the night. Now I just need to work on figuring out her insulin to carb ratio so we can get her numbers during the day into line.

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I will pick her up at noon today to take her to see Psychiatrist. I haven't decided what, if anything, I'm going to say to Psychiatrist about her discharge. I'm not happy with the way her diabetes was handled during her recent hospitalization or the way her discharge was handled, but I am pleased with where she is today.

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Over all, I have been very pleased with Psychiatrist, and it has been a huge challenge finding competent psychiatrists to deal with Daughter. I don't want to complain so much she dumps Daughter as a patient.

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I guess I'm asking the question I'm asking is similar to Daughter's: "Is it safe to continue with Psychiatrist?" I find myself coming back to one answer: "It's much safer than any of the alternatives I've explored."

Concerts with Daughter

About 4 times a year, Daughter and I go to a concert. We both enjoy a variety of styles of music, and these concerts are a real treat. We had one last night. At intermission, I realized that Daughter has one script for concerts. She pulls it out for every one we attend. It goes something like this. It starts early the day of the concert.

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"I'm not going." Now sometimes there are variations on this theme. She may say she doesn't deserve to go. She may claim she doesn't like that kind of music. But at some point, she informs me she's not going to go. Sometimes I ignore her. Sometimes I say simply, "You're going."

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We get to the concert, and she pouts, at least until the music begins. When the music begins, she gets a big smile on her face and tells me I was right.

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At intermission, she always says, "We need to go home now."

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I always tell her we're staying. She then dramatically checks her blood sugar (which is always fine, eliminating that as a reason to leave early.) Then she puts her head on my shoulder, to show me how tired she is. Actually, it's an attempt to control my movements. She leans hard, and if I move to much will wrap her arms around my arm to hold it in place.

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When the second half begins, she continues to pout and let me know how tired she is, except I will generally feel her foot tapping or some other positive response to the music. Last night the concert was so good she actually sat up and became engaged in the second half of the concert. It was rather amusing. As the concert winds down, she always informs me it's time to leave. She never wants to stay for the encore. We always stay for the encore.

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Last night, as the concert approached the end, we could hear a thunderstorm outside. Because basketball tournament games were going on at the same place, we had had to park a very long way from the door. She helpfully pointed out to me that it was raining, we didn't have umbrellas, and that the car was a long walk from the door. I didn't know any of these things, of course.

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Fortunately, by the time we left, it wasn't raining quite so hard. This morning is the final act of her concert script. She's refusing to get up, because she's too tired from the concert I forced her to attend.

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We both enjoyed the concert, and I'm glad we went. If I'm feeling brave, I think for the next concert I will remind her of her lines, so she won't forget any of them. I'll have to be feeling brave, though, because that could be dangerous.

Blood Sugars, Sigh

Daughter's blood sugars were running high in the hospital, and I complained that they were dangerous and they weren't giving her enough insulin. Now she's home, and I'm controlling her insulin, and her blood sugars are even higher. I increased her Lantus, which is her long acting insulin she takes once a day. Her blood sugars are still high. Today I asked her what she'd been into overnight.

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"Nothing!"

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"Your blood sugars have been running high, and if you haven't been into anything, I should really increase your Lantus. If you have been into something, that could be very dangerous. Should I increase your Lantus?"

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"Wait."

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"I ordered a door alarm for your bedroom, and it will arrive Wednesday. Once I put that on your door, are your blood sugars going to be lower in the morning?"

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"Yes."

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"What have you been into?"

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"Nothing!"

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"You just told me your blood sugars will be lower with the door alarm. Why will they been lower? Have you been into milk during the night."

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"Yes."

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"Thank you for telling me the truth."

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This just gets so frustrating. She wants more independence, but I feel like I should keep her in my line of vision 24 hours a day if I want to keep her safe. I received no discharge instructions for her, but she says Psychiatrist told her she could go back to controlling her own insulin, but she told Psychiatrist she didn't want to.

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I hate this disease!

Accomplishments of the Day

Today I'm celebrating two relatively minor accomplishments that feel major:

1. After 4 hours on the phone with technical support, my blackberry and computer are back on speaking terms. Now I can be confident that both calendars are up to date and I can safely schedule appointments and meetings.

2. Daughter wrote me a letter of apology. She's also done some work around the house today. She commented on the fact that she was doing better and beginning to climb out.

I still have to write a sermon, of course, but that will come.

Lost Routine

Daughter needs a release to return to the workshop, so yesterday I called Psychiatrist's office seeking one. The nurse told me she'd talk to Psychiatrist, and call me if she couldn't fax one over. I was all set to to send Daughter back to the workshop today. We both need a return to our routine and some distance from one another.

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Last night, Daughter suddenly decided she wasn't ready to return, and wanted to wait until Monday. She called and cancelled the bus for today. So this morning I got a call from the nurse from Psychiatrist's office. She hasn't faxed anything over and thought it would be best if I just waited until we see Psychiatrist on Monday. I guess it's a good thing Daughter decided not to go today. I told her I wanted Daughter to go for a half day on Monday, then I would pick her up and bring her to the appointment. She said she understood, and she'd talk to Psychiatrist about it and fax something over. She promised she'd call if she couldn't do that. Of course, she promised that yesterday, too.

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Now that I am in control of the insulin, Daughter's blood sugars are all running very high. She swears she hasn't been into any extra food. Of course, she also swore she wasn't taking any extra insulin. Life is challenging at the moment, and I am worn out. It doesn't help that it is a gray day and that after 3 hours on tech support yesterday my blackberry and computer still aren't on speaking terms. Daughter still hasn't apologized. I guess she wants to swim in b--- s--- a while longer.

Technology

For a couple of months my blackberry pearl and my computer have not been on speaking terms. It has been frustrating, to say the least. I also have had trouble getting the blackberry to charge. Monday, while I was in City to get stuff for the church supper last night, I went into the Verizon store. They decided one of the pins in the port was broken, and ordered me a replacement phone, which arrived yesterday. I ordered a bluetooth usb thingie in hopes that I could then sync via bluetooth and have all the data to transfer to the new phone.

I played with it some yesterday, and got frustrated. So today I broke down and called technical support. Three hours and three people later (they kept bumping me up to the next level when the problem was beyond them), I got disconnected. I called back and gave them my ticket number. Someone was supposed to call me back. It hasn't happened. What's worse, I fear that some of the dates I had in my blackberry are forever lost. We backed them up before deleting them, but I can't restore them. Worst of all, the problem seems to be in the calendar in outlook, so the new blackberry won't be able to sync either, and I won't be able to transfer all my dates over to the new one. I'll be out in the world lost without a calendar. A frightening prospect, to say the least.

Technology is wonderful when it works, but then a problem like this develops and I wonder why I ever abandoned my old daytimer system in favor of an electronic organizer.

As you have probably figured out, Daughter is calmer, though sluggish. While I was on the phone for 3 hours, she was sitting across from me folding bulletins. It took her over 3 hours to fold and put inserts in 100 bulletins. That's quite an accomplishment. I don't know why she is so sluggish, they didn't change any of her medications while she was in the hospital.

Therapist

This morning Daughter and I went to see Therapist. When Daughter came in, she drew an amazing picture of what she had learned. She is buried deep in a box filled with b--- s---. She got herself in it by lying and trying to hurt herself. She keeps herself in it with angry words and saying things like "I don't care." It is her fault that she is in the box. She made the choices, and I had nothing to do with it. Guilt keeps pulling her back down.

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To get out, she needs to offer me a genuine apology. That's going to be hard. She feels guilty because she took insulin all those times and caused me to worry and think it was my fault. I haven't done anything wrong. When she decides to come out, she can begin climbing a ladder to get back into the light. She knows she needs to apologize to the family, as well, because her actions have hurt many people.

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Hopefully, she will be ready to offer me that apology soon. She's going to write it, because that is easier than saying it to me. For it be genuine, she needs to acknowledge how she has hurt me. She also needs to show me that she is sorry by her actions.

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All of this came from Daughter. Therapist just asked questions and encouraged. After she finished her picture, she came and knelt in front of my and hugged me for a very long time. She just went upstairs, and hopefully that was for the purpose of writing me that letter of apology. Tomorrow I will send her back to the workshop.

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Therapist and I are going to sit down with Daughter's team at the workshop again to go over the importance of structuring her time. Therapist called Case Manager while I was there, but Case Manager has not gotten back to us. We think the workshop is worried right now.

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I'm still tired. Perpetually tired. No amount of sleep is enough right now. But in the midst of the struggles of Lent, there is always the promise of Easter. That promise will keep me going.

Warning: Rant Ahead

Yesterday evening when I visited Daughter, I explained to her that I would be tied up this afternoon and evening, and so wouldn't be able to visit her. I told her to call me today and tell me how she was doing. So this afternoon about 2:00, I was standing in the kitchen putting some garlic spread I had just made on bread for the supper tonight. I decided to call and ask Daughter's nurse how her blood sugars were and if they had changed the order on her insulin.

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So I called. Her blood sugar was 203 before lunch and they hadn't made any changes, but it didn't matter because she was being discharged today. And when were you planning to tell me this? In retrospect, I should have refused to go get her. But I didn't. I scrambled, and got someone to come over and put the lasagna in the church ovens. I ran over to the church and turned on the ovens to preheat.

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Daughter is home. She wants to go back to the hospital. She wants to die. It is my fault she wants to die. I need to grow up. It's none of my business if she takes extra insulin. People with diabetes shouldn't have parents.

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The insulin is in a locked box in the refrigerator. I've already misplaced the key once.

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Oh, and all those times I went crazy with worry and listened to the doctor yell at me because she was low and I couldn't get her blood sugar up? Those were all the result of her sneaking extra insulin. And how much insulin did she take on Friday? 60 units of novolog before lunch and another 60 units after lunch. She's lucky to be alive. Normally her total insulin in a day is less than 40 units.

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I have talked to Therapist twice today. We will be seeing her at 10:00 tomorrow morning. I'm not sure when I'll let her go back to the workshop. Of course, I desperately need a break from her, but I just don't think it's safe to let her go there while they don't understand the need to provide her with structure. Allowing her to sit around and worry is destructive. Of course, that means I'll have to figure out how to structure her time.

Fighting After All

So I originally said I wasn't going to fight about Daughter's diabetes management. That all changed tonight. The first night, the nurse had told me she'd leave a note for the doctor to get her insulin right, but that never happened. She's had one blood sugar in the 170's, all the rest have been over 180. The goal is to have them under 120, and anything over about 240 is dangerous, and can lead to Diabetic Ketoacidosis, which can be deadly. Before supper tonight, her blood sugar was 342.

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Daughter was crying as she leaned into me and told me she wasn't safe there and I needed to get her out right away. She told me how tired she is and how she can't stay awake because her blood sugars are so high. We didn't play cards tonight. We did sit down and talk to her nurse, and I pointed out how dangerously high her blood sugars are, and again gave them her normal insulin scale. I explained that she can't figure out her meals without guidance, and she needs help counting carbs. I explained that she doesn't feel safe.

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Tonight I was there for about an hour, and the majority of the time was spent comforting Daughter as she leaned against me and cried. I will not be able to go visit her tomorrow night, which concerns me. She told me she may be able to come home tomorrow or Thursday. Tonight I would have said she's nowhere close to ready. The nurse didn't think Psychiatrist has made any changes in her medication. Her night meds are all the same.

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I told Daughter today that there would be an investigation at the workshop, which upset her. Therapist encouraged me to tell her before she comes home, so I did. I will be very surprised if she is discharged tomorrow. Knowing my luck, they will discharge her in the evening, when I'm tied up with a supper and worship service at the church.

An Investigation

I was sitting in my recliner, finalizing this morning's funeral service, when the phone rang. It was Daughter's Case Manager (CM) from the workshop. She had heard that Daughter was in the hospital and wanted to talk to me. I put her off until after the funeral, but in our brief conversation she told me that there would need to be an investigation into Daughter's insulin overdose, since she did it at the workshop (with an insulin pen she wasn't supposed to have at the workshop).

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I had to pause and pray and ask a colleague for prayers so I could put all of that out of my mind until after the funeral. The funeral went well, and I have spent time this afternoon on the phone. The insurance company has given authorization for Daughter to remain in the hospital through Friday. CM now knows the whole sordid tale. There will be an investigation, and law enforcement will be notified as well.

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Here's my issue with all of this. I knew Daughter was taking an insulin pen to the workshop, and I knew she wasn't supposed to carry one with her. I have often felt like the workshop and I are working at cross purposes. I'm encouraging her to take responsibility for her own health, they're telling her she's complicated and doesn't understand her own disease. I'm encouraging her to keep going even when she doesn't feel good, they're allowing her to stop work anytime she wants to for whatever reason. I'm telling that diabetes is her disease and her diabetes care is a normal part of her day and nothing to hide or be ashamed of, and they are telling her that she can't keep her meter with her and that she can't test unless there is a supervisor standing over her to make sure she's doing it right.

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When she was in school, she carried all of her supplies with her at all times, and tested and took insulin wherever and whenever she needed to. When she got to the workshop they told her that was too dangerous and her disease was too complicated for her to treat on her own. Her doctor and I tell her it's her disease and she needs to speak up for herself and let people know when they're doing something wrong, they tell her to shut up because she doesn't know what she's talking about.

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I think you're beginning to see the pattern. Psychiatrist told me to move her to a different workshop. Here in rural America, we're lucky to have a program that's only 12 miles away. There are no other options for her.

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An investigation will reveal that I knew she was breaking the rules, and didn't stop her. CM tried to play it down, but I'm not looking forward to it. I guess the thing that bothers me most is that Daughter has proved them right. She can't be trusted to manage her own disease. Our whole life is going to change, because I will have to lock up all her insulin and all of our medications. I'm going to be wearing keys around my neck. I'm no longer going to be able to put the responsibility on her. I'm going to have to dial up every insulin dose and either inject it myself or watch her inject it. I'm going to have to personally give her the proper pills, instead of checking the pill box to make sure she's taken them. Every step we had taken toward helping her be responsible and independent has been erased by one shot.

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Every hope I had of someday having more freedom has vanished. When I talked to Therapist about the whole situation on Saturday, Therapist talked about how challenging this would make it to find an alternative living situation for her. I had plans to go to a conference March 16-18. I had arranged respite for Daughter. I find myself wondering if it's a good idea to go now. I don't have any answers. I do have lots of questions. I do know my life has become much more complicated. I do know that I am not looking forward to the investigation.

How Did that Work for You?

That was the question Psychiatrist asked Daughter today when Daughter told her that she took the insulin because it was stressed. Daughter admitted that it hadn't worked. Daughter said Psychiatrist wasn't happy with her. She told her she needed to stay a few days and figure out other ways to deal with her stress. I like Psychiatrist. Apparently she didn't do any with medication. I'm glad. Daughter is on plenty of medication right now, and I'd prefer not to add anything else.

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I went over and visited tonight, even though I hadn't planned to. When she called this afternoon she was crying. She told me how much she wanted to come home, and she was crying. So I decided I needed to go visit her. She was depressed. We played a short card game and then she wanted to get in the shower-- and it wasn't even 7:00 yet.

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I think I'm getting a sore throat. I wonder if it has something to do with stress....

Oops!

I had decided that Dad didn't need to know that Daughter was back in the hospital. He always worries when she's in, and I decided he didn't need to worry. I was limiting my calls to him so he wouldn't figure out something was wrong and press me for information.

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Today the reports were that he was in good shape and good spirits. He was less confused and more upbeat. The neurologist had been in, and thinks his problem with his right arm is definitely due to a stroke. He's ordered a CT scan (MRI's are out because he has a pacemaker).

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So I called him, and as I was talking to him Cat was being an obnoxious brat. Both Cat and Kitten have been very demanding the past couple of days. They really miss Daughter. I said something about Cat being demanding because he missed Daughter. The reports were right, he's very with it today. He jumped all over that. "Where's Daughter?"

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I assured him she just needed a minor tune-up in her meds and I expected her home soon. He wanted to know what hospital she was in. I found myself tongue-tied, and after a few words that I hope were somewhat reassuring, I ended the call. I did tell him I hadn't intended to tell him because I didn't want him to worry. I knew it was dangerous to call him. I knew it would end up slipping out. But I also knew that to not call would raise even more questions.

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So much for trying to protect him....

Too Many Times

I was trying to count Daughter's hospitalizations today. I couldn't. I went over to see her after I met with the family about the funeral I have on Tuesday. Her nurse told me I couldn't pull her out of group. I didn't pull her out of group, the aide went and got her. I didn't know she was in group. I had a very short visit with her, as she was required to go to the dining room for her supper. I'm not happy with the way they are managing her diabetes. They aren't giving her enough insulin, they aren't helping her figure out her meals, and they are giving her her fast acting insulin too long before she eats. There was a time when I would have been all over them about it. But I decided it's not worth fighting. She'll only be there a few days, and I'm not going to get all uptight about it.

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I told her I may not go over tomorrow. I have to plan the funeral tomorrow. It's supposed to be my day off, but once again, I will be working. She seemed depressed when I was there, which has me thinking that I should go over tomorrow.

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I bought a lock box today that I can keep in the refrigerator for her insulin. I'm going to clean out a drawer in a filing cabinet for the other medications. I'll have to keep the keys on me at all times. I'm hoping it will be Thursday before I bring her home. The first part of the week is going to be very busy.

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I don't know at what point these hospitalizations ceased to be something to worry about. I just know that they aren't as hard as they once were. They still wear me out, and I still end up eating junk food and too much chocolate when she's in, but I sleep at nights now, and I don't call to check up on her as often.

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I will be interested to see what Psychiatrist does when she sees Daughter tomorrow. The one who is on call this weekend told her he wasn't going to change any of her medications, he'd leave that for Psychiatrist.

Sunday Morning

I got over to the church a little later than normal this morning. I was making the rounds greeting people and making note of prayer requests when C walked in. She was going to play piano for the Wednesday night Lenten service this week. "I'm not going to be here Wednesday and neither is 3/4ths of the congregation. There's a tournament game. There's no one to play piano." I was in the process of recording the name of a seriously ill daughter-in-law, and dealing with the pieces of broken clay that were to be distributed during worship this morning.

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I looked at her and just said, "I can't deal with that right now." She vanished. After worship she had found someone to play, for which I am grateful. There are always those in the church who don't think the pastor should ever have personal troubles. We are supposed to be available and in top form 24/7. They resent it when family concerns divide our attention. It took several calls to find someone who would ride with me to the hospital on Friday. They had tickets for the high school basketball game, and couldn't miss that. There are times when I feel like I need to apologize for being human.

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I'm going to put my feet up for a few minutes, and then I'm meeting with the family to plan the funeral at 2:30 this afternoon. They are in the direction of the hospital, so I'll head over there after I see them. It will be a brief visit. Daughter was more subdued last night when I was there. In spite of my careful planning, there was miscommunication and I had to go to both hospitals and got there just as they were transferring her. I left the suitcase with her clothes at the psych hospital and visited with her briefly at the medical one. Apparently after I raised concerns about the male sitter, they switched and got a female one to sit with her. She wasn't left unsupervised at all.

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I gave her a hug, and she held on. I think she's beginning to recognize the implications of what she did. At least I hope so. I'll stop and see her today, but tomorrow I will stay away. I need to prepare the funeral and figure out Wednesday night and Sunday morning.

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Now I'm going to go put my feet up. If I'm lucky, I'll fall asleep for at least a few minutes.