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Prism Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:03 AM
Original message
I'm a caregiver in need of advice
I'll try to make the details as vague as possible.

I'm an employed caregiver for a disabled patient. Their motor skills are severely impaired and they require care during most if not all of their waking hours for even the most basic motor tasks. The patient is allotted a certain number of hours per day of paid care by the state. Suffice to say, at least a third of my working time is unpaid. Which is fine. I very much care for the patient's well being and want to make sure they're all right at the end of the day rather than clock-watching and scurrying off as soon as the alarm hits five.

But. (there's always a but)

I would venture to say at least a third of my caregiving time is allotted to the patient's religion. I have no objection to the particular religion (I'm indifferent/agnostic). It's not that the religion offends . . . it's that the patient believes it promotes healing, so it's given a very heightened importance and priority in our everyday routine. I'm paid by the state to pretty much facilitate pointless religious nonsense in the name of healing.

Again, I don't particularly care in that I'm offended. I'm not. It's just not my thing.

But, the patient is constantly riding me about time efficiency and how to streamline their life and how to condense routines. And what I want to say is "Well, if we didn't spend two hours a day on your dream journal . . ." but I don't, and I can't. I don't want to insult this person's religion, but their religion is completely eating our time alive. Their useless 20-pills per meal routine based on pseudoscience on the internet is destroying any extra time we might have for extracurricular activities.

I spend more time accommodating religious, pseudo-scientific nonsense than I do actually attending to the basic functions and obligations of care.

But how does one say that? I like this person, I like this job, I'm happy to work extra unpaid hours to ensure their comfort and well-being. But they're asking me how to streamline their life, and I look at this religious, half-science nonsense, and I really want to say something, but I figure the second I do my job's in peril.

How does a caregiver for a disabled person politely, encouragingly explain that their religion is intruding upon their care? Again, I like this person, I like this job, I'm fine doing whatever, but they want to know how to make their life run more efficiently, and I can't think of anything more inefficient than the hours we spend consulting with their oversoul and past lives and vitamins and shaman healers. I think it's actually hurting rather than helping, but I have a duty, don't I? To go along with whatever?
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Demeter Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:09 AM
Response to Original message
1. If your brisk professional personality dominates
Edited on Tue Oct-19-10 07:12 AM by Demeter
you could channel priorities so that the nonsense never gets to the top of the list.

I have the same problem with my disabled child. I have to break her obsessions to deal with real issues. It is a constant struggle. The fact that I'm more stubborn and have the power (and concern) makes it possible to get the necessary stuff done first.

In other words, I'm a "mean mommy." It's that or decline and despair.

On the other hand, I have another client who wants me to do socializing. She is desperately looking for intellectual socialization. I can talk and wash dishes at the same time.

My daughter has the worse mobility problems, the client is elderly and arthritic and not very strong. Both need care, but my client is sufficiently "with it" to not be unrealistic. So I don't let it bug me.

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Prism Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:42 AM
Response to Reply #1
12. But it's put at the top of the list deliberately
Our morning routine is literally "pluck out of bed, engage religion." I mean, the religious stuff comes even before breakfast. When I passingly mentioned that perhaps this one to two hour religious stuff just might be affecting the patient's care, I was met with a strong objection from the patient's mother. It's not a side project. It's central. It literally destroys half our time together. I'm always doing something that is somewhat related to it all. Every routine is permeated with superfluous (IMO) steps that are totally pointless and unnecessary to the task at hand.

But that the same time, I'm kind of the patient's proxy. Whatever they want to do, I'm to do for them.

So it's this tension between the two modes, as mindless proxy and thoughtful caregiver. Which side to pick?
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mdmc Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:10 AM
Response to Original message
2. Religion is their care
We all die. What we do while we are here is what matters.
It sounds like your client needs a higher level of care. If you got a great job in the Obama administration, another provider would come in, and another provider will not work for free.
If your client is like me, they might think that watching comedies and laughing are the most important use of their time. Your client thinks religious healing is important.

So do the religious thing with your client. And try to do only what you get paid for. If that is not enough the client either needs more hours or a higher level of care.
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Prism Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:20 AM
Response to Reply #2
6. It's not that exactly
The thing is, I'm the best attendant this patient has. I'm on time, work all the time (4x more than any other attendant), and fill in for the other attendants who are unreliable and indifferent at best (Working 10 days straight without a day off is weirdly usual for me). It's not that I fear being replaced by a more competent caregiver or by the state, it's that I feel my personal opinion about how best to manage time will be offensive and adversarial to my patient's religious views.

It's that my patient wants a lot of things within a limited amount of time. They want their religious stuff, plus X, plus Y, plus Z. And to get that XYZ requires a severe curtailing of the religious activities and internet pseudoscience, but I don't know how (or even whether) I should broach that kind of topic.
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mdmc Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 06:18 PM
Response to Reply #6
17. don't broach that kind of topic
do what s/he wants, and offer an opinion on the best use of time when asked.
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BootinUp Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:11 AM
Response to Original message
3. Your OP is very nicely stated
I thought I would throw in my 2 cents. In order to displace the pseudo science stuff with real alternatives, the alternatives would have to be presented in a positive way that shows how effective they are or were for other people. In other words, not by attacking the pseudo science. On the religious stuff, it has to be up to the patient to make any changes to those routines, they might be willing to adjust the routines if something else seemed to be working for them.
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Prism Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:30 AM
Response to Reply #3
10. I should mention some additional information
The patient has a mother who is very, very, very into this religious stuff, and she is constantly pushing it onto the patient and myself. (She actually makes requests of me to perform religious tasks for them in order to facilitate the patient's healing). So, it isn't only that I'd have to sit my patient down and have a talk, I'd eventually also have to have a serious conversation with the mother who is very much a True Believer about these things.

I don't want to mess with anyone's religion. I understand people believe what they believe, and I'm loathe to really bother about it in the slightest, but they keep asking me about my genuine opinion about my patient's care, and I'm at the point where I feel like I'm lying through my teeth so their religion can be accommodated. It doesn't feel right, but at the same time, I feel I just might actually be fulfilling my obligations. Maybe that's all I should do.

But something seems off to me, still.
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CBGLuthier Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:13 AM
Response to Original message
4. You don't. You do NOT have that right.
You should keep your bigoted opinions to yourself.
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Prism Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:22 AM
Response to Reply #4
7. I'm not a bigot
Edited on Tue Oct-19-10 07:26 AM by Prism
I'm very open minded. But when a patient is asking me my personal opinion about their best method of care, and we're currently spending many hours on New Age religion, I don't know how to form a correct answer. I've asked, straight out, how much my personal beliefs should play a role in this.

Would a bigot ask these questions?
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WhiteTara Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 09:10 AM
Response to Reply #4
15. there did not appear to be a single bigoted remark
in any of her posts. What are you trying to start? Just a little rumble early in the morning so you can ruin someone's day?
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HopeHoops Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:15 AM
Response to Original message
5. Keep a log of exactly how you spend your time.
After two or so weeks, present that log to your supervisor along with a summary of the summary you just gave (REALLY short - issue: complaints about time management; problem: the client). Use that as justification to either have the client realigned based on needs (self-inflicted it would seem) or to be reassigned. That kind of work is stress by definition. You don't need an additional layer.

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Prism Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:25 AM
Response to Reply #5
8. There's no supervisor
The patient is directly compensated by the state for care, the patient pays me directly, and the patient has ultimate say so in hiring and hours. I actually don't even know if I have any recourse outside of "I work for this person as a caregiver". (I'm sure I do, I know the actual govt. agency under which all this happens, but I only deal with the client in pretty much all affairs and details).

So, I'm coming at this like someone who feels they could be let go if the wrong opinion is given. And the patient does have a strong belief in their religion. Which is why I have, so far, said nothing at all. I feel giving any kind of religious offense is begging for dismissal.

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HopeHoops Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 08:08 AM
Response to Reply #8
14. Yeah, that's a tough call. The term "government agency" can by synonymous with "black hole".
Personally, I'd consider seeking out another client. What you described sounds like a no-win scenario, so you either have to just deal with it and shut off the feelings or move on. Obviously it has compromised your non-work hours or you wouldn't have opened this thread. That's generally not a good thing.

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Ineeda Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:29 AM
Response to Original message
9. This sounds almost like basic theory of money management...
If one has money problems (generally) you do one or both of two things -- spend less or earn more. The same can be said of time. (In other words, budget.) If your patient wants you to perform your essential duties while managing "time efficiency and how to streamline their life and how to condense routines," something's gotta give. Perhaps if you acknowledge the need to streamline (which is basically your complaint, too) and kindly tell him/her that in that effort, you will prioritize actual care, as it is the most important service you provide. The pseudoscience, religion, dream journal routines come after, both in time and importance. That's when you can "watch the clock" if you choose to.
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Prism Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:36 AM
Response to Reply #9
11. I agree, but . . .
It's the but that kills me. I doubt.

It's true, my main stated function is care. But . . .

The patient literally cannot do anything at all without a caregiver at hand. Their entertainment, fulfillment, distractions, and learning are all under various levels of my control. A typical shift might be "Get patient out of bed. Exercise. Dream journal. Feed breakfast. E-mail (?). Internet. Dress. Wash. Walk. Correspondence, lunch, miscellaneous task." Most, if not all, of the tasks are directly related to care. But then the religion kicks in, and it's like . . .how do I say "No. This is last." Especially when I'm told "Oh, they need to write their dreams right away after waking up while they're fresh in memory."

I could forego the dream journal, put my foot down, but it'd be a seriously crazy fight. All hell would break loose. They honestly, earnestly believe typing out one's dreams for an hour or two everyday is a path to healing a decade's long disease. What do I say to that?
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begin_within Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 07:54 AM
Response to Original message
13. I'm a full-time caregiver to my Mom.
My Mom is deeply religious and I take her to Sunday mass and frequent short visits to the church on weekdays. A lady from the church comes every Wednesday morning to give her communion, read a few bible passages to her and chat a bit. I think these help her mentally, they seem to make her happier since her religion has been deep and significant to her for 92 years. I notice when she is at mass, she is inspired to stand up (with my help) when she rarely stands up on her own at home. So in her case I think it has helped her stay alive longer and have a happier life. I think prayer is really a form of mediation that does have some calming, soothing effect on the brain and therefore has the health benefits of meditation.

Your case is much different, of course. If your patient belongs to an organized religion, I would contact that particular church and explain their situation to them. Most churches of any size have a Homebound Ministries program of some kind, for church members or followers who cannot make it to the church. What they do varies from church to church, but typically involves weekly visits to the homebound person, for whatever essential service (sacrament or just bible study, etc.) that they can't receive because they can't get to the church. If there is no such program, you might try to contact some other follower of the religion your patient belongs to and see if you can locate someone who will be willing to come over on a regular basis and provide that type of service to the patient. In my opinion your job is to provide the physical care and not the spiritual needs or care.

If the patient is a veteran of any U.S. military service and served during a wartime, there is a little-known benefit to veterans called Aid & Attendance, which can provide a significant amount of monthly benefit to the patient. The paperwork to go through to get it is a bear, and it can take up to a year to start getting the checks, but it can be a big boost financially (and the payments are also retroactive to the date the benefit was first applied for, so that 1-year delay is eventually compensated for). If your patient qualifies I would see http://www.veteranaid.org / for more information.
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Prism Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 06:20 PM
Response to Reply #13
18. You've given a very valuable insight about your mom.
I think I should take that into account. The religion may be a very required comfort for the patient, their way of coping, as important to their daily routine as much as drinking water might be for you or me.

I really should keep that close in mind, and I thank you very much for the reminder and insight.
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begin_within Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 08:04 PM
Response to Reply #18
20. You're welcome. I might add:
Don't work unpaid hours. The service you provide is valuable and there are other patients who would benefit greatly from your time and can pay for it. I know it's your business, not mine though. Just adding my 2 worth.
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Demeter Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 10:49 AM
Response to Original message
16. I think you lost control of this workplace long ago.
You can draw up a schedule with the important things scheduled, then point out where there is an opening for stuff that is not strictly your expertise. Then STICK TO IT.DO NOT STAY LATE FOR NO PAY.

These people are leeching off you and it's driving you crazy already. You don't need it to affect your physical health, too.

Why can't this patient dictate the dreams into a small tape recorder?
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Prism Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-19-10 06:29 PM
Response to Reply #16
19. The patient cannot speak reliably or more than a few words at a time.
It's full neurological impairment of motor function. So literally almost nothing cannot be done without some form of assistance. The only activity the patient can manage without someone there is walking around a bit (and even there, someone needs to help them stand and get them going to start).

I guess I'm just trying to find a balance and figure out what my role is as caregiver. This is a new career path for me, and I don't know where lines are drawn here. I have been, so far, very sensitive about ensuring the patient's life and desires are accommodated as much as is within my control, but the religion keeps throwing a massive monkey wrench into everything. Is it my place, as a caregiver, to say anything? Am I intruding on the patient's autonomy?

I think it's a matter of being hyper aware that I am, effectively, in control of this disabled individual for long stretches of time, and I don't want to do anything to abuse the trust or infringe on their autonomy as a person. I don't want to belittle their feelings or interests or choices while simultaneously feeling those things are really interfering with the quality of care I'm able to provide.

It's this odd little balancing act, and it's been troubling me since I took the job.
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jwirr Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-26-10 11:47 AM
Response to Original message
21. In this case I would find out if there is a person from his/her church
who can take over the dream journal and other religious activities while you spend your time doing the necessary work that keeps this person functioning. The church is pushing the issue let them handle the fall out. Be polite in the suggestion - it is not an outrageous request.
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