So, it’s time for hospice…
I walked into The Facility, and they were waiting for me. Two nurses and a guy with a suit and a briefcase. They tried to smile, but the guy smiled like a funeral director.
“Hi, Patti, I’m from hospice,” he said.
So begins the end, my dear friends.
They Are Fantastic
I pasted a smile on my face, and replied with “Where do I sign?”, because this wasn’t really a surprise. My response surprised him though, let me tell you! The charge nurse poked him and said “I told you she’d be cool with it”, shaking him out of his shocked face.
It turned out Mom was referred to hospice from her attending physician, due to several factors. While she has had a continual decline lately, the thing that really pushed it over the edge was a deep cough that sounded like it might turn into something really bad. I knew she had been declining, and was more concerned with the cough than I was letting on, but apparently they noticed, too.
I dealt with hospice, quite briefly, when Pop was failing. Bucking the average, Pop was in hospice only nine days, declining so rapidly they didn’t even classify him as “actively dying” on the day he stopped breathing. Having had some experience with them, I knew they were in my future, and I recognized the incredible value that could bring to Mom as things continued to decline.
What exactly is palliative care?
So the way hospice has worked for me with my two parents has been very similar, but could be very different for your loved one. In both cases, we were strictly going into a period of palliative care—not preventative care or treatment of anything. When Pop went into hospice, that meant stopping a number of medications that were treating his various problems and pains. With Mom, she wasn’t on much of anything, so it wasn’t anywhere near as drastic a change.
In both cases, the orders I gave hospice were “Calm and Quiet”. That is what I wanted for both of my parents. I wanted them to maintain as much dignity as possible under the circumstances. I wanted them to be as calm and relaxed as possible, and I wanted them to suffer no pain at all.
For Pop—with significant physical problems, and Mom—with only mental issues, this resulted in the exact same types of medications being approved by me and hospice. Anti-anxiety medications and morphine. That’s it.
Calm and Quiet, BooBoo. That’s all that matters to me near the end.
Signing The Document
Do you remember when your kid was little, and they needed surgery? You had to sign a document that it was okay if they killed your kid—that you wouldn’t blame them or sue them. I hated that document so much I made Sweet Husband sign it, because I felt like I was giving them permission to screw up.
That’s what hospice paperwork feels like to me, too.
So, I signed on the dotted line. With both a tear and a smile.
I remembered doing it for Pop in 2016, and feeling like I was signing his death warrant. I had that same sinking feeling this time with Mom. It didn’t last, but it was there.
What have I done?
Exactly what I promised to do, all those years ago, when they were healthy and strong. I’m finishing The Job. On their terms.
The First Few Days On Hospice
The first 48 hours with hospice are the most interesting I’ve spent as The Mayor. It is a whirlwind, during which you feel in supreme control, and completely out of control all at the same time. It comes at you like bugs when you’re riding your bike downhill with your mouth open. You are choking, but have never felt more powerful. Buckle up, buttercup.
- Lots of people – Between the people going to The Facility, and the people calling me, it was extremely busy. You hear from nurses, CNAs, spiritual advisors and social workers. All within 48 hours. Write down names and especially phone numbers—this is your new team.
- Lots of visits – Everybody on my phone list visited Mom in those first two days. Some people just went to check in, but the Registered Nurse and the CNA started the very next day. With Mom being non-communicative a lot of the time, the visitors would call me from her bedside to check in and let me know what they were seeing. It was like I was really there.
- Lots of equipment – They ordered a wheelchair immediately, since Mom was barely moving around by that time. They got an improved shoulder chair, a hospital bed and an oxygen tank there within two days. Her room has less of that “homey” feel, and looks much more like a hospital room, but that’s just where we are now.
- Lots of support – Every phone call reminds me they are here for the entire family. When they asked me what I want for Mom, I said quite quickly “VISITORS”, so they immediately put her on a list for volunteers who visit shut-ins. Just like that.
- It’s dizzying – Make no mistake about it, it is quite overwhelming when it all lands on your phone. When I did it for Pop, he was at my house and I was off work, so it was a different experience. With Mom, things are happening without my constant presence, which can be frustrating. But, at least they are happening…
How Long Will It Last?
- My experiences – Pop told me on a Friday he wanted no more medications, and I called Hospice Saturday morning. They weren’t even sure they could take his case, but we made it work. He was dead eight days later, having used very few hospice benefits. They were immeasurably supportive to me, though, and made those last few days much easier for my family. With Mom, she started hospice three weeks ago now, and this will be slow and gradual for sure. While she gets weaker every day, her vitals are completely stable and she needs no oxygen. Remember the cough we thought might become problematic? Yeah, well, it just went away—that’s how strong her constitution is. This is going to be a long haul.
- The hospice model – What was explained to me when I asked is that the hospice model is that death is usually imminent within six months. This is definitely a very loose definition, since Pop was eight days and Sweet Husband’s brother was in hospice for three years. What that has taught me is that hospice won’t leave you high and dry if things do not progress in the “normal” way. It makes me feel much better to have them onboard for the duration—whatever that duration happens to be for Mom.
How Do You Share The News
Hi, I’m Patti, The Mayor of Crazytown. I get to make the really fun phone calls. You know, the “Hi, Mom is on hospice” calls.
It’s kind of a death sentence. Make no mistake—it is the beginning of the end.
One of my siblings said something like, “Yeah, but, we can take her off hospice anytime we want, right?” To which I was forced to reply that “Yes. I CAN. But I won’t. This is it.”
Being The Mayor has been filled with those types of moments, when the bad news comes to me first, and I need to interpret and share for everyone else. This one wasn’t any different—or any easier—than the cancer diagnoses or the broken hip.
So, by all means, let everybody know that you’ve made the hospice decision as soon as you can. Whether they come or not is out of your control, but I won’t be an information whore—not when we are so close to the end of my term as Mayor. I won’t change who I am.
What They Provide To You As A Caregiver
I firmly agree with the philosophy of hospice, and thank them for all of their service. Make sure you respect them—they will be doing some of the heavy lifting for you.
My best advice to you is to open up to them—your fears, your hopes—so they can work behind the scenes to care for you and the rest of the family. They can only respond to the information they are given.
This is a vulnerable time as Mayor. Embrace it.
In the end…
They will deliver peace, calm and dignity into the scary world of end of life care.
They will bring your loved one Home. They will deliver Mom to Pop, and Nanny. She has been asking for them for so very long.
And I don’t have to be The Mayor all the time. I get to just be The Daughter. I miss that.
THANK YOU FOR READING THIS FAR!!!
Wow! You made it! Thank you for reading all about hospice care basics!
Hey, since you’re here! You may as well check out tax season for the elderly, here, or if you’ve read that, check out more eldercare products you need, here! Or maybe you want to hear more about Pop, here. Or, check out our other topics here! Either way, I appreciate you!
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Resources
https://resources.amedisys.com/coping-tips-for-when-your-family-member-is-in-hospice
https://hcoga.com/blog/10-ways-to-support-family-or-friends-on-hospice-care
https://www.covenanthealth.com/homecare-hospice/care-for-a-hospice-patient