What to expect from Hospice.

The idea of Hospice was pretty terrifying for me.  I had no idea what to expect from hospice and how they could possibly help us.

How could we have found ourselves here?  We had been fighting this cancer like warriors for 21 months. Much longer than the “days to weeks” time frame we were initially told we had left.  

I had always believed that we were going to beat this.  That we, with our strength and our refusal to give up, were going to get a miracle.  

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I wasn’t ready to change course.  I didn’t want to.

And now that we were here I had no idea what was going to happen.   I was scared out of my mind and stressed beyond what I thought was possible.

Thankfully, the people in Hospice are unbelievable.  Seriously.  I’ve NEVER experienced so many incredibly respectful, caring, and compassionate individuals ever.  

They made the WORST EXPERIENCE families will ever go through…

Better.  Easier.  Possible.

Without their support.  I don’t know how we EVER could have made it through this.  

What is Hospice

Caring hands intertwined on a soft blanket.

According to the Community Hospice we used…

“Hospice is a different kind of medical care, consisting of comprehensive comfort-oriented services and compassionate attention.  This is designed to help patients maximize control over their lives and live with dignity when facing a serious illness. 

Hospice provides treatments that address comfort and quality of life.  Controlling pain and other distressing symptoms is a major priority.

A person is considered eligible for Hospice care if the physician estimates a life expectancy of six months or less, should the disease run its normal course.

Hospice will contact your doctor concerning your medical appropriateness for Hospice care.  Or your doctor may contact Hospice after discussing it with you. 

You actually become a patient of Hospice by signing a consent form electing hospice care.

Once on the Hospice program, you will be cared for by a team of professionals and volunteers.  The professionals include a nurse, social worker, chaplain, and home health aide; volunteers provide companionship, transportation, pick-up and delivery of medications, respite and other services. A “plan of care” is developed for each individual based on the particular needs of the patient and family.

The Community Hospice is an option for people facing any disease, including heart disease, emphysema, chronic bronchitis, cancer, kidney disease, Parkinson’s, ALS, MS, liver disease, HIV/AIDS, Alzheimer’s and dementia.”

When Should You Contact Hospice

Empathetic hands of doctor reassuring a caregiver.

As outlined by our Community Hospice…

“If you answer yes to any of the following questions, you should consider calling Hospice:

  • Is treatment no longer helping or working?
  • Has the patient experienced one or more life-threatening infections during the past six months?
  • Have there been multiple trips to the hospital or emergency room during the past year?
  • Has there been unintentional weight loss and/or decreased food intake?
  • Is there difficulty swallowing?
  • Has there been a continued decline in ability to function?
  • Have you been told there’s no further treatment available and care will now focus on providing comfort or relieving the symptoms, as opposed to prolonging life?
  • Is it becoming more and more difficult for the caregiver to take care of the patient?
  • Has a medical professional given the patient a prognosis of six months or less?”

How to Contact Hospice

You can find a Hospice in your area and they can walk you through what to expect from hospice by contacting your doctor, by searching for Hospice on Google, or by calling 1-800-Hospice. 

They Provide Constant Support

Older woman in a green dress sitting in a wheel chair.  Her caregiver is holding her hand and showing support.

I didn’t even know what Hospice was until we went through this.  And I certainly didn’t know what to expect from hospice.

Hospice is not just about your loved one… it’s about you too.

They were there to make sure we were able to provide exceptional care for my dad.  They made sure we knew what to do and how to make his last days and moments as compassionate as possible.

But, once your loved one appears to be actively dying, their focus shifts from your loved one to the support YOU and your family need to get through this.

These are some of the most compassionate and caring people you’ll ever meet.  

And they provide constant support on every level we could have possibly asked for.  

The day we called, a nurse came to meet with the entire family and help up navigate this emotionally charged transition.  My dad had just spent a week at Memorial Sloan Kettering and the news was not good.  

While the cancer wasn’t necessarily progressing, it was creating some horrific symptoms and the doctor was pretty clear, these symptoms (which were already debilitating) were going to get worse.

When we left the hospital, my dad decided to stop treatment and we contacted Hospice.  I was having a really hard time changing directions.  The truth is, we shouldn’t have made it this far.  But here we are.

21 months we had been fighting this cancer, and we had been in scary situations before.  Situations no one was sure were going to make it through, and yet we did.  I was struggling the morning that Hospice came to change my mindset.  

Hospice Helps You Make The Transition

Stressed woman with hand over her face trying to navigate the emotional stress and unsure of what to expect from hospice.

How do you go from fighting like hell to silence?

I wasn’t ready.  But my dad was.  And now I get that.  He was exhausted.  And he wasn’t afraid of the next steps.

The night before we left the hospital, he told us it was time.  He told us that it was time for him to go home to God and that we would be okay.  He told us that he wasn’t scared and he was ready.  

I’m telling you, cancer is some of the most traumatic shit ever.  Like, once you’ve experienced something like this, your skin becomes a lot thicker.  The little things that you used to think were so important, seem so stupid and insignificant now.  

The Hospice nurse came to our house to meet us and my dad.  Hospice for us lasted about a week, but they offered support well after that. 

The nurse came and walked us through everything….

  • How to handle the medications.
  • How to get in touch with them 24/7.
  • What to expect when someone is dying.
  • How to keep your loved one comfortable.

Hospice Helps you Process This Whole Situation

Woman in black polkadot shirt talking to a therapist a her kitchen table during hospice.

They help you process and work through everything that’s happening.

The thing is we were stunned and heartbroken and we didn’t expect to find ourselves in this place.  We also didn’t know what to expect from hospice when we found ourselves here.

We had been trucking along, beating the odds all along.  The nurse listened to our stories about daddy and our situation. She walked us through everything.  And in the end, we were all in tears.

The people who work for Hospice are angels.  The care and compassion and respect that they bring into your home and into this heartbreaking situation is incredible.  

During that first visit, the nurse set up additional services (they ask you if you want them).  Social workers, therapists, the Chaplin, and later in the week a nurse’s aide came to help us manage this all for free. 

Hint:  Don’t say no to the therapy.  It helps.  And getting this stuff off your chest is so unbelievably helpful.  

Someone (usually more than one person) came every day.  To talk, to check on us, to check on daddy, to see if we needed anything.  There was a TON of support coming our way from Hospice.

The rest of the time, we sat with him.  As the days went by he became more lethargic, so we held his hand, and we talked to him. I told him that I wasn’t ready, but also admitted I was never going to be ready.  I told him I would take care of mommy and everything else that came along.  

Close friends and family were able to come and say their goodbyes.  

They say this is important.  That sometimes people hold on because they aren’t sure their family is going to be okay.  I’ve heard it’s important for them to know that you love them and that you are going to be okay.  I could see a guy like my dad holding on for much longer than needed because he was worried about us.

Hospice Supplies What You Need

Terminally ill man looking at pictures and letters with his children.

Usually, a hospital bed is brought in (we already had one).  A hospital bed makes everything easier, as it’s set up for people who are bedridden.  With a hospital bed, care becomes much easier for things like…

  • Changing the bed
  • Changing your loved one
  • Safety and protection with bed rails
  • Easy repositioning of your loved one 

Hospice also provides things like…

Chux Disposable Underpads: Waterproof pads that make clean up easy after accidents.  They are perfect for beds, chairs, even keeping car seats clean and dry.

Adult Briefs: Urination and bowel movements still occur during the dying process.

Baby Wipes: Make cleaning hands, faces, and bottoms a breeze. 

They walked us through everything.  Even when we had no idea what to expect from hospice.

They had AMAZING tips for care (you can find those here…).  And they showed us how to keep him comfortable which was the most important thing. 

End of Life

Young woman and her husband standing at altar full of candles.  They are sad and greiving after the loss of a loved one.

At the end of the week, exactly 7 days from when we started… very quietly, very peacefully my dad went home to heaven.  

I think I was expecting something dramatic.  But he just quietly stopped breathing.  Heartbreaking and devastating, but the actual event itself was very calm and very peaceful.  

We called the nurse.  She came within a half an hour or so and then the funeral home came and picked up daddy.  Again, very respectful and compassionate.  

I’ve had a lot of time to think about this whole week after the fact.  The truth is, for a while at least it stays at the center of your mind.  

I can’t think of a more compassionate, respectful, dignified way to leave this earth.  Surrounded by the people who love you most in this world.  Provided with care and comfort and reassurance that the next stage will be peaceful with no pain and no tragedy.   

And to know that your family will be supported long after this experience is over.  

Hospice called to check on us and offer support and counseling for months after this was over.  

It was an emotional week.  There were a lot of tears, a lot of stories, a lot of talking, and a lot of love.  It was an exhausting, emotionally spent (I literally had nothing else to give) week.

The absolute worst week of our lives was made easier because of these angels who were there to help us through every minute of this transition.  Despite the fact that we had no idea what to expect from hospice when we started… They answered every question, they listened to every story, they gave us comfort, compassion, and support for anything that we needed.

It goes without saying that after this experience, the hardest part began…

If you’re not sure what to expect from hospice, let them take the lead… I promise you won’t regret it.

P.S.  If you’re drowning in all this cancer business, and you have no idea where to start…  The Cancer Combat Plan is a step-by-step guide from someone who has struggled through this and found ways to manage the chaos, the stress, and the overwhelm.   

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