The Heart-Wrenching Part of Caregiving: Hospice and what’s next?
When it comes to caring for our aging parents, one of the most gut-wrenching decisions we face is when to call in the Hospice team. Yes, this often signals that we’re coming close to the end of our journey. However, there are times when people enter into Hospice care and then out as well. It’s not always “the end.”
That said, I don’t want to give you the false impression that your parents will live well beyond this time. The following may give you a bit more guidance in understanding what’s next.
Ways to reduce the emotional pain in deciding:
As we discussed in the other Care Journey posts, the best guidance you can get here is in knowing your parent or loved one’s end-of-life wishes. Do they want to fight hard and long, until they can’t anymore? (This was my dad’s wish). Or do they want you to “pull the plug” so to speak, if they, for some reason, end up in a vegetative or comatose-like state with no chance of waking/or recovering (This was my mom’s wish).
Honestly, for me, the most difficult decisions to make were with my dad. His brain and spirit remained strong even as his body failed. I had to make the final decisions for him, when his body could no longer fight to survive. I also didn’t want him to die alone – without us, on an operating table or in a hospital bed. I’m pretty sure he wanted us all at his side too. Which is what we did.
Mom always s I stated that I should “shoot her” if she got to a vegetative state. We didn’t go that route (not wanting to go to prison), but we did bring in Hospice. That decision was so much easier on my heart because her wishes were always made clear to us (OK, maybe she over did it a bit) while we were growing up.
Still the decision to put a parent or loved one into Hospice care is a tough one. Some hospitals, when they believe it’s appropriate, will make the recommendation. Which often makes the decision easier for you by lessening your doubts. Talking with a Hospice care worker can be very helpful in this process. However, when overworked, some of these professionals turn their conversations into intake sessions, versus helping you make the decision that’s best for your family member. This is simply something to be aware of. In general, though, they’re a pretty special group of people.
What’s next, after I’ve said “Yes”?
If hospitalized, you’ll need to make the decision as to where your folks will live out their remaining days. Will this be at home, at a care facility (not every facility permits this – this is simply a heads up to know before you sign that contract), or at a hospice facility specifically created to support end-of-life care.
Either way, Hospice will explain the rules and service guidelines. These typically include a request by them that you do NOT call 911 in case of an emergency. CALLING 911 WILL, IN MOST CASES, TRIGGER THE END OF YOUR HOSPICE CARE PROVIDER’S SERVICES.
Hospice will also assign you a medical doctor who works with their agency. You will still be able to speak, and work with your own practitioner, but many stop or at least become uncomfortable answering family questions at this point in their patients’ lives.
Hospice will also provide what they call comfort care medication. These are specific medications to reduce any pain, anxiety or suffering your loved one might be experiencing.
Their intake process is pretty extensive, and they will address many more details with you, during this time. Yes, it can feel a bit cold, so be aware of this too. It’s unfortunately all part of the process.
Advantages, Disadvantages, and What They’ll Help You With.
There are many advantages to having a good Hospice team at your side. However, there are some disadvantages too – or what may be perceived as such.
Not having someone there at your side all the time. Hospice is not a home-care service. You’ll have an assigned team to your loved one’s case, and they may be serving as many as 20 or more other families at the same time. Some teams travel as far as 50 miles, or more, between families they serve. Ask your team about how many they’re helping and how far they travel to get a better understanding of their ability to respond to you, when needed.
They’re not always good at telling you what your loved one’s death will look like. This is tough as we tend to live in anticipation of the pain we’ll feel when that final breath comes. Not knowing what this will look like, or when it might be coming, can make this time worse for you, and your entire family.
The key here is to ask your Hospice team lots of questions, direct and specific. This may feel uncomfortable to you, but they’ve experienced it all, but usually will not share the details unless you ask. Most of their answers will be: “they’re transitioning.” Ask them what that means, too!
The Advantages: (there are many):
Your Hospice team has been through this time with other families many times! They have seen the best and the worst behaviors and understand that this is a very private time for your family. They will be respectful and treat your loved one with kindness.
They are available by phone 24/7. Never be afraid to call with questions, fears, anticipations etc. Always ask for your team members’ Estimated Time of Arrival (ETA) if they’re scheduled for a visit, or if you need someone at your side.
They have an extended number of support services beyond your medical team. This includes a C.N.A. who can come in weekly to help you bathe your loved one and teach you how to do this without causing additional pain or discomfort.
I highly recommend taking time to speak with their chaplain. These are non-denominational clergy who will listen to your feelings when the rest of your family members are hurting and can’t help you. If you’re the lead caregiver for your family, trust me, having this support is very helpful. When you’re taking care of everyone else, the chaplain will work to care for you and your parents’ emotions too.
They usually have social workers and grief counselors there for you, too. My own experience was not so great with our Hospice social workers, but many are good. If you’re not happy with someone, let them know! My assigned social worker acted like a bull in a China when my dad died, and we were concerned about my mom’s emotional state. That’s for another story later.
They will help with calling your funeral home when needed. This is a huge blessing. If your parent dies at home and is not under Hospice care, you will be responsible for calling the correct person. In most states you’ll first call their doctor, or 911. You can also call the police for help. If your folks have a DNR (do not resuscitate), make sure they’ve taken their last breath and have passed, before calling for help. EMTs and first responders will typically make every effort to resuscitate without this document. It can be incredibly difficult for you to watch this in action.
True story: A neighbor passed away in the early hours one morning. His wife, frightened and in a state of confusion, came to my door for help not knowing what to do. Thankfully, our small-town police officers realized the man had been dead for a few hours and did not try to revive him. However, before his body could be removed from her home, they had to get the medical examiner in to first declare him dead, and make sure that the death was “not suspicious.” This took hours. Meanwhile, her husband remained on their bathroom floor for another six hours before he could be taken to the funeral home for further care.
Hospice is a respected organization that can be very helpful to a family, and your parent or loved one in the process of dying. Not every family has a great experience. This depends on the team you’re assigned to. If you do not feel comfortable with a team member or those you’re assigned to, you have every right to discuss this with your hospice provider and request another team if one is available.
We are all fortunate to have people who are dedicated to the hospice philosophy, mission, and dedication to caring for those who are passing, with compassion, and us as well. Hospice has a number of support services to help you long after your mom, dad, spouse or loved one has passed. This is a gift in and of itself.
This time is incredibly difficult and will bring up all sorts of emotions for everyone involved. This is tough to understand but it’s a time when you need to also be somewhat selfish and take care of your own feelings, too.
There’s lots more on this front, but the above will get you started on a good path.