Shxt storm, marathon ER visit, a fall and hospice

ButterflyWings

[Posting in 2 forums] I haven't posted in the last week or so because it has been absolute chaos here. 

1. Spent 7 hours in the ER last week on Friday but at least we got the horrible balanitis under control.

2. Then, diarrhea set in (maybe antibiotic side effect?) and triggered bowel incontinence like I can't even explain. Luckily we have a small bathroom, but it was all over the floor, and dude closed the door trying to keep me out, spreading it more... then the next night similar problem and he kept stepping in it while I tried to clean him and the floor and everything... 

3. Before too long DH seemed unresponsive and/or losing ability to control his legs. I have seen this described here on these boards and just didn't expect it all to happen at once. omg

4. Well, after three 911 calls, in 2 days, back to the ER (in ambulance and a 14-hour stay this time!) they would not let me back to see him for the first 2 hours...I will describe how I escalated to resolve that another time, but it was just the worst day we have had in a long time. I put my foot down that if this is palliative care, its not what we signed up for. They are great but can't help if something happens in the middle of the night, which has been our unfortunate situation recently.

5. So, once we left the ER last night, got home and stepped out of the car, DH fell on the driveway before I could grab him to steady his suddenly weak legs.  Hard.  He skinned his elbow and bumped his head but se are so lucky nothing was broken. It was just the end we needed to the day from you know where.  I had to call for a  Fire Dept assist just to get him to the door, up the stairs and into the house + bedroom. 

6, I called the Dr. and palliative care to insist on a hospice evaluation and they came out today. He qualified and we are about to get a bunch of equipment plus the meds delivered and bedding supplies etc. I am so grateful for this needed extra support, but also...still stunned at all that has happened in 36-48 hours. Out lives have literally shifted drastically in just 2 days.

It feels like the beginning of the end. Just sharing. I will keep breathing and update you all again soon.

Quilting brings calm

Oh. I am so sorry to hear this happened.  You must be exhausted. I’m glad you now have hospice  that can help and support you.  So whatever is going on isn’t temporary due to an infection? 

 The palliative care terminology confuses me for my own situation. It was on my dads discharge papers the last time he was in the hospital. Yet we’ve never said he wanted any change in care, just that he has a DNR.  And even that isn’t what he really means  sometimes. He doesn’t want to have a ventilator or feeding tube to just prolong his life in that state.  His lungs aren’t strong enough for surgery. . He has COPD and cancer. however his doctors certainly haven’t changed  their care of him. He’s not the one with dementia, though. 

So what did that terminology mean in your case? 

M1

BW, I am so, so sorry for the awful ordeal you've had but am SO glad hospice is on board now.  Sounds like you did a wonderful job handling all this, a true warrior for your husband. Hope you are able to get some rest.

harshedbuzz

BW-

I am so sorry for all of this, but especially for the breathtakingly sudden nature of the change.

You are a wonderful caregiver and advocate for your DH and I hope your hospice team can ease your burden a bit.

HB

LicketyGlitz

Wowza, Butterfly, you and your husband are in the thick of it now, eh? I'm so sorry for you both, we've all been through it but not at the breakneck speed you two are tearing ahead. You've done zero to ALL CAPS DEMENTIA in record time.

I know, right? Not exactly the race you wanna win. I hope hospice is awesome for you! Everything's gotta be a plus at this point I'm guessing. Mom's hospice was amazing! Dad's was a little lackluster, but both were helpful.

Keeping you and your fella in the good thoughts category. I'm hoping at the very least things calm a bit so you can catch your breath. Punch dementia in the face if you get a chance!