Posts Tagged With: hospice

More Words I’d Rather Not Need to Know

Hospice

Hospice (Photo credit: ellenmac11)

Hospice.

My sweet friend called to let me know she had begun hospice care. She sounded relieved, happy, almost excited.

I was baffled and confused.

To me that word meant end of life. Period. And a near immediate one at that. Period.  How could she be so positive about this?  I thought of hospice as a kind of throwing one’s hands up in the air, oh well, now we’re done fighting kind of attitude. That’s not typical of my friend. After all, less than a month ago she was a patient aggressively fighting a fiercely unrelenting disease.

I’ve had it all wrong for a long time now. I’m glad I looked into it more.

So what is it? Here’s a definition I found from a place called Hope Hospice.

“Hospice is not a place. It is a special kind of healthcare focused on keeping the patient comfortable once the patient and physician have decided that the underlying disease can no longer be treated or cured. Hospice helps the patient, their families, and other caregivers and hospice care can occur in a variety of settings. It neither hastens nor postpones death and is focused on the belief that quality of life is as important as length of life. Hospice staff members help manage pain and symptoms and provide emotional and spiritual support so patients can make the most of each day.”

Here’s another new word: Palliation. It means easing the severity of a pain or a disease without removing the cause.

That word helps me understand Wickipedia’s explanation of hospice.

Hospice care is a type and philosophy of care that focuses on the palliation of a terminally ill or seriously ill patient’s pain and symptoms, and attending to their emotional and spiritual needs. The concept of hospice has been evolving since the 11th century. Then, and for centuries thereafter, hospices were places of hospitality for the sick, wounded, or dying, as well as those for travelers and pilgrims. The modern concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those who would rather spend their last months and days of life in their own homes.”

No more visits to a clinic or hospital sounds wonderful to someone who has spent the past five years staying in or visiting both on a daily, biweekly or weekly basis. To be cared for in one’s own home by nurses and healthcare providers relieves anxiety and frustration and improves communication. Increasing pain gets addressed quickly, logistics and questions receive almost immediate action, concern for all involved increases.

To work with professionals trained specifically for treating those with less than six months life expectancy changes the focus to comfort and communication and caring.

hospice spiralI get it now. I understand why she feels relieved and happy about being in hospice care.

She isn’t dying so much as she is living. Now that she’s isn’t battling the effects of the chemotherapy and other treatments along with the myeloma, she has an opportunity to spend better quality time with her family, make a few more wonderful memories, cherish every minute.

She’d love to take her kids to a hockey game, go to a symphony with her husband, see a few plays, spend time with extended family, eat well, laugh as much as possible, and live as long as she can. Anything anyone can do to help make any of that happen is welcome to extend a helping hand.

My hand will be held out to her as long as she needs it. And then some. I’m glad so many other hands have now joined in her care.

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Categories: Death, Love | Tags: , , , , , , , , , , , , | 3 Comments

Sudden or Slow?

“Don’t you think it’s much harder to have someone die suddenly than to have them die slowly?”

Multiple myeloma (1) MG stain

Multiple myeloma. Don’t let the pretty color fool you, this is wicked stuff.

A room full of ten women recently heard that question. The one asking is dying slowly. It’s a process that’s being going on for the past four and half years. The one she was asking lost her husband unexpectedly to death six months ago. Neither of these women qualify as old, not by any stretch of the imagination. They are young and at the peak of life’s gifts and joys and grinds.

What a stunning question to ask someone straight out when they’ve suffered such a horrendous loss.

It caught my breath. But they’ve both earned the right at such honesty about  a difficult subject.

But there’s no topic off-limits in that group. Not anymore. Ten years ago, maybe. Now. No.

A short list of some the other losses for that group of friends:

  • Two have cared for a dying or dementia ridden parent who then died.
  • A mother died from cancer.
  • A mother died after a long, long life.
  • A best friend dying suddenly in an accident.
  • A husband suffered a massive coronary, lived, but has lost earning capacity, mental acuity and vitality.
  • A sister with brain cancer.
  • Parents died at the hands of a drunk driver when she was eleven.

The Answer to that question is…

The conclusion was that sudden death was harder to deal with. No warning. No chances to say goodbye, to say last important words.

Although, the slow dying thing isn’t exactly fun for anyone involved either.

My friends talked about extra weeks purchased at the cost of hail-Mary chemo treatments. Talk of hospice and bereavement counseling also bantered about the room.

Honestly, I felt myself trying to physically create an emotional wall in that room. I kept turning my head away from this wrenching discussion, visualizing a barrier, willing my hearing to deafen instantly. Even now, writing about it, I’m leaning away from that side of the room, trying to create distance from such personal stabs of knife twisting pain.

I can’t, I won’t, I don’t want to deal with it.

There’s no escaping though.

We’re all dying slowly.

But that’s not the point is it?

The point is living in the meantime.

Velcade Chemo treatment: Cycle 2, Week 2

Velcade Chemo treatment (Photo credit: tyfn)

That isn’t always easy. Filled to the brim with mean poisons, your body overrun with side-effects, doped up on painkillers to survive the treatment that’s supposed to buy you more time, how do you make use of such poor quality time? How do you smile when the pain is excruciating? How does someone do anything useful, check any tiny thing off their bucket list, interact with their loved ones in a meaningful way under such circumstances? Cancer and its treatment is a personal tornado that rips lives to shreds.

Or maybe your challenges are slightly less complicated than that. Maybe you have chronic pain or a life altering illness. Perhaps you’re unemployed. Maybe you’re always worried about finances. Perhaps you work in a horrid place. Maybe your spouse makes life unbearable. Your parent might need additional care. Your child could have learning difficulties. Your car is unreliable. Loneliness haunts you. Your past feels inescapable.

Or maybe, if you’re lucky, it’s just garden-variety stuff. Busy schedules, sore muscles, what to fix for dinner for the zillionth time, a curfew-breaking teen, piles of bills needing attention, the mountain of laundry requiring scaling, a leaking roof, a tooth ache, weeds.

Living in the moment while living in the reality we find ourselves in. Not always easy. Rarely easy, actually.

Have we created a now that includes eternity or is now all there is? What’s your perspective? Immediate, long-term, short-term? Or maybe with blinders on? That’s a tempting option, but not a great one. How do you get through? What’s your coping strategy?

Death is coming for us all, eventually. Sooner or later. That’s the only way out.

What are we doing in the meantime?

Categories: Death, Mental Health, Wondering | Tags: , , , , , , , , , | 2 Comments

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