The Day Mom Died

Mom died at 7:20 Eastern Daylight Time this morning. Last night, I wound up sleeping for hours on a couch in one of the family lounges; Liz catnapped in the recliner next to Mom's bed, and was with her all night. If anything, she seemed better first thing this morning than she had last night: her extremities were warmer, and she looked like she was sleeping peacefully. We consulted with the nurses, who thought Mom still had more time left and said it would be fine for us to go down to the cafeteria for breakfast; they'd call us if her condition changed.

We went downstairs and pigged out on lukewarm steamtable eggs and sausage. As we were coming back upstairs at 7:20, Liz's cell rang. I heard her say, "Yes, we're coming back upstairs now," and then -- her eyes widened, her voice disbelieving -- "she passed?" Mom's nurse had gone in to check on her at the end of the shift; she was still the same. For some reason, just a few minutes later the nurse decided to look in on her again before going home, and in that brief interval, she'd died.

One of the last times I visited Philly -- I don't remember if it was at Christmas or during the previous summer -- Mom and I were talking about death, and I asked her if she felt like she was dying. She said she didn't. I asked her to let me know if she ever thought she was, and she said she would.

Yesterday, when she could barely speak at all and when we were never sure we'd heard her correctly, both Liz and I thought we heard her say, "Susan, I'm going to die." A few minutes later, she said, much more distinctly, "Tomorrow!" At the time, I interpreted this as her meaning that she was going to die today; Liz wasn't sure.

Now I think I was right, and I think she was keeping the promise she made all those months ago. And if she died without anyone in the room, not even a nurse, well, I have to believe that's how she wanted it.

So, anyway, Liz and I cried, and all the nurses hugged us, and the doctor who'd treated Mom on the medical floor, before she was admitted to hospice, stopped by and hugged us and told us he'd phoned her primary-care doc, who'd been taking care of her for years. Then the funeral home came to get her and we said goodbye, since she'll be cremated, and we watched them wheel Mummy Mommy out of the room.

We came home to the house, sobbed some more, had lunch, and went to the funeral home, where I used too much of the estate's money (although I did offer to pay for it myself) to purchase a memorial pendant containing a smidgen of her ashes. Morbid, I know, but my sister and BIL were very kind about it. Now I'm kicking myself, since I'll have a lot of Mom's own jewelry, pieces intensely meaningful to both of us and prettier than this thing. Maybe I'll put it on a keyring or something.

Anyway, everybody's been really nice all day, although I find myself equally impatient with long-winded condolences and perfunctory ones. The nurses, last night and this morning, sang our praises as supportive and accepting family members. One of them said she told Mom, "You're lucky to have such great daughters." I've gotten some lovely e-mail notes from friends, which are about all I can handle right now. I'm not fit to be in human company.

So now we're going back and forth about the service. There's a family plot up in Englewood NJ, where Mom grew up and lived for years after Dad divorced her. We want to bury her cremains there. Nobody wants a memorial service in a church or funeral home, so we want to do something simple at the graveside. I suggested that everyone just say a few words, but Liz's husband said that Mom had liked a very brief, simple, non-religious Episcopal service we had for her father ("BCP lite for atheists," as I call it), so I need to call the Episcopal Church in Englewood and see if they have someone willing to do a funeral without mentioning God, since I'm the only religious person in the family at this point. I told Liz I could do BCP lite myself, if we could find a prayer book, but she said someone else should do it so I can concentrate on being the daughter, which makes sense.

So we'll do graveside BCP lite followed by a meal somewhere. I don't know if any of my friends would come from NYC or not; I'd like them to if they want to, but Liz kind of wants just family. We still have to hash that out. And I want Gary there, but feel guilty asking him to fly out for BCP lite in a graveyard, even though we've had a long-standing understanding that he'd travel for my mother's funeral, as I did for his father's.

So I'm all muddled right now, and generally snappish. Oh, and my BlackBerry's power outlet is loose, or something, so it won't recharge reliably, but it's no longer under warranty and the upgrade phones aren't equipped for an extended battery. I probably shouldn't have tried to deal with that annoyance today, but Liz and Lloyd had to pick up their taxes and the Verizon place was right there.

One of L&L's cats is dying; in fact, they expected him to predecease Mom by a good bit. He's lying on my lap now, raggedy and a bit smelly, but warm and purring. I think he's trying to comfort me, or else he misses Mom and wants me to comfort him. Or else he's just the same slut for affection he's always been.

Anyway, I trust I'll be more coherent tomorrow. Oh, the photo at the top of the page is my favorite picture of Mom when she was young -- before I was born -- and it's how I'd like to imagine her wherever she ended up. And here's a photo of her back in 2007, the last time she came out to visit us in Reno.

I miss you, Mom. I hope you know how much I love you. I hope you know how much you mean to me.

The one grace is that it's a gorgeous spring day here, warm and sunny with abundant blossoms. Mom would be delighted.

Blogging from the Hospital

I had a lovely long sleep last night, followed by a lovely large breakfast my brother-in-law cooked for me, followed by a lovely long hot shower.

The rest of the day was less tired than yesterday, but more teary. Liz and I showed up at the hospital to find Mom pretty unresponsive. I sat next to her, holding her hand and stroking her hair and weeping, while I told her over and over how much I love her and talked about various childhood moments I remembered: trips we took, my first day of kindergarten (a half day starting in the afternoon) when she held me on her lap all morning as I asked every thirty seconds, "Is it time to go to school yet?"

Liz sat in the family room during a lot of that. Around noon, Mom became a bit more responsive -- also more restless -- and we both talked to her and touched her and tried to make her more comfortable, a task at which Liz seemed much better than I. (Well, Liz has been living with her for seventeen years now.)

At some point the hospice doc showed up, examined Mom very briefly and gently, and said that her guess would be that Mom had about half a day left.

I was still really teary when my uncle and cousin and nephew and BIL showed up. My uncle took us out for a lovely sushi lunch, and then we went back to the hospital. (Before lunch, I'd had a crying jag on Liz's shoulder, and Liz and her son and I cried together too.)

Everyone but Liz and I said bye to Mom and left; the two of us resumed talking-and-touching duty. At one point Mom became very agitated; we tried various things to calm her, with mixed success, and she wound up bellowing at me, but not Liz, to get out of the room. I fled into the hall, where Mom's nurse gave me a pep talk. "Don't take it personally!" Later, I went back in and she seemed fine with my being there.

In the meantime, the nurse had called the doctor and gotten Mom's morphine dosage upped (to every hour instead of every two) because of the agitation.

Liz and I decided to spend the night at the hospital. We went downstairs for a quick cafeteria dinner, and then her husband brought us our meds and toothbrushes.

Liz is lying down on the couch in the family room. I'm stretched out on the recliner in Mom's room, trying to rest my back, which has had a hard day of it being twisted into pretzel-like positions at Mom's bedside. (I also took some Advil.). Mom's asleep, and seems peaceful.

Tired and Teary

I took another pretty picture of Liz's garden, but Blogger keeps eating it. Who knows?

Anyway, I arrived on time this morning after a smooth trip; I even managed to doze a bit, although I was in a middle seat. Liz and I went straight to the hospital. Last night, Mom was unresponsive and had been given forty-eight hours to live; this morning, she seemed to be much better, awake and oriented and alert, cracking jokes, much more her old self.

As the day progressed, though, she got worse again. She ate a little breakfast but no lunch, although she's still drinking water. Although she had some moments of lucidity, she spent most of the time sleeping and engaged in a lot of what palliative-care folks call "terminal restlessness:" throwing off the bedclothes, jerking her head or hands spasmodically, picking at her hospital gown, reptitively reaching up to wipe her lips, hair and face. Twice while I was there -- from about seven in the morning to four in the afternoon -- the nurses gave her morphine to calm her down. She was sleeping soundly when I left.

Liz and I met the palliative-care doctor, who feels that Mom's absolutely in the right place, and who -- when I followed her into the hallway to ask about possible timeframes, a question she'd clearly been expecting -- said, "My gut sense is a couple of days, a week at the outside. But I've been wrong before."

Her gut sense matches mine and Liz's; Liz and I wouldn't be surprised, in fact, if Mom died in the next twenty-four hours. Mom was looking and acting very, very much like Dad in the day or two before he died. Even Liz noticed the similarity between photos of Dad I'd sent her during that time and how Mom looked today.

So we think this is it. If it's not, Mom can stay in this inpatient hospice unit for up to six months with insurance coverage. Yay! The unit itself is quite lovely: there are homey touches in each room, like curtains on the windows and real bedside lamps and brightly colored lap afghans crocheted by volunteers. There are several lounges with couches where friends or family can sleep; there's also a recliner next to each bedside, and I spent quite a while napping in that today while Mom was napping in her bed. There's a kitchen with several microwaves and a fridge where families can keep special things for patients or themselves. Loved ones have 24/7 access to the unit -- no limitations on visiting hours -- and there are interesting programs like an art-therapy gruop for people who've been bereaved and a movie discussion group for the same population. We met an art-therapy intern who stopped by to introduce herself.

So I give the place high marks. My only quibble is that Mom has a roommate. I spent some time talking to this lady, who was lonely and had been crying out for her children (a daughter had visited earlier in the day, but had to leave to go to work), and I told the nurse when she asked for cranberry juice. While I'm glad I could help her, I also don't think it's fair for her to have to listen to Mom's dying process or for Mom to have to listen to hers, or for either family not to be guaranteed privacy with their loved one.

But we don't live in a perfect world. Space is limited all over, and this unit is already so much nicer than most of the places Mom could have wound up that my main feeling -- and my sister's -- is sheer gratitude that it exists.

I told Mom over and over today that I loved her and what a wonderful mother she is. When Liz went home to take care of some other family business, I stayed, and gave Mom permission to leave if she needs to. I promised her that while we'll always miss and love her, we'll be okay, because she's given the ultimate motherly gift of equipping her children to survive without her.

At the time, I wondered if I should have waited for Liz to be there before I said any of that, but when I told Liz later, she was glad I'd said it, because she'd wanted to and hadn't been able to.

Liz and I left around five -- we're both exhausted -- to come home for a very nice dinner her husband had fixed for us. After dinner, Liz gave me some things from my stepmother's apartment, and then we went upstairs and lay on Mom's bed and cried about how much we'll miss her, and what in the world are we going to do with all her shoes and pictures and figurines and . . . it's impossible to look anywhere in the house without seeing something she made, something that was originally hers, something she gave us or we gave her.

Then we dried our tears, and Liz went downstairs to relax a bit before bed, and I came into the guestroom to blog. Both of us have outfits laid out next to our beds, so that if the hospital calls in the middle of the night and says that Mom's going downhill quickly, we can get dressed right away and get over there.

I really hope that doesn't happen.

Tomorrow my uncle, Mom's brother, and one of my cousins will drive down from northern Jeresey to see Mom and us. Another cousin may fly in from Phoenix; he hasn't decided yet. Gary's standing by in case he needs to fly here out for a funeral. Liz and I talked a little today about researching funeral homes and about cremation versus embalming, but we haven't decided anything yet. It feels like a betrayal even to think about this stuff, although we both know it's necessary; we're both hoping for the "miraculous recovery" even the palliative-care doctor acknowledged to be possible.

I just hope I can get a full night's sleep tonight.

"Come Now"

My sister signed a DNR for Mom amd got her enrolled in an in-hospital hospice. The palliative-care doc says I should "come now." I'm catching a flight to San Fransisco at 5:30 this afternoon, and from there taking a red-eye that will get me into Philadelphia at 6:05 tomorrow morning.

Gotta go pack.

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.