How very scary @compmom!
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@compmom- glad the medical concerns are being identified and addressed. You are such a capable, devoted advocate for your mother; sorry you are having your own health challenges simultaneously and hope things improve.
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compmom -how incredibly frustrating. When I would see my parentsâ doctors dismissing or belittling them (even in non-urgent situations, and even with an âeye roll attitudeâ that came through subtly) - it was infuriating. I switched their doctors because of that.
Doctors seem to enjoy talking to young(ish), articulate people who can talk in a somewhat sophisticated fashion about medical issues. I donât always seem the same respect afforded elders who are slower, often anxious, and less able to communicate, or grasp the concepts. Thatâs not right.
Hang in there and thinking of you and your mom as you navigate this all.
This post made me think of @compmomâs experience:
I saw this sort of tunnel vision with providers new to elderly &/or demented patients. If the provided did not see them when they were normal, itâs hard to see beyond their current state.
@Jolynne_Smyth everyone needs time to get acclimated when getting moved - and someone with dementia going from hospital to rehab has had a lot of things going on with their body (wonât get hospital admission w/o something physically going on). Key is kindness and explanations. I would imagine this was done but maybe your dad needed more time or more small reminders of where he was and why he was at rehab.
What probably triggered the staff on wondering about psych meds was his talking âloudly and a little angrilyâ - staff didnât know your dad at that point, and those behaviors can lead to patient doing something like getting out of bed or transferring w/o assistance when they need it â and they end up on the floor - and unwitnessed fall needs to be treated with caution and neuro-checks in the event of a head injury. Many older people are on blood thinners to prevent DVT (blood clots) but if there is a head injury, a potential brain bleed.
Another thing residents who talk loudly and a little angrily do next is swat at staff.
A large number of people I see in rehab that have dementia are not on any memory medication.
And yes, sometimes we have had patients coming to rehab from the hospital that do need to go to a psych unit and be on a correct balance of medications. I had one younger person in particular who had a lot of early/young chronic problems along with a severe head injury. This particular prior hospital admit he had enough medical issues to cause encephalopathy - so a lot additional things going on in his head. He was discharged to home with hospice but became violent and threatened his wife with a knife. The hospital âstabilizedâ him - but not; we had to have the fire dept EMTs come and the EMTs that transport - he didnât get violent with us but it tied up staff personnel (he was wandering into other patientsâ rooms and bathrooms - and he was a big guy). I called the hospital emergency room and explained that it was not an appropriate placement to us, and thankfully the hospital ER doctor realized that too â they could have sent him back to us. Once a facility accepts a patient/resident for admission, criteria has to be followed â our facility was ârevampingâ with more managerial oversight on rehab admission.
This is we hired an advocate to coordinate my parentsâ care. My sister and I were exhaled trying to communicate with the professionals who werenât talking to each other.
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I donât mind being an advocate and wouldnât trust anyone else, unfortunately.
The difference between the situation in âThe System Failed usâ and ours is that doctors were the ones with tunnel vision, in the article. At my motherâs assisted living, they are not supposed to diagnose, nor is the PT. Outside scope of practice.
I spent 4 hours in the hospital with my mother today. I hope I donât get COVID but have to do it.
She wants to know where her furniture is, thinks she has moved in. Tonight she was going to call a cab!
My brother just called and offered that my mother and I could live in his MA house (he has been in VT during COVID). I am stunned. I donât want to send her back to the AL for many reasons but also if she is nearing the end, I want to be able to see her. This was a very generous offer. My place is tiny.
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@compmom it sounds like going to your brotherâs place is win-win in a lot of ways.
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SOSConcern - I am sure there are a lot of instances where psych meds are useful and helpful for the elderly (I havenât seen those situations personally, but as you describe, they certainly exist and are important to handle properly).
In my dadâs case, he was a jovial, fun-loving person all the way through to the very end of his life. Iâd walk in the hospital room and there would be a circle of docs/nurses/aides laughing at something heâd said (also with air of surprise - they just didnât expect a witty, on-point comment from someone who looked so debilitated). So, in his case, meds were not needed. I just didnât like the rehab intakeâs absolute failure to assess/inquire/evaluate whether he needed meds before moving ahead to suggesting them. To me it looked like a âletâs manage possible trouble out of the gateâ without asking for more detail. Thatâs problematic, to me.
compmom - thatâs great news that you and your mom can stay together in MA!! Hopefully there is a good home health aide company nearby to give you some respite, if you go that wayâŠ
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Covid has added a layer of stress for seniors (and everyone else) and new set of circumstances. And of course many are worried about the effect on students; this also adds stress to âthe sandwich generationââŠand parents caring for parents (this thread).
@Jolynne_Smyth it sounds like your dad has passed and he stayed jovial, fun-loving all the way to the very end.
How dementia, encephalopathy (which can develop when an elderly person has a UTI, URI, etc; antibiotic therapies, maybe even sepsis; bouncing around lab valuesâŠ) affects an aging brain rather quickly - it is unpredictable and can have a behavior pop up out of no-where. Some seniors (like my mother, and often IMHO very intelligent people) are able to mask dementia for years - this was so with my mother until she was not able to function well independently.
With limits on facility in-person visits with Covid, it requires a lot of communication â and adds stress to everyone, medical staff and families.
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My motherâs hospitalist yesterday told me that there was no active bleeding. Today, however, she is getting another blood transfusion because her hematocrit, hemoglobin etc. were going down again, which indicates more bleeding.
I have talked with GI doctor there and the wonderful colorectal surgeon she had elsewhere, and two hospitalists and we are not going to explore the bleeding site with any procedures.
Tomorrow I talk with hospice. She canât just stay in hospital and get transfusions every 3 days. I will take her to my brotherâs house (he is living in a different state during COVID) and stay with her. If she returned to the facility she would be alone too much.
I kind didnât believe this would ever happen! I am sure you all know the feeling.
My mother was in good spirits today. I brought her the paper and People magazine. Like clockwork, third day in hospital, she doesnât remember her assisted living and thinks she still lives in her house, which she asked me not to sell. I told her I wouldnât and then changed the subject fast!
(I still havenât had any vaccine and trying to remember to keep concern about that during these other priorities. I donât want to catch COVID ad visitors are going to have to respect my wishes on that. I assume hospice folks will be safe relatively speaking.)
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Sending good thoughts your way as you navigate this next stage. Please be sure to take good care of yourself too!
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@compmom Iâm glad you can take your mom to your brotherâs house. I hope you are able to spend quality time with her and that you find comfort in being together.
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I hope you find speaking with hospice helpful, @compmom. Hospice and caregivers/Drs were able to help me with what to expect and how to anticipate the type of care that would be needed so that appropriate plans were in place.
All my best as you continue to tend your mother and hopefully yourself as well. It is a poignant journey.
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@compmom, Re:anemia - I am not trying to complicate your situation, but there can be other causes of anemia other than active bleeding. Earlier this year 95 y/o MIL had to be hospitalized and transfused for very severe anemia. Oral iron didnât help, nor did the iron infusions. Multiple specialty f/u appointments lead nowhere, but routine a f/u cardiology appointment showed the problem to be a severe heart valve stenosis. The narrow opening was destroying RBCs as they passed through.The trans catheter valve replacement fully resolved the anemia.
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@mominva I really appreciate your info. I have pressed every doctor for other possible causes for the iron-deficiency anemia, besides internal GI bleeding, including bleeding elsewhere (she is on Coumadin and during her COVID in January her INR soared to 5.3 but is back to 2.2), absorption issues (colostomy/hernia), kidneys (GFR 25-30) and cancer. She had diverticulitis that resulted in total intestinal blockage two years ago, which is why she has the colostomy. We almost did hospice then but actually surgery was the most palliative option.
Her lung CT a few days ago showed scarring and âground glass opacitiesâ probably from her recent COVID.
She has an enlarged heart and valvular issues resulting in continuous atrial fibrillation. Heart valve stenosis could definitely be possible.
I assume trans catheter valve replacement was invasive surgery. I can ask her cardiologist about this. I will also ask the hospitalist.
For GI bleeding it would be colonoscopy and endoscopy with repair of any bleeding polyps and I have not gotten an answer as to how much more would be done if a polyp isnât found. Doctors were relieved we didnât want to âput her through prep and procedureâ but it is hard to be 100%. I asked surgeon whether prep is even needed for the section of colon below the colostomy.
She is 94 with dementia. All the doctors seem to assume we will do palliative and no procedures. That said, I like to explore all possibilities so that the decision to do hospice feels like a well-founded decision.
I was really hoping that after vaccinations I could sit out on the terrace gardens at her assisted living and enjoy the sun with her again.
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Looked it up Transcatheter aortic valve replacement (TAVR) - Mayo Clinic
Her cardiologist didnât want to do a valve replacement 15 years ago (or maybe my mother chose; if I had been involved I would have been on board with the replacement).
This is minimally invasive but I doubt he would even agree to do it. Iâll ask about it though.
@compmom
TAVR is only non-experimental for about 10 years, so it was an open heart procedure when your momâs cardiologist nixed it.
MIL was diagnosed via echocardiogram, but needed a diagnostic cath to determine pressure gradient and valve size before scheduling the procedural cath to determine feasibility.
We got the impression her interventional cardiologist was a bit reluctant, but MIL pushed back - told them I understand the risks but I need to try.
compmom - glad your mom can get some happiness thinking of her home and spending time with you! Hope you are able to get some happy times together while still navigating all these issues. Hang in there!
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