I don’t think a day has gone by that I haven’t remembered that horrible last day, and yet the month leading up to that was kind of a trial run for what Dad would deal with if he ended up in a nursing home… I’d never wish that on him. There are a lot of nice nursing homes (I’ve worked in a few), and I have nothing against the nice ones at all… and can be a huge positive move when someone is mentally ready to make the decision. But Dad had always been SO active. Just six weeks before he died, he drove home from Florida in two days, ‘outrunning’ an ice storm. He did all of the driving, though he had a friend with him for company . The second day, he drove from S. Georgia to home (near the IL/WI border) all in that second day. He never drove that far in one day when I was a kid, going to FL for Christmas vacations, when he felt OK. He’d call me when he stopped for gas that second day, and ask me to look at the radar to see where the ‘ice line’ was… and he made it home by about 9 p.m. He had been feeling bad, and wanted to get home to see his doctors (regular guy for the current stuff, and oncologist for routine follow ups after successful thyroid cancer treatment). He felt bad. He’d been in the hospital near Palm Beach for a couple of days, and it scared him.
The week before he died (when that wasn’t even on the radar), and after every other visitor had left, he asked me “what are you going to do with me?” He’d been in rehab for about a week, after 3 weeks in the hospital. I asked “What do you mean, what am I going to DO with you?”. He asked about options if he couldn’t come home. I had been making a lot of phone calls to various facilities that I knew were nice places with good reputations, in the event dad couldn’t transfer with one assist (which he couldn’t at that time). The one-person assist transfer was what would determine any real options. I’d been getting quotes about hourly rates for Certified Nursing Assistants for 12-hour days; I would have stayed during p.m. (and overnight hours) after the CNA got him more or less tucked in for the night, and his friend would have taken the morning/day ‘shift’ so Dad was never alone with a stranger. We figured out how long we could swing that financially (it wasn’t that much extra to keep him in his own house vs. a private room in a nursing home, estimating the costs for medications, doctor visits, etc– but nursing homes are EXPENSIVE. The daily rate only includes room and board- no meds, therapies, doctor visits, etc). But it all depended on him being able to transfer with one assist. At that time, he didn’t even know if he was actually standing up straight during therapy, and was totally unable to transfer without two people AND equipment (for safety). It wasn’t looking good for going home, but I was willing to arrange things if he got well enough to really have choices. He totally understood the one-person transfer requirement,. He knew that was the only reason he was able to care for mom at home, as well as travel with her in those later dementia years, was because she was an easy transfer. He understood.
Dad wasn’t a guy who would do well being subjected to other people’s schedules, the noise of call lights, having to wait to get something he asked for, confused patients wandering into his room, etc. He would have been miserable in an institutional setting. He would have missed his friends, church, and estate sales (though I’m sure his friends would have visited- still a huge emotional hurdle for someone who had been SO independent for so long). This was a man who was always on the go. Being stuck in a wheelchair, dependent for basic mobility/personal needs, and the noise would have been intolerable to him. He was already having trouble hanging in there with the hospital “routine”. He didn’t understand the process of what happens when a doctor writes an order for a new pain med (or anything else). He hurt and didn’t see why it took so long for the doc to write the order, the unit clerk to send the order to the pharmacy, the pharmacy tech to fill it, the pharmacist to check it and call the doc if there were any issues – which meant the doc had to return the call, sending it back to the floor Dad was on, the nurse checking the medication, and then dealing with the thing that was like a medication vending machine, requiring scanning Dad’s arm band, scanning the medication, and then marking that it had been given ( and being only one of 5-6 patients his nurse was keeping up with). On a good day, that could take over an hour… standard hospital operations. In a nursing home, a new prescription would likely arrive late at night with the routine pharmacy deliveries, though nursing homes are required per state regulations to keep initial doses of some of the more common meds to hold someone over until the deliveries came. There are reasons things take so long, but that is of little help to someone who just wants to feel better.
There was also the issue of a private room – something Dad would panic about because of his uber sensitive hearing- misophonia- where ‘routine noises’ like snoring roommates, gum chewing, chattering visitors for the roommate, chatting in the room with his friends, etc were actually way more than annoying to him . They almost caused a panic reaction, and more than once his blood pressure went very high just because someone was chewing/snapping gum close enough that he could hear it. He couldn’t help it. He didn’t have any control over the reactions, which could be rather angry and cause physical symptoms. So a private room in the hospital or any facility was “mandatory” to him. He’d literally beg me to “promise I get a private room” when he was in the ER, and I told him I’d do what I could, and then I’d beg the admitting doc to write the order for a private room, explaining the situation. They were always accommodating, but hospitals and nursing homes MUST save some private rooms open for infectious patients – or like in my case with the leukemia, minimizing exposure to ‘outside’ people who may have had a minor cold, or a sick kid at home. Fortunately, he got private rooms- and I had to explain many times, to whoever I was talking to that it wasn’t a ‘snob’ thing, or that he was the sort to isolate… it was actually a painful situation to hear certain noises.
I think dad knew that he wasn’t ever going to come home. In those quiet early evenings alone with him in the hospital or rehab hospital, he’d give me lists of some of his possessions that he wanted specific people to have. We had always had a very open relationship about ‘end of life’ decisions, other health topics, or whatever, so I didn’t think it was that odd. And fear can be expressed in ‘final wishes’, even if someone is expected to recover. It didn’t strike me as odd. I just kept making notes. I’m so glad I did.
Backtracking a bit, that first night in the hospital (March 3, 2016), he was terrified. He asked me to look at his feet, and I said I’d be happy to, but wondered what I was looking for. He asked if his feet looked like my mom’s did during her final 30 hours. Hers had been mottled with the coloring I’d seen many, many times in people who were very close to death. I told him that his feet looked fine, and were warm, had good general color, had good capillary refill (how fast it takes for the color to return to normal, after enough gentle pressure to make the skin turn very pale), etc. He was so terrified. I made a promise to him that night that no matter what, I’d be honest with him about what was going on, and if my nursing experience wasn’t enough to know the answer, I’d find out and tell him. He told me that I helped ‘calm him’. I wasn’t able to be up at the hospital as much as I wanted to (mobility issues, heat intolerance, needing the wheelchair, increasing pain the more consecutive days I went up there, etc), though we talked daily. I talked to his nurses (which he wasn’t that thrilled about if they were in the room, as the “racket” of discussing his care/condition annoyed him- or, my favorite- “don’t bother them”… he never quite got comfortable with the idea of telling them he needed or wanted something, unless it was for pain- and Dad didn’t even own Tylenol… he had little frame of reference with pain,and generally waited too long to ask for something). I had phone calls from the social worker working on discharge planning, and other behind the scenes stuff- getting rid of the ancient food in his fridge (and replacing it as promised), getting stuff he wanted from home, and checking in to things as he requested.
One late afternoon, he told me he needed the urinal, so I got it for him and told him I’d be in the hall by the door so he could let me know when he was done. He told me that all dignity he had was shot, and didn’t care if I stayed… but he was my DAD ❤ I wasn’t going to not give him privacy. He had the sheet covering him, but still… His only complaint was that I hadn’t let the leg part of the bed down… “Can you fix this so I’m not peeing uphill?”…. Yep, Dad, I can do that. 🙂 He hated having to ask for any sort of assistance for basic daily needs. I could tell that it was wearing down. He felt helpless, and that just wasn’t Dad.
ALL of these things help in a way for my grief process (I don’t mean that to sound selfish)… Dad would have been miserable in a nursing home IF he’d been able to survive any type of surgery. He likely would have ended up with a colostomy, and whatever was going on with his spine wouldn’t have gotten better. We never did know what the lesions pressing on his spinal cord were…. he’d had biopsies of all sorts of things, MRIs (that’s a whole other story), bloodwork, ultrasounds, and whatnot. It wasn’t for lack of trying that the cause of those spine lesions wasn’t found. As much as I miss Dad, I know that being in “the home” would have broken his heart. He would have put up a socially acceptable front, at least for a while. He was such a great social person.
I knew something was changing the summer before when he was offered the chance to be on a private 160 foot yacht, going around Sicily, with his friend and her family (son-in-law was way up there in the top %1). He loved to travel, but didn’t want to go. First he said he thought he might get seasick. He had been in the NAVY… not for long (knee issue), but seriously? He’d also co-owned a sailboat, and loved sailing with his cousin in Milwaukee when he and his wife lived there. Seasickness wasn’t going to fly with me. I pressed him, and he said he was just too tired- he didn’t want to be a dud guest with keeping up with conversation (something dad had always been really good at). That made more sense. I got his OK to talk to his oncologist (same one I’d had for a while) so that on his next visit they could do any additional lab work at the same time they did the routine stuff. Turned out that his thyroid meds needed tweeking. But for him to turn down a trip? That scared me. In some ways, the early twinges of grief had already started when he was still very much alive and active. His health was becoming an issue- which was very new.
On that last horrible day, it also helped that the ER docs were so amazing in how they tried everything they could to make sure that nothing was overlooked when he was admitted that last time. They called four specialists (urology, infections disease, surgeon, and gastroenterologist). They pulled me out of the room, and were SO kind in helping me make the decision that was really already made by the disease process. They made sure I knew what was going on, though when I saw the lab work and heard that the infection from the ruptured diverticula had gotten to his blood, and many other places... I knew. I let them know I was an RN since 1985 (disabled, but keep my license active). I understood the ‘head’ stuff. My ‘heart’ was a mess… but Dad and I had talked about what he wanted, and I promised him I’d do whatever that was. I did. Signing the Do Not Resuscitate form was excruciating… but I’d promised him.
His docs during the hospital stay prior to rehab were also amazing, from his regular oncologist to the rotating hospitalists and specialists. He got good care in the hospital . One of the nurses went above and beyond when he found out Dad liked Heath bars… he’d seen some of the mini ones in a bowl at the nurses station, and snagged some for dad.
I’ve mentioned this before, but it’s something that goes through my head a lot (along with the initial delirium, when the mentally intact man I’d talked to less than 10 hours earlier was incapable of making decisions). I was pulled out of the ER room so the docs could tell me what the CT showed. Dad was resting quietly at the time (after a wild time getting the IV in so they could give him pain meds), but I went back in and told him that the docs knew what was going on but they couldn’t fix him. HIs eyes were closed, but he nodded when I asked if we were still on board to get through this with as much comfort as possible. He nodded when I asked if he was ready to see Mom. And I promised I wouldn’t leave him.
Those last few hours were (and still are) so precious. A couple of Dad’s very close friends, and his cousin had been up to see him. I just watched, talked to him a little, held his hand, kept his lips moistened, and whatnot. Some say that being there when someone dies is’t really for the dying person; it’s for who is left behind. I’m not sure i agree with that completely, but it is true that I would have been devastated if I hadn’t been there for him, if he had died alone. Whether or not he heard me didn’t matter nearly as much as it did for me to know that he wasn’t alone. He was showing some signs of abnormal brain activity (snout reflex when I used the swabs to clean his mouth). The toxins were taking him.
I miss him so much, and yet I’m thankful that he didn’t end up in a nursing home. He would have felt so defeated. He wanted a quick death (who doesn’t ?). While the back pain had been around for months, the infection that killed him didn’t get to the point of him being really sick until those last couple of days. He had time to give me more instructions, and spend time with close friends and family. He didn’t “linger” which is what he wanted. The Palliative Care team at Swede’s was fantastic. They included me in nearly every decision. That helped me feel like I was an active part of dad’s final wishes. So yeah, I guess that being close is more for those left behind- but at the same time, you never know how much hearing remains, or what senses are ‘enough’ for the patient to know that they’re not alone. And I had to keep my promise.
*** please pardon any typos… my eyes are ‘swimming’ as I’m ready for bed. I’ll fix them tomorrow 😉