I don’t think he has covid again. I believe he is one of those people who, for some reason, will have covid virus present in his body forever and may test positive at any time.I don’t think he has covid again. I believe he is one of those people who, for some reason, will have covid virus present in his body forever and may test positive at any time.
That is kind of what I was wonderinig.
People in my in laws circle often poached good aides from the rehab centers. You have a hip replacement, spend several weeks in rehab, check out the aides and connect with one who might want to also do overnights for the parents etc. I highly recommend having more than one person, like one main one, but also someone to cover those other days that the main person needs to take off for a break.
They’re talking about discharging Dad to a SNF. Ugh. His caregiver thinks it’s too soon. Dad’s blood pressure is low and he’s lethargic. I told the case manager flat out we’re not comfortable with that. Same song, next verse.
The hospital wants to shift people out as soon as they can - they get paid by diagnostic related group, and make more profit if the person doesn’t stay beyond their break even point. They look at what care he can get at the hospital that he will not get at SNF - if he needs the doctor daily observations at the hospital due to dad’s continuing recovery, try to hang your hat on that. However SNF often have a NP at facility and they may say that is enough oversight (in our state, we have a MD that is Director and is in the building once a week, while the two NPs we have FT handle in-house needs with rehab and SNF - we get the admitting orders and go from there).
It seems like they’re backing down now and he will be here longer. I just have to accept the fact we will always have to advocate for him, no matter what hospital he’s in.
Hope everyone had a grand Easter and if you celebrate another faith the recent holy times (and Eastern Orthodox with holy week I believe this week). Hope you have been able to enjoy some family time together amidst the declining health issues of parent(s).
Yesterday Dad was moved to a rehab center that my sister found. We’ve heard nothing but good about it so we’re hopeful. I flew home today. I’m so tired!
My dad’s results from iron infusion #1 and a capsule endoscopy are back – a bit of improvement with the anemia and no tumors, etc but otoh, no real way to stop the tiny bleeds, either. Now the GI doctors want to do another endoscopy, but siblings all agree that won’t be cleared by pulmonology or cardiology; meanwhile the opthamologist is lobbying for cataract surgery on the other eye so at least Dad could see better. Hemotology will set up iron infusion #2.
My poor Mom is trying to keep it all together, but preferred sib has to be in town a lot lately so he’s been able to clarify, and I’ve been checking the test results and reports for her. and verifying appointment dates.
working on coverage for vacations, grandchildren are all making heroic efforts to be together for a picnic in the coming months. It’s hard to not feel like things are coming to a close, or at least decisions about what comes next.
@greenbutton does your Dad have multiple myeloma? Do they think the anemia is from bleeds or from kidney issues or-? What was the Plavix for that was withdrawn? Do they know for sure that there are tiny bleeds? How old is he?
Depending on your answers, I am surprised anyone did an endoscopy on him.
My mother has had one hospitalization a year ago with blood transfusion and iron infusions, then last fall a series of iron infusions on an outpatient basis (1 1/2 hours 2 times, every two weeks, and 2 1/2 hours the third time, also two weeks after the second), and then again in January 2022 (five 30 minute infusions in two weeks).
It took a month after the last infusion to see results in blood tests in terms of anemia (hemoglobin and hematocrit etc. on CBC) and as the anemia results improved, the initial boost in iron decreased.
Two weeks ago her hemoglobin and hematocrit dropped a lot all of a sudden so more infusions are coming.
Infusions are considered palliative. We are not chasing causes but could be GI bleed (she has a colostomy with a huge hernia), kidneys or heart valve, or problem producing red blood cells. We were going to put her on hospice and were surprised hospice would allow infusions.
One thing: get some zofran for nausea before the next one. Four hours at a time is a lot. My mother had continuous vomiting with a much shorter one and now I give it to her well before the infusion.
Is your Dad or your family thinking of hospice or are MD’s considering him treatable?
“does your Dad have multiple myeloma? Do they think the anemia is from bleeds or from kidney issues or-? What was the Plavix for that was withdrawn? Do they know for sure that there are tiny bleeds? How old is he?”
Dad is about to turn 87, Mom is 89. They are still at home. He’s not been dx w myeloma but his tests do show many of the markers (lightchains, etc) that could convert that way. They believe it is a bleed, or small ones. I don’t know about the kidneys.
Plavix was for the strokes (2 small ones). The anemia is considered related to that. 4-hr infusion didn’t seem to bother him. The infusion center is a 2.5 hr drive, round trip (sib drives them). They did a capsule endoscopy bc anesthesia is something to be avoided (stroke, pacemaker, pulmonary fibrosis). They are suggesting a balloon endoscopy now, but I think this is classic doctors doing stuff because they can, not for diagnostic value.
Nobody has talked about hospice or even assisted living. There are lots of both where I am, but they would --literally – prefer to die than go through a move. My siblings see them much more than I do and think all of this is somehow manageable by two elderly people with porous memory. I am trying to not start a fight but yesterday discovered both siblings have planned to be away for weeks this summer and I pointed out this is not workable, and while I am happy to come stay for a week or so (they are retired, I am the baby of the family and still work) I can’t do that for 3 weeks.
It’s always hard. He also takes meds for anxiety, and is increasingly cognitively iffy (basic remembering). But he is adamant that he’s doing fine and everyone should stop fussing. He presents as pretty good to his doctors, all things considered. Reading all this brings home where we are in reality.
So the Plavix was seen as causing the anemia due to a bleed being exacerbated by the blood thinner?
Time will tell on this. My mother’s anemia (and breathing issues from the lack of oxygen in the body from the anemia) returns in full force every few months. Hoping your Dad’s issues with small bleeds can resolve fully so he does not need repeat infusions. Right now the iron infusions are basically keeping my mother alive.
For GI bleeds, however small, doc also prescribed omaprazole (Prilosec) to aid in healing. I just asked doc to take my mother off as a trial because that med interferes with absorption, but if bleeds worsen we will put her back on.
As the main caregiver, it is difficult for me to go away. But I am going to do it this summer, to see my daughter. I think your family should consider hiring someone to be present physically if you cannot take time off from work while your siblings are away. My siblings don’t step up so I am hiring someone to come by 3 times/week, even with my mother in assisted living, while I am gone for two weeks. Would your parents accept that?
Anxiety meds like benzodiazepines are not good for early dementia. Geriatric psychiatrists use gabapentin or trazadone, it seems, or sometimes an SSRI. I don’t know what your Dad is taking so maybe not a benzo, but thought I would mention since we had a problem with providers prescribing Ativan.
ps I did not know about capsule endoscopies, I wonder why the local hospital did not recommend for my mother. Instead they put her on hospice- more than a year ago!
Do both of your siblings do things for your parents? Even the one who does 9- hr. days with them for the infusions doesn’t see a problem with it? How often are these infusions?
One lives in the same town, but inexplicably keeps volunteering for time consuming stuff (directing the theatre production, for example) and has toddlers. He is reactive, but not very proactive. Other sibling is an hour away but has done most of the heavy lifting and driving any distance.
May be a thing with men? They just don’t seem to need any plan at all, and their confidence in their own ability to fix anything coupled with unreasonable optimism is frustrating to me. Otoh, I know it’s easy to want to Do Something, and that gets in the way, too.
So they planned these extended trips, and only then said , oh, maybe that needs tweaking. Like, they couldn’t think of that first? They also seem to think if Mom needs something, she’ll just ask.
Your mother’s age would not have had them do any surgical intervention or other medical intervention. Capsule endoscopies have limited value. The gold standard is endoscopy or colonoscopy (depending on where the problem is).
I think you may be right.
Actually she has had procoedures and the hospital always wants to do more…
We had a colorectal surgeon who was interested in the intersection of that discipline and palliative care. She actually did a sigmoidoscopy without anesthesia and has me watch my mother’s face for pain. As soon as I saw pain, the doc stopped. She got far enough to determine no cancer, diverticulitis instead.
A year later with blockage, my mother had a colostomy. at 93. I decided on hospice instead, but when hospice came to take her to their hospice house, they said she would need a nasogastric tube there as well (torture for her) AND they would make a vent for the gas. So hospice wasn’t as gentle as we had thought and we pivoted to colostomy.
The hospital always wants to do procedures on her despite her age and condition. So I try to keep her out of the hospital. They wanted to check for GI bleed and I said no.
We have had this same experience. Dad had two 'scopes inpatient during the last hospitalization, and his pulmo doctor has made it plain to hematology that we will not be doing any more. But Pulmo wanted him to try an extraordinarily expensive drug that is only palliative with numerous traumatic side effects – Mom and Dad said no to that with our blessing.
I have modeled for my sibs and parents how to ask questions and get answers (I unfortunately have the most experience at that) . I shudder to think how people without adults to advocate manage the US healthcare system.
My parents pastor got back to me today with some help on finding a housecleaner (we are telling Mom it is her Mother’s Day gift) so that was good. I am wondering though @MaineLonghorn how is your father settling in?
@greenbutton thanks for asking. I talked to him a couple of days ago and he sounded fantastic! He’s still annoyed that the rehab center doesn’t have the Longhorn Network on TV there as they did at the hospital, ha. My sister told him that will be good motivation for him to work hard at PT and get home ASAP. He says he’s determined to do that! I was kind of worried about him when I left Sunday, but he’s sounding like his old self. I am thankful his caregiver will be with him Monday through Friday. My sister works right across the street so she will be able to visit him frequently, also.
I shudder to think how people without adults to advocate manage the US healthcare system.
Yup, all the time.
It’s pretty challenging. There are some MDs in the family and we still work hard to understand what’s being said to and done for mom, options, pros & cons, etc.
The medical system is NOT friendly to navigate.