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Good Morning everyone. This question is for those who work in hospice. My mother, 93 1/2 yrs old has been on hospice for 9 months now. She is due for recertification soon. My worry is that she is trying to be too independent to prove that she is still well and fit. She was diagnosed with end-stage CHF as a diagnosis for hospice after an emergency room visit last April of 2019. She was retaining fluids and couldn’t walk 2 feet without getting out of breath. Her primary care physician referred her to hospice from this ER visit. Hospice took her off a lot of medications throughout these past few months, and with all the comfort care, she seems to be more comfortable. She has a pace maker that is 10 yrs old now (Jan 2010) and we all know the battery is almost out of juice. She has some symptoms of this, but she is not really complaining of feeling any different. She has a CNA who comes in twice a week and it took my mother some time to realize that the CNA is there to help her with things and that she should let her do things around the house. My mother will get up extra early on those days so she can “get things done - including her own shower” so it doesn’t “appear” that my mother can’t do anything for herself anymore. My mother is ALL about appearances and I’m so afraid that hospice will deem her too capable and drop her.


My mother’s blood pressure is dangerously low most days and they have since taken her off the metoprolol and she is now only on her lasix and metazolone daily. This has helped her a bit and her b/p has come up a bit. My mother does get dizzy and in fact she has fallen in front of me, but denies this if asked. She does have coughing fits when she lays flat, but never admits to this. I tell the nurses on the side, but I have to wonder how this all plays out in the eyes of the hospice nurses and recertification?


I don’t know what I would do without hospice. She still lives in her own home and I cannot be there all the time, although I do check on her daily. She just won’t admit she’s down, when I’m fact she is. What is the criteria for hospice? Am I worrying needlessly that she will be dropped? I cannot go back to the many doctors we saw for her before hospice. She does have valve problems too. I was diagnosed with cancer (nhl) and I have to keep up with my own health. She does not know I have cancer, she just thinks I’m anemic and that I go for iron infusions. I have been her caretaker for over 8 yrs now and it has affected my health.


My mother also had squamous cell carcinoma and has to have Moh’s surgeries every 6 months or more, but she is not in hospice for the skin cancer. Hospice has been great to do the wound care after the surgeries however. I could never do it and my mother could never do it as she has macular degeneration and is legally blind.


I would appreciate any explanation of Hospice criteria. She is now going on towards a year of this great service. TY.

A lot depends on the Hospice program where your mother is, Many provide chaplin services, social workers and volunteers. Frequently a doctor in combination with the nurse determine continued eligibility for the program. I would encourage you to talk with the nurse and arrange for volunteer[s] to assist you. The most important thing is that you need to take care of yourself - it is most difficult to address others if you don't make sure your needs are taken care of. The social worker should be able to help you find alternatives [usually palliative care]in the event your mother improves enough to be discharged. Even if that were to happen, the likelihood is that her condition would worsen and she could return to Hospice care. Check with the nurse and social worker to see what other services you may be able to get for yourself. Are there other family members or friends who could provide some assistance for you - perhaps a minister that you could talk with. Remember that you can only do what is within your power to do.
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Reply to HILLARDMH
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Nymima, the cardiologist told me that my dad would just continue to feel more tired, less energy and sleep more. He said he would probably just go to sleep and never wake up.

The end is the easy part, it is the getting there that will be the challenge. Because the pace maker will not be pacing as often as needed to conserve the remaining charge she is a fall hazard, you don't know when it will stop or slow down more.

What was the life expectancy for the battery? Can you ask the cardiologist if the can do a phone check? Does she have a defibrillator as well?

If she has a defibrillator you need to find out how to get it turned off when she codes. That will be traumatizing for anyone there.

If you can keep her walking around that will help her not retain so much fluid. But the fluid retention will help her pass sooner. Such awful choices.

I don't know if I helped you but I do understand how scary this is. I also understand her just being ready to go.

Be sure and take care of you during this time. Hugs!
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nymima Feb 23, 2020
No defibrillator - thank goodness. The battery for the PM is 10 yrs old this month. I’m assuming the battery has a ten year life span as it appears this is what is happening now. She doesn’t have a cardiologist anymore since Hospice, but her pm is not the type that can be read by phone. Some days she is more tired than other days. Hospice is there almost every day to check her vitals.

I appreciate your honest answers. I need to know what to expect. I’m less stressed understanding this whole dynamic now. TY.
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In order for a person to be recertified for hospice care, the hospice must be able to document decline. Sometimes the hospice interventions stabilize a person and they need to be discharged from hospice. However, if the person shows decline off hospice and the hospice agency can document the decline from removal of service, hospice can then resume services. Hospice can under scrunity from the federal government because of abuse of the Medicare hospice benefit. People were on hospice for years which was not appropriate. Have you shared your concerns with the hospice nurse? The nurse is the person who does the recertification.
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Reply to Peanuts56
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I'm so glad your mom says she's ready. This has to be super hard for you. I would guess giving your mom hand massages would be a sweet thing to do for her. <3 and hugs!
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Reply to surprise
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Nymima, I am so sorry.

Yes, her battery dying is definitely part of what you are seeing.

Have they checked how often it is pacing? My dads was 30% of the time and he started doing poorly when he needed a battery change.

I am happy to hear that she is ready, prepare yourself. Hugs!
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nymima Feb 22, 2020
She hasn’t seen a cardiologist or an EP in 9 months - since she started hospice. So I don’t know how often it’s pacing now.

I don’t know what to expect. Is her b/p just going to continue to go down? Will she feel the affects of the weaker battery? The nurses have warned me that she is more of a fall risk now.

Now that she is off all but one lasix pill a day, I’m afraid she will fill up again with fluids. She’s happy she doesn’t have to take as many water pills, as she was always having to make many trips to the bathroom.

if you can tell me what more I can expect, I would appreciate it. Thank you for your response.
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Goes to show how naive I was when I asked this question! My mother has declined in health even since 5 days ago when she was recertified for hospice. Her blood pressure was 70/48 today. Hospice took her off all meds except 20 mgs of lasix a day. They are afraid of her b/p falling more. So now she will fill up with fluids even more.

Her pace maker battery may be part of the decline as the battery is now 10 yrs old. To those who asked if she wanted to replace the pace maker, she does NOT want to. She will be 94 yrs old soon. She says she is ready to go. Things that used to interest her don’t interest her anymore. So much has happened in such a short amount of time.
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I doubt she'll graduate from hospice with a BP of 72/52 and terminal diseases in place, along with a PM that needs a new battery!!! A lady at my mother's ALF was literally on hospice for THREE YEARS before she finally passed away! She'd keep getting recertified b/c she still had a terminal illness and wasn't getting any better.

Make sure to let the CNAs know of ALL of her symptoms *keep a log* and that she's so great at showtiming. She can act all she'd like, but the bottom line is she's terminally ill and that's what hospice criteria is all about.

Wishing you the best of luck in this difficult time.
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Reply to lealonnie1
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Hospice is for clients with terminal illnesses that usually are expected to live 6months or less. She does need help - yours or her aides- even if it is a bit of a blow to her pride. He goal of hospice is compassionate care, not restorative care. Seems she should still qualify.
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This is for USA Medicare patients: When my father and father in law were put on hospice at home, due to congestive heart failure, a caretaker was required to be there 24/7. Father in law was in assisted living with a 24/7 hired caretaker living in his unit with him. Father was in assisted living with my mother living in the unit with him. Several kids there daily. Hospice came in several times a week to check on Dad. Does the hospice service know that your mother does not have the 24/7 caretaker available?

Several things your mother said indicate she knows she is dying (she refuses to replace the pacemaker, for instance.) My dad was afraid of dying. Perhaps hospice can send a pastor or social worker to counsel her about that and allay her fears. Usually people are concerned about being in pain, and hospice can manage that if they hear about it. I think the fear of dying is driving all her actions right now.

Based on the low blood pressure situation, I'm speculating her ejection fraction is very low. My dad's was 33% at his last echocardiogram, and my father in law's was 13%. The heart function will just slowly decline until circulation is no longer possible and the patient passes away. I cannot imagine that she will be removed from hospice status since this condition will not improve. But she will need someone with her all the time, either at home or in a facility. Hospice does not cover 24/7 caretaking.
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nymima Feb 22, 2020
Yes - I agree she needs someone with her. I am working on this now. Thank you.
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You probably need to hire someone to be with her when you can't be I'm afraid. Good luck!
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nymima Feb 19, 2020
Yes - I realize that this is becoming a reality. I am working on getting someone to be with her a few hours a day now. She is telling me she doesn’t need it, but I have to trust my instincts. TY
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As long as there are declines that have been documented the chances of her "graduating" are lessened.
If you have noticed declines you should make not of these as your observations are just as important as the CNA's and the Nurse's.
So any declines you notice keep a log so that the Nurse and CNA can look it over. Things like increased bouts of constipation, eating less, sleeping more, any choking when eating or drinking?
By the way have you discussed with Hospice the pacemaker and battery? Will you be having it replaced or the device deactivated?
Keep in mind if she does "graduate" you can always ask for her to be placed on Palliative Care and chances are the same team may care for her and they will be ready to put her back on Hospice when they note a decline that would make her eligible again.
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nymima Feb 15, 2020
Yes - Hospice knows about the PM battery. I provided them with the date she had it installed ten years ago. My mother has elected NOT to replace the pm. I think hospice attributes my mother’s low blood pressure these days to the low battery in the pm. I support her decision, but if she wanted to replace the pm, I would support that decision too. If she chose to replace the pm, then she would come off hospice as they feel it is treatment.

She says she doesn’t really feel well in the mornings and doesn’t really perk up until around 1 pm most days. I don’t know what goes on with her activities in the mornings as I am not usually there until around 3 pm. I was there this morning and she was very lethargic and tired. I don’t know much about her bathroom habits, as she doesn’t tell me anything about that.

The recertification nurse will be here on Monday morning to decertify her. We’ll see how it goes.
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I don't know about hospice qualifications, but my mother graduated once because her decline stopped. So I agree that your mom is in danger of going off service. However, there is an alternative- palliative care. When mthr went off service, we hired a visiting primary care provider. In the initial interview, we were asked what out goals for care were. That's a trick question.

Most normal people of average age would say to maintain health. That means agressively fighting decline. We specified palliative care and a DNR (POLST if possible). This allowed the service to be "slack" and not practice defensive medicine. They understood that mthr wanted no treatment except for comfort care. Her advanced directive specifies no antibiotics when death could be expected in a year, so that was noted. And the service did a great job of making sure her anti depressant and pain pills were refilled with monthly visits as now required. They tried talk therapy in an effort to get her on a lower dosage of anti depressant, but her dementia derailed that.

You can survive post hospice. You will have greater expense, but I'm sure your mom will go back on sooner rather than later. You can Google specific requirements for hospices to see how her numbers match up. Some things, like a heart failure "ejection fraction" score below a certain %, automatically qualify her.
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Where I live, when someone is on Hospice in the home, someone needs to be there 24/7.

I think Mom over did it one day and is paying for it the next. I think coughing is a sign her lungs are filling up. Is she taking her water pill? If yes, I would call the Hospice nurse and see if u need to increase it. If not taking it, get it into her. If she continues to cough call the Nurse. They r on 24/7 call.
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nymima Feb 16, 2020
The nurse said that if her blood pressure continues to drop, then they would lessen the lasix or metazolone. Not remove it completely. To increase her water pills only causes her bladder to spasm and then she can’t urinate properly. We’ve already dealt with that when she was in spirolactone. (Sp).

I think we are going to have a roller coaster ride now. Some good days, and some down days. I don’t know if I can handle the roller coaster ride because of my health. I just finished 6 months of chemo and now I’m doing immuno therapy.

But when she is questioned about her health by the nurses, she says everything is always “fine”. I don’t know why she can’t be more honest.
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I am so sorry that you are going through this.

Hospice nurses can tell what is going on with their patients. Regardless of how much showtiming is taking place.

They are trained to look beyond what the patient says and does. She can't hide the sound of her overworked, underperforming heart.

Are you planning on having her pacemaker battery changed?
I saw a huge improvement in my dad's quality of life having his done. It was such an improvement I was super surprised by how well he began to do.

I would not start taking her back to any doctors if hospice graduates her. She is doing well because she is not on all the medications. You can research what in home help she qualifies for. Maybe someone coming in once a week would be sufficient for the assistance she currently needs.
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Up - Date: Today she is lethargic and very tired. B/p is low again. 72/52. Yesterday, she was pretty perky. What a difference between the two days. This is going to be a roller coaster ride I think. I feel she is a fall risk today. She is using the walker and holding onto everything when she walks without the walker. Every time the nurses are at her place, she is sitting in her recliner. It is difficult to tell her real state of health from the recliner. She is coughing a lot today. When I ask her about this, she forces herself to stop. She tries to cover it up. She says she is not getting a cold, but rather it is the chf. That’s the first time she ever admitted anything to me.
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