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

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