It’s Been Almost a Year Since Dad Died…

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 😉

Advertisements

My Earthly Rock…. Part Two

This is the hard part… it’s hard to write these memories, that are so fresh.

Dad was transferred to the rehab hospital on March 24, 2016,  three weeks after being admitted to the hospital.   He was very nervous about the rehab hospital not wanting to take him because of various symptoms associated with the spinal cord pressure from the lesion that was still not identified after several biopsies (the spinal cord lesions, bone marrow biopsy- nothing was ever identified as cancer).  I reassured him (or tried to) that those issues were why they were in business.   Dad was willing to give it all he had.  He was weak after three weeks in bed.  During his time in acute care, all transfers were done with lifts or passive movement (mostly to avoid the hospital staff getting back injuries).  He hadn’t been up on his feet for those three weeks.  For each day in bed, %3 of muscle strength is lost.  That’s why it’s so important to be up as much as possible when someone is sick and/or in the hospital.  But sometimes, it’s unavoidable.

The first day dad had physical therapy at the rehab  hospital,  I wanted to be there to get an idea of how he was starting out.   With two therapy staff, putting their shoes in front and back of dad’s shoed feet, and him pushing up from the elevated therapy mat, he was able to stand up absolutely perfectly… but he couldn’t tell he was vertical, and he felt like he was falling.  He knew he was up, but had no idea where he was in space (proprioception issue).   He had a look of terror in his eyes, but he was doing everything they asked him to do.  Everything.   I was actually very encouraged by what I saw, and it brought tears to my eyes.  It really looked like he had a good chance at getting strong enough to go home.  He had to be able to transfer with one assist (one person) in order to go home, and if the first day had him ‘up’, I was thinking that a few weeks would have him that much stronger.  I  kept telling him “you’re doing SO good!”.  And I meant it.

During the initial acute care hospitalization, and continuing in varying degrees, dad had been having stomach pain (he’d also been hospitalized in Florida for stomach issues that were thought to be food poisoning).  It was thought to be from the way the nerves worked coming from the area of the spinal cord with the most pressure on it.   I questioned why nobody was trying to figure out how to help that, and I was sort of dismissed as just not understanding that it was from the spinal cord pressure.   I had worked neuro when I got out of nursing school, as well as various types of rehab during the 20 years I was able to work as an RN.  I understood the obvious symptoms, but knowing my DAD, I also knew that nobody was even considering that something else could be causing a problem.   Being out of an acute hospital sort of narrows focus.  Nobody was looking for any other problem.   And that was a huge omission.  I don’t know if anything could have been done, but nobody was looking.

The stomach pain continued to be a problem in regards to general comfort (progressing to suffering), ability to eat, and his general feeling of not going to be OK.   Come to find out, dad was right.  There was something going on that nobody knew about.  He’d been telling me specific things he wanted done if he died.  He had me write them down.  There were four things he wanted done specifically with three paintings and a  small Steiff teddy bear.  I wrote them down, but never thought that he was not going to get through rehab.

On April 3, at 5:20  that Sunday morning, I got a call from the rehab hospital to tell me that dad was having more intense abdominal pain, and his blood pressure had dropped when they got him up to use the bedside commode; he needed to go to the ER.  I jumped out of bed and grabbed what I might need (my medications) for the day, and took off to try to catch the ambulance to make sure we got to the hospital where dad had been prior to rehab.  I understood that they HAVE to go to the closest one if someone’s vital signs are too unstable, but thankfully they went to the hospital with his more current records about the current situation.  I wasn’t prepared for what I saw when I got back to the room to see dad.

He was delirious from pain as well as sepsis (which was discovered through the ER blood testing).   He was unable to give the right year, and wasn’t cooperating with the nurses as they tried to get an IV in to give him pain medications.   Normally, dad would joke around with those trying to help him, but he kept telling us all to “shut up” (not a phrase he used), “get my overcoat”, and “goodnight, goodnight, goodnight”  (wanted to be left alone). He was also doing these weird biting gestures towards his female friend when she got there.  I got  up near his head to talk to him (and wiping his mouth after he vomited), and explaining that everything that was going on was to help him.  He’d acknowledge that he’d heard me, but was still erratic and ‘not right’.  Eventually, the nurses got an IV in to give him pain meds (and nausea meds), which did help him settle down.   I’d never seen dad like he was that morning, and it scared me, but I had to stay in ‘nurse mode’.   I knew that I’d just become responsible for decisions regarding his care.  He was no longer capable of making rational decisions about his health.  The POAH (Power of Attorney for Healthcare) had just kicked in.  That made me so sad.  Dad had always been able to make good decisions, and his mind had always been so sharp, with a great sense of humor.

Dad was sent for an abdominal CT scan, to find a source for the pain.   When the ER doc pulled me out of the room to tell me what was going on, I was completely caught off guard.  Even the ER docs and radiologist weren’t expecting what they found on that scan. There was a ‘diverticula’ (small pocket that extends from the intestinal wall) that had ruptured.  Dad had never been diagnosed with diverticulosis (the outpouchings) or diverticulitis (inflammation of the outpouchings).  The contents of dad’s bowel had been spilling into his abdominal cavity, causing extreme infection to the point that his system wasn’t able to fight it off (peritonitis with sepsis/septic shock).  The bacteria had also spilled into his bloodstream causing the sepsis and septic shock (what  made his blood pressure drop).  The sepsis was so severe that it was producing gas in his abdominal cavity and bladder.   Four specialists that were contacted, and nobody could fix it. Only one came in to see him (urology guy), and he said that the catheter was the only fix for gas in the bladder (which had already been inserted when he got there).  A general surgeon, urologist, infectious disease doc, and internal medicine doc- and the ER folks- all said that dad was going to die, more by what they didn’t do than what they said.   I knew what they were saying, and yet it didn’t seem possible that this vibrant man who had driven home from south Florida just weeks earlier was going to die very soon.  And that I was responsible for any decisions until that happened.

Dad and I had discussed end of life care many times, and I knew what he wanted.  He didn’t want anything heroic or that would prolong the inevitable.  The disease process was making all of the decisions for him for the most part, I just had to sign off on not doing anything active, other than whatever it took for comfort.   I knew that he didn’t want to be a full code- he had made himself a “no code” when he was initially hospitalized in March.  But signing that “Do Not Resuscitate” paper broke my heart.  I felt like I was giving up on him, and yet I knew that keeping him in a state of intense suffering would have been cruel and selfish. The ER doctor and nurse practitioner made sure I understood what was going on, as well as the inability to offer any hope besides comfort care.  When  I told them that I’d been an RN since 1985,  they sort of relaxed a bit.

I had gone back in to talk to dad, telling him that they knew why he was so sick, and that they couldn’t fix it.  He nodded enough to let me know that he heard me.  When I asked him if he was ready for comfort care only, he nodded (not that we really had a choice).  When I asked if he was ready to see mom, he nodded again.   I had promised him that first day he was in the hospital (March 3) that I’d be honest with him about anything I knew, and I felt that I needed to keep my end of things regarding what the CT scan had shown.  That was one of the hardest things I’ve ever had to do.  He had a right to know.  He almost seemed relieved.  He’d been in so much pain, and was facing dependency in a nursing home if he couldn’t transfer with only one person.  That wasn’t my dad.  My dad was the guy who got up at 7:00 a.m. to go stand in line at estate sales, or drive crazy distances while traveling.  He wanted to live as long as possible, so when he nodded that he was ‘ready’, I knew that he needed the ultimate relief of being healed by the Great Physician.  He was ready to see God.

They offered a bed in ICU, which would have driven dad nuts with all of the bells and alarms, and it wouldn’t have fixed anything.  Dad hated any extraneous noises, so I knew he just wanted a private room where it was quiet.  With any admission, he’d beg me (literally) to make sure he got a private room.  I had to tell him those times that I’d do what I could, but hospitals have to reserve some private rooms for people who are admitted with infections that would put others at risk.  But with palliative care (end of life), private rooms are generally available.  So that’s where we went… to a room on the cancer floor where they were used to handling patients who were there for comfort care only, until the inevitable happened.

I had called one of dad’s close friends earlier that day while dad was in the ER, and let him know what was going on.  He had been able to get to dad’s Sunday School class and let them know  en masse, which was incredibly helpful (one of dad’s lifelong friends was also in that class, and he came up when dad was still in the ER).  Those two friends were able to come and visit, and another friend had dad’s brother’s phone number (he was in Florida) so I could let him know as soon as I got it.  My uncle called dad’s local cousins, who were able to see dad later that afternoon, after dad had lost consciousness.  But they were there, and able to spend time with dad once he got to the room.  I firmly believe that it’s important to let people know that they aren’t alone, even if they can’t respond.  It was important that those friends and family be able to see dad before he died.   The friend that I first called (I had his phone number, as he was my ‘go to’ guy while dad was in Florida) arrived after dad was in the room, and I went out to tell him that dad was dying… I’ll never forget the look on his face. Nobody was expecting things to change so drastically.  Both of those friends had seen dad the day before, when he seemed to be doing better.  Looking back, it’s likely that the diverticula had already ruptured, and the pressure was relieved, so he felt better- but that started the cascade of toxins in his system, that ultimately caused the septic shock which is what killed him.

During the time in the room, the nurses were fantastic about watching dad’s comfort level. Even when someone can’t verbalize how they feel, it’s easy to watch restlessness, picking at blankets or clothing (dad kept trying to remove his gown, so I just took it off and kept him covered with the sheet and blanket),  moans, etc.   I was there from the time he got to the ER that morning, and  alone with him after 9:00 p.m. or so, when the others went home.   I wanted that time alone with him, knowing that those were going to be the last hours I’d ever have with my dad.

The nurses would come in periodically, and ask if I wanted certain things done (blood pressure, blood sugar, catheter, etc).  I agreed to anything that was for comfort (the catheter helped decompress the gas that had built up in his bladder, but there was already no urine being produced).  Nothing was going to be fixed by having his arm squeezed for a blood pressure reading (but I did agree to them doing it if they needed it for paperwork; they didn’t).  His blood sugar wasn’t going to get better (he’d been on steroids for the spinal cord pressure, which are known to elevate blood sugar, as can infection).   I’d had to make the same decisions when my mom died.  Dad had deferred to me once he knew that mom wasn’t going to recover from her sepsis caused by a urinary tract infection that was blown off at a hospital in Sun City West, AZ (not Mayo).  It was a horrible repeat of her death in many ways.

For almost four hours, I was alone with dad.  I’d sort of flip flop between ‘daughter’ and ‘nurse’ mode.   Sometimes, I’d sit in the recliner by his bed and just listen to his breathing, never wanting it to stop, but knowing that he needed to get some perfect peace.  Other times, I’d  sit on the bed, and hold his hand or stroke his cheek with the back of my hand, telling him how lucky I’d been to have him for a dad.   I reassured him that I’d be OK, but that I’d miss him.  I let him know that I knew he’d been working so hard to go home, but if he was ready to rest, it was OK  (it’s important to let people know that if they die, loved ones will be OK).  The nurse medicated him a couple of times when his breathing indicated that he was likely uncomfortable.  And, I’d  cry, knowing that ‘it’ was going to ‘happen’ soon.  Those hours were both precious and excruciating.

Finally, his breathing eased into a gentle rhythm.  There was no struggle.  He just slowed somewhat, and then his breathing gradually and gently slowed to a stop.  I was sitting on the bed with him when he went to be with the Lord.  There was a single facial ‘contortion’, and then ultimate peace and healing.  He was reunited with mom (they’d been together for 46 years), and his love after mom had died (Marilyn- 8 years).  He got to see his two sons who had died as newborns, within a couple of weeks after their separate births.  He was reunited with many friends and family.  And, most importantly, he was finally free of the pain and fear that had gripped him for many weeks.

It’s only been a little over a month since dad left this earth.  I will always be so thankful for the 52 years I had him.  He was my biggest ‘cheerleader’, and always had my best interests in mind.   I miss him.  A lot.  But with hope in the promises of the God I believe in, I know I’ll see him again.