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

Care Giving--Care Receiving

We've now turned the words "Care Giver" into a compound word.
Caregiver or caregiving is now written as one word.
Two words smeared together. Apropos. Two lives smeared together.

A Jackson Pollack painting is a great metaphor for Alzheimer's--layers of chaos--some beautiful, others haunting.

I wrote in my book, MOTHERING MOTHER that I thought that caregiving was such a sterile term. Mother has bonded well with her child makes me want to ask if bail has been posted.

I used to teach my daughters that family was an acronym for "Father and Mother, I Love You." It sounded really sweet when they were four and five years old.... Now they roll their eyes and give me a smirk.

Now I have a new word--Care Receiver.It's a two-worder. It looks funny as one word:Carereceiver. Care-receiver.

I prefer, "Loved One."

I'd like to be referred to as the loved one--the one who is loved.

Giving and receiving are reciprocal terms.Someone smiles, the other tears...or just sighs.
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Carol D. O'Dell, author of Mothering Mother, available at Amazon