Three Sure Signs Your Loved One is Ready for Hospice

You think your doctor will tell you when your loved one needs hospice?

They should know, right?

Not always the case.

I asked my mother’s doctor about hospice (Alzheimer’s and Parkinson’s) months beforehand and was “poo-pooed” away. Mother had a great way of rallying herself together for doctor visits, but I lived with her, cared for her 24/7, and I was beginning to see a shift.

I knew my mother had taken a turn. I knew that both of us were over the tests, treatments, and hospital rigamarole. I knew, in essence, that she had given up the will to live.


Alzheimer’s does more to a person’s body than simply making them forget names and current events. They forget things at a molecular level as well. They forget what to do with a spoon, how to chew and swallow. These symptoms don’t just come and stay–like early dementia, it comes and goes. That makes it easier to dismiss it, deny it, and hope it isn’t true.


Some days, my mom was pretty alert and could at least remember to put whatever food was in her hand into her mouth. Although her ability to remember me or where she lived seemed permanently lost, her body could still manage biological urges.


On other days, that natural reaction of opening your mouth when food comes near–was gone. That’s a tough realization.

For the most part, Mother was still mobile, or at least trying to be. She had this incredible drive to walk, stand up, and I know that for her, Alzheimer’s had a dimension of added aggitation. Some Alzheimer’s patients pace, exhibit unbelievable strength, and can go with limited sleep.

It’s one of those diseases that can manifest itself differently in different people. Some are babblers, curse like sailors, say and do apprehensible sexual things, blurt out inappropriate racial comments. Others are silent. They’re entombed and barely ever move.

Same disease, different brains.

But how do you know as a family member/caregiver that it’s time to call hospice?

First, the working definition of hospice or palliative care is: your loved one has a “life limiting condition.” Their words, not mine. While it’s technically correct, and I can’t think of a better way to say it, it still sounds odd.

In layman’s terms, most people think it means your loved one has a diagnosis of less than six months to live, and with some hospice situations, a year. While that’s technically true, some people receive hospice or palliative services for much longer.


The difference in hospice and palliative care is that palliative care specializes in the relief of the pain, symptoms and stress of serious illness.

Hospice care always provides palliative care. Hospice focuses on terminally ill people who no longer seek treatments to cure them and who are expected to live for a year or less.

Three signs That Indicate Your Loved One is Ready For Hospice:


1. The disease has progressed to the point that there’s no cure, and you’ve decided to make your loved one comfortable and not actively seek to treat the disease.

2. You and your loved one chooses to forego any further testing of hospitalizations and will allow the dying process to happen naturally.

3. You’re ready to begin to let go, say good bye, and follow the oath of hospice, which is to “neither hinder, not hasten death.”


Check out www.nhpco.org, website for National Hospice and Palliative Care Organization for more information.

Caring Connections also shares this advice: (www.caringconnections.com)

“Anyone can inquire about hospice services. You or your loved one may call a local hospice and request services. The hospice staff will then contact your physician to determine if a referral to hospice is appropriate. Another way to inquire about hospice is to talk with your physician, and he or she can make a referral to hospice.Hospice can begin as soon as a ‘referral’ is made by the person’s doctor.

The hospice staff will then contact the person referred to set up an initial meeting to review the services the hospice will offer and sign the necessary consent forms for care to begin. Usually, care is ready to begin within a day or two of a referral. However, in urgent situations, service may begin sooner.

When is the right time to ask about hospice?
Now is the best time to learn more about hospice care and ask questions about what to expect. Although end-of-life care may be difficult to discuss, it is best for loved ones and family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice becomes apparent. When is the right time to ask about hospice?

By having these discussions in advance, uncomfortable situations can be avoided. Instead, educated decisions can be made that include the advice and input of loved ones.”

Shannon Martin of Aging Wisely shares:

Just recently when my Grandmother died, my aunt (who is a geriatric nurse) said, “I don’t know that it’s time for Hospice yet” even when my Grandmother had stopped eating and they had decided no more hospitalizations, tests etc.”


This shows there’s some denial, even among professionally trained individuals, especially when it involves their own family. Accepting that the end is near, that you will begin to have to let go, to sit quietly by a loved one’s bedside, to not go into “heroics” and throw on the paddles or rush to the ER is very, very difficult.


The last month of my own mother’s life was in many ways one of the most peaceful times of my life. It was also excruciating. As a society, we’re no longer taught to sit with death.

We’re no longer taught to let nature take its course, to relinquish our control. Learning to do this, to hear the clock tick, to let my family come and go as I sat by my mother’s bed and wiped her brow–

It was a finishing of something I had begun.

It was bone deep and cathartic, and gave me time to think and process.

I began to see the whole of my mother’s life.

It wasn’t only what hospice did for me or for my mom, it was what they stood for, the permission they gave us all to let go in love.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

www.kunati.com

What's a Dry Run? Feeling Duped

Caregivers who have made it to the end stage are fitful, worn out creatures who shouldn’t be messed with.

The "dry run" I’m talking about when you think your loved one is going to pass away, and you call all the family, cry, say good-bye…and then they rally back to health.

You think you’d be relieved, but you’re exhausted, and if you’re like me, I felt a duped. Punked, like the new TV show calls it.

We had already called hospice which was extremely upsetting because it means you face that the end is near.

I could barely say the word, “hospice” at first.

Calling all my mother’s family was grueling–to say this again, and again–”I don’t think mother’s going to be here much longer.”

I cleaned her room, bought new curtains, made things simpler, gathered photos for her memorial service, prepared my kids.

Things got worse: she wasn’t eating and I sat by her bed and drizzled melted ice cream bars into her barely parted lips. My back ached. I grappled with the idea of a feeding tube and decided not to. She had stated on her living will not to, but it was excruciating to wonder if I had done the right thing. I wiped her face, stroking her tissue paper skin.

I stopped everything–going anywhere. Cooking–my daughters took over for me. Church–we all felt weighted and no one knew exactly what to do with ourselves. Everyone just sat on the couch…waiting. I lived off of strong coffee.

That lasted for about three days–and nights.

I wake the next morning, and she’s standing next to her little kitchen area.

She looks alert, asks, “What’s for breakfast?”

Now, see the whole picture before you judge my reaction:

My hair is matted to the back of my head from sleeping in the recliner next to her bed, I’m in rumpled clothes, and my mouth feels like I squeezed white glue in it. I haven’t seen the sun in days and I have no idea if my family is still in tact.

Breakfast!

I'm pretty sure I let a few curse words fly.
I was a bit miffed. Confused.

What day was it? Where was I? I scrambled eggs, made her a tray and took a shower.

Yes, I was angry, but it was good to be angry.

What do I mean by that?

Anger, ironically is a positive emotion.

You can only get angry at something you believe you can change.Apathy is when you’ve given up.

I didn’t want my mother to die, but I felt like someone had tied a rope onto my ankle and kept pushing me off a ledge over and over again. Caregiving had taken its toll. My emotions were strung so thin I had nothing left.

I hope letting you know that a “dry run” might be in your future will give you the heads up you need not to wear yourself slap out.

You never know what’s going to happen, but many people experience a “premonition,” an event that precedes the actual time of departure.

I believe it happens for a reason. It helps us get our thoughts and hearts aligned. It helps cushion the blow.

I actually walked around for a few days a bit ticked at her.

My life felt like I was walking into a room and knowing I went there to get something/do something but couldn’t think for the love of kittens what it was I wanted.

She toodled in her apartment (built onto our house), dozed, and we chatted. It’s hard to stay mad at someone who’s living on borrowed time and doesn’t know who the heck you are.

By then, she was referring to me as “little girl,” when she could find words at all.
What did I learn?
The will has more to do with life and death than a diagnosis.

A “dry run” is a lot like what you do when you're a little kid and you go in your mom or dad's closet and try on their shoes, coat and hat. You didn't know it, but you were practicing being grown. You were trying on your future.

And besides, it felt good to be mad. I can deal with mad. ~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

Available on Amazonwww.mothering-mother.com

www.kunati.com/mothering

The Last Weeks of Life: What's It Like?

Every passing is different, and yet, there’s something universal about those final days, hours, and moments.

Most people don’t want to talk about this, and now, most by far, do not have an intimate, up-close experience with death.

I needed to know how to do this. How to be there, how to incorporate this monumental event into my being.

This is what I wrote a few weeks before my mother passed away:

I’m on this euphoric high. It’s not real, I can tell. I’m not on any drugs, but it’s that out-of-body feeling. I’m excited, hesitant and nervous about everything. Walking around feels different, like the balls of my feet are the only parts of me touching the ground. I can’t stop thinking. I need to keep moving. If I slow down everything will fly off the earth.

What will I do? How do I start? I don’t think I can handle more changes. I’m leery of what’s next. I’m thinking about the funeral, the trip to Georgia. I see the cemetery, the gravesite, the mound of orange dirt, the chairs, and the green tent. I see me, shaking hands, a long line of people streaming out in front of me.

I’ve been in this cocoon for so long, these walls are so familiar. I leap ahead to her actual death. Me, there, next to her—will she wake up? Say something? Scream? Will she grab me? Will she just fade away, not saying anything?

During those last days, I kept one book nearby: How We Die by Dr. Nuland. It doesn’t sound like a happy book, and maybe it’s not, but when you need this information, you really need it.
This book became my practical template for what I was about to face. He writes of how we view death in our modern culture. We have to die from a disease now, not old age or because it’s our time. They used to call it “a natural death,” or he died from “complications.”

We’re into blame nowadays.
We think we have to pin everything on something, but life (and death) doesn’t cooperate. It’s complex, ambiguous, and all piled on top of each other like a plate of food from a church homecoming dinner. Forget trying to differentiate the ambrosia from the sweet potato casserole.

As my mother neared the end of her life, I was too tired to blame--nothing like three years of front-line caregiving to wear a person completely out. I read Dr. Nuland’s words about the end of Alzheimer’s. So much of it, I had already experienced. It was as though he were my fortune telling and my trusting palm laid open on the table.

I took deep breath after deep breath wondering how much longer. When someone’s 92, no long eating, barely swallowing, and even if you resuscitate them, what would you bring them back to? She’d still have Alzheimer’s; her body would still be wracked with the end stages of Parkinson’s. No feeding tube or shocking of her heart would change those facts.

Mother’s actual death took about three weeks.
Three of the longest weeks of my life.

Mother was in a coma and couldn’t be aroused without great effort, and then, only to look at me blurry with a backdrop of panic.
After saying my good-byes and making sure that each family member had that opportunity as well, and after I called the Chaplin, and say the Psalms, I stopped trying to rouse her.
I had to do all those things—my checklist. I made as many funeral arrangements as possible, and then it was time to be quiet. Hospice nurses came a few times to take her vitals, but I sent the bathers away.

It was just my mother and me most days.
I let my family go on with their lives.
Ironically, it rained for two straight weeks.
Good ole' Florida rain. Buckets.

I chose against a feeding tube.

This is a family and personal choice, and I don’t think I could have stuck to my decision if hospice had not assured me that this is humane, and that allowing the body to naturally shut down is a valid choice.

I watched every twitch, was she in pain? Not that I could tell.
I bathed her face and hands, swabbed the inside of her mouth with Vaseline. I kept her room quiet, cleaned and decluttered. We were in death-mode, and as unappealing as that sounds, it felt like the right thing to do.

I felt this incredible barometric pressure. No relief. I’d never paced so much in my life. Was I making the right decisions? Should I call 911 and scream, “Save her!” Or do I sit here, quiet, calm, and allow this to happen?

I chose to allow and the pressure lifted.

I found my own sense of closure.
I needed this time.
I needed this low pressure, this finishing of duties, this still and quiet room.
This was the end of a life, and that is profound and sacred.

I wrote hourly.
Stroked her hair, sat beside her, and waited.

~Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir,
available on Amazon and in most bookstores

Kunati Publishing

Sitting Beside Our Loved Ones as They Pass Away

The first time I sat beside someone I loved as they passed away was my adoptive daddy. He was dying of heart disease--something that had eaten at him the last decade or more of his life. I watched him pop nitro-glycerin tablets as if they were Pez candies.



But sitting beside someone in an ICU unit is much different than allowing the dying process to enter your home.



Mother and I were let in hourly--for ten minutes at a time. We sat in the orange vinyl chairs, or hovered over his hospital bed rail. I never felt as if I could get close enough.



And the nurse came and got us, told us he was going, and we stood by as he gasped his last breaths.



Sad, I know, but this too, is a part of life.



My mother's passing was different.

She passed away in my home. I sat in a recliner next to her bed. There was carpet, and although she was in a hospital bed, it was still homier. I had weeks to watch her die. Yes, it was excruciating, but it also gave me chance to climb down the mountain with her.



I've climbed mountains, real mountains, and I've learned it's not the uphill, the incline that's so hard. It's the decline when your quads are shaking, your balance is wonky, and you feel completely off kelter.


I wrote every day my mother lived with us. It kept me sane, helped me work out the enormous pressures and concerns I carried in my heart.

I allowed my family to keep living--going to swim practice, to part-time jobs, for my husband to go to work.



Life doesn't pause much, not even for death. But I sat there, that late spring, and I allowed dying to take up residence.



I wrote in my book, Mothering Mother:



Where are you, Mother? What’s going on?



I’m tired, but I’m more worried than tired. You won’t eat and it’s hard just letting you lie there not eating. The hospice nurse said not to force it and it felt fine when we were talking about it, but it doesn’t feel fine now.


Are you dying? Is this it? Are you taking those final steps or is this just another dip and turn? I don’t know; maybe it’s not for me to know. I’ve been back to your room two dozen times this morning. I can’t stay,



I just keep pacing, adjusting your pillow and cover like it’s going to help. I brush your hair back and look into your eyes, wondering if I’ve lost you for good.



I'm ironically grateful for this experience. I've sat beside my mother. I've read her Psalms, moistened her lips, bathed her hands and forehead. I didn't know if I could do it--sit there like that--but I did.



It's not even as painful to think about now as I thought it might be. It's soothing in a way. It's closure.



As a caregiver, you have to eventually realize that your loved will eventually die. It's tough to face, I know.



I hope whether you're in a hospital, in a hospice facility or at home, that you too, will have the priveledge of sitting in the quiet and experiencing life--and all that it has to offer.



Carol D. O'Dell

Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir,

available on Amazon and in most bookstores

http://www.mothering-mother.com/

What's It Like To Be With Someone as They Die?

I wanted to know what it was going to be like.
I knew my mother was most likely going to die at home--in my home.

I had only experienced death in a hospital setting. Different animal.

Living with dying and death is something I had to learn how to do.

In that order. Dying is sometimes a slow process.
Dying is aching, doubting, hoping.
Death is final.

I wrote about my mother’s death in Mothering Mother.
I wrote about it moment-by-moment. I wrote it that way–sitting beside her, journal in hand. A word, or thought, or phrase that represented hours, days, and weeks as my mother took her “good old time.”

She made sure I didn’t miss a thing.
And I didn’t. I glued myself there.

I was scared. Didn’t know if I could do it.
But as we got there–almost three years of her living (and dying) with me as Parkinson’s and Alzheimer’s took its toll, I found that I was ready.
I had to be there. Follow through. Finish what I promised.

I wrote about it because I could find so little on it.
So little about something we all must do.
Sorry to be so morbid here, but I think it’s important.
Our society is so youth oriented that we don’t look at the full picture–birth to death.

Death was so much a part of people’s lives in the dark ages that they came up with a Latin phrase they used to write over their doors.

Momento Mori. It means, “We all must die.”
It’s known in literature to denote “symbols” of death–black, the skull, the sickle, etc. It dates back to the Roman times, to a general who had a slave walk behind him as he paraded down the streets celebrating his latest victory. The slave would call out, “Momento mori!” Meaning, look behind you, you are but a mortal.

We tend to remember the Carpe Diem version,“Seize the Day!”
It’s the end of “Eat, Drink and Be Merry,” we forget,“for tomorrow ye may die.”

Heavy stuff, I know. But if you’re about to face this, as I had to face this, you might be ready for a frank discussion

That’s why I say we look at it in February and leave the frivolity for May.
We have to incorporate living and dying into our lives in a healthy way. To embrace, and let go, and embrace again.

Readers of Mothering Mother know about my push and pull, mother-daughter relationship. But there was so much that occured before then. Relationships are difficult to translate to the page. So much history, so many tangles and layers.

It took a long time to get to that place–the love, forgiveness, acceptance place. And then, when I finally stopped trying to “fix” us, we were well into the dying process.

We tend to hero-ize or villanize people in our lives.
Good and evil, wicked witch, white knight.
Especially when we’re young–everyone falls into one category or another. The ambiguities and juxtapositions of life come over time.

Daddy was my hero.
I needed one, and he did a good job filling it.
But that made his passing deeper, and bitter-sweet.
Grieving is not only about the five stages of grief. (Kubler Ross–denial anger, barganing, depreesion and acceptance).

We think we can check them off like a grocery list.
No, it’s a circle. We keep going round and round, double back, get stuck, leap frog, only to find ourselves back at square one. But each time we rail against, drown in it, we’ve made progress. Minute progress.

~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
available on Amazon and in most bookstores
http://www.mothering-mother.com/
Kunati Publishing
~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
available on Amazon and in most bookstores
http://www.mothering-mother.com/
http://www.kunati.com/