Remembering Peeps and Mom

Mom loved Peeps

Mom loved Peeps

This week will mark the 10th anniversary of my mom’s death.  It really was a miracle that she lived as long as she did, considering bilateral breast cancer (one side was actually ‘pre-cancerous’ but required a simple mastectomy, but the other side required a radical mastectomy), metastasis to her right lung, and metastasis to the right side of her brain.  Those are ‘just’ the cancer sites…she also had other cancer-related diagnoses including seizures that started well after her cancer treatment and dementia as a result of brain radiation.  The dementia was the hardest to watch. On March 13, 2003, she died after becoming septic from a urinary tract infection. She couldn’t verbalize symptoms very well, so dad didn’t know how sick she was until she began to have increased seizures and became unconscious during their winter away in Arizona. She had been ‘fine’ the day before, and had been with him at an art gallery.   Mismanagement (neglect) by the emergency room where she had been taken by ambulance (unconscious) took away any chance she may have had (they sent her home when she needed IV antibiotics- not pills and an elderly husband as her only caregiver more than 2000 miles from home)…but dad and I have to look at it this way: at least she didn’t end up in a facility not knowing anybody, and being impossible to care for at home. She survived 17 years after her last cancer diagnosis… I don’t know many people who have survived the all of the various cancers she had, especially back then.  If I remember right, her first breast cancer diagnosis was in 1981.  Things have changed a lot.

My mom and I were never all that close. For decades, I knew she loved me, but didn’t have a clue if she actually liked me. It was a hard way to grow up, especially when I was little.  As I got older (as an adult) and was able to imagine things from a point of view of someone in her situation (she had two newborn baby boys die within two weeks of their birth about 2 years apart  by the time she was about 25 years old), it made more sense that she couldn’t allow herself the luxury of being  vulnerable to more loss.  She was able to convey warmth to her students during the years she taught 2nd grade and later 4th grade and in the resource room at Rockford Christian Elementary School; they weren’t hers to lose; she could risk more of herself… but I never saw that degree of warmth.  I get it now.  She wanted me. She loved me. And she was terrified of losing me (confirmed by her mother).  It’s heartbreaking to look back at what she went through.  As a kid, I didn’t get it.  I just felt like she wanted me out of her way. I’m glad I was able to get past that as an adult, and feel compassion towards her.  She did the best she could most of the time.  I may not understand her reasons for some things, but I think most people do the best with what they are equipped to handle.  Add the loss of two newborns before her brain was even done growing, and more makes sense. That in and of itself would change her brain chemistry.

As mom’s dementia progressed, she had fewer and fewer things that she remembered and gave her some degree of pleasure. She watched the same movies over and over again, since she remembered them (and do NOT call  her while she was watching them, or she’d hang up on  you- something she’d never do in her ‘normal’ years).  She loved sweet stuff, which I’m told isn’t how she was when she was younger. I do remember her liking ‘Fifth Avenue’ candy bars when we went grocery shopping when I was a kid. She also was quite willing to take my Halloween candy leftovers (I didn’t like Baby Ruths, peanut butter taffy, or most marshmallow candy).  All I had to do was sort it, and give her my rejects- and she loved them.  During her dementia years, spice drops (gum drops) and Peeps were favorites. I made sure she had gum drops when she and dad visited me in Texas.

Peeps began making their marshmallow candies for holidays other than Easter, so I’d go to the store the day after holidays and buy mom a bunch of Peeps when they were half-price. They hardly weighed anything, so I’d mail them to her in Illinois from where I was in Texas.  She loved getting those ‘care packages’. Dad, however, was not all that amused by having to police them, since she’d eat them all at once if left alone with them.  This is the guy who would go all over town in July looking for pumpkin pie since mom thought it was Thanksgiving.  With the Peeps, he’d hear “I want some Peeps” multiple times a day until they were gone.  She remembered they were there…

Whenever I see Peeps, I think of her and the simple things that made her happy during her last several years.  As hard as it was to watch her slip away and become someone who was so unlike the ‘normal’ her, it was also so easy to make her happy.  I never felt I could do things ‘good enough’ as a kid- it may sound sappy, but I wanted to do something to make her happy when she had so little of her real self left.  For dad, it was hunting for pumpkin pie (and other goodies) during the off-season for whatever she had in her head that she had to have. For me, especially before I moved back home to help dad take care of her, it was gum drops when they visited, and Peeps to mail to her.  I don’t like Peeps at all.  But they do make me smile when I think of how happy they made her .  🙂

Peeps remind me of my mom

Peeps remind me of my mom

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. 🙂

The Little Things That Made Her Her…

My mom died in March 2003.  She had survived cancer multiple times (breast x 2, lung, brain).  She got through surgeries, chemotherapy, and radiation.  And lived 17 years longer than her last cancer diagnosis.  What was worse than all of that was the dementia caused by the radiation to her brain.  It sucked the life out of her one cell at a time.  For over ten years.

When dad was going through her clothing to decide what was going to be donated to charity thrift stores, he had me come over to be sure there wasn’t anything I wanted.  I was fairly certain I could go on with life not owning her socks. There were very few items I wanted- the Christmas sweater she wore so much when I first moved back, and some goofy shoelaces she got at the San Diego Zoo.  That was pretty much it. In her ‘normal’ state, she never would have worn goofy shoelaces.  She could be a bit on the prissy side, and only pricey name brand shoes with the shoelaces they came with would do.

Dad and I were getting to the end of the stuff he wanted to go through, and we came across a rather dull shoebox.  I opened the lid, and that’s when I lost it.  Inside, her  hairbrush and make-up case (still with the make-up she hadn’t worn for years in it) were like a time capsule.  Dad did a good job of keeping her clean and dressed, but in mom’s ‘normal’ days, she had herself put together  from head to toe.  Her hair was perfect, and she always had make-up on in just the right amount.  I couldn’t let go of that make-up case or hairbrush.

Some of the things mom did when she was demented were SO unlike her.  She had always been so mannerly and socially proper.  With the dementia, she was clueless. She’d munch on the shrimp ring at holiday events as if it were for one person- HER !  When she’d get done on the bedside commode, she didn’t wash her hands unless she was told to and given the supplies. She had no problem immediately reaching  for the gumdrop jar I kept for her when she and dad visited. If  dad couldn’t get to her fast enough,  she’d be happily munching on gumdrops.  She was generous however, and would offer those gumdrops to me after her unwashed hands had been wandering through them.  “No thanks, Mom- I’m good.  You can have them…”.  I’m so glad she didn’t know how far she’d sunk.  It would have finished her.  The disease was making a mockery of her former self.

She never left her bedroom (with adjacent bathroom) in the morning without putting on her make-up and doing her hair the way she wanted it to look.  I don’t remember her ever having breakfast in her robe. She was always dressed and ‘made up’.

I’ve still got those personal things in that shoebox, along with assorted sympathy cards and things from the memorial service.   I never had any real use for them, but they represented what she’d been like.  They gave me back a piece of who she was before dementia took one piece of her at a time, over a year at  a time until she no longer was who she had been.  In many ways, the mom I knew was never going to leave that box.  So I had to keep it.

Mom’s Final Days…Please Excuse Me While I Bawl My Eyes Out

This is still rough.  And yes, it’s long.

Mom had been through so much, and survived.  She had been through breast cancer, pre-cancerous tumors in the other breast (so bilateral mastectomies when all was said and done), reconstruction, metastasis to her right lung (so part of her lung removed), and then metastasis to her brain (so removal of a right frontal brain tumor, roughly the size of a golf ball). In the mix, she’d also had a hysterectomy, gallbladder removal,  and ankle surgery (she fell and broke it in the bathroom).   There were countless hospitalizations, radiation, chemotherapy, rehab, and progressive decline.

By March 2003, mom had been cancer free for 17 years.  Considering the number of sites  where she’d had it , that’s pretty amazing.  But the radiation for the brain cancer had left her with dementia.  Bottom line- she was goofy. Her memory was horrible.  She could still answer simple questions, and liked going out on rides in the car. She still had some things she enjoyed (if it came in the form of a candy bar, so much the better).  The day before she ended up in the emergency room in Sun City West, AZ, she had been to an art opening and visited with friends.  She may have had no memory of it later that day, but for the moment, she was happy.

Dad called me one afternoon to tell me something was wrong. She just wasn’t  right. Something had ‘dulled’.  I told him she may have had a seizure and to keep an eye on her. If he saw a seizure, dial 911.  I got a call not long after that from him; they were in the ER at Sun City West Hospital.  She’d had a seizure, vomited, and then been out cold when 911 got there.  He sounded scared, and he never sounded scared with all she’d been through before this.  I told him to call me with any updates.  I was near Chicago, so really depending on his reports.  I felt helpless.  I’m an RN.  I want to help ‘fix’ things when family and friends are sick.

He called me  a while later saying that they couldn’t get blood from her to do tests. Huh? This made no sense; they’d gotten an IV in her and had fluids going. Her urine test showed an infection. With the change in her normal behavior and the positive urine test, that told me she was septic. That is basic, BASIC knowledge in the medical field, especially with older patients.  I told him to tell them that they needed to restrain her, and get the blood. They refused to use restraints even briefly- so did an incomplete workup for their convenience.   We exchanged a few more phone calls (me getting more and more angry), and the bottom line was they were sending her HOME with him on oral antibiotics (well, their rental home).  A partially conscious woman with a urinary tract infection bad enough to make her lose consciousness and seize, and she was being sent home.  I was beyond livid.  Dad was terrified.  It took three people to get her into the car (a clue?), and he had to get help from friends on the other end to get her to bed.  Somewhere along the line, they got the antibiotic pills.

I’ll never believe that the ER people did what they needed to do because mom had dementia and was a ‘no-code’ (but she wasn’t actively dying yet; the no-code was not in effect).  And the hospital was full (like they couldn’t move her to another hospital; she NEEDED IV antibiotics and fluids).  The doctor signed off that she was safe to fly later on… that’s nuts, but she’d be out of his hair.  I’ll never know if it would have made a difference.  I just wanted her to have a chance. As it ended up, dad and I have to look at the one positive: she didn’t end up curled up in a nursing home, not knowing anybody or anything.

Over the next few days, dad came up with various ideas on how to get her home. She was taking the crushed pills in applesauce, and when I’d talked to her, she sounded exhausted but was answering the usual basic questions. She was doing better- but not great.  I didn’t know exactly how badly her body was doing, but I knew I supported dad’s plan to get her home.  Except the plan to drive her home.  I had visions of her dying en route, him being arrested for transporting a body, and mom left in the car in some car impound area…. sometimes an imagination is a bad thing.  I made him  promise me NO DRIVING HOME. He promised.  The final option was for her to fly to O’Hare where a friend of dad’s would drive me in with his van so we could let mom lie down in the back while he drove us back home. Dad would then drive on his own, and be back in about three days.  When I talked to her, I was satisfied that she was ‘back’ enough to be near her baseline.

Well, part of that worked out.  Dad got to Sky Harbor Airport in Phoenix, and the folks at American Airlines said she could fly, but only if he was with her.  He left everything but what he was wearing and got on the plane with her.  A few hours later, they were in Chicago.  I was allowed past the security gates to help get her off of the plane. The folks at American Airlines were wonderful. Her wheelchair was waiting (as were a few others- must have been handicapped day for flying), and the flight attendants said “Oh, you must be J”…. Uh, yeah?  Mom  smiled when she saw me, and we got her into her chair, and headed for the van.

When we got to the van, it’s like mom knew she was near home, and partially collapsed. She didn’t have to fight. I was getting nervous that we wouldn’t make it back home to the hospital where her doctor practiced. (why do they call it ‘practice’?  Shouldn’t they ‘know’ at that point?) I’d brought a blanket to use as a sling to ‘arrange her’ in the back of the van- which dad’s friend helped me do while dad put the wheelchair in the way back part of the van.  Dad was muttering about getting her home to bed, and after a good night’s sleep, she’d be fine.  I looked at dad’s friend, and shook my head no.  We weren’t going home. We were going to the ER.  If I had to get out at some toll booth area, and do some psycho dance, we were NOT going home.

Mom moaned most of the way back to our home town. Somewhere along the way, dad knew that we needed to go to the ER (thank God).  We got her there, moved to a stretcher from the parking lot, and thus began the end.  The ER people knew by looking at her that she was going to be admitted, and when they started an IV, they got blood.  Hear that, Sun City West ‘Hospital’???  It was BAD.  She was septic (duh) and her kidneys were failing. She also had a high blood sugar (she wasn’t diabetic and not on steroids).  She did know the name of her doctor when he came in to see her.  Dad and I stepped out into the hall with him and one of his first questions was about resuscitation measures that we wanted.   We’d discussed this before. If it got to this point, comfort was the primary issue.  It was fine to do fluids and antibiotics in this situation since she was in and out of lucidity, and she theoretically could get better…but her kidneys had never looked this cruddy. She was dying. The blood sugar issue wasn’t helping anything. Her white blood count wasn’t good.  We decided to get her admitted, see her through that and then go home to bed since she was relatively stable.

I’ve seen so many people die I’ve lost count.  That sounds rather cold, but as an RN of 18 years at that point, it just wasn’t possible to remember them all.  I knew the signs. I was seeing some of them, but I was still in and out of denial.  I felt OK going home that night though.  Dad and I told the nurses to call us if anything changed; we lived about 5 minutes away. We went home. She was awake, and tired, but looked ‘settled’.

The next morning, mom was getting the last part of her bath when we first got there, so we waited in the hall for a few minutes.  When we went in, she was awake, and recognized us. She was even drinking some nutritional juice-type drink (not the milky based stuff). She’d had a seizure during the night, and got some IV medication for that, but was doing a bit better. The nurses were wonderful about letting me see her lab work, and her white count was down, mostly from being diluted somewhat from the IV fluids. It was still in the septic range, and her kidney function was still in the ‘not-going-to-get-better’ range.  But she looked a bit perkier.  That was nice for the moment.

At lunch, dad’s friend (who did the van driving the day before) had offered to fly to Phoenix, and get the stuff from the rental house. He then offered to drive the car back to the Chicago area.  Wow.  We all went to the hospital cafeteria to talk about the plans.

We got back to mom’s room about an hour after we’d gone to the cafeteria, and there had been a huge change.  She was beginning to mottle, and was groggy. I’d seen that  mottling SO many times, and that is one of the things that people don’t come back from.  It’s when the circulation starts to shut down, and blotchy dark purplish-blue areas are visible.  Hers had reached her knees.  I ‘knew’.  I told dad that if he wanted to tell her anything he needed to get after it; she was dying. He figured she’d be fine (after all, she always got better, right?), but must have sensed something about my reaction. He asked me to step out for a few minutes. I did.   She was quickly going into a coma, and even at that point, I’m not sure how much she was hearing.  But it wasn’t just for her. I wanted HIM to have closure.  Then I took my turn.

During that afternoon, she went deeper into the coma, and I’d let her nearby brother know earlier that if he wanted to come, it was probably better to do so sooner rather than later; he and my aunt and cousin came.  I was also in contact with mom’s other brother, and only sister.  Mom’s mother was on her way back from  the winter in Florida and with the brother in Tennessee.  They were making plans to drive up here (near Grandma’s home also).  Her sister was looking for a flight ASAP.  A very few family friends also came; we didn’t make it broadly known what was going on.

Mom never regained consciousness, and I decided to spend the night at the hospital. She couldn’t tell anybody what was going on, and I wanted to keep track of how hard her breathing was (or wasn’t), and if she showed any signs of pain.  It was a long night. She did start having some respiratory patterns and sounds that indicated she was having a bit of trouble. I asked for some medication to be ordered, and the nurses were great about contacting the doctor (at about 3:00 a.m.) and getting her something. That helped her breathing ease up.

That was the same night Elizabeth Smart was found alive in Utah.  I’ll never forget that. One family was welcoming someone back home, and I was watching someone leave this earth.  I still remember that so clearly. CNN was all over it.  Mom would moan occasionally, so I’d move the chair closer to the bed and hold her hand and talk to her. I also let her know (whatever she could hear and  understand) that dad and I would be OK. If she wanted to keep fighting and come home, that was great!  We wanted her with us- but if she was just so tired of fighting all of the medical stuff she’d had go on over 20+ years, it was OK to stop, and  let go.  I also let her know that whatever had gone on in our relationship, everything was OK.  We were good.  It’s important to let folks know that the living will be OK, and give them ‘permission’ to be free.

She made it through the night, and remained in a coma.  Dad came back up in the morning, and we both stayed during the day.  Another couple of friends came by, but mostly we answered the phone calls, and just talked to each other.  Mom would only respond to discomfort, so we let her be.  I did agree to the air mattress the night before to make her skin less likely to break down- nobody knew how long this was going to go on (though the mottling is not generally something that happens until near the very end).  By that morning, her blood pressure was so low they needed an ultrasound gizmo to check it- so we didn’t bother with that other than once a shift.  The blood sugar wasn’t going to get fixed- so no point in making her wince and groan with each fingerstick and insulin shot; they weren’t doing much good anyway.  Had she shown signs that she was going to get better, I would have agreed to those things. At that point, it was just pain. She had no periods of even being remotely awake, and the mottling was getting darker.  She needed peace and comfort.

Dad’s friend had made it to Phoenix, and found the obituary mom had written for herself many years earlier, and left in her address book. He faxed it to his wife, who brought it to the hospital for us to have handy.  That was a huge help.

I was so torn about what to do that night. I didn’t want her to be alone, and dad wasn’t up for pulling an all-nighter (understandably at age 70).  I needed to get some rest if I was going to work the next night at 7 p.m.  But I really didn’t want her to be alone. The nurses were great, but it’s not the same as having someone next to the bed, watching.  I finally had to make the decision that I’d have to go home that night so I’d be OK to work the following night.  I hated that.  Dad knew I was struggling with that, but we knew that we could both be at her bedside within 10 minutes of getting a call from her nurse.  And we told the nurses to call for anything.  Anything.

Around 8:30 p.m. or so, her breathing got funky.  Like ‘here it comes’ kind of funky, but also somewhat labored, so I asked for the medication for her breathing to be more comfortable.  The nurse gave it, and it did help. Her breathing became less gravelly. (She didn’t have the ‘rattle’; it was different). At about 8:55 p.m., her breathing became sporadic, and I told dad this was the last pattern I usually saw ‘at the end’.  He was still hanging on to the idea that his partner of 46 years was just going through a rough patch and would recover.     I told him no. This was it.  And it was fast. Really fast when it finally happened.

At 9:00 p.m. my mom took her last breath. She was gone.  Dad and I were on either side of the bed, holding her hands. She wasn’t alone. She didn’t have any more pain or confinement to a body and mind that had been ravaged by disease and the effects of radiation.  She was free.  There was a brief moment a couple of seconds after she died when she looked like she had 30 years earlier.  I don’t know if my fatigue was making my vision wacky, or what- but I saw my mom. The one I’d known before anything was medically wrong with her.  She was at peace. I’d like to think that’s when she saw Heaven, and the Lord she loved so much.  She finally got to see the two baby boys that had each died soon after being born, that she’d never seen in life.  She wasn’t held back by anything.

On March 13, 2003, she was healed.

ROFL at Dementia…or Die Crying

My mom ended up with dementia as a result of radiation for brain cancer. She had the tumor surgically removed, but they wanted to zap the surrounding area a bit to make sure they nuked everything that might cause trouble later.  Seems nuking a brain doesn’t always go without issues.  I was 1200+ miles away, but saw her nearly every Christmas when she and dad came to visit me en route to their winters away from the Midwest. Sometimes the changes were very noticeable.  Mostly, I heard things over the phone; we talked often.

I remember a brief period of time when she knew she was starting to decline. That was terribly sad. She’d tell me “I don’t remember things as well anymore”.  She started labeling things, and even wrote her own obituary; she knew she wouldn’t be able  for much longer. It was heartbreaking. I’d been an RN for many years at that point.  I knew what was coming.  It didn’t really take that long for her memory to be unreliable for current things. She still remembered the past fairly well, so we talked about that.  I’d ask her questions about recent events now and then to assess where she was in the progression of the dementia. If I got too inquisitive, she’d ask to talk to the dog. Literally.  SO, I’d put the phone to the dog’s ear, and get the dog to ‘talk’. That would make mom happy.  She loved her ‘granddogger’.  She thought it was a riot when Hannah (dog) would howl if I said “woof”, or “bow wow”.  That was the cue for showtime. Mom loved that. And it got her out of answering my questions.  The dog was ‘safe’.

Mom went through the usual memory issues, and then her judgement got weird. Normally, before dementia, mom was very polite and had great manners- sometimes even a bit prissy. Not with dementia !  She was generally agreeable, but it was better not to tell her ahead of time if she was going to get out of the car on outings. For a long time, she preferred to sit in the car and wait for dad- doing word find games or reading when she still was able.  But then the dislike for doing anything unfamiliar started. On one Christmas trip to see me, we went to a nice little town known for their antiques, and a little town diner that had great bread pudding (I’m told; I hate the stuff).  SO, Dad and I got her into the wheelchair and got ready to move the chair up the three steps into the restaurant. Other patrons were immediately helping with the door, and before she could get too bent out of shape, she was sitting at the table.  If we would have told her ahead of time, there would have been all sorts of wailing and gnashing of teeth.

She was wheelchair bound except for a few steps, but would order the buffet at a restaurant… like the buffet fairy was going to whisk it tableside for her.  Dad went and got her what he figured she’d like, as many times as she wanted (she wasn’t a big eater, so it wasn’t more than one refill- usually of something starchy).  He and I, with our stable feet, would order the sit-down stuff.  But, mom would be happy.  He did all he could to make every day something that was as pleasant, and pleasing, as possible.  Her last years were one long, huge gift from him.  There weren’t many days when he didn’t at least get her out for a ride, even if just to some random place, and home again.  He didn’t let her just ‘sit’.

Dad took most things in stride. He’d been through a lot with mom, and figured they’d just get through whatever came along.  He called me one day in a moderate panic.  “I don’t know what I’m going to do with your mother”.  Uh oh. She was “MY mother”…. that couldn’t be good.  I asked him what was going on.  Seems that whenever a telemarketer called, she’d say “yes” to whatever they were peddling.  Anything.  Stuff started showing up on the doorstep that was baffling him.  When he asked her, somehow he got an answer that involved some “nice person on the phone”.  Oy.  I suggested unplugging the phone when he ran to the store, or some other brief outing. She couldn’t use the phone any longer, but he didn’t like that idea; he wanted to be able to call her. She wasn’t one to get up on her own, and wasn’t able to wander, so he could get out for up to a couple of hours if he popped in a movie, and helped her to the bathroom before he left; it was their system, and it worked for them.  Anyway, he ended up getting a Tele-Zapper, and calling the various vendors of the stuff that showed up; they were understanding and cancelled any subscriptions, and accepted returns of any items.

And don’t call her during a movie.  If dad had put a movie in for her before stepping out for a bit, and mom got a call, she’d say “I’m watching a movie. I can’t talk.”   Click.  Dial tone.  Manners?  Zippo.  It would be a movie she’d seen about a bazillion times, but it was all semi-new to her.  She especially liked “The Cutting Edge” skating movie.  I used to skate, and she took me to lessons.  The town they lived in was a big winter sports area, and skating had always been part of the local culture.  She used to sew costumes for local skaters when I was little.  She made my little skating skirts when I was four years old.

Thanksgiving often occurred repeatedly in June or July.  Instead of trying to force her memory into reality, Dad went looking for pumpkin pie.  It might take  3-4 stores, but he’d get it, and make her happy.  She’d be clueless a couple of hours later at most, but he didn’t ever want to be ‘mean’ to her.

One trip to some 5-star resort in the Phoenix area got a bit awkward.  After finishing lunch, dad went to wash his hands. When he got back to the table, the head waiter and some guy with a tray of chocolate and bottle of champagne were talking to mom.  What now? The head  guy then congratulated dad on his anniversary (this was in February; their anniversary was in August).  They left the chocolate and champagne (which mom couldn’t have with her seizure medication), and left.  He called me and asked me what he should have done; he didn’t want to embarrass mom.  I told him just don’t show up again at that place for another year. They’d already left the stuff at the table; it wasn’t usable for anyone else at that point.

When the seizures started, dad was dumbfounded at the weird behavior mom displayed. One night he called me all upset. “She’s speaking in tongues again” he half hollered.  Huh?  We’d all gone to the same church since I was a baby, and while they believed in tongues, it wasn’t a holy roller tongue-speaking crowd. Clapping was considered a rousing expression of appreciation.  (Swedes, ya know!). And ‘again’ meant she’d done this before.   He put her on the phone.  She was making NO sense.  He got back on the phone and said she was also taking her clothes off.  MY MOM?  Stripping for the heck of it?  Something was wrong.  I told him I thought she was having temporal lobe or frontal lobe seizures, and he needed to take her to the ER.  I didn’t know how long it would last, and with her history of the right frontal brain tumor, this needed to be checked.  So he got some friends to help load her in the car, and off they went. She was admitted, and started on seizure medication.  The ‘religious’ outbursts stopped.

The dementia progressed, and every Christmas I’d see the latest level of decline.  She could still talk, but her memory was shot.  She transposed past familiar places into the city we would be passing through.  “Where is the Talcott building?”.  Well, gee mom, about 1200 miles northeast of here…. but I couldn’t just say that; she still had feelings, and now and then would feel badly if she was ‘wrong’.

I had decided to move back home to help dad take care of her. He was so adamant about not putting her in a nursing home, even though she was a full-time job.  He wanted to be the one taking care of her.  I didn’t want him to be alone in that.  One of the last things I remember about her  was him calling me to come and “look at your mother”.  When I went upstairs and went to the bedroom where she was sitting in her favorite chair, I had to keep myself from cracking up.  She had put her wig on backwards, and it looked like a fuzzy ski jump hanging over her nose.  I asked her if she was coming or going. She said “It’s really on backwards? He’s not messing with me?”.  I assured her it was indeed on backwards.  She fixed it. Sort of.

They went on their planned 3-month trip to the Phoenix area for the winter. I was staying in their house as I got used to being back in my hometown (a big adjustment from the friendly South).  I had no idea what was going to transpire towards the end of that three month trip.  That’s for another post.  But I will always remember that dealing with dementia is a very difficult process.  Without some humor, it would be soul consuming.

Why Work At A Nursing Home…

If you work at a nice one, there’s no reason not to work at a nursing home. I’ve heard the slams by non-nursing home nurses over the years that somehow nursing home nurses are the bottom of the barrel, but I’ve found this to be quite untrue.  Different types of nursing require different skill sets, and nursing  homes often deal with many specialties under one roof.  There is always the physical maintenance of chronically ill and dependent (in some form) patients. The knowledge of medications is extensive.  Nursing home nurses must be able to deal with psychiatric issues, and know the most effective ways of handling them.  There are always the emergency issues that require adequate assessment to get the resident the proper level of care. Wound care is critical- from surgical wounds to superficial skin tears that are so common in fragile elderly skin.  The nursing home nurse has to be very familiar with various hoses and tubes, and how to keep them functioning.  And then, there are the family dynamic issues that can change on a dime with any one of the nursing home nurses’ typical 15-30 patients and their families.  Time management is crucial.

Then there is the fun part of nursing homes.  I’ve been fortunate to work at some great facilities over the years. My first job out of nursing school was at a facility where I’d done staff relief work as a CNA.  When I started my nursing career there, I was the only RN educated person in the building most shifts I worked.  The ADON (Assistant Director of Nurses) was there until 4-5 p.m. when I worked 3-11 p.m., but otherwise I was in charge- without a license.  I was a GN (Graduate Nurse), and since I had access to an RN 24/7 it was kosher back in 1985 in Illinois. Now, I think that’s nuts.  Fortunately, I’m not so stupid that I didn’t realize what I didn’t know, so was very good at asking questions.  I was typically responsible for 30 heavy care and/or Medicare patients on 3-11 p.m. AND another 30 dementia patients when I worked 11 p.m.-7 a.m. – my actual shift.  I did a lot of double shifts.  That’s how things were done back then. I was 21 years old.

I mentioned ‘fun’.  I had some very entertaining residents.  Most were out to lunch in a very sweet way.  Those were the days of ‘reality orientation’ which is actually quite cruel. It attempted to ‘make’ the demented person come back to the right year and place, and it might have lasted about 3 seconds, and then they were still confused and unhappy again.  Things moved to ‘validation’ some years later (I started using it as the result of frustration… when in Rome…) which didn’t lie to the resident, but acknowledged where they were in their heads.   They weren’t going to be ‘fixed’. Dementia is progressive.  Let them be in 1954.

One of my little ladies wanted to call her mother every night before bed.  This lady was about 89 years old, which in a generous ‘young’ estimation made her mother at least 107. Uh huh. I was still in reality orientation mode, and asked this lady how old her mother was.  She gave me some age that was younger than she was.  This wasn’t going well.  I asked her how old she was. She gave me some number younger than what she said her mother was (well, at least she was keeping up with the story she was sticking to).  This went on for about 2-3 minutes. Finally, I unplugged the phone, put it on the counter, and she called her mother, said “Thank you”, and went to bed.   After that night, we bypassed the inquisition.  She was happy.

Then there was this skinny little man who tooled around in his wheelchair wearing a hat with his name on it.  Going by the nurses station counter, all I’d see is the hat scooting along on the other side .  “Max” was toothless, clueless, and so sweet. He also had an irresistable dopey, toothless grin.   He  was about 5 foot 5 inches, and probably weighed 85 pounds dripping wet.  And he was quite a character.  One day, he came up to the station in his chair, and stopped.  I saw the “Max” hat, parked in front of me. I heard his gravely, soft voice saying “Hey! I want a cigarette.”  Max didn’t smoke. Hadn’t for decades.  I told him “Hey, Max, you stopped smoking 30 years ago.”  He replied “Oh yeah”, and left.  We went through that routine often.  Another night, all hell was breaking loose with numerous patients having to go to the hospital for various reasons. I had ambulance crews coming from all directions at various intervals. While I was waiting for another crew, I was on my way down the hall to see the sick resident when I saw Max walking towards me, naked as a newborn, with his catheter disconnected from the bag, swinging like a pendulum as he took each step.  Max was about as stable on his feet as  a greased pig on glass. The naked part was just not pretty, and with an ambulance crew now in the building and heading towards me, I had to get Max covered up (and keep him from falling on his tail). Too late. One of the ambulance guys looked at me in horror and said “Tell me we’re not here for him” (or something close).  I told them which resident to get, and went to wrap Max in a sheet as I guided his skinny butt back to bed.

Another night, Max’s catheter was clogged, and no amount of irrigating it worked. I had standing orders to change out catheters as needed (we used a lot of catheters back then), but I couldn’t get the balloon deflated. This was a problem.  The catheter was stuck.  I could feel poor Max’s distended bladder against his skinny skin, and knew he had to be miserable.  SO, I called the doctor and explained the situation. He told me I could send him to the ER to get it removed, or do the same thing at the nursing home that the ER would do. I was young and game for a new task, so asked what that involved. He told me that I needed to keep injecting air into the balloon port until the thing blew up.  Uh huh.  Alrighty then.  Well, if that’s what the ER would do, it sure would save  Max a trip to the ER, and me a lot of paperwork to just get it over with.  I got a 60cc syringe with the proper tip, and went to work.  The first  60 ccs went in with no change. Max wasn’t reacting, so I figured it wasn’t bothering him. The second 60ccs also went in with no change. I was getting nervous. The balloon was 30cc and already full of sterile water before I started in with the air.  About halfway through the third syringeful of air, I heard a pop, Max went “Ooh”, and the catheter shot out of him like the bullet from a military assault rifle, shooting pee on the wall about 6 feet from where it was coming from… OK, well, that worked!  I replaced the catheter, and Max went to sleep, much more comfortable.  Now we have bladder scanners that would have told me how much ‘room’ I had before blowing up the bladder was a major concern.

Another resident in that facility was a former missionary. She was now way out to lunch, and had some big issues with her feet that made them look ‘clubbed’. Normally, she rode around in a wheelchair, but with her bedtime routine, she could walk to the bathroom with guidance, and get some exercise while she got set for bed.  She’d go to the bathroom, wash her hands and face, and uncerimoniously hand her dentures to whoever was helping her. Then she’d toddle back to bed, climb in, sit bolt upright, and recite the 23rd Psalm. When she was done, she’d look towards the door (her vision wasn’t so great), salute, and say “Goodnight Everybody”, and lie down.  Every night!

These are just a few examples from one place I worked.  Yes, it was hard work. I had a lot of medications to pass, treatments to do, and paperwork (with a real pen and paper!) to get done on each shift. But the residents were great.  Well, most of them. But if being there and taking care of them meant that even one or two felt better, that was worth something.  I got a lot of great skills for a new grad.  By the time I went to work in a hospital some 8 months later, I could deal with stuck tubes, time management, and  brand-generic medication names with the best of them.  I loved the nursing homes I worked in, because I worked in great facilities. Had I worked in a pit (and I’d seen some as an agency CNA), I’d feel differently- but I never made the choice to settle for those. 🙂