Patience

One of my favorite, and oldest, little old ladies died recently at the GreatRep (the dementia care facility that I still work part time at).

Patience was seriously a bad-ass. She was the oldest living person I've ever met, at several years past 100. She still walked, fed herself, and talked when she died. She was chronically cranky, hated to get up early in the mornings, so we always let her sleep in and woke her up after everyone else had eaten their breakfasts. She was known for her particular style of combativeness - Patience would grab your scrub top's neckline, haul you in, and scratch the bejesus out of you while she shrieked "ouch! Owww! Hurting me!!".

But that's not all Patience was, of course. She still had a great sense of humor, and often seemed aware that her increasing deafness was a good source of entertainment. One day, in the dining room, she incited a food fight with another resident, a man. When the med tech on duty approached her to redirect her, she said "Patience, you're such a rascal!" and Patience stared at her for a beat, then said "I'm such an asshole?!?" then laughed maniacally.

Patience would constantly sing in a low, grumbling monotone, similar to her speaking voice. Very old songs, like Springtime in the Rockies, or The Battle Hymn of the Republic. She'd also talk out loud, verbalizing her thoughts, which she may or may not have been aware she was doing. If you were walking by her and stopped to say hello, give her a kiss, or wave at her, she'd often mumble "that one smiled. That one smiled. That one was happy." in her repetitive, robotic voice.

My favorite ever moment with Patience was when I was trying to put her to bed one night. She was being very resistive to standing up, not wanting to leave her comfy couch in the living room and walk down to her room. Patience had never had children of her own, but was a devoted aunt whose nieces and nephews still visited her until the end of her life. So, trying a different approach, I said "Auntie Patience, I want to go to bed but I'm scared to walk there by myself. Will you take me?". She grudgingly pulled herself up with her walker and headed to her room with me. She used the bathroom, brushed her teeth, put on her nightgown, and then, to my surprise, plopped down on her coffee table! She leaned back, pointed at the bed, and said, in her deadpan way, "Go ahead. You sleep now, I'll watch you. You go to bed. I'm here." Just thinking about that is enough to make me cry.

It's not often that the staff at a nursing home really loves and adores a combative resident, but we all loved Patience. Who else would repeatedly strip in the common area, to the point we had to go plunk her in her room where the nudity was more appropriate? And then when we checked on her later, we found her wearing only panties and a bedsheet tied around her neck like Superman's cape, singing Take Me Out to the Ballgame!

So, Patience, you were a delight. I miss you already. And I know you would understand that it's with great affection that I share the following photo of what you reminded me of at the breakfast table every morning, since you never mellowed out enough to get your hair combed until you'd been up for a few hours.

Little Old Ladies from Little Old Towns

I worked at the GreatRep today, where I was unsurprised to find out that one of my residents is in the process of dying. This is a woman who's lived at the GreatRep for about half of my life. When I was in high school, she moved in. She's been there longer than any other resident, longer than the current Director of Nursing, longer than anyone else who's worked there. Pretty amazing.

The entire time I've known her, she's been almost like a living doll. She doesn't speak, rarely makes noises, and doesn't initiate movement barely ever. We move her from chair, to wheelchair, to bed. We feed her with a spoon and hold a cup up to her lips to drink. We use a mechanical lift to put her on the toilet and change her briefs.

I've heard she used to be quite a spitfire back in the day, and would scream at people. There was one caregiver whose voice she just hated and this woman would have a cataclysmic reaction if that caregiver attempted to do anything for her.

Now this woman is ready to go, and she let us know that the way most of them do; by stopping to eat or drink. She'd simply hold it in her mouth or let it roll back out, whatever you put in there.

Her sister stopped by to say goodbye to her today, brought by a younger and more oriented family member. I never would have thought I'd laugh about what someone said to a loved one on their death bed, but this is the cutest and silliest little thing; you would have had to excuse yourself from the room too!

Little Miss Clara marched right up to her dying sister, telling us "I have to go see Sister! We had a violent disagreement a few days ago, and I've just got to make things right!"

Rememeber, Sister hasn't said so much as a word in years.

Miss Clara whipped out a sheet of paper where she had painstakingly written out her speech to Sister. She stepped right up, and gave Sister's arm a good shake, saying "Sister, wake up! It's me, Clara! Nurse, don't you think she oughta wake up?"

The nurse gently replied that no, sister would probably not be waking up and that Miss Clara might want to say her goodbyes.

"Oh, then. All right."

Miss Clara began to read from her paper.

"Sister, first of all, you were always prettier than me."

I wish mightily I could have known what all was on that paper, but it's hard to beat an opening like that!

Fall Risks and restraints

The culture of nursing homes and assisted living facilities has shifted far away from the use of restraints; most places are restraint-free by law these days. The hospital is one of the only places I can imagine restraints remaining in use, and that is simply because of the acuity (how sick) our patients there are. They cannot afford to be pulling out the lines that are giving them IV antibiotics and blood transfusions, because without those things, they will die.

Even at the hospital, restraints are considered a last resort. They frequently utilize one-to-one 'sitters' to watch and maintain safety of very difficult patients. I was pulled from my regular duties to act as one last night, for a confused elderly person who would not stop climbing out of bed (and was a fall risk), pulling out lines, and removing their much-needed supplementary oxygen tubing. Even with me there, the patient was very agitated, and trying to literally climb over the furniture to get out of the bed. I was willing to let her get up, but she was so damn fast she was apt to get away before I could gather up all the things that were attached to her so I could ferry them along after her to prevent them from ripping out.

Finally the MD returned the page from the nurse, and ordered a small dose of an antipsychotic. It didn't stop the patient from trying to get up, it just calmed the patient down enough to stop physically shoving me out of the way, which was good enough.

This was one of those situations where I think that chemical restraints would be so much more effective than physical. My patient has such poor short-term memory that s/he would forget what I had said literally 20 seconds before. Putting someone like that in physical restraints is going to be a huge safety risk because they're still anxious and panicky and energetic, and will focus all of that onto getting out of the restraints one way or another.

Whereas a strong sedative seems highly appropriate and could allow this person the time to absorb their antibiotics, fluids, and oxygen in order to begin healing.

Unfortunately, I don't think we have a specific policy and protocol for chemical restraints the way we do for physical ones. I understand they're risky in terms of oversedation; you don't want to accidentally kill someone! But I wonder, if I were the physician getting paged in the middle of the night, whether I'd view the sedatives I'm prescribing as restraints or 'sleep aids' or what?

Simplicity of success

After 3 long shifts as a med tech at my facility, I went and worked my once-a-week evening shift caregiving, and for the first time, it felt like a relief. We've got multiple residents on a lot of medications right now, many of which would normally be PRN's and therefore not my department. However, one of the nurses wrote them in our book as nursing orders, so for the first time we're giving medications that absolutely must be given at a certain time and that is really stressful with this population. You just never know if or when these people are going to cooperate with you.

So anyway, we've still got the Darth Vader Choker running around. He's a reasonably nice guy a lot of the time, but when he gets combative, it's scary. He's a big man (and remember, he lifted one nurse clear up off the ground by choking her). During report today we were told to "keep a close eye on him" and perform "frequent checks" because he's been peeing everywhere. And housekeeping is getting mad because he peed on the drapes and it's expensive to clean them. I'll file that under "not urgent". If it's that expensive to clean the place when he pees all over stuff, how about NOT ADMITTING people that we KNOW ahead of time are going to freak out when toileted and have a pattern of voiding inappropriately? Duh.

Anyway, Mr. Vader has been on a streak of bad days lately. So when we spotted him dozing on a couch in the hallway after dinner, I suggested to the other aide who was assigned to him that we go try to put him to bed right away, before his meds wear off. We got a wheelchair, because he was all zonked. We gently woke him up, told him we would help him get to bed, and plopped him in the wheelchair.

Once we had him in his room, I started with "Let's take a look at your feet." because apparently that's how his daughter would start his care. He was a contractor for years and years, and for all I know, he thinks he did it today. So I acted as though he had. I said "We want to make sure you didn't step on any nails or anything. Construction sites can be tricky." he was awake now, and agreed. I took off his shoes and socks. I continued "All right, those look good, no problems there. I think we better check your knees too, make sure they didn't get roughed up at all. Can you stand up?" He could, with our help. He didn't even notice that we were taking his pants off to check his knees, was just glad that his knees were okay. We continued like this until he had everything off, used the restroom, washed himself up with a washcloth, brushed his teeth and laid down in bed wearing only a brief. It was amazing. Such a change from his other days. I think if he could be appropriately medicated, he could be compliant like this all the time - he was aware of what we were doing, was doing most of the work himself, and was pleasant to be around.

It was the most successful moment I've had with this guy since he moved in.

And after all the stress of the last few days, it was a really pleasant change - sometimes it's nice to go back to basics.

Oh, yeah, you're so special.

Right after I go on about how happy and pleasant I am, here I am hopping on my computer to rant about a new employee at the GreatRep. Already, I'm a little iffy about the activities department. You might remember a while back about how I had a run-in with a homophobic employee who used hand gestures to demonstrate how she thought gay sex "doesn't work" and that the best she can hope for the gays is to "hate the sin but love the sinner"? And you might remember how I went over this person's head and discussed it with her bosses, who let her know that it will never, ever happen again. Ever.



Anyway, said idiot is in charge of the activities department and has hired some real winners in the past. Looks like she's done it again. She hired a delicate flower named "Daisy" who is home on summer break from college. Daisy's aunt has volunteered at the GreatRep for years and wants her to work at the GreatRep for a month to get "life experience". Daisy is one of those people I just want to throttle. Why? Because I hate it when people say they can't work with elderly, sick or disabled people because it's sooooooooo sad. Screw that.

What, you're so terribly amazingly compassionate that you can't find it within yourself to do anything to help these people that your heart is bleeding buckets for? You're so fragile and sensitive that your feelings of boo-hooing are more important than doing your damn job? BS.

If you don't want to work in dementia because it's hard, underpaid, involves bodily fluids and very rude people, or it's just plain not your thing? That's FINE. But don't insult all the residents and employees by saying that you're somehow too compassionate to do this job.

It makes it sound like you think the only way the rest of us could be doing this work is by not caring at all. And that's not the case. It makes it sound like you think being old, sick, or disabled is the worst thing in the world and they have no quality of life and should all just die, apparently, because what do they have to live for and why would anyone spend their time helping them live?

And to top it all off, Daisy confesses that she's "terrified" of this place, after watching a caregiver transfer someone with a sit-to-stand. Really? You find moving someone from one chair to another terrifying? Stay far away from children's birthday parties, then. They might play musical chairs, and you'll have an aneurysm.

Daisy, I hope you don't even last the one month you're slated to be here. You're disrespectful of everyone in that building and you just don't get it and if you come up to me looking like someone had a stroke and is dying and then all you want is to say tremulously "Ummm... Millie says... she needs to use the bathroom??" I might have to slap you.

I hope you're going to college for something with no human interaction necessary.

The Codger Whisperer

Just got home from my shift with the combative ex-alcoholic that lives at the CrapDorable facility that I used to work at and hated. Whew!

Let me tell you, walking into a place, saying "I'm here to pick up Mr. Codger for his doctor's appointment" and hearing "Ohhh, yeah, he's in a really bad mood. He was out here in the lobby but they took him back to his room to use the bathroom because he can't use the main one." (??) That's not how you want to greet any outside providers that come into your facility. If I hadn't known what I was getting into, I'd have been tempted to walk right back out.

The receptionist remembered me from my brief and hellish stint there months ago, and gave me her key so I could go find Mr. C myself. Which I did. Sitting in his wheelchair in his room with 2 aides trying to pee in a urinal & yelling at us all to get the hell out. I grabbed the paperwork I needed from his room and did so, waiting out in the hallway to work on it there. After his urination, Mr. C seemed in a better mood, and he and I sat in the lobby of the CrapDorable facility chatting while we waited for Dial-A-Lift to come pick us up (you know, those bus system buses that will take you door-to-door if you're disabled and have a wheelchair lift on them). Bus came, we went, he crabbed the whole way there. Arrived, read to him from a travel magazine in the lobby (his favorite topic) and got him all cheerful and pleasant for his appointment.

Then the doctor, who looked to be my age or younger, walked in. And told Mr. C he was there to consult on whether or not to remove his toe. OMG. They pulled out the offending toe, and I'm no expert but it looked like a good candidate for removal to me; lots of necrotic black flesh, and ooze, and bleeding. Yuck. Apparently Mr. C didn't have any pain from it though. Then came the awesome part, in which the doc said we needed to transfer Mr. C to the exam bench, Mr. C refused, the doc seemed completely unaware that his patient had dementia, and I pulled the MA and the MD out into the hall.

"Look, I just met this guy today, but I picked him up from a dementia care facility. He has dementia. He also gets physically and verbally combative. He is a 2-person transfer and can't walk or really bear weight. So we can transfer him if it's absolutely necessary, but he may not like it."

They came back in, we tried, Mr. C grabbed on to his wheelchair, refused, and started swearing at us all. At this point, I figured we were just going to have to do it anyway, but the MD backed down and said never mind, even though he was supposed to be examining the codger in other areas for cancer. Some people might consider follow up to a biopsy a little bit IMPORTANT.

Instead, he chickened out and said "Uh... well, we won't make any decisions about that surgery, and I'll have you come back in 3 weeks so we can take another look at that toe." and he and the MA rushed us out of there as fast as possible.

Sheesh. So the codger just spent a bunch of money for this appt. plus someone to shepherd him there and back, and all he got was a clean dressing for his horrible toe. Great.

We then had a half hour to kill before our ride back to the CrapDorable, so I chatted and read to the codger until then. He freaking loved me. Just not anyone or anything else, today, unfortunately.

I brought him into the facility with an admonishment to behave ("I find it difficult when you aren't here, dear") and watch his language, and then set about coordinating his follow up appt. I told the homecare agency CareCo that I'm happy to take him BUT
1. He needs to be premedicated, because clearly dermatologists are afraid of pissy old men who swear at them. If he gets premedicated, he probably won't do that.
2. I want CareCo to call ahead to the doctor's appt. and make sure the physician understands what's happening and what needs to be done.

Jeez, people. How scary can one wheelchair bound old man be?

Ongoing Grief

A while ago, I wrote about a resident I nicknamed "ScaryLady" on this blog, because she used to beat up all of us caregivers every single night when we tried to put her to bed. I literally had bruises up and down my arms every day for about 2 months straight that were all from her. Now she's on a routine behavioral medication for the first time, and is doing much better. She cooperates with care more, which means she gets more care, rather than just the absolute necessities. I see a different side of her, and it's so nice.

Her daughter is pretty in denial about how far NotScaryAnymoreLady's disease has progressed. I wondered what she thought, hearing about how her Mom needed further medication in order to stop injuring her caregivers. I tried to put myself in her shoes and imagine what that would feel like, but all I got was awkwardness, and I felt self-conscious about my bruises when she was there to visit her Mother. I felt torn between wanting her to know where they came from and being embarrassed that I couldn't somehow stop the behaviors.

Today I felt like I got a bit of a taste of what it's like to have a family member that's acting out like that, and it really has made me sympathetic to my residents' families.

One of my residents is a man I've been taking care of for about 2 years at several of the last places I've worked at. His family moved him into the GreatRep partly because I started working there, and they have been very pleased with the way I've worked with him over time. There was a gap of several months where I didn't see him before he moved in, so my knowledge of him wasn't very up-to-date. I told my coworkers how nice he is, and easy going. And then he moved in, and he wasn't. He refused showers, did a lot of very annoying and rude things, and even sexually harrassed one of my coworkers. I felt terrible, having vouched for him like that, even though everyone reassured me that they understood it's just the disease. Dementia does that to people.

This last week has been hellish. My resident has been escalating in aggression, trying to take advantage sexually of other more impaired residents (like the nonverbal ladies who don't understand what's going on). And when we try to redirect him, he's been increasingly hostile to staff.

This morning at breakfast, I was giving meds to someone who was sitting at the table with that guy, and the guy suddenly looked at me, looked at my chest, and asked me if I was wearing a bra. Ugh. I said "That's not an appropriate question and we aren't going to talk about this subject". He started challenging me "Why not? Are you? I bet you are." I restated that this was NOT OKAY and he needed to stop talking to me that way. And then he asked me if I wanted to fight. And I said no. And then he stood up and told me he was going to punch me. Instinct kicked in and I said authoritatively "No, you are NOT." He sat back down, and I ignored him and finished up my task.

This is a guy that I used to think of as like a second Grandpa. I know his entire extended family, went to his wife's most recent birthday party, and have babysat his great grandkids. And he wanted to punch me in the face, and would likely have sexually assaulted me if circumstances allowed it.

It just hurts so much.

Now there isn't much to be done about him right now. He needs medication changes, and until they can happen, he must have a family member supervising him in our facility at all times. For the safety of our residents and our staff. And me. I think the fact that he did that to me really shocked his family and they're being very helpful.

But I think I got a taste of how awful it is to have your loved one scaring people, scaring you. And it's so bad. I feel so terrible for the family members. Alzheimer's is a really mean disease at times.

Me + Med Cart = True Love

I fricking love my new job at my same facility. I have more independence and autonomy, which is AWESOME when my coworkers are being douchebags like they were today. I'm learning a lot and becoming more med-literate, which is helping as I do my nerdy stuff like look up decision making flowcharts related to different behaviors and how to manage them. Now I can look up "screaming" on www.alzbrain.org and am familiar with some of the medications they suggest.

Also, I'm good at getting all my residents to take their meds. Even the paranoid ones. And I'm starting to remember who takes what so if I see Sally Lou limping and say "Does your foot hurt?" and she says yes, I can remember whether I give her routine tylenol or not, and go run and get it right away. Or if I see Harry starting to get hinky and rearrange his furniture while wearing lots of layers, I can think "Do I give him behavioral meds? Yes! Now might be a good time for that!"

Now I'm feeling guilty that I said my coworkers were being douchebags. Really it was only 2 out of the 12 that I saw today. And it's the same 2 that are always like that. One is just honestly very dumb, and so it's really hard to communicate with her. Example: our facility has two wings, East and West. On East, most of the residents can walk, talk and feed themselves. On West, they don't. My dimbulb coworker has been there for probably 4 months and still cannot tell you which is which. Or where each resident's room is. These are things that normal people knew within 2 weeks of working there. Not the sharpest tool in the shed, that one!

So I love getting to wheel my cart around, popping pills, doing my paperwork and phone calls to family, and not having to chase down Dimbulb to help with a 2-person transfer or Lazy to watch the floor while I go give a shower.

Oh med cart, I love you so much!

Superstitions

The other night after work, I was telling Mr. Polly about my day and he said something like "and tomorrow they'll all try to escape" and without thinking about it, I reached over to knock on the coffee table. Because at work, whenever anyone says something jinxy (be it "Wow, what a quiet night" or "They're all so calm today!") we all immediately knock on wood.

I think this is common to all healthcare workers, in nursing homes or in hospitals. Lots of people are superstitious about death and ghosts as well. Since my buddy Darlene passed away, many of my coworkers have been extra worried about our other residents when they get wheezy or have an unresponsive episode, because they think death comes in threes.

We all metaphorically batten down the hatches whenever it's a full moon as well. Seriously, the weirdest stuff that my old folks have done has all been during the full moon. Walking around in the courtyard in the cold weather with no pants, shoes or underwear? Check. Falling asleep in someone else's bed and then insisting that yes, those dresses in the closet ARE yours and this IS your room (male resident)? Yep. All during the full moon. Eating fake plants, rearranging furniture in odd ways, hoarding all sorts of pillows under one's sweater? Those are everyday things.

Tough to (not) say goodbye

One of my favorite residents died yesterday. Jenny was in her eighties, and often still fairly quick witted; she might be thinking her mother would be mad that Jenny was going to be late for dinner, but she could always come up with a quip that would surprise you and make you laugh. Jenny was the first resident at the GreatRep that I really felt was a friend of mine, and it's been painful watching her decline. Of course we all knew she was on hospice, and anyone with eyes could see how outrageous her edema (swelling due to water retention, usually just in the lower legs/feet but in extreme cases like Jenny's can go all the way up to the abdomen and eventually lungs). But Jenny had been sick for a long time, and was still her usual loving, funny self when I saw her on Friday.

This was one of those rare times when my weekend coincides with everyone else's, and I had Saturday and Sunday off.

Monday I arrived at work, and during report, the med tech let us know that Jenny had passed away about an hour before. Me and another coworker who hadn't known about this both burst into tears, and apparently everyone else had cried throughout the shift yesterday as they helped Jenny through her last hours.

We were all grateful she didn't linger too long once she was actively dying, because she was basically slowly drowning and it was very scary for her.

I miss her already. I miss my friend, and I wish I'd known how suddenly she began to die because I didn't get to say goodbye. I'm torn between wishing I had gone to say goodbye to her body before they took it, and realizing that doesn't matter because she wasn't in there anymore. Still, when we closed off the fire doors to give the people privacy to take Jenny out on the gurney, I was seized with an urge to run after them and pat her hand once more.

We were all lucky to have gotten to know Jenny, and I know she was ready to die, but it's still hard. It was hard two weeks ago when she kept asking me to kill her. It will be hard next week when a new lady moves into Jenny's room. I hope her family invites us to her service.

Dementia Facility FAQ's: What family members are probably wondering.

We've had a few tours come through the GreatRep lately, as well as out-of-town family members come into town to see some of our residents. It's interesting to see how people react to the place their first time, and it made me think about what they're probably wondering but don't ask. So here's my version of what you might like to know about a dementia facility, and my answers:

1. Doesn't it bother them to know they're locked in here?
Surprisingly, no. None of my residents have ever said anything like that to me, and very few are aware that they cannot exit certain doors without setting off the alarms. We have secure courtyards they can go outside in, and we just redirect them away from the front door if they're up there fussing with the keypad (it requires a keycode to open it without setting off the alarm). People with dementia are very inwardly focused, for the most part, and get more so the more their disease progresses. So our little world inside the facility is usually big enough for them. It helps that it has a circular part of the floor plan which is good for walking/pacing.

2. Why are all those people dozing in chairs? Why aren't they awake?
The most common answer is that most of them don't sleep all through the night. I just worked my first overnight shift at the GreatRep and was very surprised at how often I was informing people that no, it's still the middle of the night, and helping them back to bed. I figure that even the ones who can't get up and talk probably spend a good portion of their time in bed awake too, so they just kind of doze off whenever they're tired. They're on more of a 24-hour schedule, like a newborn. And yes, if they're hungry or thirsty in the night, we give them snacks.

3. Why is that lady making that noise/yelling for help/hitting that chair?
I don't know. Sometimes repeating the same words or phrase over and over is soothing for people with dementia, it's called perseveration. Unfortunately, sometimes that phrase is something hard to listen to, such as "help me help me help me" or "hurry up hurry up" or a repetitive action, like banging on whatever is in front of them. We try to mitigate, redirect, and keep them occupied with other things but there's nothing we can really do to make someone stop doing a behavior like that.

4. What about privacy? Won't you sometimes be doing some things in front of other residents? We had a family member complain this week because the podiatrist was in to do foot care, and was set up in a room at the end of the hall which isn't closed off from the hall. They thought it was inappropriate to do foot care out in the open. The thing is, you have to consider the logistics; sometimes there isn't enough space in each person's room to set up a podiatry station. Also, see #1 about the inward focus. Very few of the residents pay too much attention to what the other residents are doing for any long span of time. Some have friendships and stick together, but then they don't mind if their friend is present while their feet are being worked on. We don't change their clothes or use the restroom in front of others, and if they're getting a brief change in bed, their roomate is asleep/cannot see over to their side of the room plus it's still quite dark.

5. Why are you feeding them? Why are they incontinent?It just happens that way; over time, almost everyone become incontinent to some extent, and eventually they stop feeding themselves. That's why they're getting 24-hour care now. We use mechanical lifts called sit-to-stands so that we can still give everyone the chance to use the toilet, and whether they void on it or not is up to them. That's what the briefs are for. I think this is probably one of the biggest reasons I'd have a hard time keeping someone at home and caring for them myself. Everyone incontinent really should be changed approximately every 2 hours. I couldn't do that at home. We've got a full staff and we all get to go home and sleep between shifts, which is why we're able to do our jobs well. Having worked in this field and seen how hard it is, I think I would be totally willing to put myself or a loved one in a good care facility; I just don't see how it'd be feasible to do otherwise.

Death, Extended, and Death, Interrupted.

In the 3 or so months I've been working at the GreatRep, 4 of my residents have died. Since I'm pretty new there, I haven't had a chance to form the long-term bonds with them that some of my coworkers have, so it hasn't affected me as deeply as it has for some of them.

This most recent one, Mr. 4, was the hardest for me personally. Partly because he and his wife were new to our facility and got there around the same time as I did. Partly because he went from being fine, to having a major health event and being sent out to the hospital, to coming home to us already on comfort care and ready to die. His family was pretty amazing; one of their adult children spent the night in the room with the parents the entire time. Mrs.4 really appreciated that, and I think it eased a lot of the burden on her. Mr.4 hung on for several days despite being NPO (nothing by mouth, including food or water). We turned him every 2 hours, kept him clean and comfortable, and his family watched him go through the whole process. Not just their children, but nieces and nephews, aunts and uncles, the whole gang was there.

Providing care to someone who's dying takes on a whole new dimension when their family is there, watching you, sometimes crying, sometimes joking, just trying to maintain some kind of life during that limbo. It really drives home how your patient had a whole entire life and millions of experiences before this one, and it makes it sad that they have to end this way, with a slow dragging towards death.

Mr. 4 passed peacefully, and before he went I promised him we would take good care of his wife. It's hard to know what to say to someone who's just been widowed. Mrs. 4 knows what happened, her memory is still fairly intact. It's hard to force myself to reach out to her when I'm afraid that saying Mr. 4's name will make her sad. But she's already sad, and she knows we all cared for him before he went. So I keep making myself check in on her, ask how she's feeling, and so on.

I thought dealing with the dying people would be the hard part, but it's their families that I ultimately feel sad for.

So it made it all the sweeter when I went to Jimmy's wife's birthday party today and found out that she is no longer on hospice care! Mrs. Jimmy has held on so much longer and stronger than anyone anticipated, and I'm so glad that Jimmy won't have to face that loss in the immediate future after all. I got to tell him jokes and give him hugs and kisses and watch him hold his grandkids while his wife opened her gifts and ate her cake. Pretty nice to see death get interrupted.

(for newer readers, I wrote about Jimmy back when I first started this blog, here: http://scrubsandcrocs.blogspot.com/2010/07/authenticity.html ; I don't work at his facility or care for him through HomeCare anymore, but I'm in touch with his family so they invited me and my husband to the party today - yay!)

Antipsychotic Drugs and Chemical Restraints

At the GreatRep, and pretty much all long term care or memory care facilities, there is a Bill of Rights list for all the residents posted prominently around the building. One of these rights is "to be free of all restraints, including chemical restraints". Logical, right?

As an aide, I have very little to do with the residents' medications. I report symptoms to the charge nurse, who then decides what to do from there. A few of the residents are on frequent doses of the same medications for certain behaviors or symptoms and so we all know what they will probably get in response to our reports of their symptoms. Lillian has severe pain and it's very obvious when it's not being controlled well, so when she hurts we all know she needs her Morphine. LuLu repetitively hits herself, which lets us know it's time for more Haldol or Ativan for her.


A lot of science news articles state that the use of antipsychotic drugs for dementia is a bad practice. It's not intuitive, because if you look at the list of symptoms of say, schizophrenia:
"They include disorganized thought processes and disorganized behavior as well as delusions and hallucinations. The disorganized thought processes are seen primarily in speech such as rambling and 'word salad'. The patient may babble about various different topics one after another, which to the normal person, do not appear to be connected in any way. The phrase 'word salad' describes a patient’s incoherent speech, which lacks correct grammar and any obvious purpose. Disorganized behavior will be discussed in a following section. Hallucinations are false perceptions; patients believe they can hear voices others can’t and sometimes see or feel things others don’t. Delusions are misinterpretations of events and their purpose such as when patients believe the CIA is plotting against them or that their psychiatrist is involved in an assignation attempt against them. Schizophrenics cannot be reasoned with over their delusions; reasoning and discussion leads to the patient’s mistrust and anger." (1)

All of that is very typical of dementia patients as well. You'd think since the symptoms are so similar that the treatments can be as well. But apparently not, since the use of antipsychotics in dementia patients increases their death risk, for reasons unknown(2).

To be clear, it seems like Doctors are warning against antipsychotics to control behavior that is merely "annoying" for caregivers such as wandering, agitation, uncooperativenesss, etc. For behavior that is truly dangerous for the patients or everyone around them (self-injury, extreme combativeness that can physically injure both caregivers and the patient, etc) I think it can still be merited.

Which is why when I read articles like this one, "Alzheimer's Therapy Focuses on Care: Giving Alzheimer's Patients their Way, Even Chocolate"(3) part of me gets really frustrated. It seems like outsiders and the media tend to think that some of the interventions we routinely do on our patients are for our own convenience, and therefore wrong. I loved that it explained about emotional states lasting longer than the patient's ability to recall or explain the reason for the emotion; however I would have liked to have seen a few more realistic examples of how this can be implemented. Things like when one of my widowed residents becomes anxious, thinking her husband is injured and missing, it's more productive to let her talk about that briefly, then steer the topic to her children, who are all alive and well. She calms down and gets happier as she tells us about what they were like when they were little, and shows us the quilt her daughter made her. That way, when the conversation ends, it ends on a happier note, which is more likely to stop her anxiety cycle about her husband. And of course there are the more conventional redirections like trying to get her involved in an activity or focused on something else.

I just hate the idea that we're somehow failing LuLu because sometimes medication is the only way to get her to stop hitting herself. You can redirect her, feed her, hold her hands gently, all sorts of things, but if she's in that mood she will not be deterred and it's not safe for her.

Patients have the right to refuse care, for example. But an incontinent person who refuses to be changed for 8+ hours isn't making a reasonable choice and is endangering themselves by hugely increasing their risk for a pressure ulcer. So sometimes we just have to force someone to let us perform very basic hygeine on them. And it sucks. And sometimes the only way to do that without anyone ending up seriously hurt is to premedicate them, and sometimes even that doesn't work. I wish there were a magic wand to make combative people cooperate when you're trying to help them.

But for all the caregivers and family members who read that article, I want to tell them that baby dolls and chocolate are a part of the answer, and can be good tools, but we need more solutions. And that even as a profession, caregiving is rarely "convenient"; that's not why we do this work. So please give your facility the benefit of the doubt and ask first before assuming they're chemically restraining people for no good reason. It's a last resort, but sometimes it's the only way.

And I don't know if it really belongs on any patient's Bill of Rights. Because the truth is, they do have the right not to be restrained unless they're hurting themselves or others and nothing else will stop them.


1. About schizophrenia http://healthpsych.psy.vanderbilt.edu/AntiPsychoticMeds.htm
2. Antipsychotics and death risk increase http://www.webmd.com/alzheimers/news/20080616/antipsychotics-for-dementia-up-death-risk
3. Giving Alzheimer's Patients Their Way http://www.nytimes.com/2011/01/01/health/01care.html?_r=2&pagewanted=1

Matching Game

Here's a little game I like to call "I found what...WHERE?"

I'll tell you what I found, and you guess where I found it. It's a little like "find the saltine" on Scrubs except so far I haven't found any saltines anywhere unusual.

Let's play!

1. I found a flashlight.
a) In a cupboard.
b) In a garage.
c) In someone's underpants.

2. I found a pair of dentures.
a) In someone's mouth.
b) soaking in the appropriate cup with lid, labeled.
c) wrapped in a sock and in someone's pocket.
d) shoved down into a recliner.

3. I found a missing resident:
a) Sleeping in someone else's bed.
b) In the furnace control room.
c) trying to open the locked gate outside saying "Damn it!".

4. I found poop.
a) In someone's underwear.
b) Trailing from someone's bathroom to their bed.
c) On the shower floor.
d) Under someone's fingernails
e) In someone's mouth.

5. I found toothpaste.
a) on a toothbrush.
b) on the bathroom counter.
c) in someone's hair.

Keep in mind, this game is extra tricky because for some of these, every single option is true! My world is never boring. Or clean for very long.

Happy New Year!

Why Dementia?

I was thinking about this last night, and then talked about it with a friend (hi Annie!) on the phone today; not everyone likes being around people with dementia and taking care of them, so why do I?

First of all, I don't always like all my residents. There are a few who really only react to anyone with physical aggression - no matter what you do, they're hell bent on hitting, scratching, spitting on, and choking you. Those few, I figure I just missed the window where they were able to get through their disease enough to react better, and now all I can do is provide the minimum care needed to keep them safe without either of us getting hurt. I don't get all fancy and try to put makeup on them or anything, because I know they won't enjoy it. And I don't have to like them, I just need to do my job and take care of them, so I do.

That's a very small percentage though. The rest have their quirks and behaviors for sure, but I genuinely really like them and enjoy taking care of them, even as they get further into their diseases.

It's hard to explain exactly why it doesn't really occur to me to think that watching someones dementia progress is depressing. The best I can liken it to is that my husband used to be a special ed. teacher, and would get all kinds of idiotic comments when he told people what he did for a living. "That's so sad! I would cry every day because those kids aren't fixable" or "That must be so HARD" or "You must be really special to be able to handle THAT all day". He'd always get mad because he didn't view his students as broken or worthless or burdens any more than any other kid. The kids don't hate their lives; they don't know any different, and have always been who they are. And sure sometimes they were pains, but every kid is sometimes. And sometimes they were very funny and fun and loving, just like any other kid.

I feel pretty similarly about my residents. I didn't know them before they got sick so I don't know any better than to expect them to be however they happen to be right now. And I pretty much like them how they are right now. And will still like them even as they decline. Knowing them when they're only somewhat confused makes the end/rageful stage (not everyone does this) easier to handle.

I think it's pleasanter to take care of someone who is in the permanently-combative stage if you know a little more about who they used to be. I always appreciate when I step out of the bathroom after getting a beat-down, my hair all askew, nametag crooked, covered in sweat and disinfecting myself like mad, one of my coworkers says "You know, Lily never used to be like that. When she first came here, she used to play the piano and try to tuck the other residents in at night. She was a cool lady." It makes it easier to go back in and face the Lily that's kicking me, if I can hold that picture in my mind and be trying to care for that past Lily even though she's gone already.

It's sad when someone is in the self-aware stage of the disease, and knows they're losing their memory and is powerless to stop it. It's sad because they're sad. But once they pass that phase and are living in the moment, they're often pretty content, and if not, then I can help them feel better usually. So that's not sad anymore.

With the rare residents/clients that I knew before they got so confused, it's more sad to me. Mainly just because I miss them, and I know that if they were aware of the whole situation, they'd be upset that they were missing out on so much. And I do understand that's where most family members are coming from, and it's really hard on them. It's easier for me because I usually get to live in the moment with my residents without mourning the past.

I think my favorite thing about working with people with dementia is the immediacy. I don't have to spend a lot of time building a relationship with a resident before they will trust me. If they like the way I interact with them, they'll probably go ahead and help me do what we need to do. If they like me, I get kisses right then. It's great, and very clear. And if they don't like me? I can go away, come back, and try again with a clean slate.

That probably sounds really lazy on my part. But it's true - I like the simplicity of my relationships with my residents. Affection flows freely and quickly, and anger vanishes fast, for the most part. Who wouldn't find that personality type easier to care for than someone who bickers and holds grudges? Right?

Dementia in Groups

The GreatRep (where I work) is an Alzheimer's and Dementia care facility. It's secure, which means in order to get outside, you must know the keycode and enter it to get the doors to open. Well, there are secure courtyards outside that anyone can go into whenever they like, but this time of year they don't get much use. Although one of my coworkers did build a tiny snowman outside the window and then took each resident to the window to see it and look at it and talk about the snow for a while, which was cute.

My friend Annie just wrote a post on her blog about her first visit to see her Mom at a facility much like the one I work at. Go read it, she's great, her Mom is great, and her Dad is too! http://tinyurl.com/28tgzbf

What cracked me up about it is that we give graham crackers out every day at 10am at my job! And what made me think is when Annie said "In my head I guess I wanted to imagine that, while we don't understand her in her disease, once she got around other people who had the same disease they could somehow find each other out there in that place where Alzheimer's takes them. But I guess it just takes everyone somewhere different."

I think it's pretty fascinating to watch the ways my residents interact with one another. We have one set of roomates that we refer to as "the twins" even though they aren't related, because these ladies can often be found strolling around together, or in their room reorganizing the closets for the zillionth time, or reading aloud to one another. One of the younger residents there strolls around all the time, patting the hands of whomever she comes across, or just sitting with someone for a while. She doesn't often strike up conversations, but she seems to really like the companionship of just sitting next to someone on the couch.

We've got a few married couples that room together, one of whom hardly talk to each other (or talk much at all anymore) but every day after breakfast we put them next to each other on the couch, and the wife leans over and falls asleep resting her head on her husband. They don't sleep together in the same bed anymore (that sadly doesn't work out very well when there's catheters and memory loss involved) but they're in the room together and they doze next to one another on the couch. The other ones still walk and talk, and they bicker bicker bicker just the way I bet they've always done.

On the more acute wing, mostly the residents don't really talk to one another very much. They're far gone enough that if you want their attention, you need to address them by their name, try to make eye contact or hold their hand, and speak up pretty loudly. So obviously since they all need that, none of them can really do that for one another. There are a few exceptions, of course. One of my favorite people there, Bonnie, is also on the younger end and has excellent hearing. When I'm feeding her lunch, she'll quietly respond to what someone on the other side of the dining room says, so if a coworker way over yonder says "Is Maxine ready for dessert?" Bonnie will say, so only I can hear her "Yep, she sure is". Bonnie is the one who says really cute things sometimes, like when a coworker told her "Oh, Bonnie, you are something else!" after she'd cracked us up, Bonnie answered "No I'm not I'm always just a Bonnie".

With dementia, it seems like those little moments mean a lot to those of us on the outside. Little peeks into the universe our loved ones are living in right then. And when they connect with each other, and I'm watching, it can make me so glad to have been there. I love walking away after settling someone at the table and overhearing two of my little old ladies that I see every day go "I don't know who that is, but she sure is a nice girl" and another reply "I don't know either but I think she's very sweet". I even got happy when one of my most confused ladies gave me a kiss on the cheek and told me "You're a nice boy".

I know some of the people with dementia feel lonely a lot, because they don't know that you've just spent 20 minutes holding their hand and talking to them; if you're not doing it right then, it doesn't count. But I think a lot of them have some pretty rich inner lives, given the stuff that will occasionally come through in those moments of clarity. I just wonder if they value those moments any differently than all the rest of their time. I know us outsiders do, because those are the moments we feel like we really connected with them.

But today I worked West 1 again (remember how I got my ass kicked all day last time?) and when I went to get Genivieve up, her daughter was sitting, watching her sleep, and holding her hand. Her daughter kissed her Mama goodbye and chatted with me for a few minutes, then headed out so I could start getting Genvieve ready for the day. And you know what? Genvieve was shockingly gentle and relaxed for me. She didn't hit, bite, scratch or spit. She let me help her, and even gently patted my hands. Even though she was asleep while her daughter was with her, I wonder if that didn't make a difference for Genvieve. Maybe it was a coincidence, but maybe not.

...And then I come home crying

Even good jobs can give you bad days. Very, very bad days.

My current facility (the GreatRep) is divided loosely into two wings, East and West. Residents can circulate freely from one wing to the other, but the West Wing is more acute, and is where anyone who needs mechanical lifts to be moved, or consistently must be fed at meals lives. As you can imagine, the more demented people get, the more likely they are to be combative. And there is one little stretch of the West Wing that we may as well nickname Witch Wing or something else that rhymes with it, because there are 4 women there that will slap, spit, scratch and pull the hair of anyone who dares to try to toilet, feed, or bathe them.

I have no idea why the administrators decided that some lucky soul would get ALL of these women at once (plus a couple of pleasant residents) and put them all on one run.

So when I went to sign in and saw my name written next to the dreaded West 1 run, I got nervous.

The morning started out well enough that I was lulled into a false sense of security. Madge simply curled into the fetal position and refused to unclench the entire time I dressed her (while she lay in bed) and put her into her wheelchair, and cleaned her face and inserted her dentures. Lillian tried to slap me while I toileted and dressed her, but she was too tired for much and was easy to dodge. The others mostly cooperated.

Then it came time for the after-lunch rush to get EVERYONE out of the dining room, toileted or changed, into bed or a regular chair (no wheelchairs) and into clean clothes if they got food all over them. This didn't go as smoothly. Lillian grabbed a huge chunk of my hair and yanked, yelling "you said mashed potatoes! YOU SAID MASHED POTATOES! YOU SAID THAT!" and kicking me as I put clean pants on her. She also managed to slap me across the face while I tried to stand her up from the toilet. Madge was no longer content to curl into the fetal position and instead lost her damn mind when I had to pull down her pants to check if she needed a new disposable brief. Lots of kicking, plus another slap for good measure. Thanks, Madge.

I held it together, finished doing what I had to do, charted, and drove home. Walked in the door of my apartment and burst into tears like the giant baby I felt like being all day.

Days like that make me grateful for two things:
1. I will only have West Run 1 occasionally, and I'll know what to expect next time.
2. I'm married.

How horrible would it be to have a day from hell like that and then come home to a completely empty apartment? I couldn't handle it. I know lots of people like to live alone, but I will always want a roomate, a child, a family member, a spouse, or even a pet around when I have the worst day of my life like that.

As it was, I burst into tears, changed my clothes entirely (I was covered in pureed food after trying to clean the witches of West 1 after lunch) and got into bed. My husband fixed me up with ibuprofen, an ace bandage, a bowl of cereal and soymilk, and an episode or 3 of Jeopardy.

I survived, but I sure as hell didn't do it alone!

Oh, another thing I'm grateful for? They make halidol in cream form. That way when someone is totally freaking out, if they have orders for it, the nurse can rub some cream on them to get them to calm down. If I ever meet the person who figured that one out (and had the common sense to know that pills and injections are a Bad Plan for anyone who needs the halidol that badly) I owe them a medal or a plaque.

Still Loving It

I'm finished with my training at the GreatRep, so I've had 2 days to hit the floor in earnest, and I still love it. My coworkers have been amazingly helpful and supportive, letting me know all the little tips to work with the residents' idiosyncracies. And when they got done with their work faster than I did (of course) they came and helped me make beds and get the rooms on my run shipshape. So nice.

Learning everyone's names is coming along pretty well. We have a LOT of Florences and Betty's, so last names are a must, even though we don't refer to them by Mr. or Mrs. (that doesn't work so well with advanced dementia). Thus far, I'll be on day shift for all of November, and this is my first time working that shift. At the other places, I did evenings and nights. Days are so awesome because you're done and home or doing errands by 2pm!

My days at the GreatRep usually go as follows:

5:15 am - wake up, get ready, pack lunch, etc.

5:55 am - arrive to work

6am - get report from the night shift about who had suppositories (top priority on getting to the bathroom, for obvious reasons) and who had a rough night or was changed recently or whatever. Check the schedule to see who I need to shower, who has appointments, etc.

6:15 - start getting my early bird residents up for the day. Some are fairly independent and all I need to do is wake them or lay out clean clothes for them, and they'll do the rest. Some are physically able but not mentally, so I need to cue them for every step, dress them, and brush their teeth for them. Some are physically and mentally unable, and I use a sit-to-stand mechanical lift to get them up and into their wheelchairs. The most difficult are the combative residents who will try to kick, hit, bite, scratch and spit on me while I'm providing care. I dodge like mad, get help as needed, and don't take it personally.

8am - If I did everything as fast as my coworkers, I'd have all my residents up and dressed, and seated at the dining room tables. There are several different runs, and depending on which one I'm assigned, I either serve, clear plates, or feed those who no longer feed themselves.

9:15 - breakfast is mostly finished. Time to get everyone out of the dining room, into easy chairs for activities, to the bathroom as needed. This is usually the best time to give my showers, unless the people were super quick and I got them done before breakfast.

10am - help with either snack or activities, or continue showers and toileting.

11:15 - start getting everyone back into the dining room, which often involves transferring them back into wheelchairs.

12pm - do lunch, doing the same role I did before.

1ish - lunch is over, I get everyone cleaned up and the dining room started (bus most of the tables) then be sure to toilet EVERYONE (in whatever level of help they need). Some will lie down for naps at this point, others will go participate in activities, visit with family members, or just hang out with one another.

1:50 - do a final walk through of all the rooms on my list to be sure the beds are made, the trash is taken out, and the bathrooms are stocked with supplies.

1:55 - do my charting and give report to the oncoming shift

2:07 - walk out the door to go home.

Ta-Da!

Day shift is probably the most hectic, especially with the 2 meals. But I love that it's busy enough to keep you hopping so it flies by, and then you are DONE while the rest of the world is still at work!

Leaving my Blankie

I just realized that even though I told you all about leaving the Crapdorable place, I didn't say what I'm going to do instead! Duh.

My interview at the GreatRep place went very well, and they called back to offer me a job the same day. Even better, the position they offered me is one that I didn't know was available: full time, part dayshift, part evening shift (probably 2 days per week of each, one variable, 2 days off per week). That means NO MORE OVERNIGHTS!

And this time, let me tell you, I interviewed. I asked that administrator so many questions that I wish I'd asked at the Crapdorable place. Everything from "What's your employee retention rate?" to "What's the average census of your residents?" to "How long has the administrative staff been here? Any upcoming changes?". I'll explain all those in my next post about how to choose a nursing home, so if anyone reading that went "Huh?", don't worry.

I feel confident about the care the residents get at the GreatRep place, which means I'm very likely to be able to stay in my job there. Add to that the fact that I'm only working 5 days a week, and no more than 8 hours at a stretch, and I'm very likely to actually enjoy this job! It did, however, mean that I'm finally having to cut the apron strings and leave the Home Care Agency.

That place has been my only constant in the past year. I'm embarrassed to tell you how many other supplemental jobs I've had and left throughout my year at the Home Care Agency. Okay, fine: Four. About to start my Fifth. So leaving the Home Care Agency is me leaving my blankie, basically. But it was becoming a crutch, and preventing me from taking potentially great jobs that would have conflicted with my schedule there.

The GreatRep place has a scholarship program for nursing school. And if they ask you to come in on your day off, you get $2/hour more, which should translate into almost never working understaffed. They do a lot of things which mean members of the community come through all day every day, which makes it much less likely that anyone is being neglected; they're doing a fitness study with one of the State Universities. And they have a very, very cool program that I wish I could write about but it would give away which facility I'm talking about.

To make it more bittersweet, I just had my 1-year review at the Home Care Agency with Big Boss Betty (remember her from my first post here?), and it was awesome. They gave me a bonus equal to 25 hours of work, because that's what I've averaged for them over the past year. And they said I'm welcome back any time that I want. Awwwwww.

So I just have to get through my very last crapdorable rotation, then one week of only Home Care (should be easy as pie) and then I'll begin my new full time job at the GreatRep.

Whew!

Shift Reports: Take it to the next level

Even though we use shift reports to communicate among nursing staff about what our residents have been up to, sometimes a resident will misbehave so outrageously or so consistently that management decides ALL the employees should know about it and be on the lookout. This usually comes down to the people who keep trying to escape (ie "flight risk") and those who really, really, REALLY don't want to be on any kind of diet.

You wouldn't think those two things would be on par with one another in terms of inconvenience, but you've never seen an octogenerian ranting and raving in the dining room about having to eat "grass" at every meal (salads) or about not being able to get a second dessert. They can get loud!

So when someone takes it up to that next level, management prints up a flyer or 10 and leaves them in employee-only areas: kitchen, break room, nursing station, and by all employee exits. That way, when the teenage boys from the dish pit are headed out back to smoke, they know that if they hear someone on the other side of the fenced courtyard saying "Open the gate, let me out!" that they shouldn't. For example. Or when the waitstaff sees Mr. Whomever sitting there for an hour waiting for shift change so he can order a second lunch, they need to call an aide (like me) to convince him to move it along and wait until dinner time.

My favorite thing about these flyers is how much they look like Wanted posters at the post office. I like to imagine the "flight risk" residents strolling away from the building in slow motion, with Bon Jovi's Wanted Dead or Alive playing in the background. Who says that the "steel horse I ride" can't be a walker or mobility scooter instead of a motorcycle?

Add to that the complete awkwardness of most of the photos used in the flyers, and you end up with something like this:

RESIDENT NAME: Mrs. Ballyhoo
[followed by an awkward photo of said resident, such as this one I found by googling "Grandma"]

ATTN: FLIGHT RISK
DETAILS: Resident has Alzheimer's and is a flight risk. If you see resident unattended, please escort her back to the memory care unit. Under no circumstances should you open a door for this resident.

or something more benign, like:

RESIDENT NAME: Mrs. WhoDat
[another google result for Grandma]

ATTN: Diabetic
DETAILS: Resident is noncompliant with diabetic diet. Offer her the "special" pie and do not say it's sugar free. Resident will stay at table and order multiple lunches. Call nursing staff if this happens. Small portions only.

For whatever reason, these fliers crack me up. Especially when a lot of people have been rebelling and the walls are practically plastered with them. The kitchen always has a lot, saying who needs thickened liquids (ew) and who needs their food mechanically softened. But when the back door to the facility starts getting filled up, you know it's been a long week!