When Susan Elliott’s mother was at home on hospice, she was cared for by her husband and adult children. These primary caregivers received a great deal of support from hospice, and yet – as Susan says, “There were gaps.” Susan’s experience is not unique. In fact, many of us will find ourselves in this exact situation one day. How can we learn more now, in order to set ourselves up for when it happens? What are the gaps, and how might they be filled?

Transcript:

Diane Hullet: Hi, I’m Diane Hullet and you’re listening to the Best Life Best Death podcast. And today I’ve got a really fun guest, my friend Susan Elliott. Hi Susan. 

Susan Elliott: Hi. Hi Diane. 

Diane Hullet: Susan and I met through the Conscious Dying Institute and Susan is a doula and an educator and has just an enormous amount of personal experience with hospice, and I wanted her to share with us an article that she wrote that I think really encapsulates some of what she and I are kind of calling the gaps, you know, so, Yeah.

So welcome Susan, and tell us a little about, you know, how did your family get involved with hospice, and what’s your experience been? 

Susan Elliott: Yeah, sure. Well, I. Was in the business of long-term care. I worked as a vice president of health services for a continuing care retirement community that had large large campuses.

And we had a full continuum of care services on the campus and those included hospice. And this article that I wrote is about my very first experience with hospice, which was with my mother in 2007, and. That was the time where she wanted to die at home and we took care of her there. And it was my very first dying person that was at home.

And it was my very first hospice experience from a user perspective. And since then I’ve used hosp. I’ve. I’ve had multiple family members who, and have used hospice in multiple scenarios, whether in a facility or, or at home. So but this first experience really stayed with me and I learned a lot from it.

So I have this article that I can share if you’d like. 

Diane Hullet: Yeah, I think it’d be great. And I think one of the reasons you and I kind of connected on this is we’ve both known several people who’ve died at home with hospice or in hospital with hospice and, and I thought that was just sort of what everybody did.

And it was sort of fascinating to me to realize, no, that’s not always how it happens. And that I think was part of my path on this becoming an end of life educator was like, oh, I’ve witnessed these quieter. More peaceful, pretty supported deaths. So yeah, why don’t you just, why don’t you read and then we’ll riff some more after you read.

Susan Elliott: Sounds good. So, I titled this As good as Hospice can be, there are gaps. In February, 2007 at the young old age of 70, my mom was diagnosed with leukemia and given one year to live. Within a span of two months, she consulted with a specialist in Tampa. She left her home in Florida and was admitted to a HEPA filter unit at Johns Hopkins where she would spend four weeks receiving chemotherapy because chemotherapy for leukemia attacks the immune system.

The white blood cell counts of people having chemotherapy usually drop. Making them vulnerable to infection. The chemotherapy was harsh, painful, and relentless. The isolation, even more so locked away in a room where she couldn’t see the family. She loved at a time when she needed them most. That one month of hospital stay.

Bought her about five months of remission. Time enough to travel back to her home in Florida to say goodbye to her friends. And moved to Baltimore for good. And so in September of 2007, Amir, six months after her initial diagnosis in February, mom’s doctor told her that things had changed. She was out of remission.

What did she want to do? There’s a clinical trial, there’s more chemo. My mom knew she didn’t want that. She said, no, no more. I’ll never forget that moment. Her doctor at Hopkins was close in age to my mother, nearing retirement. The doctor paused, she took a deep breath. She leaned in and she took my mother’s face and both of her hands, and she looked directly into her eyes seeing her.

Taking in the magnitude of her decision and with tears welling in her own eyes. That doctor who was the same age as my mother said, you brave girl. That was it. She was done. That was the end of the 2007 Hopkins medical tour for Claire Moss Miller. She wouldn’t see her doctor again. And so we took our brave girl home and she signed up for hospice.

That’s what the dying do, right? Sign up for hospice. She wanted to die at home surrounded by her family. So we all set into motion the process of helping her do just that. My father and his four adult children all helped in that effort. It was my first personal experience with hospice, even though I worked with hospice all the time as an administrator of a healthcare system for the oldest old all at once.

The systems of care that I had studied, tended and created were needed here in my own home for one of the people I loved most deeply on the earth. In the beginning, we were assisting her to tend to herself, but as she became bed-bound and less able, the work of washing and tending her physical body fell to us.

My mother was quite beautiful and always well put together. She had a face care regimen, an oral care regimen, and she got her hair done once a week because she’d never mastered the art of the blow dry. Dirty hair, a dirty face, not being able to wash herself properly. Well, that would be highly out of character for my mom.

How do you wash someone’s hair that’s bed bound? Where does one go to learn how to wash the private parts of their mother? Who knew there was so much muck and debris that builds up in a mouth when someone stops eating and drinking? Who knows that you may need a pillow under each elbow, each heel, and the hip, to reduce the pressure of the mattress.

That her bed would be a torture device, that you must reposition her to prevent bed sores, that it hurts her when you do so, and still the skin breakdown comes. The body is dying. It knows what to do. But I didn’t. So determined to figure it out mean where there’s a will, there’s a way and all that. I dove in.

I made mistakes. So many mistakes. Of course I did. I’d never tended someone who was dying. I experienced the most intimate moments with my mother in my life, and it was one of the most heart wrenchingly, beautiful, most difficult things I’ve ever done. It was love on steroids. My mother’s death and how she chose to approach death taught me a great deal about the power of that love, the power of presence, and the power of a conscious death.

How she trusted that we would know what to do, I have no idea. She just knew that she didn’t want it to be anyone else. No strangers, no aids, just her husband and her children. Hospice was there, was caring, kind, and supportive. In fact, hospice nurses are some of the most beautiful humans on earth, but they are human and they are overwhelmed with charting and regulations.

With new admissions, they often don’t have enough time, and they admit that. So yeah, it could have been better. And here’s what I mean. Here’s what I actually got in support from my mom from a local midsize. Baltimore Hospice, a nurse who visited and checked her vitals each week. She was friendly and kind, but didn’t engage in any deep discussions.

Once she heard that we were all fine, a nurse who offered a visit from a chaplain and when mom declined, never asked any further about any spiritual needs. A nurse who helped us acquire oxygen and instructed us on how and when to use it. A nurse who struggled to find a massage therapy resource to ease mom’s pain of being in bed in the same position, hour after hour, day after day.

A nurse who provided us with mouth swabs to use as needed. A nurse who applied patches for skin breakdown, who told us how to keep turning her, but didn’t show us the tricks for how to do that or how to handle her pain. When we did

an on-call nurse whose focus the night mom died, was on removing all of the controlled substances asking me for coffee grinds in which to dispose of them. And when I reached to wipe up the spill on the counter, Told me to step back. Only she could do that. I don’t know what she thought I would do, lick it off the counter.

After all, I’d been managing those medications for months. Here’s what I think an end of life doula might have provided and might have augmented, I think what was already provided. Someone who acknowledged the deep, deep pain and visceral sadness. My mother felt at being too young to die. The first of her friends, the first one to leave her vital, energetic, beautiful family, a husband, four children and 10 grandchildren under the age of 12.

It was so hard for her to leave all that life. Someone who focused less on the physical report of Mom’s vital statistics every week, and instead provided education and reassuring support to us, the primary caregivers who were taking care of their very first dying person, and it was their wife and mother, someone who helped me know how to wash her hair in bed, how mucky her mouth would get if I didn’t swab it frequently.

How uncomfortable it was for her when she was no longer drinking and how devastating for her when she missed making it to the toilet. Someone who told me about the power and importance of healing Touch, who gave me some pointers on various healing touch techniques, which would have helped relieve mom’s pain and suffering from being bedbound.

I did my best, but I now know there was so much more. Someone who encouraged us to talk more, to sing to her, to read to her. I read to her myself that most of us didn’t know what to do. Giving permission, setting an example, explaining how mom can still hear us, how much comfort it was likely to give her all would’ve helped us channel our grief into doing.

Someone who could have borne witness to our loving care to tell us we were doing a good job, that we were easing her suffering, not causing more of it. Someone that told me that death was not a physical event, but healing one, and that the most important tool I would need was my own conscious, loving, open heart.

That caring is a heart event, and I already had. What I needed, someone who let us know that we were in the very final hours of life, so we could have called in the whole family to be with her at her passing. Someone who would’ve educated us about rigor mortis and how to prevent the mouth from being open.

It would’ve made a more beautiful body for my siblings to see when they came rushing from their homes to be with my mom as soon as they could after she died. Someone who would’ve held us in that sacred liminal space in the early morning when mom died, who would’ve encouraged us to not rush to call the funeral home to share that it was a special grace filled space and that we should allow ourselves to swim in it.

Someone who would’ve spoken to me ahead of time of how I might want to prepare for the washing and honoring of her body once she had died. Who that morning of her death would’ve encouraged me to wash and prepare her body and born witness to the deep love I had for her. I had spent months caring for that body that I love, so I would have wanted someone to tell me it was okay to continue to do so.

Once she had died. Someone who told me that I could have stayed with the body even though she was going to the funeral home, I could have escorted her there. Laid out flower pets on the walk. As she left the house, lit candles increased The beauty of her leaving, I wish I had known that was possible.

Lastly, I wish someone had been a caring, healing presence, not just a tired nurse who was on call in the middle of the night and whose main focus was on her task of removing morphine. Someone who helped my father know that he had cared and loved her well in her dying as he had in her life, who hugged us, held space for us, who helped the anguish of my sister and other brother who were not there for her actual death and wanted to be someone who could have just been in it with us, who could have been present to our love, joy, fear, sadness, and pain.

That’s all. It would’ve been more than enough. But I suppose the lack of these things at my mother’s death taught me the importance of them, the importance of presence, the gift of time, the details matter a lot. The should all have access to beauty, the contentment and pleasure at the end of life, that just being willing to go on the journey with someone.

Knowing it will be difficult eases the suffering of the sufferer. But those death journey companions, those caregivers need more education and emotional support. And so I sought out expertise in death and dying. I dedicated myself to finding more ways to ease suffering and enhanced beauty. At the end of life, I became a conscious death educator, healer and doula.

And now I know. I know that the power of caring and healing presence is everything. It’s life.

Diane Hullet: Thank you so much, Susan. 

Susan Elliott: Thank you Diane, and thank you Claire. 

Diane Hullet: Thank you, Claire, for that incredible experience. The way you described that. You know, you did your best and you know, it wasn’t quite good enough, but it was good enough and she knew it was you. You know, that was a big piece of that. Yeah. I was really struck too by when you said that what you really wanted, like what really would’ve felt good at that time, even with all the experience you had working with the oldest of the old, as you said, was reassuring support for the caregiver.

Like that’s what was needed as much as anything else. Say more about that in your experience. 

Susan Elliott: You know, when you said that, it reminded me of the support we get after we have a baby, right? The hardest time I had going home from the hospital with my new baby was the middle of the night. It’s always those off hours, you know, people don’t die conveniently nine to five when the hospice, you know, hotline is on.

So you get an answering service if it’s in the middle of the night and you get somebody on call. And so those times are hard and. And mom wasn’t struggling on a schedule. So in the light of day when the hospice nurse visited, you know, she might, and she would be on her best behavior and, you know, sit up in bed.

So when she was there, but those were not the hardest times. So I found, yeah, I could have used I, I, I actually remember Mo mom had a nurse friend. And mom wanted a lot of privacy. She just really wanted her family. And of course our family was big enough, but she had a nurse friend who dropped off some soup one day, and my father had run an err.

And so it was just me and mom and I asked her to come in and she said, oh, I kn I know your mom wants her privacy. I said, no, but everything’s under control. She’s sleeping. Would you please come in? I just want you to look at her and make sure I’m doing everything. Okay. And that visit was really, really important to me.

And it came from a family friend who happened to be a nurse. But I’m not a nurse and I was doing all these, what I considered to be nursing tasks. Yeah, so it was hard. 

Diane Hullet: Yeah. And that, that one visit was reassuring. I, I think, you know, this is, it’s partly what I think doulas have come into our society, death, doulas to be doing at this time.

And then I also, I’m always struck by, it feels like, like the lost art of caregiving or the lost art of dying. Like we did use to do this in our homes, but it all kind of got outsourced and it all kind of got medicalized. And so here we are in this day and age, not quite knowing what to do. And yet the majority of the caregiving does fall to family members for the most part.

You, you also mentioned that your dad worked with hospice, but in a different 

Susan Elliott: way. Yeah. My father was, so seven years after my mom died, he, he had seven years and then he was diagnosed with Alzheimer’s and dementia. And so he too we went to bring him home from Florida and he moved back to Baltimore and so he went.

He, his progression, as you know, gets steadily worse. And so he ended up being inside of a nursing home during Covid. And I knew by then I was kind of an old pro at hospice. I had also had hospice for my mother-in-law. She had fallen and she had hospice in, in the hospital. And I was just kind of shocked with that experience because they signed quick to sign her up.

And again, her labor was in the middle of the night because dying is a lot like labor. It’s a labor. And so she was laboring in the middle of the night, and even with the nurses on the hall and the hospice, again, only could get a call service. There’s nobody available in the middle of the night to support the family.

And for my brothers-in-law, the three of them that were there, they were really worried and upset that she was struggling. So, and now the, and now I know fast forward, I know that that’s all part of the dying process cuz I’ve sought out that information. But that’s, at the time I did not so fast forward to my dad.

He ended up in the nursing home during c. And I had gotten him on hospice. You know, there’s certain qualifications in order for someone to be on hospice, and I think most people on that have Alzheimer’s should be on hospice. I think they are slowly dying and so, but the regulations don’t allow them to go on hospice.

And so it’s not always easy. So, Anyway, I had been trying the minute he got sick with something and lost 10 pounds, that was a qualifying event, and I got him on hospice and then I, I made sure he could get recertified because I knew it was an extra pair of eyes on the prize, if you will. You know, the more hands, the better.

The more care, the better, the more love. The better. And hospice nurses are just better at that, those things. And the charting in the amount of regs in a nursing home are terrible. I mean, one fall in a day can divert all the resources there. So having a hospice nurse available was great, but she ended up being my surrogate during C O V I D.

And I, we are. Friends to this day she is talking about becoming a doula because she was able to see my dad when I wasn’t, and FaceTimed and she would cheat the system. At the time they were only allowing hospice nurses in facilities once a week. And so she would go on a Monday and then go again on a Friday when she was seeing someone else.

So I have great respect for that. But yeah, she got burned out in that whole process and left for a while and is now back in hospice. But she now is exploring, becoming a death doula because she understands that there’s more, she needs more freedom to emotionally support and kind of create that container in sacred space.

I hear that a lot. I hear a lot of hospice nurses becoming doulas, and I just met with two of our graduates about a month ago in Annapolis. Well, Annapolis near where I live, and they are talking about how the hospice is there. Many of their clients are in hospice, so there does seem to be this you know What’s the word?

Symbiosis, like a way for them. Either hospice needs to become more like a doula or doulas need to, you know, work under hospice. But my system mentality begins to think how to pay for this. Right? Because I used to work for A system of care and we created a demonstration project an H M O. For the oldest old, you’d think it would lose money, but it doesn’t.

Because you keep old people out of the hospital, which is the most expensive. And I kind of feel this way. I believe there’s a way to pay for. This, I just have to work at it. 

Diane Hullet: Yeah, I love that. I love that. Figuring out how to pay for the care that families really could use and, and that the dying deserve and that families need.

There was this wonderful way you said in the article too, you said, You needed someone to help you find ways to channel your grief into doing. And I think that was so beautiful. You talked about like needing the permission to read or sing or be with her more, because I think so many people do get kind of at a loss like, well, I’m with this person and they’re, they’re kind of sleeping a lot and it’s kind of uncomfortable and I don’t really know what to do in their presence, but.

Somebody who could help you channel that grief and that time into some activities you could do in that simple space with your mom at the time. Someone to be present to our love, joy, fear, sadness, and pain. You know, I think this is where we’ve, we’ve our kind of very siloed isolated society doesn’t necessarily offer that in times of grief.

Susan Elliott: No. And I. The other thing is giving permission to climb into bed, to hug and to yeah. So I can’t tell you how many people I work with now you know, talk about, I wish I had climbed into bed with mom or, or so yes, yes. I don’t think it’s. I don’t think it’s, it’s also a matter of training. Like, I don’t know enough about hospice nurses to know h what their training is prior to come to hospice.

I know they all come from different different places in different ways. But I know my niece just graduated from nursing school and in nursing school she had one. One hour session with a hospice nurse and basically that hospice nurse talked about what hospice was. But nowhere did they learn about dying as a nurse.

So she would be on duty. She’s a night nurse. She was doing night nurse while she was getting her degree. She’s since graduated, and she would text me in the middle of the night and say, I need to know a lot more about dying. We need to talk. And so we have but yeah, this, this lack of experience even in nursing with dying.

Which is pretty 

Diane Hullet: incredible, right? So we turn to the experts hoping the nurses can support us, but not necessarily. I, I would love it if we all became more experts in dying, right? So that we didn’t have the experience of your brother-in-laws who were so agitated. I think we get so upset about that labor of the dying person because we don’t know.

What it looks like. I mean, I, I love, I’m a fan of hospice nurse Julie, because I think, you know, she just has taken this to TikTok and Instagram and all these kind of platforms where I almost think the younger generation is gonna have more information because of people like that. And they’re kind of seeking it out in a way.

But how do we support, you know, people in their seventies, eighties, nineties, and how do we support people in their forties, fifties, sixties, with getting a little. You know, their hands a little dirty, so to speak, in the garden of this experience called death. 

Susan Elliott: Yeah. In talking about young versus older, you know, the, the, the, one of the issues I think is that we’re all gonna be on the front lines because there aren’t enough care givers.

You know, there aren’t enough aids even for. People that can afford it let alone people that can’t. And so there’s, we’re all gonna die, so we’re all gonna need caregivers. And so there’s gonna be more of us on the front lines at the bedside for death, which I think is a wonderful, beautiful thing, right?

Because it’s such a. If you can take the fear away because you can say, yes, this is what dying is like. Yes, this is predictable. Yes, no, you’re doing all the right things. Yes, you are everything you need to be. Then all of a sudden you’re free to just love and be present and not worry that you did something wrong.

So 

Diane Hullet: beautifully put, so well said. I think when there’s space to understand what’s happening and there’s knowledge shared and information, then some of the agitation and distress can settle down and the love can flow. Yeah. So. Well, thank you so much, Susan. I’m so delighted that you wrote this piece, and I’m so delighted that months and months ago I said, oh, Susan, you’ve gotta read that on the podcast.

So we did it. 

Susan Elliott: And thank you Diane for ha hosting a great podcast and getting much more education out there about Best life and best death. Ah, 

Diane Hullet: thank you. Susan, do you wanna say a website or anything? Or do you, Baltimore?

Susan Elliott: Oh, that’s something I need work on. Right, Diane? Oh, you wanna find 

Diane Hullet: Susan, reach out to me and I’ll connect you with Susan. How’s that? That sounds great. Thanks for being a guest. You can find out more about the work I do at Best Life. Best death.com. Thanks so much for listening today. Thanks for being a guest.

Thanks for being listeners. I love hosting these conversations. 

Susan Elliott: Take care.