****WARNING**** this post contains frank conversation about death and dying. If you are triggered or distressed by this kind of imagery or thoughts, please don’t continue reading.
Mom has since passed away. I am thinking a lot about her last days. Regrets linger over things I couldn’t change.
I was trying to get private duty nurses in to help us take care of her in an appropriate manner. I know my father was struggling to keep Mom feeling comfortable and such, but I don’t feel like he was tending to her hygiene in a good way. He was thinking like a husband, not like a caregiver, and was letting her stay in dirty clothes because he felt it was easier for her. Mom ended up with a bed sore from sitting in one position all the time, and she was sitting around in dirty shirts and pants (not filthy, just not fresh clothes every day). I didn’t realize what was happening because I wasn’t living there until after the bed sore appeared and I found out how he was taking care of her. Then Dad and I tried to take care of Mom, but it was a struggle, especially since I wasn’t there all the time. I’d get calls at 11:30 at night, or 2 in the morning, asking me to come help him clean her up. At that point, they were still struggling to use the bathroom in some normal fashion…and it WAS a struggle. Then as Mom’s capabilities decreased, Dad still wanted her to use the bathroom, which required even more of my assistance more often. It wasn’t that this was an issue for me–despite my lack of experience in caring for an adult in this situation–it was that I didn’t LIVE with them. Yes, I live close by, but it’s not the same…he wouldn’t call me until it was too late and he was in the bathroom with her and needed help. And the rest of the time he didn’t make her move from her position in the recliner…which meant she was probably sitting in wet and/or dirty pull-up adult diapers. It was a sad and painful situation for all of us.
I struggled to find someone to come help us, in part because my parents didn’t want anyone to come in and help, but also in part because I was afraid to make the wrong decision on who to bring in. In the end, I found a group to help us, referred to us by one of the women who cared for my grandmother in her last years. Unfortunately, that woman was out of state now, so I relied on her network of people who still lived here. The main issue is, I regret not forcing this on my parents earlier, because maybe we would have avoided the bed sore. Maybe it would have kept Mom a little more comfortable, and maybe it would have helped Dad hold onto more energy.
I also struggled with the idea of forcing hospice on my parents. Although I knew it would be helpful, again my parents refused to use the service until I basically gave them no option. And it was really too late. We were formally enrolled in hospice on a Friday night, and Mom passed away five days later. Well, it wasn’t completely too late, because the hospice nurses were helpful for those last fourteen hours or so, just in a crisis kind of way.
The biggest regret isn’t even something I have control over, which I realize makes no sense. How can I be regretful over something I didn’t do? Anyway, my father was watching Mom’s blood sugar because it had been going higher. The doctor said it was steroid-induced diabetes, but now I’m thinking it was Mom’s body’s way of shutting itself down in a way that wasn’t so painful. But really, the point here was, her sugar went way up, Dad panicked and called 911, and they took her to the emergency room. There, they went by protocol and began giving her fluids and heart medication (her heart rate was high), then sea-sawing back and forth with medications trying to get her sugar to the right level. Not too high, not too low…while forcing out the acids from the ketoacidosis she was dealing with. The fluids, though, were an issue. She became swollen in the emergency room and then later in the room when she was admitted. She became less and less aware of what was happening around her (she was pretty unaware when they called 911), but she was still verbalizing some things. When they went to change her and clean her up in the room, I shooed everyone out (other than the nurses, obviously) for privacy, but I stayed so she wasn’t alone. And she verbalized a lot during that time…a lot of chanting NO NO NO and OW OW OW when they moved her around. I hope to heaven that was involuntary and that she wasn’t really feeling those things because it just about killed me at the time. When they finished taking care of her, I ran out of the room in tears. And I was absolutely furious that my father kept refusing pain medication for my mother. He wanted her to “wake up and recognize” him. She was long beyond that, but he kept refusing the pain meds because he thought it was the medication and/or the high glucose that was keeping her “drugged up”. No matter what we did to try to show him that she was in pain, he refused to see it. He was so deep in his own pain over losing her that he refused to see beyond that. I’ve since talked to T about it and am trying to accept that he was dealing with the situation the only way he knew how, but there’s still a part of me that hurts at how he treated her in those last days/hours. She should have had pain meds every time they changed her and cleaned her, or moved her, or did anything to her.
It’s my understanding from the hospice research I did that giving Mom all those fluids likely hastened her death, and potentially put her in more discomfort because the fluid goes to places it shouldn’t…like lungs. So there’s another part of my regret…that she had to be in the hospital, getting medication after medication, and hours and hours of fluids. And that she was in pain and discomfort for so long. Even before she was admitted to a room (we got to the ER at 5:30pm and she was admitted to a room at 7:30am the next morning), I was asking how and when we could take her home. The hospital staff wanted to stabilize her from the ketoacidosis…and my father agreed with them. By the time we were able to convince him that we were going down a road we didn’t want to travel, we rushed through to get her home that evening. And my uncle was able to convince my father that Mom needed morphine. We made doubly sure that she got another round of the morphine before they put her in the transport ambulance and transferred her home. And once again, I was the one who had to push to get Mom home…I was the one who organized the transport, the oxygen, the meds for home, the private duty nurses to be waiting at home for us to arrive…and on and on. I’m the baby in my family, and yet I was the one dealing with everything.
We had more issues at home with the oxygen tank. No matter what plug we put it in, it would shut down after 10-20 minutes. T says it was Mom’s spirit shutting down the unit because she didn’t want the oxygen. I wouldn’t be incredibly surprised to know that was true. The hospice nurse arrived and immediate administered more morphine because Mom’s face was scrunched up. Then she began going over instructions on how and when to give medication at home. We had a private duty health aide staying overnight and she learned the information (along with my sister-in-law) from the hospice nurse. The hospice nurse–along with my siblings and my husband–made me go home for the night at that point. Even though they were still figuring out the oxygen machine, they had plenty of people there to handle things–plus the hospice nurse–and I was really so far beyond shut down that I couldn’t have helped even if I had wanted to. I had been going since 8am Monday morning, right through to that time which was 11:30pm Tuesday night. I hadn’t slept or napped any of that time, and I’d barely eaten, though I had managed to try to stay hydrated as much as possible. This was the point where I reported to T that I really gave up. Someone else had to take over what was happening and what needed to be done. Where in the hospital is had been all me handling things, at the house at that point, there were seven or eight people sharing the responsibilities. I wish some of those people had stepped up at the hospital, so I hadn’t felt so alone with all the responsibilities.
The next morning, our “regular” hospice nurse came in to talk to us, to evaluate Mom, and to give us some more education on what was happening. She changed Mom’s medication schedule, administered some more meds, and then she sat us all down in another room. She said that from her experience and based on her examination, she didn’t anticipate that Mom had much time left. She said she wasn’t a doctor or God, but she had two decades of experience and she doubted we had more than 24 hours. She said she’d been surprised before, but she wanted us to understand that we were very near the end.
She wasn’t wrong.
Within the hour of that statement, Mom stopped breathing and her heartbeat slowed to a stop. Dad was with her, the rest of us were in the next room with the hospice nurse and had rushed in when we heard Dad yelling. Only one of my brothers and his wife weren’t in the house with us when Mom passed. The hospice nurse was still there and she continued to monitor Mom with her stethoscope until Mom’s heart had completely stopped. The minutes and hours following are a mishmash of images and phone calls and information and scheduling for things to happen. I was the one doing all of that, and although I’d like to say I remember none of it, a lot of it is burned in my memory banks.
I have traumatic flashbacks of those last thirty plus hours. I’ve started working with T about it, because there are too many images, sounds, and smells in my head that are haunting me. Already one session/set of exercises with T have helped. I go back on Monday again to continue working with her.
This was not how I had hoped my mother’s last days or hours would come about. I know many will say “it is what it is” but that doesn’t stop me from feeling sad about it. The best thing that came out of this is that we WERE able to get Mom home in time for her to pass there. That’s what she wanted.