The End of Life As I Knew It

Nine years ago, on April 6, 2004, life as I knew it stopped.  It was my last day working as a full time registered nurse because of medical disability. I tried to go back to work a few months later, but it was a total failure, even though I was working back into full time hours slowly. My body was broken.  There was nothing to do to fix it.  I entered a world I didn’t really  understand- that of being useless and having no obvious purpose. My life since the age of 21 had been about being an RN (I graduated from nursing school in May 1985).  I had worked so many overtime hours and holidays because I enjoyed working.  And then it was gone.

I’m not sure when the medical problems ‘officially’ started, but I know when they got bad.  About 5 months after moving back to the midwest from Texas, and being subjected to indoor heat, the symptoms of my dysautonomia became severe enough to cause me to start having heart rate and blood pressure episodes that made working impossible at times. Then, over the next 10-11 months, it got to the point  of being totally unable to work.  I’d pass out if I got overheated, and that didn’t have to be all that warm- most people found themselves comfortable when I was turning beet red and feeling like I was going to faint.  Then there were the seizures.  Later, it was discovered that they are more likely to start at the beginning of sleep cycles…but that could be at the beginning of blood sugar fatigue, as well as the deep sleep I’d end up in after one of the dysautonomia episodes. It was a mess to sort out.  My boss and co-workers told me what they’d seen, which helped the doctors at the time.

My employer had started sending me to the emergency room by ambulance when I was found unconscious or seen seizing or collapsing. I was a liability.  It got to be a routine occurrence.  I was sent out more than the elderly residents at the nursing home where I worked (like a dozen times in the last 2 months I was there).  I remember none of the ambulance trips, but I do remember a lot of abusive ER nurses and docs when I would ‘come to’, who thought I was a low-life ‘frequent flyer’. They never stopped to realize that I hadn’t sent myself to the ER- I’d been sent.  ER personnel like to fix things. I couldn’t be fixed, so they took it out on me with name calling and general ‘disgust’ when they interacted with me. There was a rare ‘nice’ doctor or nurse, but I began to dread waking up in the ER.  It got worse before it got better (I found a different ER).

Those initial months and then years of not working were really difficult. In addition to the neurological disorders, I was having drug interactions that dropped my blood pressure low enough to cause small strokes.  It wasn’t uncommon to have a blood pressure in the 40-50/20-30 range.  I was usually still conscious but definitely feeling very unwell.  It was scary.  I eventually figured out a way to put a thin feeding tube in my own nose to put Gatorade through, in order to increase my blood pressure with fluid volume.  It beat going to the ER.  There were also the times when the dysautonomia kicked in and my pulse and blood pressure would go nuts on their own.  I was so frustrated that I couldn’t just ‘make myself’ do things that used to be so normal.  Like work.  Or go out in public, where the thermostats were out of my control. Now, I’m pretty much homebound, aside from monthly trips to the grocery store or MD appointments. I have as much as possible delivered.  It’s just too painful and risky to do much away from home.

It took many years to work through the shock of being unable to work.  I kept thinking I just had to ‘make’ myself well enough.  But I was having trouble doing basic things around home.  My world shrunk to that of my apartment and the monthly trip to the grocery store, or doctors’ appointments.  At the time, I had nobody to socialize with; I had no friends here.  I also didn’t have online access to most people I’d known in Texas, and none with people here.  I had my dog- and she was so important. I also had regular contact with my dad. But nothing with anybody who understood being a nurse, or being disabled.

Things are getting progressively worse when it comes to ‘normal’ activities. I just took the trash to the dumpster (about 12-15 yards away), and am now in considerable pain.  Pain is a trigger for the dysautonomia (along with heat), so I need to get more comfortable to prevent my blood pressure from crashing.  It’s very frustrating to feel like such a ‘wimp’  with normal activities.  Making lunch is also painful.  I have ‘grab and go’ foods as much as possible.   When I have ‘good’ days, I’ll make tuna salad- and then hurt.  I keep trying to do things, and it’s harder and harder.  I don’t know what sort of future I’ll have.  I am trying to find ways just to  make things work here, so I don’t end up needing assisted living anytime soon.  I want to be independent. It’s hard to accept help.  I don’t want to be a ‘whiner’ or not do as much as I can… but when I do, I always end up in a lot of pain, and often pre-syncopal.  I turned the air conditioner on about a week ago, when the night temps were in the 20s, but daytime temps were over 40.  It’s a matter of just being able to survive being at home.

I think about my old life a lot.  I miss working as a nurse. I keep my license active so I don’t have to say I ‘was’ a nurse.  I still am a nurse- unable to work as one, but I’m still a ‘real’ nurse.  Many things have changed in the nine years I’ve been disabled. But there are core nursing things that I still remember. I remember some of the patients  I took care of, and many of the other nurses and personnel I worked with. Those are good memories.  I’m glad I have them.

To those who think it can never happen to them…. you never know what life is going to hand you, or what challenges may come  your way.  Get disability insurance whenever you can.  It can make the difference between living in a decent place, or barely making it at all.  Take time to enjoy things, and don’t work ALL the time.  Jump on all opportunities to experience all you can.  Don’t create regrets.  Do make time to nurture friendships that will last.  Don’t let horrible experiences create limitations that don’t have to be there.  Live as much as you can !


Dementia Wins By A Landslide !

I worked in various nursing homes during the years I worked as an RN, starting in 1985.  I worked as a ‘floor’ nurse, charge nurse, supervisor, and administrative (desk) nurse.  Nursing homes really are quite delightful places to work, and while nursing home nurses are often looked down upon by hospital nurses (I’ve done that kind of nursing too), the skill set required is extensive.  They have to have a bit of knowledge about all medical specialties (except obstetrics, though one gentleman did scream that he was giving birth to a calf in an emergent situation…my guess is that most people in a 3-4 block area knew of his distress; his doc felt that Haldol was a good ‘post-partum’ drug… I don’t like Haldol for the elderly; it was designed for schizophrenics- but it did quiet him down).  There are the medical issues that put people in nursing homes to begin with, and then there are those folks with dementia who can be so totally heartbreaking to watch…or a source of some humor. If we didn’t chuckle, we’d weep.  The following are from some decades ago… some of the rules were a bit ‘different’ back then, though nobody ever did anything to make the situation worse.

One woman I remember was very distinguished in her outward appearance. She was always ‘put together’ in how she dressed and in her appropriate greetings of people she met in the halls, but had no clue about hygiene or changing her clothes regularly.  Usually the certified nursing assistants (CNAs) could get almost every resident into the shower without too much hassle, but this lady was persistent in her refusal.  Nursing home residents have the right to be sloppy…when they are coherent enough to know the risk/benefit of their decisions.  When a green cloud follows them, and people fall like dominoes in their wake, something has to be done.  That’s when the administrative nurses have to jump in and figure something out.

The first thing to do was notify the family and get their permission to bathe Mrs. Cloud, even if she refused. They were the legal guardians since she couldn’t make decisions, so that wasn’t hard- they were thankful we were looking out for her (they were also out of town, so couldn’t be ‘hands-on’). The next thing to do was to figure out a plan.  The assistant director of nurses (ADON) and I were the ones who somehow got blessed with this task assignment, and thought we had a pretty good idea of how to get the job done. We got Mrs. Cloud into her private room, and carried on some generic, though tangential conversations as we got her overcoat off, and then talked about getting her clothes washed (that was usually less threatening than actually talking about showers up front).  OY.  We got the coat. We were doing pretty well with the dress, but getting down to her slip, and undies, we noticed that she had about 4 pairs of caked-on pantyhose. Each of those pantyhose required getting Mrs. Cloud back on her bed, ‘scootching’ the hose down, and then removing them…. x 4. Between each ‘scootch’, she’d bolt up and try to run off, so we’d have to get her seated again, then lying back on the bed so we could continue ‘scootching’.   The ADON and I were sweating by the time that was over.  The slip, bra, and undies were a piece of cake after the pantyhose circus.

So, we get Mrs. Cloud into her shower- after all, if we’re going to clean her clothes, why not get a nice warm shower (sounded like a good line)… she wasn’t happy, but went for it. We had the towels and washcloths ready. But…. oops. I forgot the body wash.  The  poor ADON was left wrangling Mrs. Cloud in the shower as I sped out of the room to find body wash.  I found what we needed, and we finished the shower from hell with no casualties.  A few minutes later, I saw Mrs. Cloud in the hallway, all fresh and sans cloud-o-funk, and she greeted me as if she’d never seen me before- very polite with a superficial smile. She remembered nothing. Crickets.

I also worked ‘the floor’ at night for a while.  One night, another confused little lady was wandering in a sort of frenzy, and was visibly tired. She had a sleeping pill ordered, so I offered her one. She wouldn’t take it.  I opened up the capsule, and mixed it with a tablespoon of orange juice in a one ounce plastic ‘shot glass’ medicine cup. I offered her a little nightcap, and she was so happy to take it.  I had poured some plain orange juice to get rid of any funky taste in her mouth, and she looked at me- dead serious- and said “Oh, Honey- I can only have one”.  She traipsed off to bed and finally got some sleep.

Another night, I was doing my routine work on the 11-7 shift, and one of the CNAs comes flying up the hallway off  one of the ‘pods’ (a grouping of rooms), calling my name as if she’d just witnessed Jack the Ripper field dressing a dozen deer in the back room.   I immediately went racing down to meet her, and follow her to the room in ‘distress’.  I stopped cold when I saw the elderly gentleman (also confused as all get out) sitting completely naked, bolt upright in his bed, grinning from ear to ear with his sheets and blankets all over the place. He was ‘splashing’ the gel from his gel mattress (as much as someone can splash something with the consistency of applesauce).  He had managed to puncture the mattress (used to protect skin), and had that gunk all over the place. It was hysterical.  I didn’t want to laugh at him, but it was hard to maintain anybody’s dignity at that moment. He was having a ball !  We got him cleaned up, and my only comment to the CNA was the need to differentiate between something that is life-threatening and something that is an inconvenience, but essentially harmless.  We didn’t need blood curdling screams in the middle of the night for a little  gunk on the floor (well, OK, it was a lot of gunk).

We also had a  hoarder.  The facility towels and washcloths, junk- didn’t matter. And she was possessive.  Anybody who went to clear out the stuff for laundry to rewash had to have someone else ‘stand lookout’, or the poor ‘lone’ retriever would be yelled at for a good 3-5 mintues, until the hoarder forgot why she was mad. One afternoon, one of the activity aides found a family of mice (mama and babies….LOTS of babies) living in a leftover popcorn bag (from movie and popcorn day), and a cake in a plastic bakery container that was so old that nobody could figure out the original flavor and/or color.

One of my favorite little ladies was superficially appropriate, but 2-3 minutes into a conversation there was no doubt that some bulbs were dimming. She was generally cheerful, and had a buddy she hung out with. She also was not fond of showers or combing her hair (think Einstein plugged in to a household outlet), but would let me check her skin weekly (per required protocols everyone got weekly skin checks- head to toe). The CNAs and I got into a routine of doing the skin checks in the shower room, and since I needed to see ALL of her skin, she’d agree for the CNAs to ‘hold’ her clothing…funny how the shower would get turned on, and she’d get nice and clean- she was always very agreeable once she felt the warm water. One day before getting showered, she walked past one of the mirrors, and saw herself. She literally gasped loudly and stepped back from her own reflection… she looked at me and asked about a hairbrush.  At least she still knew it was her own reflection- some lost that.

Nursing homes get bad reputations, but there are so many nice ones. I had the chance to work at two that I really liked, each for about 2.5 years.  The residents become like extended family, and some of their families also became part of the daily routine.  I’ve worked with CNAs who have been at the same facility for over 30 years…when offered promotions, they refused, not wanting to leave ‘their’ people. ❤  I’m incredibly thankful for the coworkers and residents I met when I was working at those facilities. 🙂