What to Expect With Hospice Care: A Look at What It’s Really Like.

After 21 months of fighting and some seriously debilitating symptoms with my dad’s diagnosis of Lung Cancer, we spent the week admitted to the urgent care at Memorial Sloan Kettering.  

The night before we left the hospital, my dad started to cry. I was panicking, not sure what to do because throughout my life and through this entire ordeal I’ve only seen him cry maybe once or twice.  

That’s when he told us (my mom and I) that “it was time for him to go home to God, that he loved us more than anything and that we would be okay.” He told us “he wasn’t scared, and he was ready.”  

I wasn’t ready. I was never going to be ready.

The thought of losing my dad was not something I could deal with and the idea of Hospice was terrifying for me.  

I had no idea what to expect with hospice care, what was going to happen, and how they could possibly help us.

I was still in fight mode, gearing up for another battle when my dad dropped the news that he was done.  

How did we get here? 

We had been fighting this cancer like warriors for 21 months. Much longer than the “days to weeks” 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.  

I didn’t want to change course. I wanted to keep fighting, but I understood that my dad couldn’t.

And once we landed 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. 

Which was actually pretty insane considering how crazy this battle had been for us…

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

They made the WORST EXPERIENCE a family will ever go through…

Better. Easier. Possible.

They rally around you but not in a pushy way, in a “you’re gonna be okay, we can help you navigate this” sort of way.

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

What is the Hospice Program

Hospice helps you navigate the end-of-life stuff. According to this article by the Washington Post most people want to die at home, rather than in the hospital.  

But, dealing with end of life issues at home rather than at a medical center, can be really difficult for families and family caregivers. 

Hospice services bridge that gap and helps families navigate everything that comes with end-of-life care. 

• Home visits that start immediately
• What to expect during the dying process
• How to provide an exceptional level of care to someone who is dying (bathing changing clothes, and bedding). 
• How to keep your loved one comfortable and pain-free.
• Hospice comes up with a care plan, specific to the family needs.

Their main focus for us was emotional support, pain relief, and quality of life.  

Depending on your situation, quality of life could mean different things. Making last-minute adventures possible and more comfortable, helping families navigate this devastating transition, and keeping cancer patients pain-free and comfortable in their final days. 

Hospice is like the ultimate support team when your loved one is dying from a terminal illness.  

Once you call, the Hospice team members are assembles for your family…Nurses, social workers, home health aides, chaplains, and a 24/7 call center are at your disposal for the duration of your end-of-life journey. They show up, pretty much every day, give you practical support and help you navigate the most difficult moments of your life.

And they have an ARSENAL of knowledge. Stuff you could never figure out on your own especially when you’re stressed to the max and completely exhausted. Action steps like these amazing care tips that helped us tremendously…

You can decline any services you don’t need, like a chaplain (for spiritual care) or a home health aide but they become available again if you ever do need them. And everyone you meet listens to your stories and offers incredible emotional support.

When Should You Contact Hospice

This decision to begin Hospice should start with the person. When they decide that fighting is no longer what they want, then Hospice should be contacted.  But generally Hospice is for people with a serious illness, or terminally-ill patients who are at the final stage of life.

The Comunity Hospice we used had a list of questions to determine if your situation was appropriate for contacting Hospice… 

• Is treatment no longer helping or working?
• Has there been a continued decline in the 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

This is a personal decision. For several months after that conversation with the doctor my dad kept fighting (he was a soldier!) but when he was ready, we called them right away. 

You can find a Hospice in your area and they can walk you through what to expect with hospice care by…

• Contacting your doctor or healthcare provider
• Searching for National Hospice on Google
• Calling 1-800-Hospice. 

They Provide Constant Support

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

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 comfortable as possible.

And 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. We 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.

At the hospital, my dad had already told us he 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 we did.

21 months we had been fighting this cancer, and we had been in some scary situations before.  Situations no one was sure we were going to make it through, and yet we did.  I was struggling the morning that Hospice came to get on board with this new direction.

I guess I should have expected this at some point, but honestly blocking this out as a possibility helped me keep fighting for a long, long time.   

Hospice Helps You Make The Transition

How do you go from fighting like hell to silence?

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

I’m telling you, cancer is some of the most traumatic shit ever. Like, once you’ve experienced a life-limiting illness 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 the day we called to our house to meet us and my dad for a few hours. Hospice for us lasted about a week, but they offered support well after that. 

The nurse came and walked us through everything that first day….

• 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  

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 with hospice care 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.  

And there are a TON of hospice benefits. Most notably the care, compassion, and respect that they bring into your home and into this heartbreaking situation is incredible.  

During that first visit, the nurse also set up additional services (they ask you if you want them). Social workers, home health aides, and the Chaplin for spiritual support, all came to help us manage this. And everything was free. 

Hint: Don’t say no to talking to someone. 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, check on daddy, or see if we needed anything. There was a TON of support coming our way from Hospice. (more on that below.)

Hospice Supplies What You Need 

There is not a lot of medical equipment brought in, unless you really need it.

Usually, a hospital bed is brought in (we already had one). They deliver them quickly, usually that same day. A hospital bed makes everything easier, as it’s set up for people who are bedridden.  

With hospital beds, care becomes much easier for things like…

• Changing the bed
• Changing your loved one and personal care
• 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, and even keeping car seats clean and dry.

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

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

They walked us through everything.  

Hospice also 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. 

What Are Our Final Days Were Like

Hospice came every day. 

The nurse came and checked his vitals, got a full report from us about anything that was happening, and gave us some insight into where we were in the process.  

She made sure we were okay, answered any questions we had, and checked that we had everything we needed. She also brought extra supplies and showed us how to use them. We never saw a Hospice physician, the nurse did everything.

The social worker came and talked with us (actually we did most of the talking) but that was extremely helpful. The nurse’s aide came every morning and helped us bathe and change daddy and then change the bed.  

We still had laundry to do. A Hospice situation generates a ton of laundry, and we still did some cooking (although we had a TON of food that people either cooked for us or dropped off to us).  

But, mostly it’s a lot of hanging around and waiting.  

We sat with him. He became more lethargic as the days went on, so we held his hand, and we talked to him. I told him that “I wasn’t ready, and I was never going to be ready to do this.” I also told him “I would take care of mommy and Rowy and everything else that came along.”  

Family Members and Friends Came to Say Goodbye

Close friends and family were able to come, spend quality time and say their goodbyes.  

Hospice told us how important this was. 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.

As the days went on, it became clear he was no longer with us.  

He was with someone though, you could see it in the animated way he moved his hands… like he was directing a symphony. He did that for days. He looked content, with his head moving back and forth and his arms comfortably directing a masterpiece.

We talked to him, touched him, and hugged him as often as possible.  

Someone was with him all the time and my mom and I took turns sleeping in the living room where he was, but honestly, neither of us really slept. We took cat naps here and there because we were exhausted but I didn’t sleep well for a long time after this experience.

It gets in your head, this whole experience and it affects you…

My suggestion, try ONE of these AFTER THIS IS OVER to get a decent night’s sleep….

• Baileys and Hot Chocolate
• Benedryl 
• Tylenol PM

Pain Relief and Comfort Care

Pain management is a big deal for Hospice. We stayed on top of the medicine so he would never be in pain. Sometimes his “symphony” would be more aggressive and aggravated, that’s the only way I could tell he was in any kind of distress.

Hospice gives you a small syringe like a needle with no point (like you would use for a baby) and liquid medicine. I would measure it and then shoot it inside his mouth. It absorbs quickly, and you could visually see how much calmer he was after the medicine.

They also send you an “emergency box” of medicine. That comes in the mail and you need to contact the nurse for instructions to use it. Most people don’t need it from my understanding. But if your loved one experiences shortness of breath, or has trouble breathing this medicine will help with that.

Hospice usually discontinues all of your loved one’s daily medications as most of them are intended to help you live longer (like blood pressure, or heart disease meds) but if you’re taking any pain medicine they may help you continue with those.

The most important thing here is comfort and no pain.

It was a long stressful week. A lot of crying, a lot of talking and a ton of hugs.

End-of-Life Care

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. It was 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 my 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, and dignified way to leave this earth. Surrounded by the people who love you most in this world. Provided with care and comfort in your own home and reassurance that the next stage will be peaceful with no pain and no anxiety.   

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

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

Hospice Helped Us Give My Dad the Best Care

It was an emotional week. There were lots of tears, a lot of stories, lots of memories, and a lot of love. It was an exhausting, emotionally spent (I literally had nothing left to give), stressful 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 with hospice care when we started… 

They answered every question, listened to every story, and they gave us comfort 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 with in-home hospice care, let them take the lead… 

I promise you won’t regret it.

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