This is my story about my time as a caregiver, especially the last couple of years and how it changed my life.
I had lived next door to my aunt and uncle for about 8 years while I was there, I would help by checking in on my aunt and uncle. I would make dinner, take it over there and eat dinner with them every night. Occasionally, they would buy dinner for me and my son to give me a break from cooking and it make them feel good. We spent many nights watching Wheel of Fortune with them while eating dinner, my auntie really loved that. When it got to a point that they were messing up their medicine, I took over getting the medicine ready for them by going over on Saturday’s and doing the week in advance in a labeled pill box. When I would go over there, I would check and make sure that the medicine had been taken throughout the day when needed. I didn’t really count myself as a caregiver then because in my eyes, I didn’t really do much other than check in on family. Plus, I have a very weak stomach, my gag reflex is horrible. I just wasn’t good at those things. Someone else in the family would come in and do those things. I looked at being there with my aunt and uncle as us taking care of each other, I would help them out with things but they would also help me.
Then my life changed in June of 2022 when my dad was diagnosed with cancer. After a whole lot of testing, it was discovered that it was lung cancer and thyroid cancer. I would take him back and forth to appointments and treatments and go out to their house almost every night after I got off of work and do anything I could around the house for them. Working full time and going out there all the time ended up being too much to handle at one time and honestly, I had already used the majority of my vacation time at work and would have ended up losing my job. Plus, it was starting to be more than my mom could handle on her own throughout the day anyway. After several discussions, we decided it would be best if I put in my notice at work and just started being with my parent’s full time. My dad decided after the initial radiation treatments that he didn’t want to do those anymore for the time being and wanted a break from it. That is what we did. He was really tired and slept a lot but was still doing pretty good under the circumstances. I would do little things around the house and just keep an eye on things. In April of 2023, my dad ended up falling while in the yard and broke his hip. For a man in his 70’s battling cancer and still having side effects from a massive stroke 4 years earlier, it wasn’t a good combination. The doctors were not all that hopeful that he would even make it through the surgery, they wanted to give him another day to build up more strength, but he said he wanted to go ahead with the surgery. He made it through the surgery, but during the surgery, either from aesthesia or whatever, he mimicked a stroke again. His whole right side went back to barely working at all. It was horrible. He was just too strong for his own good. I would still ask him occasionally if he wanted me to get the treatments for his cancer going again and he would say no. Others in the family ended up talking to him about starting the treatments again and he agreed. I had a lot of mixed feelings about this. I wanted him to do them to a certain extent because obviously, I wanted my dad better. But at the same time, I could tell how he was feeling and how weak he was from everything else, and I didn’t think it was a good idea. Even so, we got started on that journey again. Started going through some of the testing and he made it through a couple of the tests and then he said that was enough. He didn’t want to do anymore.
Throughout this process, home health was coming in to do physical therapy and a nurse to check in on him every couple of weeks. I could tell that he was declining rapidly, and the nurse suggested palliative care through hospice. It is nursing care through hospice before it gets to the actual hospice stage. I called and got all that set up through his primary care physician and the palliative care nurse came out. When she did and did the examination and started on the paperwork, she said that it was time for hospice to go ahead and start coming instead of palliative care.
The following week, hospice care started. That was definitely an experience in itself. There was so much information coming in at one time and getting everything set up, it was a lot to process. The one thing that got me the most was going to pick up the comfort pack from the pharmacy to place in the fridge for when we needed it later. I knew that was all the good drugs that we would eventually be using to make it easier on him throughout the end-of-life transition. I cried in the pharmacy parking lot that day. Because I was there all the time throughout the day, I was the one on all the paperwork and had to learn a lot about hospice care. I didn’t know much about it; other than the majority of the people you meet are terrified of hospice and what they do. They feel like it is a death sentence and that as soon as someone goes on hospice, not too much later, someone dies. That is so not the case at all. Their goal is not to kill your loved one. It’s quite the opposite. They want to make sure that throughout the remainder of their life, it is as painless as possible. The help they offer, is not only for the patient, but also for the family as well. Everyone on the staff with hospice in our area was amazing. We had a nurse that came out once a week at the beginning and as we got closer to the end, she was there daily. She was amazing. We also met other nurses throughout the process, in case of something going on and them needing to come out and our primary nurse was not on call at that time. (They need time off too.) We also had some wonderful people that would come out a couple of times a week and bed bathe my dad. I think we had 3 different ones that came out for that, but it was mostly one of them. She would take her time and was so nice and gentle, tender and respectful of my dad and his privacy. My dad really liked that one more than the others because of how she was with him and the care that she put into her job. All of them did, but one of them resonated with us more than the others. I could see the decline my father was going through. I hated it so much. I would actually wish that he would go ahead and go so he wouldn’t have to suffer more. It was horrible. Who does that? Throughout this time, I had to step up and start doing more of those caregiving roles that I am not that good with but somehow, I made it through it. I knew, that was not something my dad would enjoy. He was such a proud man, and I knew he wouldn’t want his daughter doing the things that I was having to do. So, I just tried to do them with dignity for my dad. We would chat a little and I would make little jokes with him throughout the time and keep it as light as possible. We would aggravate my mom to no end. There were probably moments she wanted to kill us both. (Not literally.) My dad and I would share some pretty good moments during all of this. We laughed a lot, got pissed at time, I would never let him see me get sad or upset or cry. I didn’t want to make it any harder on him that it had to be already. I let him know that I would make sure mom was taken care of and had what she needed. We would joke around with each other a lot when I was changing out the oxygen tubing, if you didn’t change it out enough, the tubing would start to get stiff and be more uncomfortable for him. When he was still getting out of the bed, he always wanted me to get him up or put him back in the bed. We had worked out a pretty good system together and we could do it pretty quickly and with the least amount of pain as possible. I would have him put his arms around my shoulders and I would put mine around his waist and pull him up and then we would turn to transfer him. (I would always tell him, to give me a hug.) There was a couple of times I think he should’ve stayed in bed, but he wanted to get out. It was starting to get more difficult for me to move him and I was afraid that I was going to end up hurting him by moving him too much. I eventually had to tell him that it was time for him to stay in the bed, that it would be easier on him. He looked relieved. I could tell how much it was hurting him being pulled on and moved around.
There was one night when he wasn’t feeling well and was in pain and we had to call the nurse in, a nurse came out and started a small amount of morphine for him. She also taught me and my sister the way to mix it with another medicine for him. It was all so surreal. I was so scared that I would end up mixing something up wrong and not doing enough and then he would be in pain, and it would be my fault. I worried about that all the time. When his primary nurse came out the next day, she showed me even more and helped ease my fears a little. But that feeling never completely went away. If I had to leave to go home, or go somewhere else, I always made sure there was enough made in the fridge, in case he needed something before I got back. Always. His primary nurse ended up coming to the house every day at that point. I would occasionally help with some things when anyone from hospice was there, but for the most part they wanted to handle it all themselves, to give us a little break during that time. They wanted to make things easier on the family as well as the patient. That is what is so amazing about hospice, they really do care about what they are doing.
During this time, my uncle was not doing very well either. We all knew it was just a matter of time for them both. I didn’t get to go see my uncle that much because I was always with my parents and if I wasn’t with them, I was holed up at my house trying to reset. So, when I did go back, I was refreshed and ready to face whatever I needed to. There was a lot of days that I was giving myself pep talks on the way to my parents. My uncle ended up passing away surrounded by his daughters and their families on September 26th, 2023. My uncle’s daughters and their families hadn’t been able to see my dad that much because they were with my uncle throughout this process. Some came to the house that day to see my dad and the rest came the next day. I went out to my parents on the 30th, just like normal, made up plenty of syringes, helped get my dad cleaned up. When the hospice nurse came out that day, she said to make sure mom wasn’t there by herself anymore. I stayed there for a while that day but came home later that evening. My uncle (dad’s brother) had come in to stay for the duration of my dad’s transition. He was also trying to give me a little break too. I made sure there was plenty of syringes made up and he would make sure to give them to my dad when he needed them. I got the call that evening a little after 10 that he had passed. Everyone in the family went out there, and stayed with mom until the funeral home came to pick him up. The hospice nurse (our primary one and favorite one) was on call that evening so she was the one that came to the house. When me and my family arrived at my parent’s house, my brother and his family were already there. My sister and her family arrived shortly after that. We all took turns going in to say our goodbyes to dad. It felt like it took the hospice nurse forever to get there, but in reality, it wasn’t that long at all. She went in and took dad’s vitals and officially called his time of death. Then it was time to get my dad ready for the funeral home to come pick him up. The hospice nurse always does a final cleaning. I got in there and helped the nurse on last time with my dad. I don’t think I quit staring at her the whole time. I tried to be so gentle with everything I was doing. It was very intense. I could feel everyone’s eyes on me while I was doing it. They were watching, waiting on me to crack. I didn’t. I stayed strong for my dad. After we got him ready, then I had to go in there with the nurse and dispose of the left-over medication. We recorded all of it and gathered up the things we needed for her to take back with her. The funeral home arrived, and I gave them the paperwork and helped them load my dad on the gurney for transport. We all ended up getting home sometime around 2 that morning. When my head finally hit the pillow, I slept really good from being exhausted. That was the last night of good sleep I would get for several days. Every time I would try to sleep, I would close my eyes and see his face from the night he passed. I was finally able to sleep good again after the visitation at the funeral home. They somehow managed to make dad look like he always had. It was really amazing and did a lot to help get the other image out of my head. I will always hold a special place in my heart for the funeral home and the care they gave dad.