Friday, March 20, 2009

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.


  1. Susan, hospice is patient centered and family focused -- you are as much their client as your dad, and do not feel shy about utilizing them as you need to --whether it is to reassure you, answer your questions, give you space to say the things that you don't think should ever leave your lips, rage, whatever. And remember that it's not just the nurse, but the social worker, chaplain, etc who are there for you as well as your dad.

    The last thing you need to worry about is what the staff think of you.

    Ask the hospice folks if they have a copy of the little pamphlet "Gone From My Sight: the Dying Experience" by Barbara Karnes it can be very helpful and reassuring to read.

    Hugs and prayers.

  2. Susan, it sounds like that hospice nurse is your kind of woman. I'm glad she was there to act as chaplain for you. You go ahead and run there to ask questions as often as you want. Prayers for comfort and support ascending.


  3. Ah, Susan, don't put yourself down. "High maintenance?" How on earth are you supposed to be an expert in all of this? You're his daughter... Ask all the questions you need, let hospice help him and you through this, and you just be his daughter and feel what you feel. I have a feeling if you were to see a relative in the ED whose parent was dying, you'd be more gentle with that person than you are with yourself.

    One thing: as his heart gets weaker, taking in food and fluids at some point just loads him down with fluids. You could ask the nurse about that, whether he's at that point. It is human nature to want the patient to eat and to feel happy when the patient eats, but when he wants to quit usually that's a sign that his body isn't really able to handle it. At that point, too, he won't be feeling hunger like you or I would if we weren't eating. Really he won't.

    This may be less than a month, Susan. Please email me if I can answer any questions as I do work in hospice--and know that prayers by the truckload are ascending.

  4. Dear Susan,

    You are going through very difficult times. We didn't look after ourselves very well when my parents were dying. I am still paying for that now, nearly 2 years later.

    Please try and have some fun and laughs if you possibly can. Laughing (often at inappropriate stuff) is what kept me and husband at least semi sane.

    I am still keeping you and your family in mind. Nearest I can come to praying.

    My best wishes to you all, I will be thinking of you. And hoping that your life becomes easier.

    Best wishes from Liverpool

  5. I wish that I lived closer to you; I'd be more than happy to come and help you with your dad.

    Caring for a terminally ill patient is, for me, the most challenging thing I've ever done, but it's also incredibly rewarding. My focus isn't just my patient, either; I know that their loved ones need just as much attention and care as they do (sometimes more do).

    You're not high maintenance, chickie. You're worried and concerned for your father, which is a totally natural and normal response.

    If you have any questions or just want someone to talk to, my email address is I have ears that listen well and big, waterproof shoulders. In the meantime, I'll have some good thoughts for you and your dad. Hang in there, honey.


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