1st Fall: Hospital, Hospice, Help!
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.
She would also probably drive the caregivers at the MC crazy, asking every 5 minutes, for them to take it off. 🤪
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. 👵🏻
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.
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. 😠
I thought that was astounding.
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.
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.
I’m sorry that your Mom’s needs weren’t met. Ugggh. Sooo frustrating!
You could get her a MedicAlert bracelet, maybe?
My (much younger) friend put QR codes onto his child’s jacket, backpack and hat. Maybe someday for seniors?
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.
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.
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.
I appreciate you sharing this!
As I said, this was her first fall. I’ve got a lot to learn!
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.
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.
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!