Hospice is a thing where everything you need to take care of someone magically appears for no cost. It’s like amazing fairy elves who show up with morphine and hospital beds at the snap of your fingers, er… or the dial of a phone.

I always thought hospice was like a hospital where you went to die. In the last few weeks, I’ve actually learned a lot more about it. Hospice is a much bigger bubble than just a building.

Should you or someone you love be diagnosed with a terminal illness, once options to fight it have been exhausted, you will be advised to get in touch with hospice.

Contacting hospice is a way of switching over your medical care from your primary and specialist physicians to the hospice system. Once you decide to make the switch, you no longer contact any of your previous doctors or go to the hospital anymore. You don’t call 911 for emergencies. All care is provided by hospice. If you have Medicare or Medicaid, hospice treatment is almost 100% covered (extended room and board in long term care facilities is usually one of the things that is not). If you have private coverage, you need to check the terms of your coverage, although hospice coverage is included in most health care plans.

There are four levels of hospice care: routine home care, continuous home care, general inpatient care and respite care. 

Routine home care is the level that most patients start with. At this stage a registered nurse will visit you in your home 1-2 times per week to help monitor your pain management. Hospice may arrange for continued treatment with any specialists you had, but that’s done under hospice’s direction now. A social worker is assigned to your case and will check in weekly with you and any family you may be living with. A home health aid may be assigned to your case and start visiting 2-3 times per week to help you with any activities your starting to struggle with, like bathing. All necessary medications and medical equipment will be delivered to your home as part of hospice care – so no more stops at CVS or Walgreens to fill prescriptions. If you request a counseling service, they will set you up with one.

I’ve heard only good things about people’s experience with hospice home health care aids. Unfortunately, our experience with the home health aid’s they set us up with was horrific. My mom was actually my grandmother’s primary care giver, but in an effort to keep on being able to work a little longer once she began to decline, we arranged for a home health aid during school hours. My grandmother was at the stage where she sort of still knew what was going on, but was getting really weak and falling down a lot… unfortunately, she also still thought she could walk.

With the first home health aid, she tried to get out of bed and fell of the floor. The aid wasn’t strong enough to pick her up (even though she weighed a whopping 90 pounds soaking wet at this point), so her solution was to sit on the floor next to her for the next 4 hours until someone came home. This was absolutely ridiculous. It was ridiculous to send a home health aid who isn’t strong enough to help pick someone up, but even more ridiculous that the aid didn’t know to call the main hospice number to get someone to come help them. Fail #1.

So my mom took a few days off of a work and arranged an aid through a different company. By this time, they had switched my grandmother to steroids and, let me tell you, steroid rage is real. And my grandmother decided she didn’t really trust anyone. So in a fit of energy, she managed to break free from the aid and throw my mom’s coffee maker across the kitchen… then a few other appliances and items followed it. This spooked the aid and it was agreed they probably weren’t the best choice to work with her. Fail #2.

Our only success story was the amazing, amazing woman who came on our third attempt about two weeks later, who my grandmother actually let help her… I think it was because she offered to curl her hair for her. She literally died about 30 minutes after the aid got her all dolled up. It was like she was waiting for someone to just put her in order. Success.

Seriously though, if you’re Central Jersey based and need a home health care aid – work with Bonjour. They were the only company around here that had it together.

Continuous home care was actually not a step we ever reached. If you needed someone to live in your home with you to assist you, this would be that step. Sometimes it’s a temporary situation, like your pain management plan has stopped working, you can’t stop vomiting, etc. This state gets reevaluated every 24 hours, but as long as you’re in it, someone will stay at your home with you. Honestly, we really should’ve taken advantage of this, because when they put my grandmother on steroids, she stopped sleeping and kept trying to get out of bed at night.

One morning my mom woke up and my grandmother, who couldn’t even sit up on her own the night before, was standing in front of the refrigerator in a daze, taking out all the vegetables and putting them in the sink. Aside from being like something out of a horror movie, she seriously could’ve hurt herself, especially if she got out of the house. At that point, continuous home care would’ve been merited. Instead my aunt flew in from Florida to help my mom and I took the week off of work and we rotated taking care of her between us.

In continuous home care, all other visits continue, often with more frequency. The registered nurse might start dropping by daily. Even more medication might be dropped off.

Clearly as we didn’t even reach continuous home care, we never experienced general inpatient care either. At this stage, it may be too difficult to control the symptoms of what is occurring at home. The patient is then admitted to a hospice owned or rented facility. Some hospices have their own stand-alone buildings and others rent wings or floors of hospitals or nursing homes.

We did use several days of respite care. The thing about taking care of a dying family member at home is that you don’t always know what you’re doing… and by don’t always know what you’re doing, I mean you are totally freaking clueless at times. And it is just endlessly stressful and horrific. Respite care is actually more for the family than the patient, but it allows you to admit the patient for 5 days of inpatient care at a facility so you can get some rest.

This sounds a little selfish when someone you love is dying, but this can be a several week/month long process and sometimes you genuinely just need to get some sleep or to know that someone actually competent is looking over the person you love.

The interesting thing about these services is how comprehensive they are. Thanks to my grandmother’s Medicare coverage, we could call the hospice phone number and ask for pretty much anything we needed and it would show up. She started having trouble walking to the bathroom? A wheelchair turned up an hour and a half later. She started having trouble breathing while lying down? A hospital bed was delivered and assembled before dinner time. We never paid a penny for any of this. The R.N. assigned to us was also terrific. We could call her anytime to ask questions and she was here whenever we needed anything.

As I understand it, their counseling services are pretty comprehensive as well, but she wasn’t interested in taking advantage of them. There is an old friend of the family who went to high school with my grandfather who is now a Monsignor who stopped by regularly to check in on her and that seemed to be enough for her.

Furthermore, if you don’t have medical coverage, hospice’s will often provide treatment for a nominal fee or free of charge. LOTS of the people who work for the hospice are volunteers. Those speedy delivery guys bringing us hospital beds and morphine? All volunteers.

Hospice’s also rely a lot on donations to be able to provide these services. The vast majority of people we came in contact with had gone through the death of a love one and experienced the benefits of hospice themselves and wanted to donate their time.

So if you’re interested in donating to a hospice with questionable home health care aid choices, but otherwise excellent service, we used the Center for Hope (which is just the cheesiest name, isn’t it?).

Hopefully you’ll never need to know any of this information I just wrote down, but if you do, you can at least go into it with a little more understanding than my family or I had.