1st Fall: Hospital, Hospice, Help!

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1st Fall: Hospital, Hospice, Help!

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My mother took her first fall at Memory Care this week. She tore open her face and badly needed stitches. Mom has dementia. I would guess that it at the Advanced Stage.

Memory Care called the ambulance, and also called me.

As I many of you know, I have spent the last couple of months in and out of the hospital, with surgery complications and infections, and consequently, couldn’t meet Mom at the ER. So, my husband was by her side for the entire visit.

As I wasn’t there, I could not run interference between what the hospital wanted to do, and what SHOULD have happened. My husband did his best, but is not a pushy advocate, like I can be.

My mother is a Hospice Patient. She is ambulatory, but is qualified under their Palliative Care program. So, No Extraordinary Measures.

She was given 2 CT scans, along with X-rays, and the stitches, of course. It took HOURS. She missed her meds, and became almost combative. It was torture for her.

I’m looking for suggestions as to alert EVERY SINGLE CAREGIVER that she both had dementia, and should only be given comfort care, stitches, or other means to stop bleeding, etc., since she is a Hospice patient.

No one took a look at her chart. Having instructions in there wouldn’t have helped. Having dementia, Mom could not advocate for herself.

If I can’t again be there if another emergency happens, does anyone with more experience in this situation have any suggestions to help Mom avoid after-transport extra-ordinary interventions?

Thanks in advance.

Alzheimer's & Dementia Emergency Care Hospital

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The facility cannot prevent falls with a person who has dementia. Her memory still has the same "I can do". She can not avoid danger when she fails to use a walker or call for help. She is on Palliative Care and you do not want her sedated so she does not want to get out of bed. Tell the facility they are not liable to falls

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cxmoody: In this day and age, most modern hospitals have access to a patient portal, where ALL patient information is digitally stored and readily available to medical professionals.

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Palliative care continues to treat everything along with giving pain management. Hospice care does not continue to treat the illness that is causing hospice but will still treat anything that can create comfort for your mom - i dont think the tests they did were out of the ordinary for either hospice or palliative(but im not an expert). It doesnt sound like she was imminently dying and thus they were still trying to see what was wrong to make her more comfortable. If she was truly at the end, they wouldnt have done all this but rather started morphine drips, etc.....its not easy by any stretch of the imagination.

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First of all, with dementia, do NOT BRING HER HOME. She must be in a facility. Speak with an eldercare attorney, a social worker, and the facility and your doctor - figure out exactly what legal papers and procedures they need in dealing with this situation and then get them. Do this at once and never wait with anything like this again.

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Most memory care facilities require a CARE documents package to be posted in a prominent place for the first responders to see. This package has her living will and other medical directives, and perhaps should also include a list of her medications. Maybe have two of them, (keep the originals) but have sets of copies made that first responders can take with them to the hospital. Talk to the nurse and case manager at your mother's facility about how best to handle this. You'l need their help.

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Clarify what she is under…. Hospice or palliative. While hospice provides palliative (comfort) care…. A new level of care is emerging that is called Palliative. Under this, you can receive all therapies, tests, treatments etc. My husband has been under Palliative care now for a few years. It is designed for someone with chronic issues who is not yet hospice eligible. It is a team approach to help make decisions going forward whether it is time to transition to hospice. The two are commonly mistaken for being he same (and sometimes it is). My husband has PD for 33 years and has had several issues that with the right medicine change and appropriate treatment plan he would bounce back almost to where he was. I know there will be a time that this will not be the case and hospice will be very appropriate but for now we have a palliative care team involved. Over 20 years ago he broke his hip and the rehab doctor seemed to write him off and had I gone along with his opinions and lack of care he would not have fully recovered…. Of course dementia was not an issue then. He recovered and is still walking with minimum assistance. So, I’m just suggesting to find out what plan she is really under. True palliative care and hospice are paid by Medicare but with hospice there are limits on charges they will pay. I totally believe in hospice when it is the right time. Our palliative care is provided by a hospice company but I can still pursue therapies, testing, meds, and treatments for him that I feel are appropriate. FYI, when my father was in assisted living with a DNR my sister was told he would still be sent to the ER because they did not like patients dying in the facility.

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Thanks, everyone, for all of your ideas.

I feel supported, cheered on, and have learned a bit more then I knew before asking this question.

I appreciate you all for helping me still another time through this sometimes baffling season of life!

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Ask to have a care conference at the facility, with their staff and the hospice care team and you and your husband, to discuss your mom's needs, who is responsible for which services, and the goals of care.
If COVID is preventing this sort of meeting, maybe a Zoom call with her hospice nurse to get some of your questions answered. A similar phone call with the resident services coordinator at memory care will help, too.

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Please consider putting together a notebook or file folder for your mother's (and every person who can not advocate for himself or herself) care. In it, keep a copy of their medical and surgical history with dates. List their medications and the time the medications are given (really helps the nursing staff, like me). Also list all allergies to medications or other substances. If she has an advanced directive, DNR, and/or power of attorney for medical decisions, keep copies of those in there are well. This can help medical staff when "the patient" is not able to give those details. Ask the staff to make copies of all paperwork for their files, but keep the originals for your records.

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I have a typed page along with mom's DNR to go along with her en route by rescue to a hospital.

This info lives on her refrigerator and a copy is in her wallet.

She only had to go once during covid and i could not go in the ER. The ER physician and staff called me in a timely manner to go over her needs.

The fire/rescue staff really appreciated the one page typed med list along with 2 family numbers and a list of her diagnoses to date.

Her "to go" tote is always in the front room against a wall and clearly visible.

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Once she's in the ED they are required to do a CT by the care guidelines. They're not going to sew her up and not assess if she's harmed herself--she's compromised by her dementia.

Keep in mind that the CT's a diagnostic tool just like the X-rays--It doesn't provide a level of treatment.
Either they did a head CT, with and without contrast, looking for a bleed, or they did a head CT and also looked at something else like her spine or hips. The X-ray was probably to look for broken ribs.
Unless you lucked out and have her at one of those facilities that provides a wide level of care, the MC's isn't going to take her back if she's got broken ribs, or if she fell because she was having a stroke--you'd be looking at skilled nursing or rehab first. Very likely this was why hospice was talking with the ED quite a bit--trust me, the ED was aware of your mom's status if hospice was on the phone.
If the tests in the ED showed she was having something acute like a brain bleed then the POA would be asked what their preferences are and would be able to initiate comfort care/ DNR.
I don't see that the ED did anything unusual, and whatever documentation is in her chart re: hospice wouldn't have been a reason for her to not get a 'Fall' workup so you could make informed choices about her care.

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This info about the Memory Care not taking her back with broken bones is new to me. Thank you.

I appreciate you sharing this!

As I said, this was her first fall. I’ve got a lot to learn!

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I would go to the director of nursing to voice your complaints about their ignorance of her hospice status. Ask the DON how this can be fixed. What procedures need to be in place to avoid this? It should be in neon on her chart. Suggest an in-service where the staff gets training in how to work with people in hospice. I have seen a DNR in bright colors on black on the door as well as the bed. While not the same it would call attention to her different status. This was absolutely awful and wrong. If they call you again after another fall now you know to tell them to just do comfort measures—like stitching up her face.

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Many memory care facilities send patients out to the ER after injuries, even with hospice patients. In some facilities, it is their rule and they even send minor falls with no apparent injury. This is because memory care and ALF staff are not licensed nurses, and lack assessment skills. Even hospice nurses can and do request transport to the. ER for a patient who falls, to assess for injury. As Elizabeth Y noted, tests to determine what is wrong need to happen before a decision about treatment can be made.

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So, they stitched mom's wounds and then ran some tests. What would you have WANTED them to do?

This is a fine line for hospitals. They see an elderly person with huge wounds, they are required to deal with those, along with THOSE comes blood tests (normal and standard) and then CT scans (also normal in the setting)...at what point would you have said "STOP". After the stitches? Just stitch up the obvious and send her home?

I wonder if you had done that and she'd had a subdural hematoma that could have been caught and remedied--but she died instead--would that have made you feel like the right things were done?

I'm not on your back--I'm just seeing how this can work its way into my life with 2 elderly moms--both have DNR's but both fall and are taken to the ER and treated. Minimally x rays and sometimes CT scans. Always, always blood work. I'm not the one who ever takes them to the ER, but they've both been, multiple times. To THEIR understanding, the DNR is only in effect when they are not able to make decisions anymore. A konk on the head wouldn't really do that--

Not trying to stir the pot, just really want to know how/who makes these decisions.

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Sorry but, once a very elderly loved one goes on hospice, a subdural hematoma should NOT be 'caught & remedied' b/c doing so only prolongs their agonized lives. My mother went on hospice on 12/21; if anything at ALL is done to prolong her suffering ie: her life, I would be furious. She's 95 on the 20th of this month and has not had a good day in I can't tell you how long. Advanced dementia is the cruelest disease on earth; combine it with another dozen issues and what you have is a huge MESS that nobody should have to face. Death is something she prays for and so do I, frankly. It will finally mean peace for her and an end to her years of suffering.

From the hospital's standpoint; fix it fix it fix it. From the demented elder and their family's standpoint; bring this suffering, angst and chronic agitation to an end, please. At least for those of us who believe that death is a new beginning to eternal life.

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QR code iron-on or patches. It’s those square checkerboard things you scan with your phone camera.

My (much younger) friend put QR codes onto his child’s jacket, backpack and hat. Maybe someday for seniors?

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A face wound is a head wound, and they would have been negligent not to investigate a potential brain injury, so I'm not sure I'd classify what you describe as extraordinary or heroic. I'm just sorry they didn't get more of a move on and make her more comfortable (including checking for any time-sensitive medication on her px).

You could get her a MedicAlert bracelet, maybe?

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So they needed to do the CT scan twice plus xrays? Sounds like someone was padding the hospital bill. I'm surprised they didn't test her for covid and put her on a vent too.

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My recent experience with mom in the hospital is this: a horrible HORRIBLE lack of attention to details and care in general. I was flabbergasted at she was given the bum's rush with me THERE......me AND my big mouth, which managed to get nothing accomplished. If a patient doesn't have The Virus now, then they're shown the front door, it seems to me, especially if they're very elderly. I was given the explicit feeling that nobody cared at ALL about my mother, her symptoms *chest pain* or why she could be having chest pain other than from a heart attack which was not immediately apparent on the EKG done in the ambulance. I think she has a pulmonary embolism, but the hospital refused a CT scan and she was sent on her way after being given a BLOOD TEST to check her kidney function!

It seems from your mom's experience that she was given TOO MANY tests and spent too long in the ER, which is the polar opposite of what happened in our case.

See if your mom can get on hospice now so she *and you and DH* can avoid going to the hospital altogether. That's null and void, of course, if she's bleeding profusely and needs stitches again or some other calamity hits, so I don't have any sage advice for you Colleen, I'm sorry to say. We are living through a very, very frustrating time right now in the world of healthcare, sadly.

Perhaps if your mother needs ER attention again, you can instruct your DH to put YOU on the phone with the attending physician? Or have him go to the ER with a note expressly stating your wishes that mom is a dementia/hospice patient who's only to get the minimum of care and no scans, etc.

So sorry this happened; I feel your pain. Hope it all works out in the end.

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I feel like we are learning kind of like new parents of babies do. Total newbies at all of this, but learning through the school of hard knocks. 😜

I’m sorry that your Mom’s needs weren’t met. Ugggh. Sooo frustrating!

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I supposed she most have a Living Will and a Power of Attorney with a advanced directive of No Resuscitate. If not, you got a problem, because she is now mentally incompetent to sign any Power of Attorney. Anyway, are you her legal guardian?

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CX, I just want to empathize. My brother, SIL and I once spent an HOUR with an NP at a highly rated hospital in Connecticut where mom had been admitted, going over mom's meds.

Come to find the next day that she had been given NONE of them and that those electronic "notes" had disappeared altogether.

I don't know the answer, but assuredly, you are not the one lacking here.

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I don’t have any good ideas for you, but I heard of this happening from a friend yesterday. Her brother in law was put in the hospital with some side effects from cancer treatment, and they treated him as though he had dementia. His wife had spent more than an hour the day before with the hospitalist outlining what was going on with his health and all about the cancer treatment, but when he ended up in the hospital again, nobody looked at any of those notes the hospitalist had taken. When she asked why not, she was told they treat the symptoms as they are presented not based on medical history.

I thought that was astounding.

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Baffling.

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Is she on Hospice or Palliative Care? If Hospice then the facility should have contacted Hospice first.
You and your husband should both carry her information. POLST or DNR and a copy of anything that treating medical personnel should be aware of.
A friend of mine carries all her medical info on a flash drive that is on her medical alert bracelet. These can also be necklaces as well. Might not have helped if they do not take the time to read a chart! (a bit extreme but she is highly allergic to morphine and has a tattoo on her arm stating "no morphine" .)
Could your husband have gotten you on the phone so that you could have talked to the Nurses, Doctors and anyone else that was involved? The other option would be asking to talk to the Hospital Social Worker. And if mom is on Hospice the staff should be aware of that.

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Mom is on Palliative Care, a program administered by her Hospice. So, No Unnecessary Interventions.

Interestingly, Hospice spent lots of time on the phone with the hospital, and the nurse in the ER. Our wishes didn’t get translated to Mom’s care, however.

I guess they would have needed Mean Old Me to jump up and down and make things happen. 😠

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Is there a POLST done and on record at her facility? Is there a DNR and advance directive? Without your being there, and with the stress and lack of ability to even staff the ER right now I can't imagine what else you might do save give a call to the ER and ask to speak to the nurse. What a terrible burden at this time, and I am so sorry for all you are dealing with now, CX. I hope things go better soon.

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Yep. All the paperwork has been done, and is on file at Mom’s Memory Care. It all goes with the patient for the transport. Problem is, no one at the hospital looked at it.

It’s like there is a Little Old Lady protocol, and a patient is immediately plugged into it. Then, it’s off to the races, with a zillion tests and interventions. I know that the ER is a tough place to work and staff and negotiate right now. Avoiding extra interventions would have saved THEM time, as well. 🏥

Unfortunately, Little Old Ladies on Hospice don’t seem to have a protocol of their own. 👵🏻

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What about a medical alert bracelet (or necklace)? Would she keep it on? I'm so sorry for this distressing situation -- I'm sure you'll get many other suggestions that will hopefully help "next time".

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Mom definitely wouldn’t keep a bracelet or necklace on. 😟

She would also probably drive the caregivers at the MC crazy, asking every 5 minutes, for them to take it off. 🤪

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1st Fall: Hospital, Hospice, Help!

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