I’m so sorry @compmom! Sounds like a challenging time and so hard to get the guidance that could help you make good choices for your mom.
We read about the effect of Omicron on hospitals and now have first hand experience. The Coumadin Clinic had not even scheduled my mother’s INR blood draw, which was supposed to happen Monday. I noticed it was not on the portal and made a bunch of phone calls. They said they were understaffed.
Ditto with getting the results. I had to make phone calls and they said they had missed it. Another dose of Coumadin might have been lethal and we barely missed that, literally by minutes, because I found the nurse in the facility and stopped it. The Clinic had been too late due to stress on the hospital system.
What if I had not checked the portal? People are dying invisibly from COVID’s effects on hospital systems and health care in general.
Trying to get help with diagnosis and treatment when ER’s and urgent cares and MD offices are overwhelmed (and full of COVID patients) is tough. Stay healthy everyone!
Medicare sets the criteria for hospice enrollment. Because it’s much more difficult to predict life trajectory with dementia, there need to be other underlying factors to make a patient eligible. Some programs and doctors are more willing to “fudge” than others.
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That’s terrible!!
In our area, one hospice fudges a lot and the other is strict! It is beneficial to fudge because it brings in more money but the agency needs to have the staff to provide the services that are needed as a result.
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Yep, I remember looking up the criteria and my mother did not qualify under strict standards.
I have seen fudging in other areas, like a guy who had had some small strokes that affected almost nothing in his function but hospice used stroke to get him the services he needed. People I saw on hospice died anywhere from 4 days to 5 months after enrollment, even the ones who they fudged the requirements died within the 6 months. I could not figure out why MIL who’d broken a hip, but had a great recovery qualified. Ortho said it was because they know little old ladies who break their hip and move to “the home” just decline, and she did.
My dad’s doctor told him if he fell and broke anything he would be a goner and he wasn’t kidding. Fortunately it made my dad just cautious enough to not take chances. The stats prove the doctor right.
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If your loved one has a DNR and is at home, make SURE it is easily available. You’re supposed to keep it in a central place–many suggest the refrigerator door (to me it just seemed way too morbid to do that but it is the place emergency will look…). If ER is called–say your loved one fainted–it could be a dizzy spell or a heart attack. If it’s a heart attack the EMT’s will be doing chest compressions and intubation if that yellow paper isn’t readily available–they are required to and even if you say “it’s here somewhere” it’ll be too late.
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Hospice isn’t meant to hurry the death of anyone. It’s meant to make the end more comfortable
Maybe this should be on the “say it here thread” but I’m still mad? irritated? that my dad and sister resisted hospice for my mom in her final few days (several years ago). I will admit I was the only one present who had any experience with hospice as a great experience since I’d just gone through it with my FIL. To the rest of my family hospice was a “death sentence” or the “point of no return”.
The social workers (kindly) pushed hospice which actually was IN the hospital in a special wing especially set up for family to visit and enjoy each other in the final hours. Instead I spent my mom’s final time with nurses giving permission to get her out of pain and blocking hospital protocols to get some peace for her.
ASK all the questions you need and visit the facilities. YES–you can stop anytime. Nobody is a prisoner.
Check it out to your satisfaction but maintenance meds for whatever conditions you have should be given. If you need antibiotics for a UTI it should be given. If you take heart meds, it should be given. Insulin is still around. Nobody should be worried that oxygen isn’t there.
If you have a heart attack…uh…no.
If you decide on WANTING a ventilator or IV’s or whatever and need to go to the hospital then that’s your prerogative. But that’s not what hospice does. The hospital is meant to do whatever necessary to sustain life and hospice is meant to let you die in peace.
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And on the other hand, make sure if you want a DNR discontinued you get the paperwork in place. When we had to call 911 the day before my mom’s funeral when my dad’s vital signs were horrible, it dawned on us that we’d never done anything with the DNR. Dad did come to enough to sign a statement that he wanted the DNR voided, but the EMT said that wasn’t sufficient. But he said since he hadn’t seen the DNR, he would ignore it.
Huh, that reminds me I don’t think we ever did anything to rectify it! I will email my sister right now, since she has medical POA.
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So true. Flashback to ER –
“Does your dad have a DNR? What do you want us to do?”" (yeah, but they don’t know that…)
Answer" Do what you can to save him but don’t kill him in the process. (Not quote but you get my gist).
There’s never any guarantees. My dad’s main concern was he didn’t end up on a ventilator for six months in a hospital after a heart attack where they “saved” him. This is where the “heart to heart” talks come in. And those talks aren’t easy. My dad only talked to me about stuff like that. I was the medical “clinical” kid who was more objective. And I was to some degree…but that made it harder. I’ll bet there are a lot of you out there feeling like the “cold” voice of reason when inside your dying too.
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I discovered recently when my father was in the ER and I got the call about his wishes that he has both a do not intubate and a do not resuscitate. The ER doctor said they went hand in hand. They don’t like to intubate people with a DNR because very often the intubation process in an elderly patient causes the need to resuscitate.
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My mother has been on hospice three times, for a few months each time. Honestly it’s a great way to access free services. It’s too bad so many don’t understand what it is for!
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Some people have ‘crappy’ hospice in their area - like only one provider and not a helpful/desired ‘choice’ based on their review or use.
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They delivered my dad by ambulance to the memory care place today. Didn’t go so well, since when they tried to clean his rear end, there were large bleeding abrasions, and he was yelling when my mom saw him. He settled down, but then she was trying to find everything wrong with the place, thinking they’re going to neglect him since he’s just laying in bed. I guess she thought they were going to entertain him in his bed 24 hours a day? They do come by to people in their beds, just not constantly, good grief! And what stimulation did he have at home? None. He was very disinterested in his iPad, coloring books, anything, this is severe dementia.
I’m hoping they have a way to get him out of his bed and into a wheelchair, so he can meet people. And a way to heal his butt, poor guy. Hopefully hospice will help with that.
They may let him lie in bed while he adjusts. The memory care places I have seen are pretty good at getting them up, over time. The abrasions sound awful! This is an adjustment for your mom maybe even more then for your dad. Keep us posted!
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Met with doc on Wed. and today meet with home health nurse the doc ordered, as well as a PT, who will then hand my mother off to a different PT who specializes in vertigo. Her INR (blood thinning level) remains high after no dose for two nights and it needs to be very low in the context of a possible GI bleed. Iron infusions are ordered and I will get a chair car to take my mother because she is too weak to walk. Dizziness could be from anemia, the PT will advise. I am trying to get a stool test (the doc didn’t see a need) because it would help to know what is causing the deep dive of her blood values for anemia. The other main symptom is breathing issues.
If infusions don’t keep up with the anemia, she goes on hospice. She had two transfusions and iron infusions in March, then three separate 2-3 hour iron infusions last Oct-Nov., but hemoglobin and hematocrit decreased a lot in just a few months.
In my father’s assisted living facility they have a special machine that they use to lift him out of bed with a sling to hold him. They use this to safely move him to a wheelchair from his bed.
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They will get him up, or at very least reposition frequently, to try to get that skin breakdown to heal some. Talk to the hospice folks about a special mattress help with the skin breakdown. They may be able order a pad for the wheelchair too.
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