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....