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.

The Why of Loss

I remember when a dear friend of mine died unexpectedly a few years ago, I couldn’t get past the question ‘why?’.  She had been through several complications and surgeries from a knee replacement, coupled with her longterm steroid use for rheumatoid arthritis.  Her muscles, tendons, and tissues were weakened by those steroids that she had to have in order to treat the arthritis.  When she was found dead one morning on her daughter and son-in-law’s floor, I couldn’t comprehend it. I had talked to her the night before, and she sounded great!

I had talked to her nearly daily since she’d moved in with them in another state, to be closer to her grandkids (she was so excited!). I had talked to her daily from each of the rehab facilities she had been in following the various surgeries.  She wanted a nurse’s input regarding some of what was going on, or for me to explain how things work in nursing and rehab facilities (one of which was a kinda creepy). She had done well during the various phases of her surgeries for the knee issues, until another complication set in. When I talked to her the night before she died, she asked me to call her the morning, as she’d be at home alone. She was perfectly safe doing that even with her cast. She was someone who just got it done. But she said she’d feel better if she knew someone was going to check on her- so I told her “no problem”.

When I called several times that next morning, and got a busy signal, I knew something was wrong. The house phone had more than one line. One line should be open.  A few hours later, her daughter called and confirmed what I already knew in my gut. She was gone.  It had apparently been very sudden, as she was next to the bed.  I couldn’t grasp it.  It still bugs me sometimes, but I understand that she didn’t suffer.  She’d been through so much.  At least the end wasn’t painful, like the years of rheumatoid arthritis had been.  I still miss her like crazy; we’d been neighbors, and while we hadn’t known each other for that many years, we had near daily contact during the last eighteen months or so.

When my mom got sick during her winter with my dad in Arizona, I was livid at the treatment she got (or didn’t get). The emergency room in Sun City West had blown her off. She had been brought in by ambulance, unconscious after a seizure- and they couldn’t get blood samples to find out if she had some sort of systemic infection (sepsis)- but they got an IV in. Most competent ERs get the blood from the IV site before they hook it up to fluids (if fluids are started- which they were). They got a urine specimen, that showed a bad urinary tract infection, which along with the altered level of consciousness should have screamed urosepsis (when the bladder infection gets so bad it gets into the bloodstream) and the need for admission to ICU for IV antibiotics.  That is SO basic, and yet it was ignored. She was sent home with my dad on antibiotic pills.  She was semi-conscious and they sent her home on pills (the home they were renting).  It took three people to get her into the car on the hospital end- they didn’t care how she got out of the car at home….with my 71 year old father as her only caretaker.  He found some friends to help, but he shouldn’t have been in that position. Period.

My take on the whole Arizona ER situation is that they saw my mom as some disposable dementia patient who had a ‘Do Not Resuscitate’ request IF she was to the point of needing resuscitation. But her heart hadn’t stopped. She had a treatable problem.  She had been with my dad to an art museum the day before. She still enjoyed things, even if just for the moment- but in the eyes of those medical ‘professionals’ the hospital people, she wasn’t worth the time. The hospital had been full; several people were waiting in the ER for a room. But the greater Phoenix area has many, many hospitals. A competent ER doctor would have sent her to another hospital, and that would have been appropriate. Instead, my dad had to make arrangements to fly her back to Chicago  after a few days of those antibiotic pills (crushed in applesauce) to make her just well enough to fly. When I went to help get her off of the airplane, the flight attendant told me that dad had to hold mom’s head up for most of the flight back. He’d left his car in the parking lot of Sky Harbor Airport in Phoenix, and flew with what he had on his back. The original plan was for me to pick her up with a family friend on this end of things, and dad drive the three days back. But the airlines wisely required that dad fly with her.

It’s a good thing that dad was with her, since he never would have made it back from Phoenix before she died. She was admitted to the hospital as soon as we got into town from O’Hare (airport near Chicago- for those outside of the US), and was dead within 48 hours.  Gone. I’ll never know if she would have had a chance IF the hospital in Arizona had done the right thing.  They took that away from us.  But, she also didn’t end up getting even more demented and lying in a nursing home, not knowing anybody.  I’d moved back from Texas just 3 1/2 months earlier to make sure she stayed out of a nursing home as long as it was physically possible for me to help dad keep her at home… and then she was dead.

I think about a 90+ year old lady who had been admitted to a nursing home I had just started working at in Texas. She had developed  kidney failure after a severe bleed in her gastrointestinal (gut) tract. The blood loss was so bad that her kidneys didn’t get enough blood to keep them functioning. The family decided that she was not going to get dialysis- the only thing that would keep her alive. She was admitted to the nursing home not knowing her own name or why she was there. This was a lady who had been living on her own, in her own house, doing her own yard work, etc.

Her life had changed in one single day. The aftereffects of that day lasted the rest of her 34 days. She got to the nursing home 17 days after the bleeding started. She left the nursing home a couple of weeks after that, following continued deterioration, and readmission to the hospital (and a physician who didn’t return calls to nursing homes; he was a problem).  Without dialysis, her body couldn’t even get stable. Her legs leaked fluid from the loss of proteins in her system, causing pools on the floor under her wheelchair, for the brief periods of time she tolerated being up. And her skin became fragile, and ‘broken’. The really sad part of that lady’s story is that her family decided that they’d like to profit from her death, and held the nursing home (four of us who worked there) responsible- even though they were the ones who refused the dialysis (and I understand why they made that decision- it would have been a miserable existence for someone who didn’t understand why it was happening- and getting a shunt into her blood vessels would have been a nightmare of torn vessels from the low protein levels). The doctor was never named in the lawsuit; he also didn’t help our defense attorney (provided by the corporation that owned the nursing home).

I was one of the people sued for wrongful death. To a nurse, that’s like saying I killed her. The lawyers had absolutely NO interest in the truth, or even the entire story- they just wanted some way to make money. Period. I felt like I was being accused of murder. I took care of that woman the best way I could; she was dying when she got there.  There was division  in the family about whether or not to sue- and nobody ever visited or called when I was on duty during the day, so I never even met the person who initiated the lawsuit.  What that lawsuit did was erase most of what made that woman who she was– an independent elderly woman who was amazingly strong and intelligent, and reduced her to a lawsuit.  The lawyers eventually settled, which angered me. I was ready to go to court. After a grueling seven (7) hour deposition, I wanted to see it through. But lawsuits don’t work that way- they just destroy people on one side, and issue a paycheck to someone on the other side (and their lawyers).  When there is some evidence of absolute negligence or malpractice, that’s one thing. When someone dies because their body breaks down, and someone wants to blame someone for it, that’s something else. 😦

Lousy things happen. Sometimes, there is some nice explanation, and it’s somewhat expected, even though it still leaves a sense of shock and deep, deep loss.  With each of the three examples above, I have to look at one thing: at least it wasn’t worse.  My friend could have ended up in a nursing home for life dependent on people to help her with basic mobility, her mind intact- that would have crushed her independent spirit.  My mom could have also ended up in a nursing home, oblivious to anybody or anything around her for years– at least she still recognized people up until 36 hours before she died. And dad and I were both with her- he wasn’t on the road, and I wasn’t stuck here waiting for both of  them to be able to get here, unable to have those last days with her.  With the lady in the nursing home, well, her situation was pretty bad all the way around. And it was made worse by the displaced grief and anger of at least one family member,  and questionable intra-family dynamics. She will always be associated with ‘the lawsuit’– not a sweet lady who had been changed by tragic and unpredictable physical disease.

I can’t pretend to understand why God allows some things to happen. I can understand why things fall apart from a medical standpoint. When one thing is going on, it’s usually pretty straightforward. When there are complications and coexisting problems, that makes it easier to understand in my head, though my heart has trouble catching up. I do know that in God’s timing and purpose, all things work together for good.  That doesn’t take the pain away, but it does help me realize that there is a much bigger frame of reference for things than my human brain can comprehend.  God has it under control- and He’s with me when I do or don’t understand why some things happen.  Sometimes it’s just so hard not to want to be able to make sense of it all….and some things just don’t make sense.  Except to God.

Nurse 101: How to Understand Your Nurse

In these days of patient satisfaction surveys, the actual quality of the nursing care has become a sideline in hospitals, clinics, and medical offices.  These surveys focus on things that have absolutely nothing to do with the quality of care or knowledge of the professional staff; they refer to the pleasantness of the hotel experience that happens to have nurses instead of concierge staff.  SO, it’s only fair that the patients know what the nurse actually does.  When I slip into the feminine pronoun, I’m really including all nurses- male and female.  It’s just that most of my former co-workers were female before I ended up on disability (c’mon guys- go to nursing school, we need you, too !).

1) Your nurse protects you from stupid people.  That may be a less experienced nurse, a very experienced physician (somebody had to graduate bottom of the class),  your family and friends, or even yourself.  While you have every right to undermine your medical care, your nurse is required to follow orders and standards of practice. Those are designed to keep you in the best shape possible…so you go HOME.  He/she cannot participate in your non-compliance, so don’t get mad at him/her for not responding to your temper tantrums when you don’t get what you want.  Get well, go home, and self-destruct there.

2) Your nurse uses his/her experience to know if you are starting to tank. Go down the tubes. Circle the drain.  He/she then notifies your physician- or in the case of a massive meltdown of your respiratory and/or circulatory system, calls many people around the hospital to come and try to keep you from dying.  That is called a ‘code’.  That is a very serious thing- and it could be happening to someone else your nurse is responsible for, so that request for another box of tissues may be delayed.  Dying person trumps runny nose. So sorry.

3) Your nurse is not paid to babysit your unruly family, or chase your nieces and nephews (or kids) up and down the halls.  Either rein them in, or don’t be surprised when they are asked to leave. If you need help with that, security loves to escort people to the parking lot!

4) Your nurse actually wants the best for you.  She wants you to get well, and she hopes that you also want to be a partner in your own care to achieve the best possible outcome.  She didn’t go to nursing school to watch people make lousy choices and then do all they can to stay sick.

5) Your nurse wants you to be happy with your care !  Sometimes it might seem like she is distracted….well, here’s a secret: she has more patients than just YOU !   Most nurses I’ve worked with want to spend more time with patients, but there are medications to pass, doctors to call, orders to process, calls to pharmacy and consulting doctors, CHARTING (documenting down every fart, pee, poo, problems with pain, complications, and what not- on EVERY patient she has), etc.  There is a LOT going on behind the scenes that also goes into your care, and the care of all of her patients.  Let her know what you want and need- but give her a break if it takes a little while to see her again…she may have 4-5 other patients (on the day shift in well-staffed hospitals) that also are asking for things.  When you are sick, it’s hard to think about the other folks, but she has to worry about them as well 🙂  It’s not that she doesn’t like you…you’re just doing better than the next guy, so she has to keep that person from bottoming out before she can come back and see how you are doing.  If you have something going on that really can’t wait (chest pain, can’t breathe, blood shooting out of your nose, or some other medical change that is making angels sing in your head), then tell the person that answers your call light.  While the nurse who comes in to check you won’t know you as well as your ‘real’ nurse, at least you’ll have someone check you out.  But if you use that for everything, you will have a very cranky nurse with a fake smile.  Not really all that great to piss off the nurse. She wants to like you, but it’s not a requirement.

6) This is a big secret: Nurses have bodily functions and get sick!… and most of the time they don’t have 3 minutes to address them.  Lunch may be a granola bar in the bathroom, since there’s not time for both (don’t worry, she’ll wash her hands).  She might be at work with a horrible cold, because the nursing office won’t allow nurses to take sick days unless they are dying and have a certificate from 6 doctors saying that being at work will kill her sooner. OK, it’s not quite that bad, but nurses are not encouraged to take care of themselves.  Taking days off is considered ‘inexcusable’ and if she has too many of those, she gets fired.  If she has kids, taking time off for a sick kid counts against her.  Your healthcare professional is encouraged to ignore her own health, to take care of YOU !

So here’s the bottom line.  Your nurses want you happy and on the road to recovery. They want to provide the best care they can to support you in your physical recovery.  They are not waitresses, entertainment for your kids, or even your personal, private nurse. You are one of many, and she is literally running her butt off to get everything done in a day for all of her patients.  Make your needs known, but understand that ‘wants’ aren’t the same thing.  And don’t ding her on the satisfaction survey unless there is a serious, health-altering snafu that she does... lukewarm coffee won’t affect your longevity.  Look at the bigger picture.  And know that’s what she does every time she comes to work- for several patients.  You are a part of her overall picture, and she’s generally doing the very best she can to take care of you.