While I’m trying to get an interview with full-time x-ray employers (only one for per diem so far besides the part-time job I have), I’ve opened up my job targets to include, well, anything vaguely medical in the immediate vicinity. Mikey gots bills to pay. Today was my first day as a care-giver at a dementia facility. That means change, dress & feed, for 10 bucks an hour. It’s good exercise, and challenging to get people whose brains don’t work properly on your side so they will be cooperative. The residents deserve dignity. It is, however, impossible to do this job in an entirely dignified manner. You can do it joyfully and efficiently and properly, but there’s no way to make wiping grown-ups feel dignified. It is honorable work though, and even fulfilling.
There are many kinds of dementia, and different ones are represented at this facility. This is a lesson for me in communicating effectively when words don’t always have the expected effect. There are 27 residents in this care home currently. Only about half of them understand verbal requests, and can respond intelligibly. One-quarter respond in what’s called word-salad. They will appear to listen (and perhaps they are) then respond with words that make no apparent sense.
I asked one lady if she wanted applesauce. She said, “Fine, but tick-tick unless you get to stand up, stand up.” Another woman (who loves music) drifts in and out of a dream-like lucidity. Her diction is clear, but she will speak non-sequitors in response to no one visible. She ate a piece of cake at lunch, sat motionless with her eyes glazed over, then said calmly, “That’s not very nice.” She then got up and began to wander the hall with her head cocked to one side. It’s not the same as insanity. It is more like un-soundness.
Part of dementia is having clear moments that are too brief to guide the person for long. One man everyone calls “Doc” acquiesced to being showered and dressed with barely a word or nod. Then in response to being asked whether he wanted to go down to lunch, Doc replied softly, “I just go where they tell me.” A charming wheelchair-bound woman with an impressive vocabulary tossed a lot of word-salad until she stopped for a moment, sighed heavily as if she understood her condition with complete clarity and said, “I’m so dormant now.”
Some of the residents were highly educated and intelligent. One lady of that sort has learned how to have a kind of control in a life she largely can’t control. She offers a never-ending list of requests in a whisper. “Would you put these two tissues over there by that glass?” “I want to wear the vest I had on before.” “That’s not a good color. I want my other lipstick.” “I want my chair closer to the table.” “Not that close.” “The blinds are glaring.” “That’s too dark now.” She also follows rituals in sort of an ocd fashion. It’s always two tissues, two on her lap, two for under her room key arm strap, two more closed into her spectacle-case. The care-giver must follow an elaborate procedure involving the speed and direction of her wheelchair into the bathroom, and how to transfer her to the toilet. These rituals make her more comfortable.
I don’t know if I can possibly afford to keep this job. I’m still in my orientation period and the benefits package hasn’t been explained. However, if I can manage somehow, I do want to keep doing it. Maybe I’ll win the lottery. Maybe my wife’s 99-year old aunt (who has dementia) will die in time to leave her something. Maybe I’ll only do it until I can’t physically lift people any more. Or I’ll just become a saint.
Invisible Mikey 
I think from the people I’ve known with Alzheimer’s it’s one of the worst diseases that can happen to a family. It must be awful to forget how to walk, not know who people are, live in the present for 15 minutes and forget it all again, all the while still being able to feel emotions. And it must be awful to be the caregiver of someone who doesn’t even remember you’re her son or daughter, plus the constant care they need would be overwhelming. You’re doing a wonderful service for these people and their families, especially since many people who work in nursing homes obviously don’t care or at least treat them like small children. Great post!
Burn-out is a huge problem for care-givers, and one of the signs of it can be a retreat in external compassionate behavior in order to protect one’s own sanity. The realities of the job are in conflict with some people’s view of life. It isn’t in conflict with mine, so I found the work fascinating and quite uplifting.
There is more of an upside to dementia than I had time to make clear in this post, and I’m dedicating the next post to that. For now I’ll just offer that while it must indeed be difficult for those who knew them before, for us and the people with dementia it is not depressing. We know and relate to them as they are now, and most of the time they do not remember how they used to be or even that they are forgetting. It just happens.
A subject very dear to my heart.
My greatest fear is losing my mind. It’s something I’m coming to terms with, as I think it is almost inevitable. I simply have this feeling that at the speed my brain races, it’s gotta run out of gas at some point. The accelerator already feels a little sticky.
It’s reassuring to know there are people such as you, willing to wipe my … nose, when I can’t remember what a tissue is.
You can have two tissues, if it’s of comfort to you.
For myself, I would only fear being in a state like this at my own home, alone, where my own behavior would endanger my well-being. This facility and ones like it are safe harbors.
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Mikey, what a great post. I love how in such an apparently short time you have come to understand some of the inner workings of your charges. How the rituals comfort them, how they need to feel some control. Indeed, they sound a LOT like children. I think if we treated adults the way we are supposed to treat children — the way I endeavor to treat my daughter — we’d be treating them pretty well. Dignity is the key. Even children (and especially children) know when they’re being dissed. These people seem like children who’ve had a lot of experience. I know you will treat the residents there with dignity because it is so patently your goal to do so.
It is a worthwhile challenge to understand these people and their condition, so I’m fascinated. But I’ll write more about it in the next post. Glad you are enjoying the tale. I’m enjoying living it.
A good friend of ours has this awful disease, He’s being nursed at home by his wife and a relative and is still in the moderate stages. Worst of all he knows when he’s lapsed and hates it. We visited when were were in NZ and our whole visit I was “Claudia” (My real name isn’t even remotely like “Claudia”) You know, who cares? if it make things easier for him that I’m “Claudia” then I can do “Claudia”. He Skipes us here in The Netherlands and sometimes fades halfway though a “visit” , and suddenly won’t remember us, and then it floods back and he apologises perfusely becuase he knows he had a “bad moment” . We try to make sure that he knows that we don’t care about the lost moments, that he need not constantly apologise but that we love and accept him exactly as he is. He is naturally (always has been) a very very gifted comic, and he has a wit and turn of phrase that can leave you hurting because you laugh so hard, I’d adore to do an interview with him on YouTube but naturally his condition makes it impossible now. I’d *never* want to put him in a position where his lapses could a point of ridicule to the merciless.
I can only hope that if he gets to the point where he can no longer to cared for at home (he married a far younger woman and she’s still working and they have no children together) that if he needed residential care that there would be someone like you to look after him, someone for whom the patients are human beings and not just “Him in Room 14″….
Excellent job, both in on the post and in the workforce…
Thank you for sharing your personal experiences, Kiwi. It’s quite moving. The job is doing more for me than I’m doing for them. That’s why I hope we can get by on less money. I have the right wife too. She sent me an email after reading this supporting my decision, and saying she’s willing to try.
You have to DIE to be canonized, mister. As the, uh, official Catholic, I feel the need to mention this. O:)
I’m “Catholic Lite” by habit (Episcopalian). All the ritual (the mass, eucharist etc.), but only half the guilt. It’s the Catholicism made up by Henry VIII to allow him to get remarried often enough to have a male heir, who died young. His daughter Elizabeth I worked out better. We therefore get married priests, gay priests, women priests, sex ed and contraception, pro-choiceness, nobody has to be celibate, and ANYONE can be a saint – living, dead and non-Christians included.
…and HAPPY BIRTHDAY! (Cat just turned 17.)
— I’ll pray for you.
Well, aren’t we little heathen Anglicans so freakin’ special? Hahahaha. One of my best friends is Episcopalian, and there’s an Episcopal coed private school a few minutes away from mine. So whateva, been there, done that. Trying to be both, are we? Protestant and Catholic? PICK A SIDE. Hehe I kid. Oh, and my birthday’s not until Friday, but thank you! 😀
Cool. I’ll pray for your survival until Friday, and your success after.
I choose – ALL sides! (Nothing I enjoy more than a good reversal of exclusivity doctrines.)
AND as a card-carrying surrealist, I shall bear a sign saying:
“If You’re Against Us, You’re With Us”
I am not looking forward to old age, but who ever does? Your post reminded me of my grandmother, she used to do the word salad. But the most disturbing conversations were when when she’d talk about how her parents came over for dinner and how much they liked the chicken cacciatore. Very eerie.
There are good stories upcoming on this topic too.
Her parents did come over for dinner. We just don’t know when, and “when” becomes irrelevant once your brain indexes all memories as if they were current experience.
She would say “last night” or “over the weekend”. Her concept of time was completely warped.
In a way, it’s a real blessing. They do not remember themselves as they used to be – they are as they are now, and that is how we relate to them.
Hello Mikey, Has the facility you are working at ever given you dementia training? There are many things that caregviers can do not only to improve the quality of life for people with dementia, but also to make their own jobs easier and more rewarding. Sounds like you are already trying to do this but if you have not had it, dementia training would help a lot.
For instance, I find that putting yourself in the place of the person who is confused helps you to figure out what they need or why they are behaving the way they do. Think about how you would react if someone said they were going to toilet you or shower you. What would your emotional response be? Add confusion on top of that and it’s understandable that you get a variety of responses from cooperation to combativeness.
Learning how to approach and handle people with dementia can lessen any negative responses and make your job even more rewarding.
Stephanie
Kissesforelizabeth.com
Hi, Steph. Thanks for reading. I put the links in the forum in case you might enjoy a story arc on a similar topic, but these posts are not recent. This first one was from April of 2010. There were enormous changes over the nine months I wrote about it. But I don’t want to spoil the story, because it’s uplifting.
Every caregiver in the facility where I used to work received 90 days of dementia training using state-provided materials and lectures by the director (who was an authority with 30 years experience), but it began the day you started working, so it had just commenced when this was written. I later got an additional 90 days of nurse delegate training specific to dementia.
I began the job with gerontology classes and units that had been part of previous training and work as a Medical Assistant and as a Radiologic Technologist. None of it prepares you for doing the job, in my opinion. Theory is a universe removed from practicum. I learned more in a week working with experienced caregivers, some of whom were high school dropouts. Certainly none of them were previous college grads, as I was. They were really superb in relating to residents and fostering their ADLs.
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