My mom went into hospice in the beginning of March 2021 and she passed April 12. For those who don't know, hospice is health care that provides end of life care for patients with less than six months to live. There are thousands of hospice companies, and depending on where you live, there may be many options to choose from. When my aunt Rhonda had hospice back in 2016, I didn’t realize there were multiple hospice companies you could choose from; I thought hospice was hospice.
When you sign in to hospice, you basically agree that you will not seek further treatment for your illness, and instead hospice will provide all of your medical care. That means no no doctors’ appointments or ER visits. Hospice has doctors on staff to prescribe medications, but the main staff the patient sees are the nurses and social workers. Hospice care is typically done at home, but some companies also have facilities where patients can be admitted to help control pain. They can be administered IV pain medication or have intrathecal pain pumps implanted.
My family and I live in central Virginia, so we had several hospice options. My sister, Kasey, did her research ahead of time and asked many people about which hospice to choose. This worked super well for our family, and when mom decided to go into hospice, she ended up choosing Capital Caring Health. If you are in this situation, I definitely recommend reaching out to others that have used hospice and asking for their feedback on the company they used.
All hospice works 24/7, meaning there is always a nurse and doctor on staff available to the patient. A nurse from Capital Caring came late one evening to admit mom into hospice. The next morning a nurse and social worker came to further explain what all their company offered and to answer any of our questions. One thing that came up during our talk with them was a DNR (do not resuscitate), meaning if she were to go unresponsive, no efforts would be made to try to revive her. The nurse saw mom's conflicted look on her face and told her, we can wait if you want to decide later. So mom did. And guess what? Mom never got a DNR. The nurses told us if and when mom passed to just call them and not to call 911. Problem solved. So, if a DNR seems to morbid or difficult to think about, you don't have to have one, just make sure all of your family members are on the same page.
My mom had metastases (meaning the cancer had spread) to her bones, and bone pain is one of the most intense pains there is and is difficult to manage, so it was crucial that she get a pain pump. Capital Caring was able to have a nurse administer a subcutaneous (under the skin) pain pump for her at home to keep her pain as minimal as possible. The pain pump has a tiny catheter that goes in the skin of the belly, and then the catheter (tubing) connects to a pump that doses out the pain medication from a bag. The pain pump and bag of pain medication are then placed in a black bag that you can carry. The pump can be set to give a certain dose every so often and it also has a button that can be pushed to give a bolus (single dose). This subcutaneous pain pump is a newer thing when it comes to hospice and not all hospice companies offer it. When my aunt Rhonda was in hospice in 2016, it was not available. Having this pain pump made such a huge impact in mom's comfort level and allowed her to be home with all of us, which was such a huge blessing.
All of mom's nurses were phenomenal, and they stopped by to check in as much as we wanted them to. In the beginning it was about twice a week to check her pain level and pain pump, and it increased in frequency as time went on. She typically had the same nurse during the week, and then we were able to meet several different nurses that worked weekends. Hospice had all of her medical supplies and pain medication for the pain pump delivered directly to the house, but we still had to pick up her other medications at the pharmacy.
Most health insurance covers hospice care. Medicare and Medicaid cover hospice services entirely. Mom ended up with a small (in my opinion) bill for her hospice care. She was still on her commercial health insurance provided by her employer. If she were to have been admitted in Capital Caring's facility, the Adler Center, I'm sure we would have received a larger bill, but all of her hospice care was received at home.
It's important to know that while hospice nurses are available 24/7, they are not present in your home 24/7. If you need help 24/7, you probably want to choose a hospice company with a facility. Many hospitals have hospice wings in them and some companies, like Capital Caring, have free-standing hospice facilities. Because the nurses are not available 24/7 there is a very good chance that they will not be present when your loved one passes. This isn't a bad thing, I think death is a very intimate thing, so I was content with it being just family present, but I think many people assume a nurse will be there when it happens, and that’s not the case.
There were two extra things hospice offered to family members that I was impressed by: free grief counseling and they had volunteers who made us pillows out of mom's clothing. Mom had a social worker assigned to her that came to the house a couple times, but they also have social workers whom offer grief counseling to family members. My sister and I both did grief counseling several times with our counselor, Kristi. The counseling included 10 hour long sessions that could be done in-person or virtually. My dad, sister, nephew, and I all got pillows made by hospice volunteers out of mom’s clothing. This was an incredibly thoughtful thing to do; it’s nice to have something that you can literally hold and remember your loved one. Not all hospices will offer these things, but many do offer services specifically for family members.
In closing I want to say that our hospice experience helped make mom's transition as peaceful as possible. Don’t get me wrong, this process is awful and I wouldn’t wish it on anyone, but we were so thankful that mom was able to be at home with a pain pump, surrounded by family. I highly recommend Capital Caring if you find yourself in this unfortunate situation.
Side Note: This post was just to share the logistics of hospice and help answer questions that others may have. If you're wondering how I was feeling during this whole ordeal with hospice... that's a whole separate post. So stay tuned for that post, and also a post about items I wish we had purchased ahead of time while mom was in hospice.
BeST,
Brittany
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