Hospice with mom: It's different each time. This is what happened.

Hospice Round #3: What's different this time?

Before we jump into this episode of Eldercare Success, I'd like to share that I've been going through a bit of a rough patch. For every faithful follower and listener to this show, I'd like to give you my sincere thanks. Just knowing you're out there listening, doing well—or trying to—gives me the strength to continue moving forward, too.

Just because someone is known as an "expert" caregiver and care advisor doesn't mean that every day is sunny for us. But, instinctively, I think you know that.

In any case, thank you for being at my side as a listener, subscriber, and someone who cares enough to share this show with others who need support in caring for their parents or a loved one.

Sometimes, we forget to say thank you, and I hope saying so to someone you know makes your day just a little better, as saying thank you to you here has made mine.

Now, let's get on with this next episode. Hospice round #3 - this time with mom, what was that like? Well, it was different. Listen in to learn more.

Episode Overview:

In this episode of the Eldercare Success podcast, Nancy May shares her personal journey with hospice care for her mother. Nancy offers a candid and emotional account of the challenges and comforts she experienced during this difficult time. Listeners will gain valuable insights into navigating the complexities of end-of-life care and the importance of cherishing every moment with loved ones.

Things Listeners Will Learn:

1. The Unique Experience of Hospice Care: Discover how every family’s hospice journey differs (and can be different even within the same family) and how to prepare for the unexpected.
2. Coping Mechanisms: Learn about the emotional support and coping strategies that can help during this challenging time.
3. The Importance of Cherishing Moments: Understand the significance of creating meaningful memories and sharing stories with loved ones in their final days.
4. Personal things you can do during these final days, and how what Nancy did helped her sister, her aides, and her own heart.

Why You Should Tune In:

This episode provides a blend of practical advice and emotional resonance, offering comfort and guidance to those facing similar situations. Whether you're a caregiver or someone who wants to be better prepared, this show will leave you feeling supported and informed.

What You Can Do Next:

If you found this episode helpful, please subscribe to the Eldercare Success podcast and share it with a friend who might be caring for a loved one. Your support can make a difference in someone else's journey. Thank you for listening, and remember to be well, stay well, and keep caring. 💖

🎧🎤Host: Nancy May has gone from the Boardroom to the Emergency Room to care for her aging parents and educate business owners, corporate employees, and leaders with more strength and confidence in doing well and doing good.  Not alone in this journey, Nancy saved her parents over $260,000/year and improved the quality and length of their lives together while unraveling a boatload of...

Episode Transcript

Nancy May, Eldercare Success: Hospice round three. (00:02):
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Or should I say two and a half?
I slept with mom.
Right to the very end.
What happened next?
This is Nancy May, and yes, hospiceis a difficult time for all of us.

(00:25):
And as I said earlier, I'd beenthrough this, well, at least
one and a half times before.
Mom was a little different than Dad,because we always talked, well, maybe
not always talked, But throughoutthe course of life, Mom did talk
about what her final wishes would be.
And those were If I get tobe a vegetable, shoot me.

(00:46):
Okay, at one point I did try and shoota pumpkin off a stump in the backfield
But I think that's a different story
In any case, those of you who havenot gone through hospice, please
understand that every experiencewith a parent or loved one will
be different, slightly or extreme.
mom's cases, was quitedifferent than dad's.

(01:09):
Mom had signs of dementia,
Moderate dementia, Iwould say, not severe.
She always knew who Iwas and always smiled.
And I could hear the smile in her voice.
every time I called.
Love you, Mom.
Love you, too.
Mwah, mwah, mwah, mwah.
We'd always say at the end of a call.
I had been down to Florida to visitthe week before for her birthday.

(01:32):
It was her 91st.
We all had a blast.
Mom, the aides, their families,babies, everybody was involved.
And, I have picturesto prove that as well.
my sister was going to come downthe week after, as it was her
birthday the day after Mom's.
And she wanted time with her family.
I can't blame her for that.

(01:52):
The following week was Thanksgiving.
Mom had been just a little bit moretired and listless than normal.
and Millie, my lead aide,kept me on top of everything
that was going on, as always.
The day before Thanksgiving, Mom seemedto be a little bit more out of it.
And she called the doctor.
The doctor said, Oh, I'msure she's just fine.

(02:12):
Just give her a shower and she'll perk up.
Well, that did not happen.
Thanksgiving day rolled alongand she was totally listless.
Limp, I'd almost say.
Millie called me and said, Inthe morning, I'd like to take
your mom to the emergency room.
Is that okay with you?
her daughter, nurse Sarah, had beenin that afternoon to check on mom and

(02:33):
said That was probably a good idea.
I always trusted Millie's judgmentimplicitly because she was
hands-on and I was 1200 miles away.
So, my response was, ofcourse, please take her in and
let me know what's going on.
She did.
Early the next morning, Millie called 911because Mom was not getting any better.
In fact, she was getting worse.

(02:54):
As she arrived at the hospital,they realized that something was
definitely off, although theycouldn't pinpoint what it was.
After a full exam and a CAT scan,they realized that mom had a
slow bleed going on in her brain.
Shortly thereafter, and thankfullywhile in the ER with Millie at her
side, and a nurse right there aswell, Mom had a full brain aneurysm.

(03:16):
By this point, Milliewas in total hysterics.
And the nurse said, you've gotto call her daughter immediately
and tell her what's going on.
the attachment that mom and dadand Millie had were pretty strong.
I'd say she's as close to familyas you can get without sharing DNA.
Using her phone, the nurse called meand explained exactly what was going

(03:37):
on and that they were planning tomedevac mom out for a brain surgery.
Absolutely not.
Not quite knowing what to do, other thanto say, I'll be down there immediately.
The nurse said, I don't thinkshe's going to make the hour.
Oof, what do you do?
well, I held my breath, closed my eyes,said a little prayer, and said, Mom,

(03:59):
hang on, I'll be there as soon as I can.
I kept in touch with Millie throughoutthat day to see what was going on.
Mom was hanging on And waitingfor us, I'm pretty sure.
Since it was too late to get tothe hospital, my sister and I
arrived first thing in the morning.
The ER doctor came into mom's roomgave us a consult of what was going on.

(04:21):
and then to my surprise, yelled atmy lead aid, Millie, and said, this
is what happens when you take yourpatients off blood pressure meds.
Without missing a beat, Millie explainedthat this was not the case, that her
doctor, her primary care doctor, whowas a colleague of this one who came
in to tell us what was happening,had taken her off those pills.

(04:42):
the look on his face was startlingand he immediately shut up.
At that point, my sisterand I entered her room.
My mom looked ashen.
Really, I mean, gray.
I have never been able todescribe it any other way.
and her face just seems kind of slumped.
Heartbroken, as you can imagine,but knowing where we were at this

(05:03):
point in time, I held her handand said, Hey Mom, it's Nance.
She opened her eyes, smiled,and closed them again.
Then my sister, tears in hereyes, barely able to get the words
out, said, Hey Mom, it's Cynd.
She opened her eyes,smiled, and closed them.

(05:25):
those were the last two timeswe saw her mom open her eyes.
Within minutes, we made the decisionto yes, accept hospice care.
And mom came home.
Home to her house, and her bed, and to us.
Not knowing how long thisprocess would take, but we
knew we were on our final days.
Mom lasted for ten excruciating days.

(05:48):
No water, no food, no noise, nothing.
She just lay there in bed.
but our two remaining aides,Millie and Iris, my sister and
I, Stayed vigil at her side.
We laughed, we cried, we sangsongs, We held each other's hands,
we held each other's hearts.
And yes, every single night, I slept nextto Mom, or one of us slept next to Mom.

(06:14):
And throughout the night, andwhen I was there, I'd hold her
hand and say, Hey Mom, it's Nance.
Surprisingly, I'd always getthis Gentle little squeeze.
I never wanted mom toknow that she was alone.
That gentle squeeze back and forth.
We always had that signal, even as kids.
throughout those ten days,Millie, Iris, my sister and I,

(06:37):
also took care of each other.
I prepared some of the best recipes thatmom ever had for me and for my sister.
Mom's special chicken.
Birthday chicken, I called it.
Millie shared her familyrecipes and so did Iris And my
sister had a few of her own.
And each evening wascomfort food, heart food.
I'd say maybe not in the medical termor the nutritional term, but with a

(07:00):
couple of glasses of wine as well.
We did well
the final night before mom passed,of course, we didn't really
know when that was gonna be.
The four of us were sittingon each side of mom's bed.
Laughing, talking, girl talk, youknow, revealing those secrets that
we don't want our parents to knowabout and sharing them with mom.
Stories that Millie went through, Iriswent through, the silly things that

(07:23):
we do as young children or as youngwomen in the course of our lives.
I shared things that happened to mewith mom and dad that my sister didn't
know about and she shared things withme, although I knew most of them.
I am the older sister after all.
At about midnight, as we were sort ofwinding down on our stories and getting
a little sleepy and tired, a cold breezecame through the room between Millie and

(07:47):
Iris and my sister and I and over Mom.
it felt like ice had just come by.
Iris, superstitious as she alwayswas, said, did you feel that?
Matter of fact, we did.
We thought, hmm, that's strange.
Millie said, that's dad.
He's the one who's come to tellher it's time to come home.

(08:07):
Throughout those 10 days, we dideverything to share with Mom.
Our love for her, our stories for her,songs of her dear brother Ken, who sang
throughout Europe in opera, and evenwon the Arthur Godfrey Talent Contest.
I found that recording too.
We shared that with her.
songs that we sang together, songsthat we remember as kids, and songs

(08:28):
that I found out were her favorite.
One, which is my favorite too, wasWillie Nelson's Don't Fence Me In.
Millie shared with me that night.
You know, your mom saysthat's her favorite song.
Really?
That's mine.
That and Beer For My Horsesand Whiskey For My Men.

(08:48):
I think mom would like that one too.
That night, I slept next to Mom, Dad's bedright up against the side, my hand holding
hers and just keeping an eye on her.
Waking up at about 5 o'clock, I sawthat her breathing was slow and labored.
I said, Mom, I'm here.
She squeezed my hand, just ever so gently.

(09:09):
It was time for me to get her meds,although I was not the best at doing that.
So I got up, went down the hall,tried to wake up my sister.
Who was incredibly difficult to wake.
My sister Cindy, she can sleepwalk withher eyes open and swear that she's awake.
and then tell you lateron, why didn't you wake me?
Okay, well I wasn't goingto get very far with that.

(09:32):
Millie heard me up and she ran bolting.
to make sure that she was okay,to give her her meds and anything
else that needed to be done.
She came out sobbing.
And she said, Nance, she's gone.
Not quite knowing what to doother than to wake Cindy and
let her know what had happened.
I realized that night, that yes, that coldbreeze was Dad that came by to hold her

(09:54):
hand, and, well, in a metaphorical kindof way, and bring her back to his side.
Mom's face looked ashen and gray, andher nose sort of slumped to the side.
Millie and Iris, as theyhad done with Dad, said,
Please.
Give us the privilege to make sure thatAudrey is wrapped in her favorite robe,

(10:16):
with the right pictures in her pocket.
Myself, my sister, and my othersister, Tracy, who was waiting
for her on the other side.
They did that.
and as the funeral home was called,to take Mom away, they bundled her
up, put her on the gurney, and said,please take your time with your mom.
We can see by the photos all aroundthe house how much she's loved

(10:37):
and how much she loves you too.
We've never quite seenphotos like this in a family.
I have to tell you, we had postersthat were three feet by five feet
and all over the place from dad'scelebration of life on through.
And I think we had more family pictureson our walls than wallpaper probably.
But they were the story of their lives,mom and dad's life, and ours too.

(11:00):
Not just my sister and myself, but everysingle one that helped them and was
there with them right to the very end.
We did.
As we went into the room withmom and saw her tucked in, Just
like a little doll on the gurney.
I looked at her and said,Millie, Cindy, Iris, look.
And they looked at her andI said, she's beautiful.

(11:22):
I had never seen such an amazingtransformation of anybody alive.
And I haven't seen too many who'vebeen gone and passed either.
But this one was amazing.
Mom looked peaceful and serene.
there was color in her cheeks,like she was wearing makeup,
and her lips were rosy red.
Even, I would say, a gentle smile.

(11:45):
I have a funny feeling that shewas seeing Dad And letting us
know that everything would be okay.
Unlike Dad, we did not celebratewith a scotch, but we did
celebrate a different way.
It was noon by the time she was goneand I told my sister, you know what?
Mom would want us to go dosomething special in her memory.
Let's go have lunch.

(12:06):
So we did.
We celebrated, we had lunch, welaughed, we went to a winery.
We drove all around the county and moreand back and came back home probably
around six or seven o'clock at night.
exhausted, each of us sat on momand dad's lifty chairs, I call
them, wanting to see a movie thatjust kind of reminded us of them.

(12:26):
And we did.
Although, my sister got up andwent to bed and she said, I grabbed
your foot, I shook your toe, I evenpinched you and you didn't move.
I woke up the next morning in thatsame place, in that chair, feeling
a little relieved and well rested.
Hospice is different forevery single one of us.
My friend Gurney, who shared hisstories of what his wife looked like

(12:50):
during this time, Was very differentthan what we saw with Dad and with Mom.
I have a funny feeling that bothof them are watching down on me
and my sister, And all are aides.
The good ones.
Well, they were allpretty good in general.
The rest that weren't, we got rid of fast.
Stories of mom and dad and theircare continue as they do here in

(13:10):
this Eldercare Success podcast.
I hope that this has been of help to you.
please understand that hospiceis something you do not have
to choose to go through.
Sometimes we don't have that choice and apassing of somebody happens suddenly where
we don't have the luxury of doing so.
Besides what I said two episodesago, hospice really is a good
organization and they have great people.

(13:33):
Understand that you have the right tochoose your team if the ones that are
working with you are not the ones thatmake you feel comfortable and help you
with the decisions that you need tomake throughout this time and process.
Some people take longer than others,But understand that hospice is here
to make sure that their final dayshere with you and as who they are,

(13:53):
are intended to make their finaldays as comfortable as possible.
Losing a loved one is never easy.
And I have to say, every pieceof paper that I've touched for
probably the last two to three yearsafterwards, I still think of Mom and
wonder, Geez, I just feel like I'vegot one more paper cut sometimes.
And, can she hear me?

(14:15):
I hope so.
On that note, I hope that your experiencewith hospice and taking care of a
loved one right to those final daysare as easy as they possibly can be.
Well, maybe easy is not the right word,but probably the best term is to say
as gentle as they possibly can be.
This is Nancy May from Eldercare Success.

(14:37):
As I always like to say at the end ofevery episode, if you like this show, and
maybe that's not the right term for thisparticular episode or the last two, but
If you see somebody who's distressed oranxious, please ask them if they're okay.
They may be a caregiver, too.
You can share this link, EldercareSuccess.
live, with them.

(14:58):
Because it's my gift to you,and it can be your gift to them.
Take care, be well, and keep caring.
Bye bye.