Almost five months ago, now. That was when my grandfather got sick.
Friday, April 19th
My grandfather, who I started taking care of full-time at the start of the year, called me early in the morning. He was in pain and thought his ear or scalp was bleeding, so I bolted up the stairs to check him out—sprinting through thoughts about what I needed to do to stop it, how to get to the hospital if he was in that much trouble, and so on. When I got upstairs, I looked him over and found no blood, no cuts nor bruises nor anything at all out of the ordinary. My grandpa didn't believe me at first, so I got a warm washcloth and washed his ear and scalp and his glasses, then gave him an ice pack to put over the spot that was in pain.The pain went away shortly, and it returned a few times throughout the day and night but wasn't as bad, according to him.
Saturday, the pain returned, but still no evidence of any cause. My grandpa drove himself to the clinic that morning, I believe, and was sent home with instructions to take some aspirin, which seemed to do the trick. The fact that he was in pain but there were no signs as to what was going on was, needless to say, very disturbing. Otherwise, nothing changed and we went about our usual routines as normal.
Sunday morning (or perhaps it was Monday), more pain along with a little swelling, we drive to the clinic together. The doctor suspected he might have an infection caused by his glasses arm rubbing against his scalp and ear, scratching it a lot, and prescribed him some strong antibiotics in the form of an injection at the clinic and some pills throughout the week. And more painkillers. At night, he didn't sleep as well, but could get to sleep as long as he didn't roll over onto that side of his head.
Wednesday, April 24th
Sudden, dramatic progression of my grandpa's condition. I get up early and make breakfast before he gets up, then check him over as soon as possible. Immediately, I notice that his head and ear are extremely swollen and extremely red with some dark splotches, then notice a split second later that the swelling actually goes from his ear to the back of his head and down to his collar bone and shoulder. We decide to go to the clinic after having half of our breakfast (instead of immediately going straight to the ER like I wanted to do). After waiting at the clinic for what seemed like all day, we meet with a nice nurse and briefly speak with his doctor, who tells us to go to the ER.So, after a few minutes of both of us trying to tell my grandpa that there are more important things going on than his concerns about... I don't even remember what he was asking about, something amazingly trivial, we get back into the car and zip over to the hospital up the road. Out of the car, into a wheelchair, up the elevator, across the hall—bypassing the ER thanks to the doctor calling ahead—and hoisted into a hospital bed. Vitals taken, a lot of questions asked with answers from both of us, then hooked right up to some very strong IV antibiotics and fluids throughout the day.
We meet the doctor, very nice and very professional guy. Message the family throughout the day. Meet the very nice nurses and nursing assistants. Eat lunch and snacks at the hospital. It was a busy day. We talked to my uncle, his son, and it was looking like his condition was improving. He got an MRI at some point, too, and the wound care team came by to clean up his cellulitis later that week.
Since my job for the entire year so far (plus a few months at the end of last year) was taking care of my grandpa, I stayed at the hospital for all but a few hours a day, going home to shower or change and make food to bring back for myself. A lot of the nurses were surprised that I was not only staying for so much of the day, but shocked at my willingness to help them with all kinds of stuff and to even stay the night. I don't why, but it felt bizarre to me that people would see that as impressive or exceptional; I usually replied with something along the lines of "well, what the hell else am I going to do while he's here?"
I can't remember if it was that Saturday or when, but at some point he asked if I could read him one of the books he was reading, or probably re-reading. It was so dry, and my voice was hoarse from talking a thousand times more than I ever do and in a bone-dry hospital, but I got some water and read a few chapters to him one night before bed.
My immediate thought when he asked was a no because I didn't want him to be disappointed about me fumbling over names and not being a great reader. But I did it. He was really happy that I did. And I'm happy I did, too.
Sigh. That was a long, long week...
Sunday, April 28th
Sunday morning. I notice it, and for some reason it didn't click with me, maybe because I hadn't slept well, I don't know. The side of his face (the same as the infection) was droopy. When the doctor visited in the morning, he asked me about it and then it clicked. Doc asked him his name (or birthday, whichever), he answered correctly. Doc asked him where he was, he didn't. We both fear that he had a stroke in the night, and the doctor tries to get him in for a CT scan that day, and plan for an MRI the next morning when people who operate that equipment will be there.I go home for a bit when he goes in for the CT scan, and find out when I get back that it didn't offer any clues as to what happened. The doctor thinks it might be from a pinched nerve since the swelling goes over a big cluster of nerves on the side of the head and behind the ear.
The side of his face makes it very difficult for him to drink water and eat food, but we make do for the day. As the sun started to set—and what would become the new routine for a few days—his condition became... nightmarish.
He had worsening hallucinations that afternoon and by that night he was in some other world the vast majority of the time. He kept believing that he was back home and wanting to go get a particular jacket he always wears in the house, or make food in the kitchen. I'd ask him where he was, and sometimes he would answer "at home" or just look down with a confused expression, halfway understanding that he was at the hospital. Over time, the response turned into an "at home" most of the time, or, worse, no response as if he didn't hear me speaking to him over whatever noises he was hearing and things he was seeing.
Asking to go get something from his room or the kitchen turned into him demanding to go, trying to bargain to get me or a nurse to leave and go, or into him trying to get out of his bed—still connected to the IV at this point, and I asked a nurse disconnect it before long—and essentially fighting against me trying to leave the room he was in to get to his own bed, or get his jacket, or go make food in the kitchen. And he would get shimmering, scintillating, waterfall-like effects in his vision. Later into the night, reminding him of where he was and why he was there, and talking back and forth about his hallucinations was happening not just every hour or every ten minutes, but literally every few seconds. Sometimes, after a second anyway, he would know that he was seeing something that wasn't there, wasn't real, and sometimes not.
While the nurses were tending to other people in the hospital, I sat on my knees on the floor, keeping my grandfather from hurting himself as best as I could for as long as I could. That was one of the longest, most excruciating nights I've had in my entire life. Eventually I couldn't sit there anymore, but ended up sitting there for another half hour which felt like a whole day. He finally settled down (read: got too tired to stay up for a few minutes) and I explained to the nurses (who had also just gotten a break) what was going on and that I needed to leave. Oh, it started snowing, too, I almost forgot about that...
I made some food, cried, shoveled some snow, cried, showered and changed. Then, I went back to the hospital instead of taking a nap. When I got back, the lady at the ER entrance recognized me again, and I walked down the hall wondering what happened while I was gone, what would happen next. They told me they gave him some haloperidol, an antipsychotic drug, which I fully expected. In the room, he didn't seem to recognize me and was backwards in the bed in the fetal position. He was seeing letters, like a newspaper projected onto the wall or random numbers and letters repeating. Later he saw some eggplants, I think it was, turn into rabbits which ran around in front of him and off into the distance.
Throughout the day I was messaging family again, telling them a little of what was going on between trying to handle the situation. I got a lot of questions and demands for information, frustrated messages over nurses "not doing anything to help" when in reality they couldn't do more than what they did. I'm not sure if it happened, but it sounded like someone next door to us got resuscitated.
Monday. MRI. Another short break to go home after staying the rest of the night before and trying to do breakfast the following morning. Nurses asking about respite (for me) one night, how things usually go with him, how much help he needs and what I do for him, what I'll do in the future. Up until this year he was still very independent; he would drive himself everywhere, get meals delivered, go to the liquor store for Irish cream and wine, go the grocery store for milk and hot cereal and several-day-old sweets from the bakery, play bridge with a small group three times a week, and even go hiking in the mountains. I didn't need much respite up until that month, really. Thinking about the future, I had no idea what I would do after we got out of the hospital or if he passed away—I definitely still don't have no idea what I'm going to do about most things.
After a few rough days, his hallucinations get a little less severe and he has a lot more moments of clarity again, which was obviously great, though he still couldn't eat or drink all that well. And, the doctor got swapped out for a new one (they have one work for a period of time then take a break, bringing in another doctor to take over everything).
After talking to more people, a lot of friends started coming and going, and family from out of state and out of the country arrived. Lots of family and all of the nurses were impressed by my caregiving abilities over the past several months and at the hospital, which makes me think about becoming a caregiver, nurse, paramedic, or something along those lines. My grandpa had mentioned that I would be a good paramedic earlier in March because I was dressing a big wound from surgery he had to remove melanoma from his arm and had helped him solve some of his catheter problems.
I thought a lot about everything involved with being a caregiver, nurse, etc.; about how everyone telling me how great I would be at it—like with a lot of things friends, parents, or teachers would say I could be great at as a kid—couldn't see how stressed I really was, how little sleep I was really getting, and how much wear and tear my insomnia and OCD inflict even without everything else going on. I would love to do everything I did for my grandpa for other people, I love helping people and I do know I can be very good at helping people, but the stress kills me. And if I'm not healthy and taking care of other people instead of myself, then I stop being able to care for anyone else. It's complicated. I wish it wasn't so complicated.
By now, grandpa's infection has retreated a lot, and was still a bit pink but not swelling as much. We start talking about going back home soon; "not just yet, but soon." What else changed was his attitude. Like a switch, he went from his usual, easy-going, comedic, and doctor self—he's a doctor, by the way, which made conversations with the prior doctor very interesting and often efficient and lighthearted—to short and quick with his words, very loud, and... Different. Lot's of loud "YES" or "NO" or random outbursts which, granted, were sometimes helpful and nice, or just plain funny and much like his old funny self. That continued over the next couple of days.
Thursday, May 2nd
Several days after we were originally expecting to be discharged, we are finally discharged from the hospital, sent back home with some mouth swabs, lidocaine spray and supplies from the wound team to continue cleaning his cellulitis, some thickener to make liquids nectar thick so he can swallow them, and a bunch of other random things. And with grandpa, of course.We move furniture in the living room and set up the hospital bed in the house in front of the TV, get situated with warm blankets fresh out of the dryer, then meet with the nice hospice nurse and another caregiver to help all of us with respite (which we don't ever end up fully utilizing and feel bad for them being there with nothing to really do).
Friday, May 3rd, 6:00 pm
This morning he was incredibly active and coherent compared to the past week, and very talkative and ornery. He ate breakfast, had coffee and maybe even some ice cream, and out of bed often (scooting over to another chair to eat or watch TV for a bit, or for the sake of getting out of bed alone). It was remarkable, and felt really good to have the whole family there while he was feeling well.That evening, I woke up from a nap to find everyone scrambling around, confused. I was quickly informed of his actual diagnosis that was told to the family by the second hospice nurse. Everyone calls family and messages friends. We stop the food and water, start morphine and lorazepam every few hours. It turns out, for whatever reason, that the second doctor never told us what was really going on. He was dying, to put in bluntly. The cellulitis was actually late-stage melanoma, his kidneys were failing, and I don't even remember what else despite me telling it to other people a hundred times. Great, positive phone calls the day prior, and now terrible, tearful ones this day.
We felt bad for the previous hospice nurse because, in hindsight, it was like she was sent there to take care of a completely different patient and none of the information we were telling her matched up with what was on her notes from the doctor.
We were dumbfounded, but thankful to the hospice nurse for getting everyone on the right track at the right time. As the night went on, grandpa got very tired and weak. His breathing was, well, how it gets when people start dying; labored, rattling; there's a certain despair to the unnatural pattern and sound of it. Hyoscyamine is started to help with the saliva he's producing and not swallowing, which helps with the "death rattle" breathing (it's equally for our sake, I think, maybe more for us). We take shifts to sit with him and keep track of the drugs he's getting.
Saturday, May 4th
Eventually we start giving him haloperidol on a schedule along with the morphine, and increase the frequency of both throughout the night.By now, a lot of people have came to say goodbye. Part of the grieving process is happening for everyone, I think, it's just a matter of how much of the process. I'm trying to think where I was at as far as grieving goes, but I'm not sure. I had done some at the hospital before everyone else arrived, but because the whole experience was such a disgustingly rickety rollercoaster, I went back and forth between some stages.
Sunday, May 5th, 9:47 pm
Grandpa passed away. I was laying next to him with my hand on his chest, feeling his now extremely slow breathing and increasing frequency of apnea-like stops of breath. Then the breathing stopped, his heart slowed down, and finally his heart stopped and didn't start back up. I called my uncle and a family member (close friend, basically family) who were still there over. We cried. More calling family and messaging friends after a lot of people had gone back home a day or two prior.He was my last grandparent. I'm glad I got to spend so much great time with him. I didn't get to see much of my other grandparents in the months before they passed away.
Contacted the hospice nurse and the funeral and cremation service. Family and miscellaneous stuff throughout the rest of the week. More suggestions to become caregiver, more thinking about it, more weighing capability and potential and desire against mental health struggles. Thinking about what it's going to be like without grandpa around.
Sunday, May 12th
I went back home one state over. I planned on hanging out with some old friends, but I was too tired whenever they had a minute of spare time. I don't remember anything I did while I was there except pack up more things before coming back and trying to settle in for a while to take care of the house and help track bills and paperwork and all kinds of things.Shortly after, I started writing new adventures in Eberron, and rediscovering old notes, some notes and ideas from when I was little and had just seen the cover of Secrets of Xen'drik.
Saturday, May 25th
I arrived back here to an empty house. I had issues with my bank, money, car, losing keys, all kinds of stuff was going wrong. Some things got sorted out.Many times I woke up and forgot where I was and was unsure if was morning or evening until an hour or two passed. A lot of waking up or randomly thinking I had breakfast to make for two people, or if grandpa had bridge that day, or if we needed more of his cereal, and so on. A lot of remembering the past couple of months, too. Dreaming about memories wasn't helping my grieving at this point, and was just confusing things more.
Fast Forward: August
Family and friends of other family members start arriving and preparing for a wedding here.Sibling breaks their collar bone, and the doctor strongly recommends surgery, which none of my immediate family members have money or insurance for.
As of finishing this post today, I'm in the middle of a bad mental health week from insomnia and increased stress and anxiety (and ODC). And I'm trying to force myself to apply for jobs again, and failing to find any promising jobs nearby, let alone actually apply for anything.
After reevaluating an adventure I started writing, I decided to overhaul the Eberron project and change to be set in Ravnica. Naturally, I had a minor anxiety attack shortly after, and weird dreams (read: nightmares incomprehensible to the human mind). And, of course, worrying. Mostly (oddly enough) worrying about whether this adventure I'm currently trying to chip away at and finish will lead to anything that anybody can use and have fun playing with their friends.
So much has changed in the past five months. And yet, in other ways, so little has changed in the past five years since I stopped working a "real job" and started seeing therapists and working with my old (now retired) doctor to try to figure out how to cope with my mental illnesses, to put myself back on the road to getting a new job and setting myself up for a stronger future.
Lately, I'm going through one of many waves of trying hard to put myself on said path, and to think hard about the future, staying positive, moving forward. My near future is looking unstable, to say the least.
If nothing else, I'm going to finish this damn adventure. It's the only thing I feel like I can keep pushing forward with at the moment.
