Shxt storm, marathon ER visit, a fall, and hospice

ButterflyWings

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.

Battlebuddy

Butterfly wings , I’m so sorry for your really bad time. It sounds aweful. 

I’m happy you qualified for Hospice. That’s how it went with us too- it just kind of came out of nowhere. They have been wonderful for us and I’m hoping the same for you.

David J

BW, how awful!  When stuff like that happens, it seems like you can’t take any more, but somehow you can. Sorry you had to go through all that, and I hope things cslm down now that you have hospice help.

LadyTexan

Dear Butterfly Wings,

That is so very much for one person to manage. You are amazing, brave and strong. I am sending you cyber hugs and love.

Thank you for the update. Thank you for sharing. Keep on breathing.

God bless you dear.

White Crane

Butterfly Wings, I'm so sorry you had to go through such an awful day!  It's amazing how fast things can change.  Now that you have hospice care, maybe things will calm down...I hope so.  Sending hugs and prayers.

Ed1937

BW, I'm sorry for everything you've been through lately. But now with hospice, maybe the worst is over, and things can return to what was normal. Keep posting. We're here for you.

Cinsababe

Butterfly wings, that sounds awful. When you're in the middle of something like that all you can do is take the next step. I'm sure you haven't even had a chance to really process it all yet. I am so glad you are getting the needed help. It gave me shudders just to read about it because I know we have all either been there or we'll be there soon. Praying for you.

Doityourselfer

You certainly had a rough couple of lousy days.  Good to hear hospice is involved.  Thanks for the update.  I admire your strength.

DrinaJGB

You must feel like you were hit by a train and then broadsided by a bus. SO sorry!! This disease tests all of our limits.

Sligo177

Butterfly Wings,

God bless you and your DH, it's such a tough time for you.  I'm glad you do have some help.  Hope you can get some rest and that things go more smoothly.  You are a strong person, and your DH is lucky to have you there. 

Suzadoo

omg.....thats terribly unsettling and sad and lonely.......I'm sorry its been a sh-- show.  this is such an awful disease.  praying for a better tomorrow.  I get it.....