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Hi,
Mom suddenly can't walk, very confused, very weak. I know she should be at the ER. I also know she won't survive another hospital trip or stay or rehab or any of the other myriad things that will happen again psychologically or physically. I know this is what she wants. At this point should I call hospice. I know they will come 24/7.
I just could use support that hospice can guide me in the decision.
I need to let her make this decision. I have care managers that I can call as well and will do that. Sunday in a snowstorm. Why not. Plumbing issues at new place. Why not. Just moved them still unpacking. Why not.

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Sounds like my Dad on Christmas day of 2023, got sick and we called 911, he was in hospital for UTI, which caused him to get sepsis, then he caught covid there despite having the vax, then Mom did too, then he had to go to a horrible rehab place that almost killed him with neglect, as was only place to accept someone with positive covid test, even though I went twice a day to watch over him, he got sicker there with more infection. I called 911 and he went back to hospital again, then came home instead of going to a different nursing home as we were too scared of them. That was a mistake as it was so difficult to care for him at home, the first weeks were a nightmare even with caretakers and home PT and OT as he was bedridden for first time in his life, so the bathroom issues were awful. And the longer they lay there in hospital beds, the weaker they become. BUT he slowly recovered over the rest of the year actually. He is on hospice but sort of just stable. Has Parkinsons and bad dementia, a tumor in the urethra and enlarged prostate, blood in urine, etc etc, has to have help with absolutely everything all day so we pay for extra full time caretakers all day. He can stand up and can walk a little and remains stable for now. He still enjoys things and has a sense of humor. We are lucky he is not difficult most of the time. At age 95.5 is for the first time in AL but that's because then Mom age 91 had a stroke right before Thanksgiving (such fun holidays and winters I have had)...so she couldn't be with him alone overnight anymore -and 24/7 care at home was even more expensive than their AL room now plus additional private caretakers every day. I couldn't live with them to do the overnights, it is just too difficult. The expenses now are sky high, for their AL room, the extra private caretakers and medicines and supplies. Hospice pays for some things but not all. He may go on for years yet. They both might. Will likely run out of money...BUT just to say UTIs are treatable and not necessarily going to be the end for your Mom, your Mom may not want hospital and rehab right now, but depending on her age and condition it is certainly possible to come out of this and recover. My dad is relatively content in the AL. He watches his DVD musicals, eats quite well as he likes their meals, takes a walk with me up and down the hall, sits in his recliner and sleeps a lot. He has no real pain despite his many issues. I spend a lot of time every day caring for them, visiting them daily, spend hours to help them at the AL. I am responsible for almost everything for them as siblings are on the other coast. I wish they could go back home, and that Mom could be the way she was before Thanksgiving. She was still driving, using computer, email, very sharp still. But it isn't too likely. It's very depressing now. But what can you do...
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JanPeck123 Feb 16, 2025
Constance, I am so sorry you had such difficult holidays, and difficulty in general with your parents' health.
Yes, it can be depressing.
It sounds like you have done everything you can for your parents at this point. They are being cared for and seem content from what you describe.
Time to take some down time for yourself, so your own health does not start to decline from stress.
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Call 911 and let the EMTs evaluate mom.
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You might want to check POLST form (Physician Orders for Life-Sustaining Treatment) and fill it out as well. Your mom's Dr. will need to sign it. DNR is no longer enough in hospital stays, I learned that the very hard way.
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She's not on hospice currently.
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Is she ON Hospice, Casole?
Because that has to be ordered. I am familiar with your ongoing with mom, here, but forget if she is registered with Hospice.
You truly need medical here, so if she is already ordered hospice by her MD, then yes, definitely call them. This COULD just be a bladder infection. Have to tested the urine with the dipstick method? You can get them from pharmacy and they aren't expensive. Look for nitrates, leukocytes being positive. Your hospice MD can order antibiotics.

So know if you are planning on letting her die at home and you have NOT yet implemented Hospice this won't work. Her organs will start to shut down. There will be confusion and agitation.

So if on Hospice, yes. Call now.
If NOT on Hospice as ordered by her MD and already working with you then she must likely go to ER. There you wouldn't need to get an admit. They could check urine. If no code and DNR status with you as POA a Social Worker can see you IN THE ER and work to get you back home WITH HOSPICE.

So sorry. But no matter WHAT mom wants you can't handle organ shutdown with no meds for agitation and your mom will get increasingly out of control. Call Ambulance if not already on Hospice.
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casole Feb 9, 2025
Thank you. I wasn't clear. She is not on hospice currently. The last time she refused to go to ER they were going to come out and tell her her options. But she agreed to go. As she did this time too without a lot of agitation thank goodness.

We are currently at the hospital and they are running the gamut. I had to specifically request they check for UTI. They have her on a purewick for that since she's so weak instead of trying to get her to the bathroom. But she hasn't been able to go unfortunately.

Covid negative.

So once we find out what's going on there will be decisions from there.
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If this is "sudden" this requires a call to 911
This could be anything from "nothing" to UTI, Stroke
If mom is on Hospice now then you call your Hospice. ANY change in status either physical, mental should be a call to your Hospice.

If mom is not on Hospice now you call 911 and once this issue is resolved you can ask at the Hospital for a Hospice referral and the chances are good that there is a Hospice rep there and they can evaluate her before she is discharged.
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casole Feb 9, 2025
She's not on hospice currently
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...suddenly can't walk, very confused, very weak When this happened to my Aunt last month, it was the lead-up to a stroke (and shortly after a stint at the ER 5 days prior for aFIb and CHF symptoms). Call 911 right now. If you are her PoA make sure to bring the paperwork and also if she has a Advanced Healthcare Directive. You will need this. While at the ER, you should ask about hospice facilities or a hospice consultant. She needs to be assessed for hospice. Hospice does not mean she gets 24/7 "care" so make sure you understand what it means. It is covered by Medicare. I wish you success in getting your Mom proper diagnosis and care, and peace in your heart whatever transpires. You're doing your best!
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casole Feb 9, 2025
Thank you Geaton. I have all the paperwork and her advanced directive which refuses all interventions unless there is a reasonable hope of recovery.

Trying to keep my dad calm. It's all so very hard.
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