Wednesday, September 30, 2009

Empty Time

We have arrived at our motel, a Re.sidence In.n. It's much nicer than where we usually stay, and it's nice to have a kitchen. What's strange is the empty time we have now. Normally we'd be visiting with Dad right now, so it's weird to be here in in the motel without much to do. In half an hour there will be food downstairs, and we'll go down and get some supper.
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It was a long drive up. I had to stop a couple of times to use a restroom, and we hit a major traffic back-up that had traffic down from three lanes to the shoulder around an accident. We met with the pastor, and things are set for the memorial service Saturday morning.
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Far Away Sister and her family arrive tomorrow (on two separate flights). They are staying at this motel, which is why I decided to come here. I wanted to be close to family. We have to clean out Dad's apartment. Sister won't commit to a time until she can get an appointment to get her hair done. That's fine. I reminded her that Sunday, everyone leaves and she and Brother will have to deal with it on their own.
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For now, it feels weird to be here and not be with family. I'm not accustomed to having empty time when I'm here.

Sleeping In

I didn't wake up until 8:00 this morning. I don't remember the last time I slept that late. Of course, I also don't remember the last time I was this tired, either. I don't ache as much as I did when I went to bed, which is good. We also have a ton of stuff to do and a tight schedule this morning. We're supposed to meet with the minister at 2:00, which means we have to be on the road by 11:00 at the latest. I'm going to wake up Daughter, and then I'm going to get busy. The computer will be among the first things packed away.
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Thank you all for your prayers and support. We're doing well during a difficult time.

Tuesday, September 29, 2009

Coping


Daughter decided to go to the workshop today. I saw here case manager this evening, and she said she did well. In spite of it all, she is coping better this time than she did with Mom's death in June. I'm sure she'll have her moments, but she didn't complain about the fact that I was going to be gone this evening.


I got over to the church this morning and Secretary took charge. She started making phone calls to arrange things. Of course, after her first phone call, I think most of the county knew within 10 minutes. People are volunteering to help lead worship on Sunday. I have responsibilities at the senior luncheon tomorrow, and I had 3 people call to see if they could do the work for me.


I've had a few tough moments today. I went on facebook, and Brother had posted the picture above of Dad with the announcement of his death. Somehow, that made it real. Dad was a good cook, and as I was finishing the barbecue beef this afternoon, I thought about how many times I had called Dad to consult about a cooking project. When he knew I was preparing food for a group, he'd keep tabs on what I was doing and anxiously awaited a report on how the event had gone.


When I sat down this afternoon, I realized how exhausted I was. I rallied and went to a lecture/concert, and am glad I did. I am going to miss Dad, and the next few days will be tough. I'm grateful I've had him for over 51 years, and for all that he taught me in that time.

9-29-09

About 5:30 this morning I woke up, as I had done often throughout the night. I prayed for Dad's peace, and that he would be able to let go. At 6:00 Sister called to tell me that Dad had died peacefully at 5:30 this morning. I have much to do, and my mind is racing with what I need to accomplish before I leave. I think I'm going to leave Wednesday afternoon instead of Thursday now. I want to be here for the senior luncheon tomorrow, but I think that after that I'll head out. Far Away Sister and her family will arrive about 7:00 Thursday evening. They were going to have to buy their tickets or cancel their reservations today.
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There is much for which I'm grateful. Sister began speaking to me yesterday. Brother and Sister had both recognized that he was dying, and both were able to spend time with him. I'm also grateful that it is over.
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This has been a hard year, starting with the discovery of the Unauthorized Borrower at the end of January. Mom's decline began the day after Brother's wedding in February. We put her on hospice in March or April, and she died June 9. We had Dad to the ER the night of her memorial service. Now the healing will continue. I have to wake up Daughter soon, and I suspect she'll decide she wants to stay home with me today. I'll be busy trying to get things done, but maybe I can find some things that will keep her occupied.
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For now, I'm grateful. I'm grateful that he lived 80 years, and we were able to celebrate his 80th birthday. I'm grateful that Dad is at peace. I'm grateful that he and Mom are together again. I'm grateful that the time of waiting is over.

Monday, September 28, 2009

One Last Thought for the Day

Doctor told hospice that Dad has very little time left, so they moved him to the hospice inpatient unit. If he survives a few days, they'll send him back to the nursing home. Sister actually called me this afternoon, and we had a long conversation, with no mention of the frustrations. A text a few minutes ago said his blood pressure is low. Sister took today off and is going to take tomorrow off, too. She's done avoiding, and just wants to be present with Dad while she still can. I'm glad she's come to this point, as it will make it easier to deal with his death without lots of guilt and regrets.
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I've contacted relatives to update them. I've made a reservation for a motel beginning Thursday night. Now, we wait. The waiting is hard.

Timing

Far Away Sister and I understand why Sister and Brother have been so hesitant about hospice. They are unlikely to ever understand why we have been so supportive of it. This delay until ultimately Doctor recommended it means there will not be a wedge between us because they think we killed Dad. We are angry, but we can direct our anger at Doctor, so there will not be a wedge between us from our anger. As much as the timing has frustrated us, it may, eventually, enable us to continue as a supportive family without wedges between us.
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Dad has not been lucid since his visitors this morning. The paperwork has been completed to put Dad on hospice. According to Brother, he will stay in the hospital until he is stable and then go back to the nursing home. Of course, Far Away Sister and I are unclear how a dying man can suddenly become stable enough to move.
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Now, we will trust in God's timing, and hope that God agrees with us that the best time is soon.

Conflicted

Sister is speaking to me again. I admit it was a 3 way call that occurred when Far Away Sister and I were talking and she called Far Away Sister, who linked us all. Dad had a restless night, pulling out his catheter. The nurse asked him if it hurt, and he said, "It hurt like hell!" He knew Sister and Pastor and a friend who were in this morning. Sister is now struggling, because how can we put him on hospice if he is coherent. Far Away Sister reminded her that he chose hospice once before when he was coherent, and if he understood there wasn't anything else to do for him medically, he'd be fine with going on hospice. I showed great restraint and didn't point out that he'd chosen it two times already. I did point out, however, that the only reason he didn't want hospice was because Doctor told him he could help him more than hospice, and if he knew Doctor said he should go on hospice, he'd do it.
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Sister is waiting for the hospice consult today. Far Away Sister is going to call his nursing home to check on some things. Hopefully he'll get back there today.
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Daughter clogged the toilet again yesterday. I was pondering the fact that everyone else in the family experience diarrhea under stress, and Daughter gets constipated. I told her she's going to be taking Miralax every night for a while. She didn't object.
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Saturday morning I was very angry. Daughter heard me slamming cupboard doors in the kitchen and came running downstairs. I told her to go away, it had nothing to do with her, but I didn't want her near me. She went for a walk, and came back with a friend for me to talk to. She was very concerned for me. Saturday night she asked me if she'd done the right thing. I was impressed with her compassion for me in my pain. She continues to struggle and at times act out inappropriately, but she also has moments of deep insight and compassion. Right now she's saying she's not going to the memorial service. Tonight she may ask if she can sing a solo at it. We're all conflicted right now.

Sunday, September 27, 2009

Purifying My Heart

We are all being hit hard by grief right now. Mom died June 9, and we hadn't finished grieving her when it became apparent that Dad's life was winding down. It's magnifying our grief right now. Among the stages of grief are denial and anger. The stages aren't necessarily sequential, but rather, we jump around among them.
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Brother and Sister are both struggling with denial. Far Away Sister and I are angry. We are also frustrated by our distance which makes it hard to do much to help Dad. Sister is in denial, so she is latching on to Doctor's words. Doctor always told her he'd let her know when it was time for hospice. What he didn't tell her was that he didn't believe in hospice. So she trusts him, and believes his assertion that it isn't time over everyone else telling her it is time.
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Doctor, and to some degree, Sister, are the target of the anger that is part of my grief. I am not in denial, and I don't want her to be in denial. The fact that she is there and is his patient representative with the responsibility of arranging his care makes it even harder. To maintain her denial, she's been avoiding doing the things that need to be done to provide the care Dad needs. That feeds my anger, of course, as I feel that Dad's needs are being neglected and it is Sister's fault.
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Today's sermon was about prayer, and one of the commentaries I read this week talked about prayer drawing the toxins out of us when we pray for the people with whom we are angry. I wasn't ready to do that yesterday, I wanted to stay in my anger. The only person the anger was hurting was me. It truly was toxic for me. So I finally prayed and allowed God to draw out the toxins. I shared some of my struggle with the congregation.
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I still grieve the reality that Dad didn't get hospice care in a timely manner. I'm sure he would have benefited from it. Now, though, it's time to move beyond what can't be changed and move into the future. We hope that the end will come quickly. Far Away Sister hopes it comes before bedtime. She thinks that none of us will sleep well tonight, if we're waiting for the call. She's probably right.

Insight

Doctor told Sister today that if Dad hadn't improved by tomorrow, he'd put him on hospice. Far Away Sister and I interpret that to mean, "If he's still alive tomorrow...." He's weaker and more confused. Drifting in and out of consciousness. Doctor said something about how he wouldn't know anyway. Hospice will be a great help to Dad in his current state, I am sure. Sister still isn't speaking to me, but I am less angry. I have some insight into why I've been so frustrated. This afternoon we have a youth group outing, and when I get home from that, I will post more about my insights and how I am moving beyond my anger-- at least part of the time.
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If things go as we expect, the memorial service will be next Saturday. I will head up there on Thursday, and come back on Sunday. The congregation will have a hymn sing next Sunday, and we will celebrate world communion Sunday a week late. Far Away Sister is looking at airline reservations now. I'm going to plan to get a room at the same motel they are staying in. It will make things easier, and will be less lonely. At least, that's my hope....

Saturday, September 26, 2009

Trying not to Care

Sister has stopped taking her antidepressant. It explains much. She now claims she never hung up on me. I just wrote her several notes I'll probably live to regret.
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I'm not sleeping well at night. Dad wouldn't let the nurse turn off the light in his room last night. He's not getting the care he needs. I fear I'm always going to be the evil sister who tried to kill Dad by getting him on hospice.
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I'm trying not to care, but I do care, and the whole situation is breaking my heart. He'll be dead soon, with or without hospice. It shouldn't matter, but it does. After 24 years of seeing all the good hospice can do, my own sister doesn't trust that maybe I want what's best for Dad.

Friday, September 25, 2009

When Did Hospice Become Evil?

So Sister has spoken with Doctor about Dad. He said Dad's body is breaking down, but since his mind is still sharp we can't put him on hospice. We can't just tell him, "Go home and die." That has never been my understanding of hospice. My understanding of hospice has always been that it was about focusing on quality of life and providing spiritual, emotional, and physical comfort during the dying process. I guess because Dad's mind is still sharp, he doesn't need any of those things.
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Sister still isn't speaking to me. It seems that if we don't put Dad on hospice, he won't die. I will be very surprised if he lives through this hospitalization. I don't want to even think about what his death will do to Sister.

They Don't Get It

Yesterday evening I got a message from Brother. He had been visiting Dad and talking about an event coming up at the end of October. Dad thought it sounded like fun so Brother told him he'd take him. He hoped it wouldn't do him too much harm to eat unhealthy food there. He then posted on his facebook page that Dad had chosen the event over hospice.
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A couple of hours ago Far Away Sister got a phone call from Administrator at Dad's home. Dad couldn't stay awake, he had two more bed sores, his body is breaking down, and he'd have to go to the hospital since he wasn't on hospice. He couldn't stay awake while she checked his blood pressure.
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Brother was on his way to visit Dad, so Far Away Sister called him to tell him what was happening. He's in the hospital ER with Dad now. He said Dad was feeling okay but couldn't catch his breath. The ER doctor said they'd get a cardiologist in to see him and try to get some of the fluid off of him. They've been trying to get the fluid off of him for over a month. Brother and Sister seem to think he'll get out of the hospital feeling better. Far Away Sister and I are looking at travel plans for a memorial service next weekend.
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I want Dad's suffering to end, and I am concerned that Dad's death will hit Brother and Sister hard. Sister told Far Away Sister that Dad isn't ready for hospice, he doesn't need it yet. She told her that as Dad was on his way to the hospital. They just don't get it....

Thursday, September 24, 2009

Something Positive

There is a new care manager of Dad's case. He called Sister today and gave her a list of things she needs to buy for Dad. He is making some changes, and it sounds like Dad will be getting better care. That's something positive.
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Sister actually called Dad this morning. She hasn't been calling him or going to see him very often, so that's something positive.
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A close friend is here and we are doing worship planning, joined by various colleagues. That's something very positive. It's a wonderful opportunity to dig into Scripture and wrestle with it. I will enjoy every minute of the time we spend doing it. That's something very positive.

Wednesday, September 23, 2009

At Least....

I am so grateful that Far Away Sister and I are on the same page. We think that we are the only one who have contact with Dad daily at this point. Far Away Sister called Dad this morning and woke him from a sound sleep. Not very talkative or with it.
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I called him this afternoon. He didn't answer the first time. When I tried again 15 minutes later, he answered, telling me he had been sound asleep. He wasn't very talkative. He didn't respond to the conversation, though he did ask me what time it was. I had to tell him 4 or 5 times in various ways before he understood what time it was.
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Far Away Sister called this evening. She'd been calling Dad for 45 minutes. He wasn't responding. She called me because I was the only one who would understand her concern or recognize his ongoing decline. She talked to Sister today, who told the nursing home he wasn't ready for hospice because he was stable. Yup. He's stable. Each time we've called today it has been harder to rouse him. If he's lucky, he won't wake up in the morning. Brother and Sister will be shocked. Far Away Sister and I will be relieved. We will grieve, and grieve deeply. But we will no longer be haunted by the thought that he's so anxious at night that he pushes the call button 18 times in an hour. We will know he's at peace.

Dreams

It's Far Away Sister's fault. She told me yesterday that she'd had a dream about Dad, and Mom had been in it, too. She dreamed Dad had moved out to live near them (a reasonable wish, given our frustration with the care he is receiving from Doctor and the cluelessness of Brother and Sister.) She said Mom had been in it, too. She'd told Mom she couldn't be in her dream because she was dead. They were both there, though, and healthy. Walking around, looking good, communicating....
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So last night I had a dream. I dreamed about Mom. We were back in their old home. Mom was trying to pack for something, and was obsessed with clothes that weren't appropriate (didn't fit, were stained). She was in her stubborn mode, and it was from the time after she lost her ability to talk. She could still her wishes across, of course. But I couldn't reason with her, because she couldn't explain why or what exactly she wanted. It was a weird dream. It was a frustrating dream, and reflected the frustration of her last few years.
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When I went to bed last night, I was thinking about Dad. For a while I thought maybe he was dead, and waited for a phone call. The phone call didn't come, and I lay there praying that he would have a peaceful night, a night when he didn't push the call light 18 times in an hour because he was so anxious. Daughter continues to struggle with all of this. Yesterday she finally said in frustration, "I wish he'd just die! I wish in 2 hours he'd be dead!" I think we've all wished it were over. I hate the thought of him struggling to breathe at night. I also know that when it is over, we will all grieve, and we will be surprised by the depth of our grief. We want the suffering to end, but we don't want to be orphans. We want the suffering to end, but we will desperately miss both of our parents. So I begin another day, another day of wondering if this is the day the call will come. Trying to remember exactly when they called to tell me Mom was gone....

Tuesday, September 22, 2009

Planning

Far Away Sister is again checking on the price of airline tickets and their availability in the coming weeks. Dad is sounding weaker and less with it with each passing day. How long do we wait for a memorial service? What are the events that we can't cancel for a service? It's hard, living in the uncertainty. Sister is apparently beginning to get a sense of urgency about things, too. She is scrambling to get the DNR order for the paramedics filled out and signed today. Quite a change from yesterday, when she thought it would be fine to wait until Thursday to talk about things. I suspect that she was with Dad for a longer time yesterday than she has been recently, and saw how much he has failed.
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Today when I called him our conversation was just 2 minutes long. He didn't respond to any of the things I was telling him. Far Away Sister didn't think he sounded good, either.
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Waiting is hard. Far Away Sister commented that with Mom, we'd already done some planning for the Memorial Service by this time. We just can't seem to get the energy up again. It hasn't been long enough.

Monday, September 21, 2009

Good News and Bad News

Far Away Sister went through Dad's will and legal documents with it, and found his living will. We had been so focused on protecting Dad from the individual who was stealing from him that we didn't pay much attention to all the documents he signed. It was very clear about his desires, which include no vent, no feeding tube, no resuscitation, no hospital, and hospice. She called and talked to the administrator (Ad) about advanced directives. There is a specific form that must be filled out for the paramedics, and unfortunately it requires his doctor's signature. Ad also told that Dad needed to be on hospice. She said he would end up back in the hospital, and was deteriorating. She said the other night he pushed his button 18 times in an hour. He lays down in bed, can't breathe, and gets anxious. He tells us he's sleeping fine, but obviously that isn't the case.
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Far Away Sister got Brother and Sister on the phone, and laid out what Ad had told her. They agreed to talk to Dad about hospice. Sister suggested Thursday would be a good day to do it, and I pointed out by then he could be in the hospital on a vent. They met with him tonight. It was quite obvious that they weren't happy about the idea. They called Far Away Sister and me and put us on speaker phone. Dad sounded terrible-- weak, confused. But he doesn't want to go on hospice because that would be giving up. He doesn't want CPR or any heroic measures taken to save him, but he doesn't want to go on hospice because that would be giving up. We don't even want to know how they approached him. Far Away Sister had predicted this outcome.
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Far Away Sister told them they'd best get him to specialists who could get some of the fluid off so he'd feel better, since he wasn't ready to give up. She hopes one of them will tell him (and whoever takes him) that it is time for hospice, and that hospice isn't giving up. Far Away Sister called me back a little later to point out that if Dad dies in the next day or so, it will be our fault, because Dr. predicted that mentioning hospice to Dad would kill him, and we'll have killed him. Why is it that everyone can see that Dad is dying except Sister and Brother?
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All I want is for him to get the care he needs to be comfortable. That's all I want.

A Wake Up Call

So now Sister is angry with me because I asked Brother to check on Dad's DNR status when he went to spend some time with him yesterday. She has been checking on it since Wednesday, and hadn't done it yet, so I decided to ask someone who might actually do something. Her anger actually caused her to call this morning, and she was shocked to discover that Dad is full code. They will do everything possible to try and save him, including hooking him up to a ventilator. She was shocked. Far Away Sister thinks that may have gotten her attention.
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Supposedly she's going to get the paperwork and get it filled out today. Far Away Sister is going to call Brother and see if he'll handle it when Sister gets too busy and doesn't have time. Brother also told Sister that it took over an hour for them to respond to Dad's call yesterday, and when someone responded, it was someone who had just come on and couldn't explain why the previous shift hadn't responded. I'd been expressing my concern that he wasn't getting good care, but again, Sister dismissed my concerns.
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At this point, I don't care how mad Sister is at me. It's not about her and her feelings, it's about Dad's needs being met and his wishes being respected. I'm sorry I was right, because it means Dad could end up receiving care he doesn't want. I'm sorry I was right, because he isn't getting the assistance he needs to prevent his skin from breaking down. I hope and pray that Sister will really follow through this time, but I'm realistic enough to know that she still may not be able to do it. If she can't, she needs to let go of her need to control and let Brother or me step in to protect Dad and see that his needs are met and wishes are respected.
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I have tried to be patient with her and show some compassion, but that is rapidly running out, and if he ends up on a vent because she wouldn't/couldn't cope, there won't be an ounce of compassion left in me for Sister. My compassion will be for Dad and Daughter and the rest of the family that is in pain because of her refusal to deal with things.

Sunday, September 20, 2009

Sister and Dad

Sister is really struggling with Dad's decline. Unfortunately, she is his medical representative and the way she is dealing with it is by avoiding it. She stopped in for a very brief time today, the first she'd seen him since she took him to the doctor on Wednesday. She hasn't followed through on making sure he has a DNR. She hasn't followed through on increased care so his skin doesn't break down (she got a call yesterday that there are some red spots that are concerning). She hasn't followed through on anything, and instead is obsessing about decisions she needs to make next summer.
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Far Away Sister and I have grown increasingly frustrated with her. She still isn't speaking to me. Far Away Sister told her that without the DNR, if they were to find him in respiratory distress he'd be in the hospital and on a ventilator before anyone could stop it, and then she'd be the one who would have to make the decision to remove him, since she is his medical representative. Even this didn't seem to get her attention.
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Brother called today, and was on his way to see Dad. I asked him to check on the DNR situation and find out what we'd have to do so he wouldn't end up on vent. He was very willing to do this, and hopefully sees the need for it. Dad is now on oxygen 24 hours a day. We weren't aware of that, but his weight is creeping back up-- 7 pounds since Wednesday-- so I'm not surprised that he needs it. I feel bad that Sister isn't making time to just sit and visit with Dad. I may head back up there next weekend.
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I am very frustrated with Sister. I told Far Away Sister that I would have a very difficult time finding any compassion for Sister if Dad ended up in the hospital on a vent. I'm trying hard to be patient, but it's hard. I'm concerned for Dad. He has been so adamant about not wanting a vent. Sister just doesn't see any urgency or need to check things out and make sure he has a living will on file.
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Daughter continues to struggle. An aide took her to Special Olympics bowling today. She called a little while ago. She tried to check her blood sugar but couldn't because she was shaking. I told her to take a deep breath, calm down, and try again. I don't know what she thought I'd do-- drive the 12 miles to check it for her? I made her write up a plan for how she will manage to do some work at the workshop this week. I think I may make her take what she's written in and give it to her supervisor. Of course, I'll have to call to make sure she delivers it, but I'm considering it....
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Saturday, September 19, 2009

She Knows

One of the most frustrating things about Daughter is she knows what she needs to do. She knows what I expect. She got up this morning and was eating breakfast as I was doing various things in the kitchen. I opened a lower cupboard to get a plastic container out, and once again things fell out on the floor. I've told her several times she needs to reorganize, which she proudly does every so often, and then immediately begins just throwing things in when she empties the dishwasher. I didn't say a word, but when she finished breakfast, she got down on the floor and emptied out all the plastic containers. Of course, she emptied them onto the middle of the kitchen floor, where I am trying to work. Have I mentioned we have a small kitchen? Have I mentioned that I am short?
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So I reach over her to put water into the ice tea maker. I can't reach the button, so I go around to the other side to push the button. Recognizing that she is in the way, she storms upstairs and slams her bedroom door, leaving everything on the floor (see picture above). Neither of us has said a word.
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I move into the living room, and hear her come back downstairs and throw everything back into the cabinet, slamming the cupboard door, and then retreating back upstairs to once again slam her bedroom door. There still haven't been any words spoken by either one of us. She returned downstairs and this time organized the items in the cabinet. Unfortunately, she put all my mixing bowls on the shelf at the back of the cabinet, making them very difficult to get at. I haven't said anything, as I'm tired of hearing doors slam. I'm tired. Today I'm a MOTE.
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Sleep

Daughter has an amazing ability to sleep. She came home last night and slept from 7:00 to 9:00, when she appeared to take her insulin and pills. She immediately went back to sleep. It is now almost 10:00, in the morning, and she is still asleep. Anytime there are things going on that she doesn't want to deal with, she sleeps. If I allow it (and I may, because I'm enjoying the peace) she'll sleep until noon. She'll still be able to take a nap this afternoon and go to bed and fall asleep at 9:00 tonight.
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She doesn't need this much sleep. She functions very well on 8-9 hours of sleep. It's just her way of avoiding things. Most of the time I allow it, because if I make her stay awake when she's trying to avoid things, she has a hair trigger and is very unpleasant to be around. Of course, I'm often stressed, too, when she's seeking to escape into sleep, so she may say that I'm unpleasant to be around, too.
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There are times when I envy her the ability to escape into sleep any time she wants to.

Friday, September 18, 2009

Rough Night

Daughter was upset, of course, that I knew what had been going on at the workshop. She demanded that I stop the car so she could get out and go live on the streets. I didn't. She's never going back to the workshop, of course.
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When we got home, she stormed up and slept all night. She came down for her pills and insulin. No apology yet. I told her she needed to make tomorrow a better day. We'll see....

Phone Calls from the Workshop

Daughter called me from the workshop sobbing hysterically. I couldn't understand her she was so upset. She said she was being criticized for no reason by a substitute. I knew there was more to it, but I wasn't going to get in the middle. I urged her to calm down, take deep breaths, wash her face and go find a supervisor she trusted that she could talk to about whatever was going on. I assured her she was fine, and we'd do something tonight.
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So a little while later I get a call from someone at the workshop about what had gone on. It seems Daughter has not been working. It seems that today she claimed she was too sick too work, and after being given permission to put her head down and rest, went over to dance with some friends. She was called on that, and didn't like it. That's when she took off and hid in the bathroom to call me. C, who called me, went looking for Daughter and found her as she was hanging up from talking to me.
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I told her Daughter was struggling with Dad's health issues, and she wasn't coping well right now. C told me she had told Daughter she needed to tell me what had happened. I told C I would talk to Daughter tonight and invoke her name if necessary. It will not be a pleasant conversation, I already know that. It will be a necessary conversation, though.

Thursday, September 17, 2009

This Evening's Smile

I ordered 2 new skirts, and they arrived yesterday. When I tried them on, I was disappointed, because they were shorter than I had thought they would be. One was right at my knees, so I decided to keep it and wore it today. The other was several inches shorter, and will be returned. Daughter saw the short one tonight and asked about it.
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"It's a skirt I ordered, but it's even shorter than this one. Do you think I should keep it?"
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"No! You can't wear short skirts. Men might look at you and they might not care that you're past the time limit!"
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"I didn't know there was a time limit. Are you saying I'm past it?"
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"Never mind. I think I'll shut up now."

On a More Positive Note

At least Sister has decided she'd best get a little more on top of Dad's needs. It's been taking her a week or two to address concerns/needs. This morning she called the assisted living facility about increasing the help he receives. We were pleasantly surprised. Of course, Far Away Sister laid out all the things that hospice would have done that weren't now covered, like monitoring the care he was receiving. I think she decided she'd best see that Dad is getting better care.
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We are going to get Dad a living will so he doesn't end up on a ventilator. We are considering writing a letter to the doctor stating our understanding that he has promised to provide everything hospice would give Dad and laying out what we think hospice would give Dad. We suspect that such a letter would result in him quickly referring Dad to hospice, especially if it were written by Dad's attorney. If we're lucky, Dad will go peacefully before we have time to do any of this. Our big concern is that he not end up on a ventilator, as he has been very clear that he doesn't want that.
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Okay, this next part isn't so positive. Daughter is having "symptoms" today. I have informed her that she is fine and can remain at the workshop. She thinks I'm terrible, of course. Maybe I am. After all, if both Sister and Daughter think I'm so terrible, maybe they know something I don't know....

Wednesday, September 16, 2009

A Wonderful Sales Job

Sister took Dad to Doctor today, so he could make a fully informed decision about hospice. Doctor believes in and supports the hospice way, he resigned as medical director of the hospice because it took too much time.
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Doctor wanted Dad to know that hospice wouldn't draw blood to monitor his kidney function.
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Doctor wanted Dad to know that he could provide everything hospice provides because he is board certified and doesn't need hospice. He would write an order that they weren't to transport him to the hospital without consulting Doctor. Dad has been miserable the last few times he's been in the hospital and they haven't been successful in getting any of the fluid off of him when he's been in the hospital. I'm sure that while Dad is in respiratory distress the assisted living place will be glad to wait until Doctor finds time to return their page to transport Dad.
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Doctor said Dad is waking up and calling the aides multiple times a night because of the Ambien he's been taking to help him sleep. It has nothing to do with anxiety or not being able to breathe. He'll order oxygen at night, though, so he'll be a little more comfortable. He doesn't see the need for any medication for anxiety. He'll just stop the Ambien and everything will be fine.
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Doctor didn't seem to be concerned about emotional or spiritual support for Dad, and didn't see the need for anyone to be in there monitoring his care or assuring he's not sitting in urine soaked depends all day because he's too weak to go to the bathroom on his own, and too proud to ask for help. Doctor didn't seem concerned about the possibility that his skin might be breaking down because of sitting in urine all day.
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I'm so glad Doctor is so concerned that Dad make an informed decision. Sister was very surprised when Dad chose to follow his doctor's advice and not go on hospice. Far Away Sister and I weren't. We knew Doctor didn't want Dad on hospice. Sister still isn't speaking to me, of course. Doctor didn't tell Dad he wasn't dying. He didn't tell Dad that he wasn't in end stage congestive heart failure. He didn't offer Dad anything that will improve his condition or lengthen his life. Sister thinks it's wonderful that Doctor wants to make sure Dad can make an informed decision about hospice. Of course, an informed decision doesn't involve pointing out any of the benefits of hospice. No, that's not necessary. I saw a billboard yesterday: "Death is inevitable. Suffering is optional." It was an advertisement for hospice.
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I'm just very sad that Dad is being denied the kind of care that would make this final journey a little easier. Very sad.

A Morning Smile

For the last few weeks Daughter has wanted me to make peanut butter and jelly sandwiches for her lunch. I think she finds comfort in knowing I made her sandwich for lunch, because there are times when she hates peanut butter and takes frozen stuff in and heats it in the microwave. Every morning I have been measuring out 1/8 cup of peanut butter and 1 tablespoon of simply fruit strawberry jam and spreading it on whole wheat bread. This morning the 1/8 cup measuring cup was in the dishwasher, so I was using a tablespoon instead. As I was measuring out the second tablespoon of peanut butter, Daughter saw me. "You're putting 2 tablespoons of peanut butter in my sandwich? You know I hate peanut butter!"
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She just couldn't believe that 2 tablespoons and 1/8 cup were the same.... She apologized this morning and told me she hoped she hadn't called me too much yesterday. She was in a chipper mood, and is now waiting on the porch for the bus and singing Christmas carols.
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I have much to do today, including cleaning the house. I invited the judicatory boss to lunch here on Friday. It seemed like a good idea at the time....

Tuesday, September 15, 2009

4 Calls

Daughter called me 4 times today. I am impressed that she only bugged me 4 times. She called this morning before I left for the meeting, crying because she was worried about Grandad. I told her I'd talked to him and he was fine (or at least still alive). I assured her she'd do fine.
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She called when she got home, and I left worship to reassure her. She called before she ate supper, concerned about her blood sugar. She called before she went to bed to get instructions on snack.
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It was good to get away for the afternoon/evening. The meeting was boring, but I made some connections and had pleasant company for supper. It was good to sit in a pew and worship. It was good for Daughter to see she can survive without me for an evening.

Monday, September 14, 2009

Cell Phones

Daughter is currently stuck on stupid. She gets that way sometimes. Anything I ask her to do this evening, she doesn't understand. She also has a hair trigger tonight, and anything I say that she doesn't like results in an announcement that she's leaving. I'm rearranging furniture in the living room after adding a couple of storage pieces. I had to explain to her 3 times what I wanted her to do with books in an old telephone stand we were using to hold the stereo, and she still didn't understand.
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She's stressed about Dad, and she's upset because she knows I won't be home tomorrow evening. I'm headed to a meeting 2 hours away, so there will be a home care aide here to supervise tomorrow evening. This morning she informed me that I couldn't go because there was too much stress and she didn't want me to be away. I'm going. She'll survive, but she'll also punish me for abandoning her. I anticipate that she will be calling me numerous times tomorrow. Some days I'm not sure I like cell phones at all....

Sunday, September 13, 2009

Back to Work

Worship this morning was good. We had youth group tonight, and it was good. I took a nap this afternoon. It's been a long time since I took a nap on a Sunday afternoon, but I was exhausted. It's good to be back focusing on things here.
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Daughter has done so well through all of this. She didn't complain about the length of time we spent with Dad. She has been concerned for me. I'm grateful.
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Dad is still alive, and he hasn't needed to go to the hospital. Hopefully he'll stay stable until the doctor decides he's in need of hospice services. I don't want him to have to go back to the hospital because Sister wasn't comfortable with getting him on hospice. He doesn't want to go back to the hospital, and I want his wishes respected.

Saturday, September 12, 2009

Trying to be Patient

Sister is having a hard time with Dad's decline. She's been avoiding him as much as possible. While I was up there I took care of a number of things that she or Brother could/should have done for him. I bought him new cordless phones, additional towels, various small items.... She says she's on board with hospice, she's just not comfortable talking to Dad about it. Fine. So I talked to Dad, and he wants hospice. Among the things he has said, "What do I have to live for?" "It's time." "Why can't I have bacon? Who put me on this diet?" "I'm not comfortable in bed." (He's supposed to be on bed rest.) "I need to go down for meals, this apartment gets too lonely." "I don't want to go back to the hospital." "Sister has some strange ideas." I told him she was having a hard time dealing with things, and that's why she wasn't visiting, he said, "I know."
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Dad has gotten very weak. Transferring from his wheelchair to his recliner exhausts him and leaves him short of breath. Sister asked me to meet with hospice, as she wasn't comfortable. First the appointment was to be this morning, then at 2:00, finally at 3:30. It was much later than I had planned to stay, but I did it for Dad.
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So the social worker from hospice arrived. Dad didn't have any questions. He understood what it was about, he wanted to sign the paperwork right then. So, I called Sister,who regularly pages the doctor, who had told her he'd support us whatever we decided. I called her cell, and she answered quickly, and explained she couldn't call the doctor because she didn't have a signal. I don't know how I managed to talk to her. The hospice offered to call the doctor, but Sister insisted she needed to talk to him first.
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Bottom line, doctor won't order hospice. Depending on who you talk to it is because there is a rift in the family and the whole family isn't on board or because he wants to make sure that Dad understands this is end of life care and it is really what he wants. He said he'd talk to Dad about it on his next appointment (a week and a half from now.) Sister is supposedly going to move his appointment to this Wednesday and take a day off work to take him to it.
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Brother has decided to get him in with a kidney doctor and ask about starting him on dialysis. A friend told him he should get a second opinion.
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It was 9:00 when I got home this evening. The only reason I even talked to Dad about hospice was because all my siblings thought it was a good idea. Far Away Sister and I are both very frustrated at this point. I'm trying to be patient and remember that Brother and Sister are having a hard time dealing with this. But it's hard, when they keep contradicting themselves all over the place. It's hard as I sit here exhausted from a long day and still have to write a sermon for tomorrow. Because Dad isn't on hospice, they will continue to discourage him from going down for meals because he's supposed to be on bed rest.. If he has difficulty breathing, they will rush him off to the hospital. I also discovered that he hasn't been getting all the treatment the doctor ordered. If Sister would go visit him occasionally, she might have noticed this. But she's avoiding things right now. Avoiding isn't going to keep him alive. It's not going to get the 70+ pounds of fluid off of him. It's not going to give him the quality of life he wants and deserves.

Breakfast

Dad went down to breakfast this morning. The care managers weren't happy. He's supposed to be on bed rest. When Far Away Sister called him, he was back in bed and struggling to breathe. He wanted to get up. She told him to get up. She told him that now that he had chosen hospice, he would have the freedom to go down to meals if he wanted to. She assured him he wouldn't have the restrictions anymore. I called and asked what he wanted for lunch. He's been longing for some Kentucky Fried Chicken, but because he's supposed to be on a low sodium diet, he hasn't had any. He will have some for lunch. He will be happy.
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Far Away Sister thinks Sister will have an excuse for not appearing at the hospice meeting. She claims she fine with this, but her voice and actions say otherwise. I'm going to let them know that she's struggling. Hopefully they will be able to give her some help and support. Her ex-husband (she still lives with him because the can't sell their house) brought her a latte from Starbucks this morning. I hope he will continue to be as kind and supportive.
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Daughter and I went to a small restaurant across from the motel. We had a great breakfast. We're going to check out in a few minutes and do a bit of shopping on our way to see Dad. Then we'll hang with him until the hospice people arrive. I hope they can get the orders from the doctor today (he is their medical director) and lift the restrictions so Dad can enjoy whatever time he has left. I don't think it will be long, but I've been wrong many times before, especially with regard to Dad.

Friday, September 11, 2009

Quality vs. Quantity

So on Wednesday the doctor put Dad on bed rest, a low sodium diet, and restricted his fluid intake. He was in bed for less than a day, and he asked me to buy him some beer today. I also bought various other odds and ends for him. I sat down and asked him if he wanted quality or quantity in his life. He told me quality. I suggested that we look at hospice, and explained that if the focus were on quality over quantity, we wouldn't worry about what he was eating and drinking so much, we'd focus on what made him happy.
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Tomorrow afternoon at 2:00 the hospice people will be there to talk to us. I will be there, and will head home after the conversation. Far Away Sister and I are relieved, Sister is struggling with it. Dad said, "Sister has some strange ideas." Yes, she does. I told him that she was afraid that if we mentioned hospice he'd think we wanted to get rid of him. He laughed. I assured him that we didn't want to get rid of him. I asked if he was afraid to die. He said he wasn't. He pointed out he doesn't have anything to live for. I told him if there were an important family event coming up, I'd encourage him to aim for it, but since there isn't, I agree with him. I reminded him that whatever happens, he wins, whether he has more time with us, or is with Mom sooner.
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Sister kept asking me if I'd inspected Dad's feet. I pointed out to her that I wouldn't know if they looked better or worse. She was frustrated with me. I wanted to visit with Dad, not inspect his feet.
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We're now in a motel, and Daughter just came back from walking across the parking lot to buy us supper at Wendy's. She's very proud of herself for that accomplishment.

Thursday, September 10, 2009

Road Trip

Daughter and I are going to go visit Dad tomorrow. He has infection in both feet. He's supposed to be on bed rest with his feet elevated, but he isn't following that. That's okay with me, as I figure if the fluid drain out of his legs, it would just go to his lungs. He's also becoming more confused. Far Away Sister called him about 1:00 this afternoon. She asked what he'd had for lunch, and then he asked her if she was getting ready for bed. She told him she was getting ready for lunch. He asked her what the time difference was, and told her it was 7:00 where he was. She's 2 hours earlier than he is, and normally he knows that. He finally figured out he had his watch on upside down.
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Far Away Sister and I both are frustrated as we try to figure out how he is doing. So, in part, I'm on a mission for both of us to go assess the situation. Last we heard, he had about 77 pounds of fluid. I was surprised by how supportive Daughter was of the idea of making a trip up there. She said it was what she needed. The uncertainty is hard on both of us. Initially, I was going to go up and come back the same day. Now I've decided to go and spend the night. I made reservations at a motel. There are a number of little things I will take care of for Dad, including buying and programming a new cordless phone for him. I'm hoping to find one with a large numeric display and volume control. He's having trouble hearing us on his current one.
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Far Away Sister sees it as an opportunity for me to go say good bye to him. I'm no longer trying to predict when the call will come, though when the phone rang at 7:04 this morning, that was my first thought.

Wednesday, September 9, 2009

Celebrating the Little Things

Daughter is getting herself up in the morning. Because I don't have to fight her to get her out of bed, she is allowed to take her shower in the morning. This morning she appeared at my bedside fully dressed and woke me up. There was fog delay, and it didn't throw her off. She did some small chores (like putting away the dishes that don't fit in the dishwasher that I had washed) before heading out to wait for the bus.
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Her tremors are much improved. Now how's this for irony: They got worse when she went to generic Keppra. We reduced her Depakote, and they improved, but continued. Now her Depakote is generic, and they have all but vanished. I also think that both of us are doing a better job of living in the uncertainty. Dad may survive this round, he may not. We can't predict. It's in God's hands. Whatever or whenever, we'll be okay.

Tuesday, September 8, 2009

Bureaucracy


I don't always appreciate bureaucracy. In June, I had to prove to my insurance company that I provided more than half of Daughter's support and still declared her as my dependent so I could keep her on my health insurance. After reviewing all the information, they decided to cover her for another year, for which I'm grateful, as are all her various doctors.
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Last month I had to tell Social Security what I did with her SSI. That was easier, as there were 3 categories to fill in: food and housing, savings, and everything else.
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Today I got to deal with Medicaid. We received a letter telling us we would be there at 1:15 today to get it renewed for another year. So, I picked her up at the workshop and we presented ourselves in the welfare office at 1:10. Back in December the bank had called (national office) not local, and informed me Daughter's savings account had to be changed, as she was no longer a minor. I okayed the changes, sent back the paperwork, and a couple of months later they closed the account and sent me a cashier's check for the balance, saying they hadn't received the information they needed. I just threw the money in my savings account, and figured I'd worry about it later. That wasn't acceptable for Medicaid. I have to show the first account was closed, and what happened to the money.
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So, we went to the bank. Problem: we couldn't open a new account because of the problem with the account they closed. Apparently there had been a discrepancy on Daughter's social security number, and they couldn't get it resolved. I had her SSI paperwork, so after a long phone conversation they used that to resolve that issue and get the new account opened. I made some changes to my accounts while we were there.
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In between, I dealt with phone calls from siblings. Dad is still alive. I don't know what his weight is. He voice sounded okay, and he said he was fine, but he didn't seem engaged and didn't ask questions. Far Away Sister was concerned because the first time she talked to him he sounded weak, and the second time he was confused. Brother reported that he had a bratwurst for supper. Nice, high sodium option. Maybe he is choosing death by eating.
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On a brighter note, we were blessed with the beautiful rainbow above after supper this evening.

Monday, September 7, 2009

The Fair

Daughter and I went to the county fair today. We ate junk food and watched a man use a chain saw to carve a work of art. We talked to some friends. We heard how much people enjoyed the Big Event last night. We did not go to talk to Dad about hospice.
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I called Brother this morning, and told him I would not raise the possibility of hospice with Dad unless he was on board. He didn't see what it would do for Dad, so I told him what I thought it would do, and he went over and talked to Dad. Dad has gained 4 more pounds so he now has 77 pounds of fluid. He did not jump at the idea of hospice, but he also didn't say no. I thanked Brother for planting the seed. We'll see what Dad does with it now. Brother told him that if he went on hospice, he could eat whatever he wanted and we wouldn't worry about sodium content. He told him if he wanted "death by sliders," he'd make a White Castle run and buy them for him. Dad laughed at the thought. He also told Dad he is not a candidate for kidney dialysis.
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My prediction is that by his doctor's appointment on Wednesday he will be ready for hospice, if he is still alive. My hope is that he will go to sleep one of these times and just not wake up. That's what happened to my last parishioner who was fighting congestive heart failure.
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Daughter enjoyed her time at the fair. She understands that Grandpa is dying, and for now, she's doing okay. She's a little bit clingy, but not unreasonably so. Either that, or it's cool enough she's not driving me up the wall with it.

Sunday, September 6, 2009

Putting Things in Perspective

So today was the Big Event. It was a beautiful, cool day. Perfect weather for our Big Event. The church is not air conditioned, and it is usually very hot when all the people are packed in for the Big Event. We went outside, and one of our neighbors had spread manure. The wonderful smell of fresh, country air to welcome all of our guests!
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Attendance was up over 40% for the morning worship service. It was great to see so many people who had come home for the event. As the service began, the sound system began to act up. It made weird noises off and on through out the service. Our experts were back there trying to solve the problem.
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I came home and got a message from Sister. Dad gained 7 pounds since yesterday. He's not carrying around about 73 pounds of fluid. None of his clothes fit, and neither do his shoes. His feet are very red, and his skin is tight. Sister is finally coming to terms with the reality that he is not doing well. She asked me when I could come talk to him about hospice. She wants to go with me, but Tuesday she goes back to work full time, and tomorrow she is taking Niece to the zoo and a birthday party. Brother doesn't want us to mention hospice to Dad. He says it would kill him. Daughter doesn't want to go. She doesn't want to see Grandpa like this. Sister told me that Daughter wouldn't notice anything. She told me that after she had told me how terrible he looked and how shocked I would be at the change in him.
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I spent much of the afternoon talking to various siblings. Brother and Sister still aren't speaking, and now that Sister is beginning to face reality she is very frustrated that Brother is in denial.... In between phone calls I fixed a salad for the big event, comforted Daughter and talked about coping with Grandpa's decline. I had promised to take her to the fair tomorrow. She might not get there this year. I also filled pill boxes for Daughter. Two more of her medications are now generics. Sigh.
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By the time the supper began, the wind had shifted and the air was a little less fragrant. I got over to the church and as I was eating supper with some friends I saw the organ technician appear in the basement and climb up into the organ chamber. Not a good sign. They had spent hours getting the organ in shape for tonight on Tuesday. While the organist and pianist were practicing, the organ suddenly stopped playing. An emergency call went out, and the organ company showed up. It seems that a sleeve that takes air to the pipes had suddenly developed a torn seam. The seam began to unravel, and the whole thing quickly gave out. As the technician told me, our organ ruptured its aorta. They constructed a new sleeve. I asked if they were going to use duct tape. He said they might. They did an emergency repair, and will be back during the week to finish it up. They didn't have duct tape, so they used electrical tape.
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People were coming to me with questions and concerns, and nothing really bothered me. My Dad is dying. Their concerns all seemed so petty. It was a wonderful evening of music. I didn't stress over the little things. How can I get upset about sound systems or organs when my Dad is dying? I still haven't decided what I'm going to do tomorrow. I would prefer not to travel on the holiday, but I may have to. We'll see....

Saturday, September 5, 2009

Softball and Assorted Thoughts

Today Daughter had a softball tournament 85 miles away from here. We were on the road at 7:15 to get her there on time. She got a base hit and scored a run, handled a couple of balls at 2nd base, and generally had 2 good games. She came home with a gold medal, as her team won both of their games. I kept score. It's been a very long time since I kept score, but I did it, and managed to keep track of who was batting next and who won, though I'm not sure what the final score was in the first game.
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Far Away Sister talked to Nurse at Dad's assisted living place today. As we thought, he was in very bad shape last week, and Nurse didn't think he would survive. Sister still doesn't get it, but Nurse said that's not unusual for family members to be in denial. She thinks Dad is a candidate for hospice. His weight was down 2 pounds today, and she said he looked better than he had for a while, and wasn't short of breath.
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Daughter is on the waiting list for supported living. I really struggle with whether I want her in that kind of setting. There is a woman, S, on the team who is also diabetic and lives in supported living. Monday night she arrived for a 6:00 game and hadn't eaten supper or even had a snack. The staff person who dropped her off wasn't too concerned about it. She knew she'd have a sandwich after the game (8:00). S checked her blood sugar, and the coach asked me about it. It was low enough I had Daughter give her some peanut butter crackers so she wouldn't drop during the game.
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Today they sent S to the tournament with a snack. A reasonable snack to prevent lows is 8 crackers with cheese or peanut butter (4 cracker sandwiches). They sent 3 plain crackers. They didn't send her meter with her, and she complained several times about not feeling well, but with this woman, that doesn't necessarily mean anything. Now Daughter is higher functioning than this woman, so she could be a better advocate for herself, but I still don't think I could trust them with her care. There is just too much at stake.
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One of the staff people from the agency that staffs the house S lives in took Daughter to the area track meet last spring. She hadn't bothered to read through Daughter's material, and didn't know she was diabetic. I gave her a quick lesson on how to use the insulin pen and explained that Daughter had a book that listed carbs in fast food and how to calculate her insulin for lunch. When Daughter came home, her blood sugar was sky high. The staff member didn't bother to figure out carbs or calculate her insulin. Daughter wasn't about to correct her, because she wanted to eat everything and not worry about it. I was not happy, to say the least. I just asked the agency to arrange some more people to stay with Daughter. I had very mixed feelings about it, as they will have to handle at least one meal. It's frightening to entrust the care of your diabetic child to strangers, especially when the strangers don't even bother to read the orders for caring for Daughter. I wonder if I will ever be able to let go and allow her to move into supported living. I wonder if it will ever be safe.

Friday, September 4, 2009

Long Distance Caring

Far Away Sister and I are becoming increasingly frustrated. Brother and Sister don't seem to think Dad's congestive heart failure is that serious. After being down 7 pounds yesterday, his weight was up 2 today. So he's now back up to 68 pounds of fluid he's retaining. None of his shoes or clothes fit him. Brother's comment today, "At least we know the diuretic still works." Sister, who was going to get orders from the doctor about diet for him so he wouldn't be eating high sodium food, still hasn't managed to get that done. Now it's the weekend, and it will be at least Tuesday before she can get that done because of the holiday. Assuming, of course, he is still alive on Tuesday.
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Far Away Sister and I feel like we're walking a tightrope. Sister is so defensive right now and having such a hard time that it's hard to even ask her a question or offer her help without her being offended. Far Away Sister says she's afraid that the staff at his assisted living facility must think we don't care and are willing to just stand by and watch his health decline. She's called and left a message for the nurse to call her tomorrow. She wants her to know that she is willing to do anything that needs to be done to help Dad, and that she has a greater sense of urgency that Brother and Sister, who are stuck in denial about the seriousness of his condition. Nurse told Sister Thursday that she thought about Dad all day Wednesday while she was off, because she was afraid all the fluid would overtax his heart and it would just give out. She was relieved to find he was still alive on Thursday. But no rush on changing the diet or anything....
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But hey, at least we know the diuretic still works-- for one day anyway.

Fog

It's that time of year. For the second morning in a row, it is foggy, and the workshop buses are delayed. Yesterday we began with a 1 hour delay, then went to a 2 hour delay, and finally cancelled. We are starting down the same path today, the 1 hour delay has just been increased to 2 hour delay. These are very hard on Daughter. She needs structure and routine. She doesn't know what to do with that extra time in the morning, and always ends up going out to wait for the bus very early. She went out 30 minutes early when it was still a 1 hour delay. I haven't told her it's been changed to a 2 hour delay. I know, I'm a coward.
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Tomorrow she has a softball tournament 90 minutes away. We are planning to leave at about 7:00 in the morning. Originally I was going to drive, meaning we'd have to go to the workshop first (20 minutes in the wrong direction), but they found someone else to drive, so we'll just meet them at the tournament. When we go separately from the team, Daughter gets antsy. She's sure I'm lost. She is convinced she's going to be late. She stresses and keeps asking me if I'm sure I'm going the right way 100 times. If it is foggy like this, they won't leave the workshop until it clears. That means Daughter will stress even more. I'm already dreading it.
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Occasionally I will remind her that I always get her where she needs to be, and ask her when she will learn she can trust me. She's sometimes embarrassed, but always acknowledges that it is very hard for her to trust. Even after over 19 years of being with a mom who can be trusted, she still has trouble trusting me. She still remembers those first 3 years, when parents couldn't be trusted. After 19 years, their betrayal is still more powerful than my commitment, at least part of the time.

Thursday, September 3, 2009

Never Mind....

I just got off the phone with Far Away Sister. Dad has lost 7 pounds since he went back on the super powerful diuretic that makes his kidneys fail. We are pleased, but we're also concerned that Sister is going to see this as proof that Dad is fine and we don't need to worry. One of the nurses at the assisted living place where he lives was off yesterday, and she told Sister that she was thinking about Dad all day because she was so afraid his overworked heart would just give out.
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We think he will probably survive this round now, but don't know when the next round will begin. We're back on the roller coaster.
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Daughter is home today. Fog this morning resulted in the workshop closing. We made her proof read the bulletin and then fold it this morning. She is sooooo slooooow. This afternoon I'm going to drag her with me on a visit. She's not pleased, and asked if she had to go. Interestingly, she didn't ask if she could stay home alone, she asked if I could find someone to take care of her. Yet she still talks about wanting to live independently....

Wednesday, September 2, 2009

Waiting

For the second time this year, I feel like we're on a death watch. Mom died June 9, and Dad continues to decline. Sister continues to avoid the situation, and can't figure out why they just can't hook him up to a dialysis machine and solve the problem. Dad is sounding more congested and depressed each day. Far Away Sister and I are spending a great deal of time on the phone. Daughter is back to sleeping extraordinary amounts of time to avoid thinking about everything. Yesterday evening she was very verbally abusive of me. I told her I didn't know what gave her the idea it was okay to say those kinds of things to me, since I rarely yell at her, and never call her names or say cruel things to her. Sometimes I get tired of being the target of every emotion that disturbs her.

Tuesday, September 1, 2009

Distractions

This week is the Big Event, so there is much to be done in the office. I thought we had the program done for the Big Event, but today new items that needed to be included appeared in the office. The task I made sure a board member was responsible for so it didn't get dumped on the office this week got dumped on the office this week.
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In the midst of this, I spent much time on the phone today with regard to personal matters. Dad's weight gain is now at 4 pounds a day, down from 5 pounds a day. He's carrying around about 75 pounds of fluid. He has fluid on one lung, and both lungs are compressed, leaving him short of breath. Sister, how is his patient advocate, is having a hard time with this. She is a teacher, and as the school year ended last year Mom died. Now a new school year is set to begin, and they put down their 13 year old dog Friday and Dad is declining rapidly.
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She has been holding out hope that he could go on dialysis and that would solve everything. Far Away Sister and I were pretty sure he wasn't a candidate for dialysis. We expressed that concern to Sister, and today she heard us. The doctor confirmed what we thought: Dad is not a candidate for dialysis. The problem is more with his heart than his kidneys.
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The plan is to put him back on a powerful diuretic for several days (which always overtaxes his kidneys, causing them to shut down), severely limit his fluid intake, and make sure he is getting a low sodium diet. None of these things will solve the underlying problem, of course. Sister is having a harder time denying what is going on right now, and it is very hard on her. Denial is a defense mechanism, and it is no longer working for her.
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Daughter called me three times from the workshop. She's having a hard time right now, and one of the men there was harassing her. She told him loudly to stop, and he didn't. A supervisor saw the entire thing and did nothing to stop it. They are understaffed, and the staff is not well trained. When they don't have work in, the clients are left to entertain themselves, and too often it ends in trouble....
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With all the phone calls I've not had the time I needed to focus on the things I need to do in preparation for worship Sunday morning and the Big Event Sunday evening. It will get done, and it's going to be a challenging week, both professionally and personally.