Holy Hospice

I have had the idea of this on my mind for months, but I haven’t been able to really commit to writing about it. I go back and forth with feelings of anger to thankfulness to sadness, and a million feelings in between.

Ultimately, I am able to write about this, because I think it is so important to share my experience of having a loved one put in hospice care and what that really looks like.

Some background information, my mom was originally diagnosed with cancer in the spring of 2004, about 2 months after I started college. She fought like hell, went through chemotherapy, radiation, and numerous homeopathic routes. Although all of the treatments helped, she never went into remission, but there was a long period of time where the cancer was not growing or spreading, so that was a success for us. She had regular checkups and scans, but we felt like we were on the other side of this whole cancer thing. After feeling funky for a few months and having appointments with other doctors that didn’t really result in relief, she went back to her oncologist for a scan. Now this scan was a bit postponed due to Covid, a week long trip we took, and her not feeling well. When she got this scan in August 2020, the results were a huge shock. We found out that her cancer had spread to several places in her body, mainly her pelvis and chest. I think a huge part of us just wanted to assume that she was going to beat this like she had previously. We all were nervous and scared of course, but my mom was a badass, she would figure out a way to stay. My mom was the type of person who wanted to live, like really live, and not even for herself, but for others, her friends and her family. Several times in the months before she passed she would ask what I would do if she died? How would I survive? Would her husband eat? Who would feed him? What will the grandkids do without their Gammy? She knew exactly how monumental she was in all of our lives and worried that everything would come to a standstill if she passed. So she fought, she got more radiation, she tried a somewhat new immunotherapy treatment, she got genetic testing done to figure out the best treatment plan for her cancer, she even went as far as taking a dog dewormer. She joined a Facebook community for the type of cancer she had as well as the immunotherapy medication she was taking. I am pretty sure she tried every single thing that anyone posted. Unfortunately, nothing seemed to work. At some point, we really focused on making sure she felt her best, instead of getting rid of the cancer. She had a few procedures to drain fluid from her chest, which helped her breath easier, she changed her diet to make sure she was being as healthy as possible to give her body the fuel it needed to heal, and took a million supplements. Some of this helped relieve a portion of her discomfort and pain, but she was never 100%. She was determined to make it through the holidays and to see her 3rd grandchild be born, that would happen around January 30th, and we all knew she would make it until then. We kept on, making plans for the new baby, a vacation in May, maybe a trip during Thanksgiving, we made sure we had plenty of things to look forward to. We were able to celebrate Christmas together and were trucking through January.

On January 8th a Friday, after reviewing a scan my mom had a few days prior, her oncologist called and recommended she be placed on hospice. We were all in shock, we knew her comfort level had declined and that her oncologist felt like she didn’t really have any options, but we certainly weren’t expecting to be at this point, this soon. This triggered several conversations that I thought I would never have to have with my mother, at least not when she was in her 50’s!

After that initial phone call, things happened pretty quickly. Within a couple of days she had an oxygen machine, extra oxygen tanks, a hospital bed, a nurse assigned to her, and a CNA. We had medications delivered, with directions on how to give them. They even brought us a hospice booklet, honestly it's like a death for dummies book. I’ll get into that later.

Once they put her in hospice, my world as I knew it stopped. I packed a suitcase, hugged my husband and my kids, and I went to her. I wasn’t going to leave her side until one of two things happened, I had to rush to the hospital to have that baby or she passed away. I knew in my soul that I had to be holding my mom's hands in the last moments of her life and that I would regret not being there when she passed, for any reason, even the birth of a baby. We took shifts during the night, this was really a joke, because I would stay awake until I physically couldn’t hold my head up. I think most nights I would fall asleep around 3am and then wake up at 6am, and I wouldn’t let anyone else sleep on the couch close to my mom, because that was my spot. By the way, she hated the hospital bed, she said it was so uncomfortable, she ended up sleeping in a recliner every night. I scooted an ottoman next to the recliner so I could sit and hold her hand and study her face. I would lay on the couch at night and once everyone else went to sleep, I would quietly go sit next to her to hold her hand. During this time I did a lot of reading. That hospice booklet that I thought was kind of stupid at first, ended up being a blessing. In the beginning, I thought to myself, how in the world could a stupid stapled together booklet prepare me to watch my mother die? And even more, the damn thing had typos in it, so clearly it was bullshit. WRONG! That thing provided so much insight and assurance. I read things over and over again, specifically the page that gave a step-by-step process of what death would look like. It mentioned the changes in their breathing, loss of appetite, possible hallucinations, and how you would see some changes in their body that would be indicators of death being near.

For the first few days she was okay, she kept her oxygen on, ate like normal, watched TV, visited with people, laughed, hugged the grandkids, and tried her best to relax. She didn’t want to take any of the medications they had given her, so we respected that, and were there for whatever she needed. Eventually she gave into having the Morphine, but was taking half a dose, and not as close together as prescribed. Around the 13th is where things began to turn, she began experiencing more discomfort, she stopped eating, and nearly stopped drinking. That is also the last day she sent me a text message (while I was at a doctor's appointment). She was however still able to communicate with us and tell us what she needed. We (myself and my dad) also felt this was the time that we started giving her the medication more regularly to help with the pain and some of the panic she was experiencing. On Thursday, the 14th, was the last time my mom was completely coherent, that evening, she began talking about things that didn’t make complete sense to us, it was as if she was telling us about who she was seeing, and to be completely honest, the people she was talking about were people who had already passed, like her dad and her daughter (my sister). She had moments where she would kind of snap back, but they were happening less and less and lasting for maybe minutes. On Friday the 15th, her breathing began to change, and other signs that she was getting closer to passing were there, you know, signs that I learned about from that stupid hospice booklet. On Saturday the 16th, I just had this feeling, a feeling I can’t explain, but I knew it was her last day with us. I just had this feeling deep in my soul that my mom would pass on Sunday. I don’t think anyone else felt this way, they thought she had at least a few more days left, even a week, but she was my momma, and I knew. During the day, I noticed that her breathing had changed quite a bit, she was taking less than the average 12 to 16 breaths per minute. I would constantly time her breaths, I noticed it went down to 11, then 10, then 9, and when it got to 8, I just knew we were getting closer. It also got a lot harder to count her breaths because they were so shallow. At some point that night I think they got as low as 6 breaths per minute. I also noticed other things, a lack of color in her lips, her limbs were colder than the rest of her body, and places like her fingers, that weren’t being moved, began to show blood pooling. As morbid as some of these things are to discuss, it was comforting to see the process happening, and knowing that she was comfortable and at peace during that time. Because I could sense that it was happening soon, I did not leave her side. I sat on the ottoman and was determined to stay awake, I could not fall asleep no matter what. Once everyone else was asleep, I sat, holding her hand. I told her how much I loved her, how much I appreciated her, and how great she has been, and then I told her something that I wasn’t sure was even true. I told her that if she was ready to go, we would all be okay. I’m not sure I believed that, but I knew it was what she needed to hear. She was hanging on for us at that point, and it wasn’t fair to her. I remember looking at the clock and it was 11:57pm. At this point I was honestly so exhausted, I laid my head down on her lap, continued holding her hand, and told myself that I would just rest, but not fall asleep. Of course, I fell asleep, and I woke up to the biggest slap on the back of my head/neck. (By the way, every part of me thinks that this was my sister slapping the piss out of me so I would wake up) I honestly wasn’t sure if I had slept for an hour or five hours. As soon as I sat up, I checked to make sure she was still breathing, and it seemed as if she wasn’t, I immediately started to panic thinking I did exactly what I didn’t want to do, I fell asleep and she passed. Just as I was starting to get angry with myself, she took the deepest breath ever. I cannot even describe the relief I felt at that moment. I wanted to go wake everyone up, to let them know it was time, but I could not move from that spot. I watched her take 2 more breaths, her last one being around 12:06 am, on Sunday, January 17th. I sat there for about 10 minutes, waiting for her to take another breath, and when it didn’t happen, I went to go wake up my dad. I didn’t really know what to say, so I just told him that I was pretty sure momma took her last breath. Everyone who was there woke up, hugged her, held her hand, gave her a kiss, and said their goodbyes. We got on the phone with hospice to let them know she passed and they sent the nurse out to pronounce her time of death. After that the guys from the funeral home picked her up. I couldn’t watch them take her, so I went in the other room, that was hard y'all, having her just be gone. The hospice nurse had a few things she had to do, like destroying her narcotics, and offering some services to us. After everything was done, it was around 3 or 4 am. Everyone went back to bed and I just sat there. I think I may have made myself some coffee, I’m not sure.

It was over. She was gone. Nine days after being put on hospice, my mom passed away. To be honest, even though it is one of the most traumatic experiences in my life, losing my mother, the process was incredibly beautiful. Having the support of hospice and family made the process doable. Without the damn hospice booklet, I wouldn’t have been able to prepare myself for what would happen, I wouldn’t have known what to look for, and I think I would have been caught off guard.

I cannot express the importance of me being able to hold my mom's hand during her last moments here on earth. There was also something very comforting about the date of her death, leading up to it. I just knew it would be on Sunday the 17th, so the fact that she took her last breath just minutes after midnight on that date, gave me some comfort. I felt like it was my mom reassuring me, patting me on the back, letting me know that she knew I was there and that we would always have that mom/daughter connection.

I also know for a fact that my dad and I would have never been able to do all of the things on our own. We had several family members and friends who took care of us during that week. I had friends who made sure my husband and kids got dinner every night and many of my moms friends and family made sure we were eating every night. Several people came to hold our hands, give us hugs, and just be there to support and comfort us. There are two people who really stick out when thinking of that week, my cousin Kelli, and my mom's long time friend, who we consider our family, my Aunt Staci, aka Cuz. These two women literally held us together during those 9 days, their strength, patience, knowledge, and love took up every square inch of that house.  Also, shoutout to Aunt Cindy, Mrs. Dannielle, and Aunt Sharon, everything you guys did during that week is appreciated and was so important.

I’d like to end this on a good note by sharing my plans for the future. One day, when all of my kiddos are in school, I plan on using some of my spare time to volunteer with the hospice center that my mom used. I hope to be able to contribute to the peace someone else's family will find from this service. It may not be the most important role in the place, but I want to contribute in anyway I can, even if it is copying and stapling those stupid booklets.

Thanks to Clarity Hospice for everything during that time. Clarity Hospice Website