How to explain why hospice means no hospital?

Quilting brings calm

Mom has been on hospice for 3 weeks. No matter how many times we tell her she is not dying, she won’t believe us. Hospice has added Seroquel and Ativan to her list of medications

Fast forward- she fell Friday, didn’t hurt herself.
She fell midnight Saturday night. I was called and told she didn’t hurt herself. I tried calling her multiple times Sunday, she didn’t answer. Sunday night she called - said she was in pain and wanted me to take her to urgent care. Because some unknown person had suggested she have an X-ray. She also told me she was out of Aleve. I had some, so I took it to her. I also called the staff on the way out and had the AL nurse call me from home. I got more details about the fall, and a report that she had been up and around walking fine. She had fallen into the shower stall when she went into the bathroom. AL nurse thinks she might be having issues adjusting to the new medications. She has lidocaine patches for her back, so they had applied one right before I got there. Mom was fine when I got there- no bruising. Walking fine. I explained to mom that hospice meant she didn’t go to urgent care - the hospice nurse comes to her. I left a message for the hospice nurse at the number I had.

Today I called mom multiple times. She kept pushing buttons on her phone because she couldn't hear me. I think she gets herself on mute. So she kept hanging up on me after a couple minutes. I gave up.

She called me at 10pm tonight - wants me to take her to the hospital tomorrow because her back hurts. I asked her if she had been up and around all day. She had. Said she didn’t see the hospice nurse. I’m sure she did because it was her day to come. Plus the AL nurse was there today. So I told mom again that she no longer goes to the hospital - that the hospice nurse comes to her. I explained that she will be sore for several days.

I didn’t go out there today. I had planned to, but since I was there last night, I skipped today. So I will go out there tomorrow.

Just how do you get a PWD to understand that they aren’t going to the hospital every time they hurt?

This post probably make me sound callused and uncaring. That’s not the case. I just know that there will be nothing done at the hospital. And I’m so tired of the multiple daily calls and her thinking I should be there every single day now.

SDianeL

So sorry. Unfortunately you can’t make her understand or remember. Her brain is broken. Make up a fib. Something like she can’t go to the hospital unless the doctor says so because insurance won’t pay. Why does she know hospice is there? Tell her it’s just another nurse. I would have them take her phone away. They will call you if anything happens and they will transport if she really needs it. Tell them what your wishes are. They understand.

Quilting brings calm

She knows she is on hospice because either the resident aids or the hospice nurse told her. We have since removed the hospice information from her room. The AL nurse told her staff to stop using the ‘H’ word around her. But it was too late. She somehow remembers the word.

Your suggestion is good. It’s not even a fib. The hospice nurse is indeed the one that has to sign off on the hospital for insurance to pay. I think it’s a ‘ remove from hospice, go to the hospital, come home, go back on hospice’ process. Not that I plan on taking her to the hospital for this.

I’m just so frustrated tonight. It didn’t help that while I was on the phone with her, our older son called. He needed some info retrieved from our deceased younger son’s phone. ( it’s at our home). That’s probably part of my figuratively hitting the wall feeling.

SusanB-dil

QBC - nobody would think you are callous at all…

But as is said now… 'yeah, no' - can't reason with her. I know - you already know that, but yet, we try. I know I do… and I know it doesn't work. 'Why can't she just….' oh, yeah, because she can't 'just'. So yeah, we feel like we are hitting that wall, over and over.

Agree - if not taking the phone away, maybe block the calls until you are at a better time. Plus dealing with your son's phone - so sorry you are dealing with that loss, too…

H1235

Its frustrating when a staff member says something without thinking, causing family so much headache. Could you tell her, you are right mom you don’t need to be on hospice anymore, then just continue it as normal? I think telling her that everything will be taken care of right there from now on is a great idea. Add to that with it’s so much easier for you not having to get out, how nice that everything can be taken care of here. Maybe spin it as a new service AL is offering. Maybe it’s time to ditch the phone or find a simpler one. You are not being callous. Your are being realistic and practical. You can’t get through this wearing your heart on your sleeve, it will eat you up. Good luck

housefinch

Agree with no more phone. And is she receiving anti anxiety medication? Sounds in order.

Quilting brings calm

@housefinch

I took the phone with me today ( at least temporarily) using the excuse that I needed to see why she is not able to hear me on it. Truthfully she doesn’t even give me a chance to reply to her before she decides she can’t hear me.

She was already on sertraline and mirtrazipine. Hospice has added Seroquel and lorazepam. However I don’t think the medications have really have a chance to work yet.

I was in the AL nurse’s office when the hospice nurse came into her office. He had already stopped in to see mom. We had a good conversation and hospice will add Norco for her pain and an antibiotic in case she still has a UTI.

I then went to see Mom who didn’t want to talk and just wanted to go back to bed.

In my non-medical opinion, I think she is quickly physically declining. I am beginning to think that she is within a few months of dying after all. No one has said that and I didn’t think to ask in the conversation with the hospice nurse today.
ETA just talked to the AL nurse by phone- she thinks it’s the UTI and that she is not dying soon. Soon is a relative term. I stand by my few months prediction.

Emily 123

Fingers crossed, QBC—it could very well be a UTI. Glad that you had a chance for a face to face with hospice today, & sorry you've had a rough start to the week. Skip more than a day if you need to recharge a bit.

fmb

QBC, A UTI can really play havoc with their minds and behavior. See how she is when the UTI is cleared up. The new psychiatric meds can take six weeks or more to reach peak effectiveness. It's hard, but be patient.

In my experience, a good hospice nurse will not give a timeline until the patient is actually starting to transition to dying. I have tried to pry an estimate of DH's remaining time out of his nurse to no avail. And that is probably as it should be. There are just too many variables, and they don't want to be drastically wrong, causing the family even more distress. I do understand that it is frustrating.

​fesk

I am sorry you and your mom are dealing with all of this, QBC. The Seroquel and Ativan can also definitely make your mother tired. Many have said their loved ones adjusted to the Seroquel in a couple of weeks as far as the tiredness goes. I usually think it is best to only make one change to medicine at a time so you can track changes/side effects. With two new meds in play and a possible UTI, it will be difficult to sort it all out. My mother's doctor doesn't like to make any changes to medicine until a UTI has been clear for a couple of weeks if possible.

Please keep us posted and I hope all is sorted soon for you both.