Elizabeth Edwards (3): Dying at home

Elizabeth Edwards was sent home to die, and I felt pins of jealousy pricking into me. My husband died of cancer after two years of fight: you might expect I'd hear echoes of the last days and of the loss. But no. The hurts were petty, many, and sharp.

Because Gavin couldn't die at home, the way he would have wanted. And it was because of me.

And because of those nurses in the ICU, loving and kind to me and my little girl, who wasn't supposed to be allowed in, but they saw how his numbers jumped when she entered his windowed area of the ward. How his face would light up, so it was worth breaking any rule, despite the risks to her and him and me. After all, it was a temporary transgression: no one stays in that ward long.

Adela, my favorite, the head nurse ("Adele" had been in the top 10 names for our daughter), was the one to really work on me. "You say he doesn't want to die in a hospital. You need to work on getting his discharge as soon as you can." (Discharge was tricky because our oncologist didn't have privileges there; she couldn't reach anyone she knew, because it was a holiday weekend: Memorial day.)

I'd always heard that inpatient hospice was hard to get into. "We'd really prefer to take him home for these last few months," I said hopefully, not knowing they were thinking weeks (it turned out to be just days). Adela danced delicately around it, but within hours another staffer was more direct: "You can't handle having him at home."

But I'll have help. We have wonderful friends. 
Won't hospice offer volunteers? 
Look what we've been through already. 
I can do what's needed. I can do what's right.

He died 4 and a half years ago and now I accept what they were saying: I couldn't have handled it. With a small child, his senile mother, and insurance paying for nearly nothing… the brutal truth was I could not have changed his diapers in addition to my toddler's. It stung to hear it then, and still to say it, but: I hated being a caregiver, even to someone I loved who I desperately wanted to live. And it would have been more dangerous.

But deadliest of all was to stay in the ICU. They really wanted us out of there. And he knew they were treating him differently, that they'd given up. Instead of being the most-well person there, I think my husband picked up on the fact that he was starting to fit in. "The ICU is not a place for extended dramatic intervention. People just don't last here. It's for emergencies. When there's nothing more to do… well, it's not a good place to spend your last hours."

I just thought maybe they could make an exception and allow more visiting hours. It wasn't a bad place… look how attentive they were to me. What came across as care for me was really their strong desire to persuade me to save what was left of my self and family by getting him into hospice.

To Gavin, the ICU was a neglectful lonely place. His veil was starting to lift: he saw what was really happening. I am sure he was willing to go to hospice before I was willing to sign the papers. I said it was just so he could recover some strength, and I could have some respite, and then we'd bring him home. The timeline was rather Hallmark: months of adjustment, designed by my mind for my own emotional convenience.

None of us had any control over the timing, of course, not even Adela. All the staff, the hospice experts, everyone was off by weeks. He died four days after transfer. He'd been fighting that hard all along and he took the rest he was offered.

I was a zombie with a job: I told visitors to "please tell him that you'll take good care of me and Short Stack and Frances, and that it's okay to leave if he needs to." I was choking, and I was also saying, "it's good for him to hear that, you know, just in case."

My chief regret, my advocacy, is that we didn't start hospice sooner. We could have recognized that this disease in this man at this time was just too powerful. I know that living with denial is actually a good idea when you're faced with a terminal illness, but regrets have nagged me all this time. I like to blame Gavin and the endless positive fight at all costs, but a lot of the resistance must have been coming from me. I pulled over on the parkway to cry in angry helplessness on the way over to that appointment. In the end, I signed the papers out of sheer duty.

I was frustrated that everyone thought — knew — I couldn't have handled him at home. Finally, now, I accept that they were right. I give myself permission — that old me, the one who hadn't seen anyone die — to be an imperfect caregiver. I know my family is better off because Adela got through to me.

I was envious that Elizabeth Edwards had the chance to go home to be with family when my husband didn't.

But death laughs at all our petty jealousy: before I had the chance to write a blog post (never mind three!) she was gone. A woman who'd advocated for hospice didn't get much time to enjoy her loved ones outside the hospital. Her courage, her honesty, earned even her just the barest bit of peace.

We all deserve more than that moment.


Anonymous said...

Scott died of a sudden, single event heart attack. The paramedics said he was gone before they got there, so hospice was never a consideration for him. But, it was for my mother, who had stomach/liver cancer. My Dad brought her home when her doctor advised us that the cancer was already stage 4. This occurred in 1990. She had surgey to remove two thirds of her stomach, but since the cancer had spread to her liver, they recommended that she get her affairs in order, and live out her days as best she could. She recovered from the surgery and had a few good months with few symptoms. On the day before Thanksgiving, she obstructed. I called the ambulance that took her to the hospital. I'm sketchy here as to the timeline, but the decision to involve hospice was made before Christmas. Mom had never asked her doctor nor any of us about her prognosis, and we didn't feel the need to tell her. We took alot of flack for that, but she didn't have any affairs to get in order. She had a family that loved her and didn't want her remaining time to be overshadowed with the definate knowledge that she was staring down the barrel of death. She came back from the hospital, we all knew that we couldn't care for her alone, and we got Hospice involved. One of the first things that hospice told us was they were going to be very open with my Mom with the fact that she was terminal. THAT WAS HARD TO HEAR. It was easy to brush her destiny under the rug, and I guess my feeling was that if I didn't talk about it, it wasn't real. With the help of hospice and some private duty help, we were able to keep Mom at home to die in her own bed. Funny, I've often thought that if she had remained in the hospital, maybe more could have been done for her.

annie said...

Home hospice is not for everyone and there are places where services like that just don't exist for anyone but the financially well off.

And most people are not capable of taking care of someone so gravely ill. You were not an anomaly.

Control, over the way we live or die, is largely an illusion. We have choice - if we are lucky - but mostly we must deal with circumstances as they are.

You did the best you could after what was a long, hard journey. And what you learned during and after, you try to share with others, which is more (much more) than most of us do.

I understand that events like Edwards death stirs up the past. But she was a privileged and wealthy woman, her circumstances don't compare. Fame (or perhaps infamy) and money can appear to afford better endings, but who really knows what was going on in that house? It could be your husband's death was far more peaceful than hers - given the dynamics.

I've read much of what you've written about your caretaking days and Gavin's final days, and for what it's worth - you did good, imo.

Brenda said...

This just kills me to say it rings true. Had we given in to our doctors at LGH telling us there was nothing left to be done, and us not believing it. We needed to HEAR IT from our oncologist at Hopkins. We needed to be in the comfort and knowledge of Hopkins. We finally got that wish just about 3 days prior to his death. When the night before they told us it was definitely time for Hospice, and the next day he was home. Kevin had first thought he wanted to be at home, in my parents home where we had to move. I had to say no. I couldn't care for him the way he needed at home. I didn't want my parents home to be marred with his dying there. It wasn't fair to them. We wanted to be at a Hospice where he could see the shore, but there were none. That night I stayed at Hopkins-I normally didn't-and I told him to go, and he did the next morning. I wish he could have been somewhere other than a hospital.

Supa Dupa Fresh said...

Anonymous (Lynn, right?) - I'm sorry that you have continuing doubts, too. I hope you get relief from those with time.

Annie, thank you. I guess I didn't make it clear that even with her "opportunity" to die at home, she barely made it, and I find that pretty ironic and sad and futile too. I do think I did as well as I could have, and I'm coming to BELIEVE it in my heart, too. Someday I may even be GRATEFUL he didn't die at home. It's still going to be a trigger for a while longer I guess...

Brenda, wow wow wow. Thanks for sharing those hard decisions and days. You're right, home is not right for everyone.

HUGS and thanks to all of you for reading and commenting...

HalfKing said...

The passing of Elizabeth Edwards struck a chord with me too, was just about to comment on it myself. How nice it would have been for all of us to have avoided the loss of our loved ones all together, or else had the circumstances where we could be more at peace with how/where they "had" to be for their last days. Ugh.

Anonymous said...

Yeah, it's me again. I think it's just my nature to second guess things, or even third guess things. She was in pain so the hospice attendants administered Roxinal? drops to keep her comfortable. When they first arrived, her wanted to be awake as much as possible. But, the pain began to become to great and she would ask for the drops knowing that each hour she slept was one less hour she could spend with her family. The Hospice nurse explained the differences in her breathing to prepare me for her nearing death. What I wasn't prepared for was the ritual (for lack of a better word) that occurred immediately after her death. My parents lived in a one bedroom condo. I never gave my mind permission to think about the "mechanics" that would need to take place to remove her from the condo. I was allowed to stay with my Mom for as long as I wanted. My father left most all of the decisions to me to make. I was asked if there was a particular outfit I would like her to wear. I didn't know I would have to choose something. I went to her closet and chose the dress she wore to the last party she attended. It was silver accented with sequins. The Hospice ladies took care of washing her face, combing her hair, and dressing her so the last time I saw her, she was dressed for her jouney. The cleaned up al remnents of her illness. That afternoon, my father wanted me to remove all of my mother's things from the closet and dresser. I will NEVER forgive him for that. My Mom's best friend stayed with me, and we did it together. We managed to get a laugh out of one of those fox wraps women wore back in the 40's. She had one where the mouth would be grabbing the tail of the animal until it was large enough to go around her shoulders. In the garbage that went.

Like John Edwards, my Dad was cheating on my mother as she laid in their marital bed dying. I never forgave him for that, either. I learned to live with it.

Supa Dupa Fresh said...

Susie, we have that chance now, and I'm grateful that you're part of that for me. HUGS to you and little monkey.

Supa Dupa Fresh said...

Lynn, wow, that is a lot of forgiveness.

Also, I WISH you'd saved that fox wrap. I LOVE my collection of fur scraps, as un-PC as it is.

No regrets, right? Except for the regrets...

LOVE to you. I am so happy she went out in a ballgown. LOVELY.

Stella said...

"My chief regret, my advocacy, is that we didn't start hospice sooner."

I worked for 6 years as a hospice nurse, and that is often our biggest regret too, that our patients weren't on hospice sooner. But we never faulted the family. It was usually the physician who was unwilling or unable to tell the family that it was time.

The physician should not say, "We have done all that we can," but rather, "This is what we need to do now." But they generally won't do it.

It is a hard decision, but I believe you made the right one. Not just about choosing hospice, but choosing inpatient. You gave Gavin a wonderful final gift.


Anonymous said...

...and I'm jealous that I never got to say goodbye.
My husband died suddenly, sitting in the passenger seat next to his workmate who died shortly thereafter.
It will always haunt me that he was so badly hurt that I never saw him for that final goodbye.
Regrets - yeah, I've got a few.
But I know I am also lucky that I remember him as a strong, vibrant, loving, healthy, fit, handsome, brilliant man. I never had to sit an helplessly watch him slipping away.
The Hell of widowhood has many rooms.

Sandy said...

WOW..I am so sorry that you had those kind of regrets. I guess in that sense I was very lucky. TJ was diagnosed 3/13/09 and given a less than 5% chance of living a year. He died 10/25/09. While he was determined to be one of the 5 in 100 that survive we were also very practical and began preparing ourselves for the worst. We had talks that we came to call "The Good, The Bad and The Ugly". These talks covered the entire 16 years of our relationship through tears and anger. We cried about things that we remembered that made us happy and we cussed each other about things that pissed us off. By doing this we left no stone of our relationship unturned...confessions were made, apologies were made and accepted and of course there were lots of thank yous and I loved you deeply for that. TJ did not want to do this at first but I asked him to do it for me and he agreed and sometimes got a little too far into the ugly stuff (men!). We looked through pictures of our life together and had some good old fashioned belly laughs too and laughed even harder at the fact that we were laughing while he was dieing. We even discussed exactly what I was to do after he was gone and he gave me his opinion on who I should and should not date. I think back on these talks over the last 7 months of his life and I am so grateful for them and they bring me lots of comfort when things get tough.

We had watched his Mom die in an inpatient hospice one month before him and he asked me to not put him in a hospice and keep him at home so that is what I did. His family tried and tried to convince me that it was too much for me to handle but I refused to go against his wishes. While keeping him at home was the hardest thing I have ever done in my life I am glad I was able to give him that. He died at home, in our bed, with me by his side...exactly the way he wanted.

Anonymous said...

Just lost my husband on Dec 1. We received his diagnosis on Oct 15. It went way too fast and we were all so shocked. I have a 9 year old and am trying to figure out where we go from here. Just calling to inactivate his cell phone crushed me. I was glad that in the short time we were able to celebrate our birthdays together albeit at the hospital and that in the end I was able to bring him home to pass peacefully with me by his side which was his final wish that I could give him. We were fortunate as our in home hospice care was covered by insurance and donations, he passed in less than 24 hours after he came home. My heart aches just to hold his hand once more or kiss is forehead.

Supa Dupa Fresh said...

Stella, thank you so much. "Gift" is a good way to think about it. I appreciate your stopping by and sharing your experience.

Corymbia, I always say I never got to say goodbye either, but that doesn't diminish the special pains that come from something completely sudden. There are certainly a lot of rooms... too many, but heck, at least we can always find a seat and someone to sit with, right? Thanks for sharing. Regrets suck all around!

Sandy, WOW. I think yours is the type of experience Corymbia and I fantastize about! Not that it was good... but certainly that you had some special loving memories of that period of time, and that you know he had a somewhat "satisfied mind," if anyone ever does. Thanks so much for your heartfelt sharing.

Anonymous, It's you I want to say the most too, it's you who I don't have response information on, and I know that most of what I say now will be lost in the fog of all the busy-ness and everything that surrounds you right now. I so remember those early days, even though we are all different, and I am so so sorry for your very recent loss. Know one thing: it will keep changing. I hope you return and join in on my FB and other locations to connect with as many of us as you can. We'll help you and your child get through. It's not easy, and the ache is real, but it's a long road. You won't be alone on it. A giant, giant {{{hug}}} to you today, and all my love as you enter this very difficult world.



gayle said...

I lied. I just called an ambulance to transfer my husband home. I told his nurses he had been discharged. Got him in that ambulance with him in pain and the death rattle, glassy eyes, you name it. He died 13 hours later in his piano room with me and our six and two year old holding on to him. It was beautiful. The last intelligible thing I remember him saying was "thank you, thank you."

Rachel said...

My father died of pancreatic cancer this past March. He spent the last five days of his life in the loveliest Hospice house I could ever have imagined, where all our friends and family could visit and speak with him and bring us meals and comfort. Dad had always said he never wanted to go to Hospice... that he wanted to go home... but my mother and my siblings and I got so scared once we were in the ICU. After days of watching the around the clock care, we just didn't know if we could handle it all on our own at home. We felt guilty for our decision initially but those five days in the Hospice House were, in some ways, some of the most beautiful days my family ever spent together. Our biggest regret is that we didn't move him to Hospice sooner... that we bounced between oncology wards and the ICU as long as we did. I wish more people were aware of how much Hospice can do to make a loved one's final days (and even months) about living.

Hira Animfefte (Xera Anymphefte) said...

I have a book on that. The American Way of Death is the subtitle, I think. It's in a box somewhere, I believe. It was written by an anthropologist who was basically allowed (with permission of doctors, nurses, patients, etc) to observe what goes on in hospitals and hospice. One observation was that doctors rarely if ever straight up tell families that their loved one is dying, and that hospice usually lasts a few days at most. Supa, I'm afraid your experience was normative.

Elizabeth Edwards got something that only wealth and privelege can enable you to do in this country. Our system is not set up for it. Wrong? Damn straight....

My Nelson died suddenly. That book I'd read had nothing to say about sudden death. I almost wish it had....A hail of anvils on my head...

(((((HUGS))))) to everyone.

Magpie said...

This post makes me weep. My mother died at home after a year in hospice care - no one expected her to just keep hanging on like that, but she did. We were lucky to have lovely ladies taking care of her, because it wasn't easy and me and my siblings all had children & jobs. It was a graceful end.

I'm sorry you didn't get the graceful end you, and he, deserved.

Supa Dupa Fresh said...

I am learning to be at peace with it, little by little. Thanks for sharing. I'm sorry for your loss.


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