Here We Go Again

My mother's back in the hospital after what may have been a seizure. My sister hasn't had time to give me the full details -- the first time we spoke, I only had a few minutes, and the second time we spoke, she'd just gotten back from the ER and was exhausted -- but I gather that Mom's been going downhill and that her medical condition is very complex. The hospital will keep her for at least three days so she can be released to a nursing home, where, according to my sister, "She's likely to stay."

My sister and brother-in-law have been doing a heroic job caring for her. If they can no longer do that, I completely understand. In the meantime, please pray for her and them and me.

She wasn't entirely coherent in the ER, but when I said, "I love you," she said, "I love you, too."

I think that will be the last thing to go.

Hodge-Podge

In no particular order:

* Today's another anniversary! Harley came home with me from the pound ten years ago today, and a mighty cute kitten he was, too. And now he's a mighty handsome senior cat. (I tried to take his picture today, but he wasn't having any.)

* The rheumatologist called. I don't have Sjogren's antibodies and, this time, my ANA was negative. Go figure. So, anyway, I'm fine, except that I still have all the symptoms that Sjogren's would have tied up into a neat little package. Oh well. Better to be ruled healthy, I guess!

* I paid some of Dad's bills this morning. Just in case you wanted to know, a four-mile ambulance ride in Reno costs $891. An ambulance ride of the same distance in Palo Alto costs $1,727.10. Fortunately, Dad had enough money left to cover these expenses, although his balance is dwindling fast.

* Along the same lines, an emergency admission to a Philadelphia hospital in which the patient stays one night (this happened the night before Dad moved West), costs more than $11,000, although it turns out that the VA's paying that one. Thank God!

* Today I was going back to my car, which was parked near a large medical building, and I saw a woman about to put a folding wheelchair in her trunk. A much older woman, I'm guessing her mom, sat in the car. I walked over and asked the younger woman if she needed help, explaining that when I was taking care of my Dad, I could get the wheelchair out of the trunk easily, but had a devil of a time getting it in. She thanked me profusely, almost weeping, and said that she didn't need help with the wheelchair, but was so grateful to me for noticing her and speaking up. She'd had a hard time in the medical building, where she'd been struggling with doors and where people had been very rude. I made sympathetic noises about how difficult caregiving is, and she thanked me again, even more fervently this time, for knowing that. "People can't know who haven't done it." I told her that there are caregiver support groups, although I didn't have specific information to offer. She seemed very fragile. I hope she'll be okay.

* That incident occured after lunch with a med-school colleague, who told me a story about a friend of hers who was so stressed out and isolated after years of caring for a dying brother that his entire personality changed. Moral of these two stories: If you know somebody who's taking care of an ailing loved one, please offer whatever help you can!

* Last night, Katharine coached me through the beginning of my first sock, using a toe-up pattern with such a complicated beginning that I'll never get through the second one without her guidance. Because worsted yarn and size 5 DPNs were the only materials I had with me, I'm now knitting the Sock that Ate Reno. This sock looks more like a hat. Gary thinks it will fit him; if not, I'll have to donate the pair to Bigfoot, or possibly knit just one sock and use it as a smallish Christmas stocking. This will also be one warm pair of socks, let me tell you. When I was in graduate school, my mother gave me a thick, handknit woolen sweater from South America. This sweater was rated down to minus-50 Fahrenheit. Gary and I called it the Bulletproof Sweater. Now I'm making Bulletproof Socks.

Enjoy the holiday weekend, everybody!

Gray Day

It's cold and gray here today, with snow and rain and heavy clouds, and I've been feeling gray and heavy in consequence. The weather was like this the day after Dad died, and I think that memory is making me sad. Can weather be a grief trigger? (Why not? Anything can be a grief trigger.)

One of my students makes a point of checking in to see how I'm doing at the beginning of every class. Yesterday she asked me how I was, and I told her that I'm more behind on grading and other work for school than I've ever been.

She said gently, "You've never been through this before."

You're right. I haven't. Good point.

Meanwhile, today my sister called to say that she had to have one of their cats euthanized. That's sad enough, but worse, it turns out that this kitty had not only diabetes, but also FIP, which is contagious and incurable and may, therefore, have infected the other six cats in the household, including one my sister's been keeping for my nephew during a housing transition.

The upside to my mother not caring much about cats anymore is that she isn't devastated by this situation, as she would have been until a few months ago. My sister says her dementia's getting worse; on the other hand, she's on an appetite stimulant that's been very effective, and all her lab values are a lot better than they were, probably because she's eating well. Mom's doctor even called to congratulate her on the results.

Given the dementia, improved physical health may be a mixed blessing: one of my nightmares would be mental deterioration within a strong body, but I guess we have to take what we can get.

On a slightly less dire note, the liturgical types at my church are trying to figure out how to get more people to attend Holy Week services. There are suggestions afoot that would shorten Good Friday, or move it to the evening -- although Maundy Thursday and the Great Vigil are shorter evening services, and they're equally sparsely attended -- or try to educate parishioners about why Holy Week's so important. We've done a lot of education, though. My theory is that people avoid those services because they're gloomy and because it's just too much church in one week (I disagree, obviously, and so do the other diehards), and we can't change any of that without gutting Holy Week completely.

Last year, I preached on Maundy Thursday about how the foot-washing isn't optional. Our congregation is very foot-phobic -- hardly anyone comes up for the washing -- and I wanted to try to change that. People said the homily made them think, that maybe they'd participate this year.

This year, fewer people participated than usual. Sigh.

There's part of me that's tempted to suggest a really hardball tactic: "Jesus said that if we don't let him wash our feet, we have no share in him, so if you don't get your feet washed, you can't take communion tonight." But that would probably only drive away the people who do come to the service, but who refuse to take their socks off.

Anyway, are any of you in a parish where Holy Week services are mobbed? Do you have any suggestions for us?

Twenty-Four Hours

By the time I post this, I'll have known of Dad's death for twenty-four hours. It's been such a surreal day: I kept thinking, "What was he doing twenty-four hours ago? What was I doing?" Approaching 7:00, when he died, I became more and more restless, and finally hit on a ritual that calmed me. A little before seven, I lit a candle, started playing "Lark Ascending," one of his favorite pieces of music, and wrote in my journal. The entry turned into a letter to him about how much I miss him. The music and the writing carried me safely past the moment of his death, as well as the moment when hospice tried to reach me and couldn't. Writing this blog post will carry me past the moment when I arrived at the nursing home and found him, and then realized what had happened.

Last night I fired off a lot of e-mails to friends, and my inbox has been flooded with wonderful condolence notes today. I know I need to answer all of them (Emily Post, iirc, points out that this is one of the activities that carries us through grief), but today I didn't have the energy.

I should also answer each of the seventeen comments blog readers left me today, but I hope you'll all forgive me if I respond with a blanket "thank you." Each comment meant a great deal to me; I cherish all of them. So please consider that written seventeen times in response to each of your notes!

I slept horribly last night -- very predictably, I know -- and got up this morning feeling like I was underwater. I've had periodic crying spells through the day, which has dragged very heavily. Gary tells me that time moved more slowly after his own father died, and that's true for me now, too.

I've been on the phone with my sister almost every hour, and I've spoken to my mother and to various friends. My friend Katharine is canceling appointments of her own tomorrow to drive me around to the funeral parlor, the bank, the nursing home, the VA hospital, and so forth. If there's time, we're going to shop for yarn, and on Thursday evening, we're definitely getting together to knit. She said I should bring Dad's favorite music so we can listen to it.

My friend and colleague Chris, who'll be covering some of my classes this week, came over so I could brief him on lesson plans, and also shared some of his own experience from losing his first wife to cancer ten years ago. He told me the best way to deal with regret: by realizing that if we'd done the thing we regret not doing, we'd only regret something else we hadn't done.

I've had many regrets today: for things Dad didn't get to do, for things I think I could have handled better, and most of all for the fact that I wasn't there when Dad died. I wanted to be. I told Dad I wanted to be. He had other ideas. Everyone I've talked to thinks that he left when he did so I wouldn't see him die, but even if he was sparing me, I'm angry, because I didn't want to be spared, and I'm not really spared at all anyway, and how could he not know that?

The hardest part about last night wasn't seeing him lying dead, because he was peaceful and looked like he was sleeping. The hardest part was when the undertaker came and -- after gently asking me if I'd had enough time with Dad -- picked up Dad's body to move it to the gurney. Before that, he'd looked like my father, but when his limbs started flopping around and his head lolled to the side, he was no longer my father, but a husk. Maybe it's good I saw that; maybe it's closure. I don't know. The undertaker carefully arranged Dad on the gurney and wrapped a sheet around him. Before covering Dad's face, he said -- gently again -- "Are you okay with this?" I said I was; I thought I was, but when the sheet went over Dad's face, I started crying again. My father had turned from a person into a package. I kept crying while the package was zipped into a plastic body bag and wheeled out the door, but again, I'm glad I saw all that. I just wish I'd gotten to see the moment that led to it. I'm glad the nurses were there and could describe it to me.

Dad's donating his body to the medical school, so I know that more people will have the chance to learn about and benefit from his life. Every year the medical school has a memorial service for donor families, and the students read pieces they've written about their cadavers. I've heard it's incredibly moving, but only families are invited, so I've never attended one. Next year or the year after, I'll be able to do that. The medical students who learn from my father will, in a strange way, know him better than anyone in Reno except me and Gary, because he didn't have time to make friends here.

Sometime this week, my sister and I will work on an obituary over phone and e-mail. She can't come out here because she's taking care of Mom; there wouldn't be much for her to do, anyway. Instead of a funeral, we'll have an informal memorial service with Dad's close friends in Mississippi, but that won't happen until this summer at the earliest.

As sad as Liz and I are right now, we're glad we can concentrate more fully on Mom.

My uncle (Mom's brother) called today, and I had a nice long talk with him. And someone from Dad's assisted-living facility called. She told me that she wishes all the residents' families were more like me. "You were your father's best and strongest advocate, and he knew it. There's very little more you could have done for him."

That was good to hear, but of course I'm still haunted by what "very little more" I could have done, and whether it would have made any difference. I'll never know in this life, most likely, although I've been half-praying for a sign -- or something I can interpret as a sign -- that Dad's happy somewhere now. I asked my sister to share any dreams she has about Dad, and promised to do the same.

Twenty-four hours ago, I'd known for fifteen minutes that he was dead. There. I'm past the first day.

I've been wearing his watch -- ludicrously huge on my wrist -- since last night, and I'm wearing his favorite shirt-jacket, too, a fuzzy plaid thing that makes me look like a scarecrow, but makes me feel wrapped in warmth. Tomorrow, probably, Gary and I will start packing up his apartment. There are some things of his I know I want, and others my sister wants.

My sister sent me a lot of great photos of him. I'll post them sometime, but not tonight.

Peace be to you all.

Last Day of Hospice

Dad died tonight at about seven, when I was at home eating dinner. (We didn't find out until we went back to the nursing home at 7:30 and walked in on the body; hospice had left a message on my cell phone, but I'd missed it.) The nurses were turning him and he just stopped breathing. They told me it was quick and peaceful, and he looked peaceful to me and Gary and the priest from my church who came to pray with us, and who stayed until the funeral home had taken away the body.

I'll post more tomorrow. I'm exhausted now.

Rest in peace, Dad. I love you.

Hospice, Day Two

The nurse who came today told me that Dad's got a lot of stuff in his lungs that shouldn't be there: she strongly suspects he's developing pneumonia, which would downgrade his life expectancy from a month to a week.

I also learned that last night's nurse put him on the GIP program -- meaning hospice picks up room and board, but also that they anticipate death within two weeks -- and made him "Code Pink," which means, "Going downhill fast, needs extra attention."

The nursing-home people were as startled by all this as I was: they told me that they took Dad to the dining room for breakfast this morning, and he ate all his food (pancakes and ham). He refused anything for lunch when I was there, although I did get him to eat an entire cup of applesauce.

Since hospice is now paying the room and board that I paid for yesterday, I arranged to have the money we gave them go towards a private room -- it's only an extra $50 a night, a bargain under the circumstances -- and we got Dad moved to a corner room with more space and privacy. I'm home for dinner now, but tonight I'm going to bring our camping cot to Dad's room so I can stay with him. I don't want to miss any final moments of lucidity.

When I was there today, he was mostly gorked out, but (acting on the theory that he could hear everything, even if he couldn't respond) I'd told him that I was going to camp out in his room. An hour or so later, he suddenly opened his eyes and said very clearly, and with evident irritation, "You're doing too much! You're overdoing it! You're blowing this up into an emergency!"

"It's not an emergency, Dad, but it's a life passage,and I want to be with you. And if I decide it's too much, I'll go home, okay? It will be nice to have the cot here anyway, in case I want to take naps during the day."

He grumbled assent to that, but the nurse and I laughed about it later. "He's being a parent," she said, "worrying about you."

I'll be curious to see if he eats any dinner. He said he'd like to see Gary tonight, so Gary and I will go over with the cot etc., and then I'll drop Gary home before going back to stay with Dad.

I'm arranging for coverage for classes next week, at the hospice nurse's recommendation. "This is the time you have with him." Yup.

Hospice, Day One

We got Dad onto hospice today, although not without difficulty. The hospice guy actually told me that financially, it would be better for us to keep Dad on Medicare SNF coverage until that ran out (another seven days), but Dad asked to be on hospice yesterday, and we want their services, and I don't wait to wait seven days. I don't know how many days he has left, and I want them to be as comfortable as possible.

So here's the deal: Medicare covers hospice or SNF, but not both. Medicaid covers SNF once assets are low enough. Dad's assets aren't yet low enough for Medicaid, so Medicare will cover hospice, and the SNF room-and-board will be out-of-pocket until one of the following two things happens: 1) Dad's assets get down to Medicaid levels or 2) Hospice determines that he's within two weeks of death, at which point he goes to "general inpatient" status and hospice picks up the entire tab.

Dad's nursing home costs $7,000/month. They normally require each month's payment up front, but the business manager could see that I was reeling and very kindly prorated the rest of this month, so I only had to write a check for almost $3,000. This came out of Dad's savings, and it's a huge start towards Medicaid eligibility. That sum buys us another ten days, at which point we'll see where we are. He needs round-the-clock care, and can't possibly go back to assisted living.

Man. Dying's expensive! (Of course, if he were at home, Medicare would cover everything, but not everyone has the luxury of being able to die at home.)

He wasn't in great shape today. We made another little video to send my sister, but otherwise, he mostly slept. I'd hoped to get him outside today, since the weather was beautiful -- tomorrow we're expecting a snowstorm! -- but I don't think he'll ever get out of bed again. I hope I'm wrong.

Anyway, so I went to the bank and got the check and paid the fee and gave everybody lots of copies of end-of-life documents, and then we sat around waiting for the hospice nurse to come. Or, rather, I sat around, trying to read, although my concentration wasn't very good. I was crammed into a small space by Dad's bed, holding my book open with one hand and holding his hand with the other. He was asleep, but whenever I tried to work my hand loose, his grip tightened, so I just stayed there. One of the aides brought me a pitcher of water and poured me a glass, since I couldn't do it myself.

I'd been told that the nurse would come after four. I planned to go home for dinner after her visit, and then return in the evening. But she got held up at another nursing home and didn't show up until 7:00. She examined Dad, who wasn't very with it at all, and noted happily that his edema had gone down; he's not producing much urine, though, and he's not eating or drinking much. So his survival estimate's still a month, less if he continues to refuse food and liquid. (I got him to eat a little bit today -- a small bowl of soup and two spoonfuls of yogurt -- and I'm told he ate about half his breakfast, but I don't think he had any dinner at all.) Then she gave me more paperwork to sign, and then she went to the nursing station to write orders. It was now 7:40 or so. I was saying goodbye to Dad to go eat dinner when I noticed that he was gurgling when he breathed, so I raced down to the nursing station to ask the hospice nurse if this was normal.

She followed me back to his room, listened to him, and told me that the gurgling was mostly from his throat, not his lungs, but that she'd order some liquid morphine (given under the tongue) which would both make him more comfortable and "dry him out a bit." She went to take care of this. Dad and I waited, and waited, and he seemed more and more scared and miserable and disoriented. Earlier he'd clung to my hand even while he was sleeping; now he pushed me away whenever I tried to touch him. After fifteen or twenty minutes, I went back to the nursing station, where the hospice nurse explained patiently that morphine was an "emergency supply" and that someone had to trek down to the other end of the building to get it. I went back to sit with Dad.

The SNF nurse showed up with the morphine, in a plastic syringe like the one we use to give our cats liquid antibiotics. Dad calmed down a little, but a vein in his forehead was throbbing very visibly, so I raced down to the nursing station again and asked plaintively, "Is that normal?"

"Yes," the hospice nurse said. "Honey, sit down." She pointed to a chair. "Sit." I sat. She scooted her chair over to mine, took my hands, and started to pray, just like I do with my ER patients, and I started to cry, just like my ER patients do, and she reminded me that hospice will be there for me after Dad dies -- "I think you're going to need us" -- and she asked if my sister was "doing okay with all this," and I asked her to define okay.

"We're both still standing," I told her. "Under the circumstances, I think that's as okay as it gets."

We chatted a bit. She assured me that Dad's doing fine, that he's less uncomfortable than he sounds -- "he can breathe around that gurgle, don't worry" -- and that someone will call me if there's any dramatic change in his condition. "Now go home and eat dinner."

So I did. I left the building at 8:30, having entered it at 1:30, with only a short break to go to the bank. (I did swim for forty-five minutes before I went over there, though.) I think that both the SNF and hospice people are finding me higher maintenance than Dad is, but I also suspect that's kinda normal. I have a hunch that hospice is one of those specialties, like pediatrics and veterinary medicine, where the families are harder to deal with than the patients.

And if my frequent trips to the nursing station aren't normal, well, the SNF and hospice folks will just have to cope, poor souls. They're probably wishing they could give me morphine.

Clearing the Decks

Thanks so much for all the comments on my previous post! I really appreciate everyone's ideas and support.

I was with Dad today when the doctor came in and told him he had about a month to live. Dad seemed stunned, but quickly opted for hospice once he realized that the alternative was bouncing back and forth between the ICU and nursing homes. "Let me die," he said. "I'm tired."

Having made that decision, he acted on it with characteristic directness: promptly (and somewhat gleefully) dismissed all his rehab therapists, announced that he didn't want to eat anymore because his throat hurts too much -- that part freaked me out, I must say -- and demanded that I bring him wine, if not a martini.

I went through a cyclone of emotions: relief, followed by guilt at my relief, followed by grief, followed by numbness. I've settled back into relief, though, more or less. I've also cleared my own schedule so I can spend more time with Dad: my priorities right now are him, my job, and my own health. I was supposed to preach this Sunday, but got someone to cover for me (I'm not even sure I'll be going to church), and I also e-mailed my volunteer coordinators at the hospital to let them know that I'm taking yet another leave of absence.

This afternoon I went for a walk; after dinner, I went back to Dad's, bringing a small container (an empty spice jar) of wine and a comfortable lawn chair for myself, since the nursing-home chairs have been killing my back. It turned out that the doctor -- who hadn't stopped back to talk to us after dropping his bombshell; I know he's busy, but I find that a bit annoying -- had dutifully written a prescription for Dad to have four ounces of wine in the evening. The spice jar holds four ounces, so that worked out fine. The doctor had also written a referral to hospice (we're going with the one we met with yesterday, but will switch if we aren't happy). They'll presumably come on board sometime between tomorrow and Monday.

Dad and I had a nice visit. He was awake and coherent. He'd refused dinner, but I got him to eat a few spoonfuls of a nutritionally-fortified orange sherbet, in addition to the wine. Any food now makes him cough and choke terribly, and I can understand why he's reluctant to eat. But we had a good talk about all kinds of things: music, how hospice works, his current physical and emotional condition. He was worried that taking care of him would interfere with my job, and I found that touching.

My sister had asked me for some photos of him, so she'd feel more connected, and I'd taken some earlier in the day. Then I got the bright idea of taking a short video so Dad could say hi and tell Liz he loves her. She e-mailed me that she really liked the video, so Dad and I are going to try to send her one every day. I don't know how long that will last, especially if he's not eating, but it's a nice goal.

When we were talking about music, he told me about a Paul McCartney song he likes, "The End of the End," and asked me to look for the lyrics on the internet. (Hurrah for BlackBerry!) When I found the lyrics, the chaplain in me perked right up, as you'll understand the second you read them:

At the end of the end
It's the start of a journey
To a much better place
And this wasn't bad
So a much better place
Would have to be special
No need to be sad

On the day that I die I'd like jokes to be told
And stories of old to be rolled out like carpets
That children have played on
And laid on while listening to stories of old

At the end of the end
It's the start of a journey
To a much better place
And a much better place
Would have to be special
No reason to cry

[Whistling]

On the day that I die I'd like bells to be rung
And songs that were sung to be hung out like blankets
That lovers have played on
And laid on while listening to songs that were sung

At the end of the end
It's the start of a journey
To a much better place
And a much better place
Would have to be special
No reason to cry
No need to be sad
At the end of the end

I read Dad the lyrics. He said he doesn't believe in the better place -- he doesn't believe he's going anywhere -- but he likes the parts about jokes and stories and songs, and about how there's no reason to be sad. As long as I can remember, he's told us not to be sad when he dies; he wants us to have a party instead. I told him that Liz and I are sad anyway, because we love him and we'll miss him.

We also teased each other. When I told him that I wasn't preaching this weekend, or maybe even going to church, I said, "See, Dad, aren't you happy about that? You got me to stop going to church! It worked!"

He smiled, and later, when I asked him if he had any regrets aside from not sailing around the world, he sighed and said, "Having two daughters! How do you undo that?"

"I dunno, Dad. That's a tough one. You'd need a time machine."

We held hands a fair amount (when I wasn't wiping wine dribbles off his face), and I left after the nurse gave him his evening meds, which included a sleeping pill.

So, all in all, not a bad day. We'll see what tomorrow brings.

Yo-Yo

We've been up and down around here, with the latest emphasis -- unfortunately -- on down.

To recap: As you'll recall, Dad was released from the hospital Thursday after treatment for severe edema, and went to a nursing home. On Friday, I noticed that his left arm was swollen. It hadn't been in the hospital, and his right arm was normal. I mentioned it to the nurse and doctor, but didn't hear anything.

On Saturday, his right arm was really swollen. I pointed this out to a nurse, who called the doctor, who decided to send Dad to the ER to make sure he didn't have a blood clot. No, he didn't, thank God; but the ER doc, who'd seen Dad before, said, "You really ought to start thinking about hospice or palliative care, because otherwise he's just going to spend the rest of his life in and out of the hospital."

Back in the nursing home, Dad was sleepy on Sunday -- not surprising, since he'd gotten to sleep at 2 a.m. after the hospital adventure -- but cogent. Monday he did really well: ate all his lunch and dinner, went to PT, and (according to the doctor; the physical therapist disputes this) rolled himself back in his wheelchair from PT. The doctor, whom we like a lot, went over his lab values with me. His kidneys were doing great; his BNP was still high at 1475, but at least had gone down from the 1900 he had when he was in the hospital. I mentioned what the ER doc had said about hospice/palliative, and the nursing-home doc said, "Well, call hospice and make an appointment to talk to them, just to get your ducks in a row. You'll want to talk to the social worker, too. But's let give him a week to see how he does in rehab."

On Monday, I left much cheered. Dad was with it and reasonably cheerful, and had asked for his cellphone so he could make long-distance calls.

Yesterday, Gary and I went to the nursing home with the cellphone and a new portable radio for Dad. He was in horrible shape: very swollen and in some other reality. He recognized Gary, but thought I was my sister. He told us about the bugs who came to visit him, ten or fifteen at a time. They're his ancestors but look like Disney characters, and they help him by telling him when to go to sleep, but then they disappear under a mushroom. He had bizarre tremors and jerking movements. I summoned a nurse, who checked him over and found no immediate reason to send him to the hospital, but told me it was up to me. "This is baseline for him."

"Being this altered isn't baseline for him," I said, but meanwhile Gary was explaining that we didn't want to torture Dad by sending him back to the hospital, which was true, and the nurse said she'd call the doctor (although we never found out what came of that) and tell me if he advised rehospitalization.

I was in tears, but I was also hungry, but I also couldn't stand to leave Dad. Gary said, "Let's go home and have dinner, and you can come back later," and that was a good compromise, so that was what I did. I got back to the nursing home around 8:30 and stayed until around 10:30, just sitting next to Dad's bed. He was asleep, but talking and moving around, reaching for things; at first he kept reaching for something over his head, but then the arm movements changed and it looked like he was trying to turn an invisible doorknob, and meanwhile he was carrying on gibberish conversations I couldn't make out. He didn't know I was there. The nurse stopped by and showed me how he was a little less swollen than before; his extremities were warmer and his color was better, and she'd gotten him to eat some dinner, so that was all good news. But sitting there, trying to decode his dream or whatever it was, I felt absolutely helpless (which, of course, I was).

I went back home and crashed. Oh, I forgot to mention that the day before yesterday, we also took Harley and Figgy to the vet; today was Bali's turn. Harley's lost a bit too much weight, and Bali's gained a bit too much weight, so we're supposed to limit his diet (ha!), and Harley has a UTI -- what is it with UTIs right now? -- and has to take antibiotics for the next two weeks, and may also have early kidney disease. They've been tracking that for a while, but I really hope it's not actively developing. No more chronic medical crises, please!

Anyway, after today's vet appointment, we went to the nursing home to meet with the hospice lady, who was very nice. (In the meantime, the very diligent nursing-home doc called me to report that he's adjusting Dad's meds to try to get more fluids off him.) Gary and I spoke to her in a conference room, and after she'd asked me about Dad's history, she said, "It sounds like he qualifies for hospice." Then we all trooped down to Dad's room so she could meet him.

She introduced herself cheerfully and did a basic exam: looking at the edema in both arms and legs, listening to his chest. He was coherent enough to have a simple conversation with her. "He definitely qualifies," she said quietly. (I'd told Dad we were meeting with someone from hospice today, "just in case," but when I told him who she was, he grew suddenly quieter too.) When she was leaving, I followed her out into the hall and asked her for her assessment of how long he has left. "I'd say a month," she said. She emphasized that she could be wrong, but that estimate feels right to both me and Gary.

Gary and I went back into the room. Dad was being hauled out of bed -- a complicated process, rendered more difficult by his water weight -- to be taken for a shower. When he got back, he was pretty out of it again, and showed no recognition when I said, "I love you, Dad. I'll see you tomorrow."

Leaving, I was in tears again. I got hugs from several people at the nursing station (including someone from church who works there), and managed to have a helpful conversation with the social worker about finances. Medicare covers hospice completely, but won't cover hospice and an SNF, so if Dad stays in the nursing home -- and I can't imagine his being able to go back to assisted living -- we'll have to use his assets to pay those costs until he's eligible for Medicaid. The social worker gave me the Medicaid application.

Oh, I've also had periodic conversations with Dad's physical therapist, who says she can hardly get him to do anything because he's just too weak. I gather speech therapy's going a little better; I don't know anything about occupational.

But, barring a semi-miraculous turnaound of the type Mom pulled off, I suspect that on Monday, we'll be putting Dad in hospice and arranging to let go of the assisted-living place. ("Another move," Gary said gloomily as we walked back to the car.) I hope I'm wrong about all of that.

Meanwhile, the good news is that Mom's back home and doing decently, I think, although both she and my sister are being slightly guarded in their reports. Today, though, my sister reported that she'd given Mom a shower and washed and styled her hair, so they were both feeling cheerful about that.

Yesterday I swam, and today I walked. I'm knitting my first-ever baby blanket, a rush job for a shower a week from Saturday, for a young woman whose first two pregnancies ended in miscarriage and stillbirth . . . so the blanket's also a prayer shawl, woven with fervent requests for this pregnancy to end with a live, healthy birth.

This week is Spring Break, but I'm exhausted and strung out, with that scratchy feeling in my throat that comes from crying too much. Helluva way to spend a vacation.

Maybe Dad will have bounced back tomorrow.

Today's exactly five months since he moved out here. I'm grieving for everything I hoped to do with him that I haven't gotten to do. My church friend at the nursing home that that they could arrange to drive him out to Pyramid Lake in a wheelchair van, but at this point, I'm not sure he'll even be able to tolerate or enjoy that.

At this point, I'm just hoping that sometime before he dies, he'll know who I am again.

Upswing

Today went much better, even though I'm in the middle of an absolutely miserable allergy attack which has, so far, remained impervious to Claritin.

Today I got phone calls from Dad's speech therapist, occupational therapist, and doctor, so the nursing home's really on the ball about getting his therapy program rolling. The doctor enjoyed talking to Dad, and said that while he qualifies medically for hospice, they're going to try an aggressive rehab program first, to see if Dad can go home. Works for me! The doctor did say that Dad's lungs are "junky," which is a bit worrisome, since he just got out of the hospital to get rid of lung junk. They're going to do another BNP on Monday; I'm curious to see if that's improved.

I spent the morning and afternoon doing work stuff, and then swam for an hour. (Yay!) I went to see Dad around 5:00, when he's often, lately, been completely tuckered out from the day. But I found him sitting up in his wheelchair and very coherent, although he said that last night was the worst night's sleep of his life. His lunch tray was still on his bedside table, and it looked like he'd eaten a lot of it. I wheeled him down to the dining room for dinner, and he ate a lot there, too, and chatted with the two other people at his table.

I couldn't believe how much better he seemed today than yesterday! I'm much heartened, although -- based on experience -- I wouldn't be surprised to find him completely done in again tomorrow. But a decent day is good; we'll take it. (One day at a time, and so forth.)

I left at seven. The evening metamorphosis seemed to be underway: there were plaintive howls for help from the room across the hall, and the wheelchair brigade was collecting around the nursing station. But when I walked through the crowd, the residents in the wheelchairs smiled at me and said hello, instead of looking lost and terrified. (I hope I didn't sound uncompassionate in yesterday's post; I ached for all of them, but the scene was still chilling.)

I hope they don't become lost and terrified as the evening progresses. I hope Dad doesn't, either.

Nursing Home Blues

So Dad went to the nursing home today. In the afternoon, he was completely exhausted and out of it, but I was really impressed by the place. There were lots of people bustling around -- residents, staff, and visitors, including kids -- and we got prompt and attentive service, and I met Dad's doctor, who hasn't visited him yet but who's board-certified in geriatrics, hospice and nursing-home administration, and promised to evaluate Dad for hospice. The doc's also very personable, which is a plus for anyone, but especially for Dad, who thrives on social contact. Dad's roommate was nice, too.

I zipped home to pick up Gary, and we delivered some stuff from Dad's apartment to the nursing home. Dad was a little more awake, but very confused. He asked plaintively if he was going home with us, and I had to tell him that he couldn't. He asked if I'd come back in the evening, and I told him I'd be back around seven, after dinner. His left arm has become very swollen since yesterday, which alarmed me.

About half an hour after we'd gotten back home, my phone rang. It was Dad. "I'm scared. I just woke up, and I'm scared!" I promised him I'd be there at 7:00. Under the circumstances, I was amazed that he'd a) remembered my number and b) figured out how to work his new phone, which has smaller buttons than he's used to and also requires the caller to dial "9" to get an outside line.

I went over after dinner with a teddy bear for comfort and some family photos for familiarity (not that he can really see them, but I thought he might recognize the shapes). After dark, the nursing home had been transformed into an eerie shell. The halls were empty of both staff and visitors; residents in wheelchairs had congregated, gaping and muttering, around the nurse's station, which was manned by a lone LPN. The wheelchairs and their occupants were everywhichway, as if they'd all rolled downhill down the halls and fetched up in that one spot, and as I passed, the residents muttered more loudly and reached out to me with shaking, skeletal hands. Meanwhile, someone was screaming down the hall. It was like a scene from a zombie movie. (I'm not trying to be unkind here -- Dad's as zombieish as anybody, at his worst -- but I was really expecting George Romero to pop up at any second and yell, "Cut!")

I got to Dad's room. He was in the bathroom. I turned on his radio so he could have some nice soothing classical music, and his roommate asked me to turn it off. Dad's aide came to help him back to bed, and there ensued a string of technical difficulties. She'd rolled his entire O2 concentrator -- one of the big ones -- to the bathroom so he could breathe, but she had to unplug it to get it back to his bed, so he was announcing in tones of increasing panic that he needed air while she pushed the wheelchair and I pulled the concentrator back to his corner and plugged it in. Then the tubing wasn't long enough for him to transfer back into bed comfortably. The aide went to get longer tubing, but wound up disconnecting the tubing and not having the right parts to put it back together. Luckily, Gary and I had put Dad's portable concentrator in his closet (I didn't want it out in the open), so I put him on that until she could find the right connectors, which she eventually did. While she was gone, Dad looked at me and hissed, "What a godawful place!" He was much more cogent than he'd been during the day; I wish it had been the other way around.

We got him into PJs and back into bed. He wanted his meds, which he usually takes between 8 and 9. I went looking for his nurse, and couldn't find anybody. I went back to the room and sat with him a while, and then I heard the nurse's voice and shot out into the hallway to waylay her. But she was already in with another resident, so I glumly told Dad we'd have to wait.

While we waited, I listened to her fielding crises in the hall. She was trying to mix an IV for someone; her aide had vanished; the guy across the hall was screaming "Help!" while she called out, "Just a minute, I'm coming, I'm fixing medicine, I'll be right there!"

Finally she arrived with Dad's meds, and was very kind and patient while he took them. I commented that they seemed to be understaffed tonight, and she told us wearily that she was working a fourteen-hour shift, because another nurse hadn't shown up and they'd asked her to cover, and then the aide had vanished. She was amazingly calm about all this and apologized for the delay in Dad's meds, which evidently he'd been supposed to get at five (it was now nine). When I told her that he was in fact getting them on his usual schedule, she seemed cheered.

Oy. Well, I hope things go better tomorrow. Some of this was just new-place snafus -- we now have an oxygen tube that will stretch to China, if necessary -- and I certainly hope the understaffing isn't chronic (although it may well be, given the nursing shortage). Tomorrow Dad will be evaluated for rehab and will also be seen by the doctor. I'm going to wait to see how all that goes before I pass judgment.

Before I left, Dad told me he was glad I'd come over again. I was glad, too.

The Conversation

Last night when I got home from the hospital, I sat down to work and instead wound up obsessing about Dad and hospice issues. Among other things, this meant that I had to grade fourteen papers this morning before I went to work, but it was also a sign, I thought, that I should talk to him about it (which many people have been urging me to do).

So this evening when I went to visit, I asked him how he felt about going to the nursing home tomorrow (he's supposed to be transferred at 1 PM). He said he felt neutral towards both that and everything else. He's been sleeping most of the time, not eating much, and very lethargic, reporting some shortness of breath and pain even at rest: classic end-stage CHF symptoms. He sounds doubtful that he'll do well in rehab. So am I, although I'd love to be surprised. I asked him what he hoped for, what would make him happy. He told me that he wanted to be better, but that if he couldn't be better, he wanted to be out of pain.

I said, "So if there's a program that would focus on pain relief and quality of life, you'd be interested in it?" He said he would, and I told him about hospice, emphasizing that it didn't mean giving up, that he'd still be given his cardiac drugs for comfort, and that he could leave the program if he wanted to.

He thought it made sense. "I don't want to lie around being a test tube," he told me. "I know I'm going to die. I'm not afraid to die." I asked if I had his permission to request a hospice consult, and he said yes. So I'll get that ball rolling as soon as he gets to the nursing home tomorrow.

It was a huge relief to talk to him about it; I felt like we were no longer dancing around the elephant in the living room. I also feel like the last thing I can give him is the best possible death. He said, "I've lived a pretty full life," and I asked him what he most regretted not being able to do, and he said that he's sorry he never got to sail around the world, which was one of his dreams for years. That won't be possible now, of course, but I'm hoping that I can get him out to Pyramid Lake, which he loves, and maybe up to Tahoe for a boat ride.

I was afraid that he'd be hurt or upset if I raised the issue of his dying, but he said it was a relief. It's been hard to have good conversations with him with that issue in the way, and he said he feels better when he can connect with me.

While we were having our own conversation, the guy in the next bed was being informed by his doctor that he has 3-4 months to live. The physician did an exceptionally good job breaking the news -- she and the patient clearly feel respect and affection for one another -- but this man's much younger than my father, and he was in shock. I went to talk to him and his wife at one point, and when I came back, Dad (who felt very sorry for his roommate) said, "That conversation you had with him, were you being . . . what do you call it, what you do in the ER?"

"Being pastoral?"

"Yeah, I guess. Were you doing that?"

"A little bit. Not as much as I would if I were wearing my chaplain's badge; I mean, I didn't offer to pray with them. But when I asked him, 'How are you getting through this?', that's the quintessential chaplain question. You try to help people find their sources of strength." Dad nodded, and I said, "So, Dad, what's your source of strength?"

"You," he said. "And bits of life, like listening to the news on NPR."

I told him how sorry I am that his time in Reno has been so horrible. I so wanted him to be happy here and have fun, and instead it's been one bout of misery after another. I cried a little bit, and he pulled my head down on his chest and stroked my hair.

And then he went to sleep, and I came home for dinner. Gary and I went to the supermarket, where I was very spacy. But I'm glad the end-of-life issue is out in the open now.

Existential Distress

I had an odd conversation with my father tonight. He asked me to talk to him about the difference between sin and evil, which I did very cautiously, emphasizing that I was only sharing my own opinions. Then he told me that evil doesn't matter anyway, because both the participants and the victims become numb to it. He proceeded to go off on a long existential riff about how life is meaningless, how there's no ultimate reality, and how the world is just an illusion. He allowed as how he loves me and my sister, but then said, "But how important are you, really? You only have the meaning I assign to you."

I gently pointed out that my sister and I are also important to other people, and asked Dad if he wanted to talk to a chaplain. He said, "I am talking to a chaplain." Before I left, I asked the nurse to ask the chaplain to stop by anyway: it may be easier for a stranger to make sense of all this than I can, and anyway, chaplains aren't supposed to minister to family members any more than surgeons are supposed to operate on their friends and relatives.

It turns out that there are articles about existential distress at end of life. There seems to be a fairly extensive literature about whether such patients should be sedated out of their unhappiness.

Dad's nurses are happy with how physically strong he is: evidently he transferred himself to a wheelchair today, and he lifted himself by his grab bar when they were changing his bed, although the effort left him gasping for breath. He may be transferred to a nursing home as soon as tomorrow. We're not sure where he's going -- the VA place or the community facility I requested -- but wherever he lands, I'm going to see about getting some spiritual counseling for him.

And yes, I know: this is what hospice is for. All the medical folks I've asked, though (at least those who know Dad personally) have frowned at me, as if I'm being undaughterly for raising the subject, and said, "Oh, no, it's not time yet!" Tonight I asked Dad if he thinks he's dying, and he doesn't think so, either.

Over dinner, I discussed Dad's distress with Gary, a card-carrying existentialist. We decided that the meaning of life is that motto so beloved of emergency personnel, environmentalists and Girl Scouts: "Leave the place better than you found it."

Works for me. I think that's a lot of what the world's spiritual teachings are about, when you get right down to it.

Quality Time

I had a pretty good visit with Dad today; at least, I think so, and I hope he does. I offered to read from The Once and Future King, but instead he requested a gigundo hardcover history of the Reformation -- which, for some reason, I can't find on Amazon (ah, never mind, here it is) -- so I raced back to his place to get it and then returned to the hospital. My father, the fundamentalist atheist who knows more about church history than most priests I know!

As it turned out, though, he was too sleepy to listen to me read, so instead we listened to some jazz on NPR, and talked to both my mother and sister on the phone, and I got a little knitting done. Dad's nurses are impressed by his upper-body strength -- he lifts himself with a hanging bar when they're changing sheets and such -- which would seem to bode well for PT. His vitals are good. He has some blood in his urine, which they think is just irritation from the catheter, but if that clears up, he can be discharged any time.

My friend Sharon called today to tell me that the nursing home closest to us has a revamped, and supposedly very good, rehab program, so I'm going to request that he go there, since it's also the place I'd want him to be if -- as we all fear -- he flunks rehab and needs to be in a nursing home full-time. He hates the idea of going to one at all. I'm telling him that he has to work very hard at PT to have any shot at going home. I don't expect that to happen, but he's surprised us before, and look what Mom just pulled off!

If he does flunk PT, it will be time to start thinking about hospice. But I'm not quite there yet, and I'm certain that he isn't, either.

Meanwhile, Gary's been coughing for almost a month, since the most recent Palo Alto junket on February 19, and finally allowed today as how maybe he should see a doctor. So I'm going to try to get him squeezed in tomorrow, when I also have to talk to Dad's case manager.

And now I have to grade like a maniac.

Update-A-Rama

Dad's out of the ICU and in a regular hospital bed (with a gorgeous view, which he unfortunately can't see). On Monday, probably, he'll be transferred to a rehab place. The social worker called me yesterday to find out where I wanted him to go. I said, "Wherever they have the best PT," and she told me that she isn't allowed to express opinions about facilities, that it isn't ethical.

I blew a gasket. "I don't know this stuff! You know this stuff: that's your job! I'm really tired of having medical people tell me that they can't give me advice, that I have to decide things like whether my father should go to the hospital. The paramedics on Monday night told me it was my decision! How should I know? Isn't that what they're paid for?"

The social worker listened to all of this very patiently, and suggested that I research nursing homes over the weekend.

"I don't have time for that. I don't have time to visit five different facilities!"

I finally told her to send Dad where he was last time. It's yucky -- all nursing homes are -- but they had excellent PT, and someone had told me it was the best in town. If he winds up having to stay in a nursing home permanently, which is my fear, I'll do the research. This buys me a few weeks, probably, to catch my breath.

Meanwhile, my sister called yesterday to say that Mom was off to the ER again with high potassium, although when she got there they couldn't find high potassium but did find -- you guessed it -- a UTI, so they sent her back to the nursing home with antibiotics. I don't know if this has changed her going-home date of Friday. I haven't talked to her for a few days, which makes me feel lousy, and I have to call.

Dad feels lousy because he has nothing to look forward to. I tried to have a conversation about things he could look forward to -- if he can ever ride in a car again, I want to take him to Pyramid Lake, which he loves and has been wanting to visit since he got here -- but it didn't cheer him up much, and who can blame him? He misses the quality time he spent with my sister (she used to make him dinner and stay to talk and listen to music once a week), and I feel bad that I haven't been doing that for him, but on the other hand, when have we had the chance?

Gary and I went to sit with him today for a few hours, but he dozed and we couldn't think of much to say. Tomorrow I think I'm going to start reading to him; he loves The Once and Future King, as I do, so I'll ask him if he'd like to hear it.

Today was better than yesterday, though. Yesterday I hit a wall: I felt absolutely exhausted and drowning in uncompleted tasks, especially at work (where everyone's being very kind). I felt like I wasn't doing anything well, like I was paying insufficient attention to Dad, Gary, myself, and my job; a colleague to whom I vented said sympathetically, "Well, when everybody's mad at you, at least you know you're dividing your attention evenly." Gary and I had planned to go to a concert last night, because several dear friends were performing, but I just couldn't. I arranged a ride for him, put the fireplace DVD on the flatscreen, and settled down with piles of grading, a pot of tea, and chocolate. It was exactly what I needed, and I've ordered a DVD of the waves at Big Sur for my virtual spring break.

This morning I felt sufficiently caught up to go to the hospital. Yeah, I know: I should have been researching nursing homes instead, but I decided to distract myself with other people's problems. The case manager who was there this morning saw Dad and Fran when they were in the ER in October, and he sent me first thing to visit an elderly patient and his daughter. The patient was exactly my Dad's age, had lived in Dad's assisted-living place, had then moved to the nursing home where I'll be sending Dad for rehab -- "he went there for rehab, but it didn't do any good," the daughter told me sadly -- and was now in the ER for issues very similar to Dad's. The daughter was making plans for hospice. We commiserated. I went back to the case manager and said, "That guy is my father."

"That's why I sent you to talk to them," the case manager said gently, although he can't have known about the assisted-living and nursing-home synchronicities.

So much for distracting myself with other people's problems.

I'm still trying to process this, which is probably one reason I didn't have much to say to Dad today. "Hey, Dad, I met someone just like you whose daughter is putting him into hospice! Small world, huh?" At some point, we need to have that conversation, but I'm hoping against hope that a miracle will occur in rehab.

I'm now babbling. Anyway, after we left dad, we went to Office Depot so I could console myself by browsing. Stationery stores make me happy. I bought a new clipboard case for the hospital, since I've had my old one for four-plus years and it's showing its age. Then we came home and ate dinner, and then I did a bunch of grading. I have lots more to do tomorrow, but the stack's a little less terrifying than it was yesterday morning.

Good stuff: YJHM accepted a second poem, and I submitted two others to other journals. I've gone swimming twice this week. I think I helped at least one person at the hospital this morning, and several staff thanked me for trying to help someone else -- by calling an outside agency -- even though the patient walked out before I could arrange the help. I felt good about my own efforts, though. That's all I can control.

And the world still contains chocolate.

Another Day, Another Ambulance

Yesterday was a very busy day: I upped Dad's care level in the morning -- bringing the bill to the maxiumum Gary and I can afford -- got yelled at by the assisted-living nurse about his meds management in the afternoon (she wants them to do it, which we simply can't afford) -- and went to his apartment in the evening to make sure he'd taken his bedtime meds, since he wasn't answering his phone.

I found him profoundly disoriented (as in talking to people who weren't there) and ramming his wheelchair into furniture to try to get to Congress to work on the energy bill. Righto. Dad's politically engaged even when he's demented. After some dithering, I called 911, who came and said that his edema was halfway up his thighs and that his lungs were almost full of fluid, and oh yeah, he had pinpoint pupils which meant he'd overdosed on his pain meds, which made me feel horribly guilty, although now it turns out he may have taken the normal amount but been unable to handle it because his kidneys aren't doing so well.

Off to the VA ER. Up to ICU, where they said he'd stay overnight while they put him on IV lasix to try to get the fluid out of him.

When I called this morning, the nurse told me the lasix isn't working well. He's had very little urine output. He's oriented but still groggy, with good O2 sats but so-so BP. He'll stay in the ICU at least through today. I'll go over there in a few hours; right now, I'm still recovering from last night.

Oh, and yesterday I also swam, taught two classes, met with three students, took care of paperwork at the VA, picked up my own meds from the pharmacy, and, uh, I think there was something else, but I forget. Oh, right: we also met with the social worker in the morning.

Everything's fading into a blur in through here. But I have a purring cat on my lap, which helps.

A Little Better, Thank You

Dad felt terrible this morning, but called me this afternoon to say he was feeling a tiny bit better. In the meantime, I'd gone over there, coaxed him into eating some lunch, and instructed the caregivers to bring meal trays to his room (without dairy, which he can't have while he's on the antibiotic, but with extra gravy, because he finds "juicy" food easiest to eat). I also changed the dressing on his leg -- the gauze had slipped down around his ankle -- and took his temp and BP: both low, but not drastically so.

We're meeting with the home-healthcare social worker tomorrow. The agency's been threatening to discharge him, since they say he doesn't need nursing care. Since he now has open wounds, however minor, and an infection, I hope to make a case for getting him recertified (which several of his therapists are trying to do anyway).

We had a good church service this morning, with a liturgy-committee meeting afterwards. We divvied up preaching dates, and I asked for (and got) the Great Vigil, my favorite service of the year. I've preached that service twice before, and I love it.

Also, I'm almost -- if not quite -- caught up on grading, although I'm behind on lots and lots of other things.

Two more weeks until Spring Break, when I plan to get tons of sleep. And exercise! And maybe chocolate, even though it's Lent! Lent is always when I most need chocolate.

Go, Me

This morning I sat down to calculate how much care Dad needed and how much it would cost, which turned into a ridiculous exercise in rabbinical interpretation ("needs help with transfers" and "needs help to get to meals" are two different categories, but since the help Dad needs to get to meals includes help with transfers, do we need to check off both categories -- with their attendant expensive points -- or only the second?). My first effort put him off the chart, but I managed to scale back to a level that might be feasible if the VA comes through with a decent pension and if my salary doesn't wind up getting cut in the budget crunch. These are both big ifs.

The most expensive category -- incontinence -- is also the newest; disorientation is new, too. I found myself wondering if Dad could have a UTI, which could cause both of these symptoms and is treatable. An infection would also help account for his recent exhaustion. Elderly people often don't have traditional UTI symptoms, and the infections can be extremely dangerous: Gary's father was admitted to the hospital with a UTI twelve hours before he died, and that was the diagnosis that put my mother in the hospital most recently, too. In her case, the infection had gone into her bloodstream, and someone at the nursing home told my sister that this by itself would account for her disorientation, which can take a long time to wear off.

I called a VA advice nurse, who agreed with me that Dad should be seen. So I went to his place, woke him up from his nap, and said, "We're going to the VA now to get you checked out for a UTI."

I took him to the ER, since nobody else is around on weekends (and since it would take weeks to get him in to see his primary). They weren't very busy, luckily, and took him right away. The ER doctor agreed with me that we should look for something treatable, even though they can't do anything about Dad's "end-stage heart disease." I hadn't heard that phrase before, and it chilled me. My head knew what we were dealing with, but my gut hadn't quite gotten the message yet.

But, lo and behold, Dad does have a UTI! (He also has tremendous amounts of fluid in his lungs, but the doctor told me they can't do anything about that, because it's a function of his untreatable heart disease; he's already on lots of Lasix.) So we went home with antibiotics, after the doctor had told me that yes, a UTI could account for the symptoms he's been having.

I was inordinately proud of myself for making the right call, and Dad was glad that he has at least one condition that we may be able to make go away. While we were there, we also got new dressings for his skin tears -- his skin's very fragile, and he's covered with bruises and scrapes even though he's not on blood thinner -- and some foam to protect him from his plastic oxygen cannula, which had rubbed raw spots behind both ears.

We only spent a little over three hours there, which made it a very successful ER trip indeed. I was especially happy because I felt like such a fool after calling 911 in Palo Alto.

Once we got back to Dad's facility, though, things got more complicated. I got him back to his room, doled out his meds for the week (including the twice-daily antibiotic), and gave him tonight's meds with some Ensure and applesauce, since he has to take the antibiotic with food and dinner was over. So far, so good. Then I went to instruct the caregivers to make sure that a) he takes his meds for the next ten days and b) he takes them with food.

The caregivers explained that they can remind him to take his meds, but they can't give him his meds, or even stay to watch him take his meds, unless a) they have a meds list signed by his doctor and b) all the meds are in their original bottles. If I've put the meds in trays, the caregivers don't know what all the little pills are. In other words, unless they're managing every aspect of Dad's meds, it's strictly hands off. And if they manage everything -- you guessed it -- the cost goes through the roof. This isn't just facility policy: it's state law, probably because of the strict division maintained between assisted-living places and SNFs.

Aaaaargh! How can it be this complicated to make sure that an old man with an infection takes his antibiotics? The caregivers nodded sympathetically. They think the system's crazy too, but they're bound by red tape and liability issues.

I'll talk to the nursing director about this on Monday, but I don't expect anything to change. In the meantime, I'll call Dad twice a day to remind him, and they'll remind him too, and I'll probably wind up going over twice a day (at least for the first few days, until, with luck, his head clears a bit) to make sure that he's taken the pills.

I'm really glad we only live two and a half miles away.

Ack

Today I spoke to the homecare social worker, who agreed that the PT had behaved completely inappropriately, but also said she'd given us completely incorrect information. Group homes -- the good ones, anyway -- are more expensive than assisted living, not less, and there's something like a two-year waiting list for the waiver program that would make them affordable. So if Dad can't stay where he is, his only option will be to go into a nursing home, apply for the waiver program, pay his assets down until he's on Medicaid, and wait to see if he gets into the waiver program and can move out of the nursing home into a group home.

Gary and I talked about the possibility of paying up to $800/month ourselves -- although that would be very difficult for us to maintain -- to keep him where he is. What could we get for that? Could we get enough services?

In the meantime, I swam, gave a presentation to a local elder-college group, had the final inspection of the old apartment (which went fine, and my key ring is now pounds lighter!), and called Dad to see if he wanted to go to a concert with us tonight. He decided he did. He'd gone to the exercise class at his facility today and enjoyed it. Much cheered, I told him that Gary and I would be there around five to have dinner with him and take him to the concert.

But when we got there, he was sitting semidressed in his wheelchair. He didn't want to go down to dinner, let alone to the concert. I managed to coax him into eating some applesauce and an Ensure and checked his temp and BP -- both of which were fine -- and also rebandaged a wound on his arm that had reopened. He bleeds very easily these days, and his arms are horribly bruised.

As we were getting him changed into his PJs, he had an accident, so we summoned a caregiver to help get him cleaned up. This is the third time this has happened, so she's recommending Depends. Lots of people there wear them, but Dad won't be able to get in and out of them himself . . . which already, by itself, puts his care level above what we can afford (at least, if I'm reading the contract right: there are complicated point systems for different kinds of care, and numbers of points translate into drastic jumps in cost).

I'm afraid that putting him in a nursing home will kill him, although my sister and Gary both think that's starting to look like the only option. I don't know what to do. Thank God we're meeting with the social worker on Monday.

Oh, and before he could go to a nursing home, he'd have to be admitted to a hospital for three nights. I'm sufficiently worried about his sudden downward spiral that I'm tempted to take him to the VA ER anyway, just to see if they can find something that can be treated, but he'd fight me tooth and nail on that.

On the plus side, I had a decent conversation with my mother today, and gave a well-received presentation to a local elder-college group, and swam.

Thanks to everyone for the comments, especially about how these dreary narratives are helping you. That helps me, because I feel like the most boring person on the planet right now!

Assisted-Living Politics

After I heard from Dad's physical therapist this morning, I called the sales director at the facility -- she's one of the people I really like there -- to tell her what we'd been told about Dad needing more care. She promised to confer with the two nursing directors and schedule a meeting with me.

I spent most of the morning on the phone dealing with other Dad issues (mostly trying to reschedule various VA appointments), as well as attempting to straighten out some insurance issues of my own. Then Gary and I went to Dad's old apartment to get his remaining belongings out of there (except for some stuff we're leaving for the social worker to give to folks who might need it). We tossed a lot of stuff and packed up the rest. I became weepy when we threw out his old tools. They probably aren't operational or safe anymore, and even if they were, he'd never use them again, but they represent his loving and never-ending repairs on the sailboat he lived on for twelve years -- the happiest time of his life, it seems to all of us now -- and it was really hard for me to consign them to the trash.

We had to make two trips, and after we dropped the first load off at our house, we went by Dad's place to check on him, since he hadn't been answering the phone. He hadn't answered because he hadn't heard it, although he seemed more or less okay otherwise. On my way out, I stopped in to say hi to the sales director, and she called the two nursing directors into her office, and we had the meeting right then and there.

It turns out they were furious at the physical therapist for talking to me and Dad (and getting me, at least, pretty upset) without talking to them first. They don't agree that Dad needs to be in a group home, and they felt they should have been consulted about any extra needs he had before someone else told him he had to move again. They'd already called the home-health agency to complain -- although they also said the PT is very good at her job -- and they promised to work with us to keep him there within our budget. This is going to be a challenge, since my estimate is that he needs a minimum of $500 of extras a month (and the outside home-health agencies I've been pricing aren't much better), and even the base price already has us strapped. But Gary and I had already decided to keep him there at least another month, just because we're all so tired of moving. I could hardly find a good group home and get him moved in before March 1, anyway.

I felt somewhat reassured after the meeting, although of course it's hard to tell how much of their motivation was concern for Dad (and me) and how much was desire to keep business in a tight market. They may not be able to sort that out themselves. Also, Gary and I agree that there's a clear and consistent good cop/bad cop dynamic: one of the women in this trio is a real hardliner about charging every penny for every service, whereas the other two seem more willing to be flexible. Again, I don't know how much of that is simple personality differences, and how much is strategy. But I felt like they'd heard us and like Dad would be getting more attention: for instance, they said he'd expressed interest in the daily exercise class, so they're going to send someone up to his room every day to invite him down.

We went back to the old apartment, finished packing up, and headed back to Dad's place to bring him some clothing he'd left behind. I'd known that he was going down to dinner, and I'd expected the caregivers to bring him back up to his room and make sure he'd successfully switched from his portable concentrator to the big one.

To my alarm, we found him in his scooter in the hallway outside his room. Our best guess is that he drove himself back upstairs after dinner; a caregiver we talked to later said she'd told him to press his call button when he needed to go back to his room, but that he hadn't done so. When we found him, his concentrator was beeping a "no breath" alarm because he'd taken off the nosepiece, because he was trying to take off his shirt, which probably means that he thought he was aleady in the room and was trying to change into his pajamas. His call button had fallen on the floor next to the scooter. I doubt he'd have been able to retrieve it by himself. Someone would have come along eventually, of course, but he never should have gotten stuck there in the first place.

I got him back on air, and while Gary carried things up from the car, I got him into his wheelchair. The PT told me he's now having trouble transferring, and I think so, too; I'm not at all sure he'd have gotten into the wheelchair safely without me there, although of course he insists he's fine. When I got him into the room he asked me to help him arrange his meds for tonight and tomorrow morning, and I discovered that he'd never taken this morning's meds.

So Gary and I are concerned, to put it mildly. I'm wondering if we should try to get him into a group home sooner rather than later. Gary's wondering if we should go straight to a nursing home, although I'm loathe to take that step.

When we spoke to the caregiver, she seemed pretty upset by how we'd found him, and said she'd make sure someone checked on him after dinner from now on. She also said that he'd expressed worry about extra charges, so he may have tried to get himself back after dinner to save money. I have to make him understand that there won't be extra charges we haven't agreed to (a point the three women emphasized in our meeting). I'll call the sales director tomorrow and see what's going on. We're already meeting with a social worker on Monday, and she's supposed to be working on expediting our application for a VA pension. Even if we get it, it's not likely to be much, but every little bit helps.

I feel wretchedly inadequate to this situation: although I spent almost all day working on Dad's behalf, he couldn't see any of that, so I think he feels neglected, and I feel as if I should have done a better job of shielding him from financial worries so he won't do dumb things and endanger himself, and I also feel caught in the middle between the assisted-living staff and the home-health folks. (The assisted-living staff pointed out that this is precisely one of the reasons the PT should have handled the situation differently.) And I'm hoping I didn't get the PT in trouble, because I like her.

What. A. Mess.