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.
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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!
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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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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.