We have been kicked out of hospice. It’s the only exam I know of where doing well results in failure.
“It’s a good thing!” Laurel, the R.N., assures Mama who looks stricken, patting her bony hand. “You are doing so well!”And it’s true, in recent weeks I have noticed she is stronger and eating better. She’s walking more minutes at the mall. She’s stopped knocking her hands against hard surfaces and asking me to tape gauze on them to protect the bruises. She’s listening to recorded books again—currently she’s listening for the second time to a book about the diets of the world’s longest-lived people trying to determine what she isn’t eating that she should be. (I ask her if she going for 150. Rebecca asks if she is going to start drinking red wine, which she skips over when she reports the researchers’ findings to us.)
But hospice isn’t interested in her well-being. Well, hospice is, but Medicare pays for hospice only if the patient has an ailment that would cost lots of money to treat if the patient hadn’t opted out of treatment, thus saving Medicare money.
The discharge papers read:
1. No symptoms of recurrent congestive heart failure.
2. No refractory angina – debilitating chest pain.
3. Class II (mild) of the NY Heart Association Classification of Heart Failure
4. No supportive criteria – no syncope [temporary loss of consciousness due to a drop in blood pressure], no anorexia, no oxygen dependence, no general bed-bound status.
No supportive criteria. Never mind that, at nearly 100, she is probably thriving because of hospice. And that hospice has kept her from doctor’s visits and from the panics that have sent her to the ER. It’s not uncommon, Laurel tells me, for patients to improve while under hospice care. “It’s the best insurance around,” she says, “but Medicare hasn’t figured that out.”
Mama was admitted into hospice eight months ago on an old diagnosis of congestive heart failure, for which she was on two medications and a daily low-dose aspirin—until the cardiologist said she didn’t need to take them. Until the cardiologist said that if she hasn’t had a heart event by her age, she won’t. She was also losing weight when the doctor agreed to a hospice referral. Now I’m apparently feeding her too well, she’s gained the weight back.
I want my mother to thrive, and I don’t want to lose hospice. I need someone to call when she says she needs to go to the E.R. because her stomach hurts and she might have stomach cancer. I need someone who will listen to her talk as often as she wants to about the decades old hematoma inside her left elbow, wondering if it should it be checked. (No.) And who will hypothesize, again, that the pain in her ear lobe was probably from pressure of sleeping on it. And who will tell her that her ankles aren’t swollen, and her lungs are strong, her oxygen levels perfect, and that she just needs to keep taking her MiraLAX. I don’t want her to lose the bath aid, the highlight of her week.
We were informed last Tuesday that she would be discharged on Friday. On Wednesday, she wrenched her back reaching for her seat belt. Medicare doesn’t care about a wrenched back. But we had two more days. I got the massage therapist back on Thursday, and requested a nurse on Friday to reassure and advise her. Mama said she thought the massage made her back worse. The nurse told her to use cold packs and ibuprofen, rather than the Tylenol she was nibbling on. “I don’t like to take medicine,” she told the nurse. “That’s what will make you feel better,” the nurse said.
I would have told her ice and ibuprofen too, but I knew she wouldn’t do it. I was right, she took one ibuprofen and used the ice pack twice—which is one ibuprofen and two ice packs more than if just I had advised that. But she hasn’t said she needs to go the doctor, now that she knows the doctor would tell her to take ibuprofen and use ice.
I took a break over the weekend, leaving Rebecca as back-up Daughter on Duty to deal with the strained back. I spent it with this little light, while his moms dealt with their own elder-care issue. The respite made my heart happy.
When I returned home, I cleaned up the weekly events calendar on the refrigerator. Gone the Monday and Thursday bath aid, gone the Tuesday nurse, gone the Wednesday reader, gone the masseuse, gone the monthly social worker. Also gone is the weekly call asking me how things are going and if we need supplies. I will not miss the nearly daily scheduling phone calls, but it was a small price to pay for support.
Mama is grouchy this week. Michelle, our paid caregiver, notes it too. Since the first of the year, Michelle told me a couple of weeks ago, Mama has been so sweet, and they have had a good time together. This week, Michelle reports that Mama is back to treating her like dirt (my words) and refusing to have an enjoyable morning. Michelle can’t do anything right. Mama is grumpy with me too. I think she misses hospice. Michelle will do the shower; I’m sure no matter how good it is, it won’t please Mama.
I’m grateful to the team for getting us through winter—Mama’s blue season—exaggerating ailments to keep us in the program through the two previous re-certifications. We can get back in anytime the doctor refers her. But not for failure to thrive; it is no longer a qualifying criteria. I have a feeling she will never have a medical problem that will legitimately qualify her. There needs to be a program for people who live too long.
Meanwhile, I am going to stop eating foods that will put me on that roster. Except for red wine.
15 thoughts on “Flunking Hospice”
Oh Gretchen- I’m so glad to have found you. I got a call at 4:45 this morning from my 95 year old mama in assisted living. She had somehow escaped from her bed and hobbled to the phone to call me. She couldn’t hear a word because she didn’t have her hearing aids in. Since I’m wide awake now, I started looking for compatriots to commiserate with. Mom is in hospice as well – but just because she’s 95. Wonder how long it will last. She keeps surprising us with her strength, but her mind has gone back to the 1940’s I’m afraid.
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I’m so glad you found me, Trish! It’s always good to hear from a sister in the trenches. My mother wanted a phone in her room, we obliged with misgivings. She wants us to call if we don’t visit (to let her know we’re “all right,” but she can’t understand what we are saying. We have to remember not to say anything she can mishear and think we’re lying injured on the interstate. Which is to say we say “I’m fine” (which she doens’t always get) and I love you. So far she rarely tries to call out, thank goodness; sometimes has an aide call is all. I think she doesn’t remember how to push the memory button. A good thing.
Hang in there, and take care of yourself. It’s a marathon not a sprint. I hope to hear from you again. I love other people’s stories.
Nothing like adding hugely to the inevitable stresses…I am so sorry to hear that the much needed, and helpful, support for both of you has been removed. My mother’s situation was much different since her battle was with alzheimer. I hope that those who have walked a similar path have some good suggestions.
So good to hear from you, Susie! Thank you for coming. Yes, the system is flawed. We keep people alive too long, then don’t take care of them. Alzheimer’s is a whole other story, isn’t it? I’m so sorry your mother—and you—had to suffer that. How is your dad?
This just came into my head upon hearing from you: Mr. Brumbaugh. I couldn’t do what he needed me to do. I couldn’t be Meredith Hartling. I stressed a lot about that; I felt inadequate for three years. But I kept at it, because I realized—probably sub-consciously—that I was all he had. And I would do what I could do and it would be good enough. It had to be. That’s how I feel now.
The valley is beautiful this morning! Gretchen
Interesting, crazy, hair-pulling dilemma! My mom always refused Hospice, and with all of her health issues she qualified x 10. Oddly enough I think smaller towns have better hospice providers its more personal, less of a business.
The Center for Aging & Disability gave us bath aids and I got a bit of respite support thru them if I jumped thru certain hoops. Have you contacted them?
I’ll message you with another thought.
Gretchen, I am so sorry. Time to look at options for your mom? If I can be of any help, please let me know. Deep breaths…
Thanks, Karen. She really doesn’t need hospice, it was just so nice. She doesn’t need a venue change yet. Her primary ailment is hypochondria–and visual impairment, of course. She would decline quickly anywhere else, and it’s not her time. Give your mom my love. I hope you are going to be able to come to the reunion/birthday party.
So much to learn about the “system” for health care these days. I caught your post on One Woman’s Day, leading me here. I am pleased to follow you!
Welcome, Marjorie! I’m so glad you are here. Gretchen
This…. less than two hours before we are meeting for the first time with someone from hospice to evaluate Mother… I have a feeling she won’t qualify, but this gives me some insight.
Eager to hear if you are in. I suspect if you got this far, you will get in. My experience is that hospice wants to be there. If the primary doc got you to the hospice eval, you are in. It’s the recert that is tricky, because then they have to prove decline, while they are making the patient better!
Such an absurd system.
Very much so.
This is the side of hospice that people don’t see. The client finally gets the attention needed to kept them healthy so they get kicked out. Is there Pallative Care available in your area? See if the doctor can get that for you. Sorry for the loss, I wish the last 2 months of my mother’s life I had been able to get hospice assistance, instead of doing it myself. Luckily, at the time Natural Gas was selling like hot cakes and supported that last year of 24 hr care at home. I bled through my little retirement. And luckily now I have the remainder of the investment stock. And boy do I hope Natural Gas comes back by the time I need care.
I will check on it. I think in this small town it’s all lumped together. She had home health services for a while, before hospice, but got kicked out of that too. Hospice is a wonderful organization. I am so impressed with their care, their skill, their compassion. Not just for my mother, but for me too.
I don’t know what I will do in the future. I do not have the resources my mother has. I’m going with pills. Lots of them.
Thanks for stopping by here. I hope to see you again. (I don’t know you, do I?)