Is It Time to Call Hospice? Three Signs Caregivers Need to Know

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 (and your loved one) has decided to manage the pain and be comfortable and not actively seek to treat the disease. 

2.  You and your loved one chooses to forego any further testing of hospitalizations–by this choice, you allow the dying process to happen naturally. Body functions/organs may begin to diminish.

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?
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.

 

 

 

 

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 shares:

“Even when my own family was faced with end of life decisions for our grandmother, it was hard for them to figure out how Hospice fit in–This is something she finds common not only to families she works with but in the professional medical community”

 

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

 

 

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