$25.00/hr - An Addendum to "I Can't Get It for You Wholesale"
    A while back I discovered one of the prices (representative, I imagine, for area) being put on hourly caregiver labor, which can include almost anything avocational caregiving includes. The price came from a New York Times article published February 9, 2006, called Aging At Home about a community program that promises to be the "coming thing" in home care for the elderly and infirm. Beacon Hill Village is the neighborhood non-profit organization to which one can belong, within a circumscribed community, that will be your on-the-spot caregiver, for dues. The model is being lauded across the country. Beacon Hill Village will soon be publishing a how-to manual for other communities. As of the writing of the article, dues for the Boston community ranged from $550/year for "an individual" to $780/year for "a family". This, and you get to stay in your own home. "A la carte services", also referred to as "Concierge Service", are extra, although "discounted". "The cost of an aide," the article mentions, "about $25.00 an hour, would be prohibitive for many."
    I'll say. As far as 'round the clock care is concerned, "...as an organization, Beacon Hill Village made an early decision, for financial and legal reasons, not to own real estate or directly provide medical care. Thus, it has no homegrown solution for members who cannot stay at home." Or, for that matter, those who need a round the clock presence in the manner in which avocational caregivers serve.
    The point is this: Finally, an hourly price is being assigned to what I do: $25.00/hour. This, of course, is a to-the-organization cost. It includes profit, all taxes and the cost of hiring the employee, who probably makes anywhere from $10.00 - $15.00/hour, depending on experience. Still, that's a pretty penny. And, if I was contracting out as a self-employed "Concierge", I'd certainly charge, to me, what the organization is charging, in order to cover all my business expenses.
    I'm beginning to get the sneaking feeling that if we want to focus on taking care of our citizens within our communities and families, we are going to have to come up with another economic model within which to do it. Capitalism isn't safe and, anyway, it isn't working. While it's true, the per-year dues for Beacon Hill Village is not "prohibitive", the basic problem of what to do when a care recipient needs in-home community has not yet been breached, except by nursing homes and the odd subculture here and there.
    In the meantime, no one can afford me.
- posted by Gail Rae @ 08:36  0 comments   email...this post

 
Paying the Bills
    You know my situation: I am the sole caregiver for my Ancient One mother. I pledged myself to her as her final companion in December of 1993. My level of care for her has gone from sharing a household and a sense of family to me doing just about everything for her, including being her (very assertive) medical advocate, handling all her life business and setting up and putting to bed her life for her everyday. I remain her main companion, her main stimulation, her main human connection with life. I am my mother's sole, full time caregiver. I do it all, including being her personal maintenance director, which includes such jobs as:

• operating as her thirst;
• setting her on an accident free visiting-the-bathroom schedule;
• reminding her, several times a day, to blow her nose;
• maintaining both her sense of humor and mine over how minute and thorough is my invasion into her life, now, to the point of being directly responsible for whether she lives or languishes.

    The level of care my mother required racheted up very quickly beginning in 2000; although, by this time, I had already taken over her personal business. Medical affairs became involved. By the midpoint of 2001 I was foundering in trying to handle everything, including the personal, human detail of tending to someone who is old, ailing and isn't sure what physical or mental faculties she retains. One of my sisters, thankfully, noticed my predicament and, without judgment, began to coach me on how to solicit family help in order to make things easier on me.
    There are a flurry of historical posts, listed below, describing this period in detail:

1. Communicating Relief
2. Relieving Communications
3. Just an Example
4. Continuing Saga of What It Will Take

    Over the days in which the above emails were exchanged, MFS and I addressed, in detail, how to solicit family help, who we thought could best do what and how to rally the family. During this heavy duty organization, MFS volunteered to take over paying our bills, probably because I had lately and briefly gotten behind on paying bills and mentioned this to her. This was only a momentary aberration, though, connected with loads of other hectic business stuff with which I was suddenly struggling. I was a little surprised at her offer. I mean, no matter how bad things get, one can always pay one's bills; and, besides, she was in Florida, it would have been silly for her to be paying the bills for a household across the country within which lived someone who was alert enough to do this. After some consideration (maybe I was missing something here, I thought), I declined her offer but met her head on with a detailed list of how I would like various members of the family to help out: Such duties as taking over the handling of her stocks and twiddling with her financial profile to keep it healthy; taking over the handling of her taxes (which were challenging, at the time); taking over medical management (this was before I jumped into it feet first, but was still flirting with it; I was still feeling, though, that I would be damned if I became that familiar with her affairs); handling her military status and its effect on everything else in her life. Once I had given the matter of my mother's life and my caregiving some thought, I composed a list and even approached family members, individually, hoping to solicit the best qualified member to each task.
    Almost five years later, I am doing everything alone. How did this happen? I didn't ask this question until recently, provoked by a chance caregiver-article scrounge in which I decided to catch up on The Literature. I happened across an about "Involving the Whole Family in Caregiving". [9/15/2013 Update: This article seems to no longer exist on AARP's website. The entire, article, however, is available as a reprint here, at least for the time being. Scroll to page 2 to access it.] In reading it through I stumbled over the sentence: " A sibling who lives far away can still help with jobs such as paying bills, talking with doctors, researching local agencies, or calling regularly."
    Oh, I thought. That's where she got the suggestion of paying our bills. It was bizarre, but, it was a thoughtful suggestion in the middle of a thoughtful article respectfully encompassed within The Literature; The Literature about helping Mom or Dad to remain independent as long as possible. The thing is, our Mom was, by that time, long past independence. I vaguely (not well enough to reference, I'm afraid) recalled reading another article, some years previous, remembered because the following suggestion to caregivers and caregiver-helpers alike shocked me: Don't do anything you don't want to do, or you won't do it well and you won't enjoy yourself in the role of caregiver. The example used was: If you cannot face changing your Ancient One's diapers (which, admittedly, isn't nearly as sweet as changing an infant's diapers) hire someone to do it. No wonder, I thought, between the two Advisements of the Day, I had people volunteering to do things it's easier to do myself and people refusing to do jobs with which I was sure I needed help.
    I am living proof that it is not enough, as a caregiver, to try to never refuse offered help; to have a list of alternative jobs to offer if the offered help isn't necessary; to outright ask specific people for specific help for specific reasons. Now, we have to contend with potential caregiver-helpers deciding, under professional advisement, not to do anything they feel uncomfortable doing; to set up very specific safe zones and stick to them; for their protection.
    I didn't need help paying the bills. I needed lots of other types of help. I was specific about the help I needed. I explained situations in detail and how things in various areas had been handled up to the time of the need for help. The best I got were suggestions of how to make the task easier on myself (suggestions I had invariably already put into use); one sister fishing out needed military files which I've since used to conduct Mom's military business; to be fair, one offer to help me go through files, which I willingly threw to the winds in the name of enjoyment when that sister arrived here...by that time I was so sick of hearing about how to help myself, since I wasn't going to be getting the help for which I was asking, that I decided a vacation was in order.
    So, see, the thing is, if you are a potential caregiver-helper and live long distance from the caregiver and care recipient, it's important that, if you want to help, you initiate the situation with an openness to expand your boundaries and find out what you have to offer, rather than dictating, ahead of time, only what you think you can offer. Think generously with a willing-to-be-challenged attitude. Be open to giving more than advice; chances are the caregiver with whom you are dealing is aware of the advice you have to offer. Give time. Give involvement. Consider the overwhelming adjustments the caregiver has made and be willing to allow your life the flexibility to adjust for the inclusion of your family caregiver and The Beloved (By All) One To Whom Care is Being Given.
- posted by Gail Rae @ 18:59  0 comments   email...this post

 
Why I Hate the Word "Respite"
First, a definition:

Webster's New World College Edition Dictionary of the American Language © 1968
res·pite (res´pit), n [ME & OFr. respit; L. respectus; see RESPECT],  1. a delay or postponement, especially of something disagreeable; specifically, in law, postponement of the carrying out of a death sentence; reprieve.  2. an interval of temporary relief or rest, as from pain, work, duty, etc.; lull  v.t. [RESPITED (-id), RESPITING],  1. to give a respite to.  2. to delay or postpone the carrying out (of a punishment, etc.).

    With that, you'd think I need go no further, right? Reason to hate the word "respite" seems to be laid out.
    The first time I heard this word in connection with caregiving was a few days previous to 3/17/01, uttered by MPS, who was telling me that if I felt the need for, here is comes, "respite", she and her husband would not be able to provide it for me. Her husband, it should be noted, is an organ transplant social worker who has more than a nodding acquaintance with caregivers to the infirm. Thus, I shouldn't have been surprised at hearing the word in this context, but I was. I'd been so busy giving care that I hadn't had time to become familiar with caregiver-speak: I hadn't yet read any of The Literature; I was more than two years away from attending a Caregiver Conference; most of what I was reading was medical stuff, after having been abruptly ushered into the world of caregiving for An Ancient One whose health was quickly declining into a state at which it would later plateau, but I wasn't yet used to medical advocation.
    Although I was the only one in the room when MPS spoke THE WORD, I wasn't sure she meant it for my ears. Respite? I remember thinking. Jeez, that makes it sound like I'm digging ditches on a chain gang! Uncanny, considering that I hadn't bothered to look up a definition of the word until today, thus I'd only had cultural context within which to interpret it. I denied that I needed "respite" at that time, but I was grateful that related people were keeping an eye on me, in case I should founder. I mean, if I'm doing something from which I will, at some time, feel the need for respite, chances are I will founder, right?
    The problem with the word "respite" isn't just what it implies about what caregivers do, it's what it implies about what the "respite worker" is going to have to do: Take up the cross and the punishment until the caregiver "has the strength to carry on" or, more likely, when the respiter has to get back to his or her life, one in need of breaks, true: Dates, babysitting, time off, vacation, but, you know, not respite. A normal life of caregiving, for spouse, for children, for family, isn't punishing. We all agree with this, and act as though we do.
    Everyone seems to know, though, and agree that caregiving for The Ancient and Infirm is so onerous that one needs occasional "respite". And, I mean, you know, yes, "she obviously needs respite", but, tell me, who's crazy enough to "take up the cross and follow me"? No one except someone dedicated (as in dedicating one's life to a spiritual ideal) or paid to the task. "It takes a special kind of person..."
    It is interesting to ponder that when prisoners are granted respite from their duties, when someone sentenced to death is granted respite, no one "fills in". The chain gang is just down one hand; the executioner is just down one murder. When a caregiver receives respite, though, the "respiter" voluntarily agrees, according to our cultural wisdom, to take on the "punishment" the caregiver has been experiencing.
    Why, I have to ask, is caregiving for the Ancient and Infirm considered a punishment that must be relieved, rather than a/n a/vocation that deserves a vacation? Why do we think, all of us, somewhere under our better beliefs and intentions, that taking over for a caregiver to An Ancient or Infirm One is akin to entering the last, worst Hell of the Caregiver's Inferno?
    It has to be because no one that anyone knows has ever delighted in caregiving to the Ancient and Infirm; thus, we have agreed that one can't delight in this type of caregiving. Not only this, but, woe be to the unlucky soul who "respites" the caregiver. It is understood that this will be one of the heaviest of tasks of providing relief. "Don't do it if you don't think you'll enjoy it."
    I've learned from A History of Old Age [published in England as The Long History of Old Age] that, as far back as we can trace, taking care of the old has never been considered a delightful task in Western Civilization. The luckiest of the old have always been those who can take care of themselves or somehow set themselves up, usually accidentally, throughout their life to accord the respect of being taken care of in advanced age (which usually requires both money and prestige); there have been many of these. There have also been more than a few independent Ancients among the less well-to-do, the commoners. Although taking care of one's elders within the family was often considered the right thing to do, it was rarely legislated. Our "memories" of past Southwestern European family units consisting of several interlocked, inter-caring generations is largely a myth. It seems that as soon as any population in any Western European country began to prosper, the family unit split into nuclear subsets to allow everyone a little more privacy. Poverty was the primary distinguishing feature of the inter-generational family.
    Caring for our old is something we're going to have to decide to learn anew. We don't have any honorable tradition; just honorable intentions. Entering into the life of An Ancient One in the same way we enter into the lives of our infants and toddlers, allowing our Ancient Ones' lives to enter into ours in the same way we seduce infants and toddlers into the family, are skills and situations for which we need to find intrinsic value and favor, which we can only do if we're all exposed to them, all around them, at some point in our lives.
    Whether or not we have within our social purview cultures that have lessons to teach us about embracing our old, we need to approach the activity as though this is New Stuff, because it is, to many of us. It would go a long way toward breaking through to the beauty of caring for our Ancient Ones if we could break through the hardwired cultural knowledge that caregiving is a "punishment" that requires "respite".
    I'm closing with another definition, one to which one is referred when reading the definition for "respite":

Webster's New World College Edition Dictionary of the American Language © 1968
re·spect (ri-spekt´), ...n [L. respectus;, a looking at, respect, regard pp. used as n.]  1. a feeling of deference, honor, or esteem...  2. a state of being held in honor or esteem...  3. consideration, courteous regard...

    Consider that, in Latin, the words "respect" and "respite" have the same root; as if to imply that adequate "respite" should involve esteem, honor, conscious attention, certainly deference, perhaps even celebration, of not only the caregiver who's being relieved but the Ancient One for whom we are caring.
    This is new territory for us rugged individualists: To learn to enjoy protectively, yet lightly, embracing our Ancient as they journey out of this world, as much as we enjoy the cradling, then the releasing into the world of our infants and toddlers. It is as though the majority of us are descended from ahistorical cultures who abandoned their old. It's going to be a long, messy road, I'm afraid, but I think the first thing we can do is this: Every time we use the word "respite" to describe what we should be providing for our caregivers, even if we are forced, by time constraints, to use this word, we should think about what we are saying in its name and whether we want our perception of elder care to be so onerous as to be in need of desperate respite. Breaks? Yes. Regular breaks? Absolutely. But respite? Only the condemned need respite. If we perceive our caregivers as condemned, perhaps we need to consider that, by refusing to help them as often and generously as possible, by stepping away from our caregivers, washing our hands of even knowing our Ancients for whom our caregivers care, then thanking our caregivers for relieving the rest of us of what we consider to be impossible tasks, we are the jury condemning them. In which case, we should do better than simply offering respite. We should reconvene the jury.
- posted by Gail Rae @ 13:55  0 comments   email...this post

 
How To Be Where You Are
    I've written this essay every day in my head for some time as I go through the processes (usually well ordered) that involve taking care of my mother. This repetitive mental writing began some time ago after I read an article, courtesy of Caregiver.com about the importance of 'mindfulness' as one gives care, especially intense needs care.
    I've read stuff like this before and never paid much attention, for two reasons:

1. I practice a natural, seat-of-the-pants mindfulness, anyway, and have brought that quality to my caregiving, and;
2. These articles never make much sense. They make the reader think that one must reorder one's day and mind and then one might be in the proper frame of soul to begin the practice of mindfulness.

    Phooey!
    Mindfulness, whether it be Buddhist mindfulness or practical mindfulness, begins with a technique that is very easy to talk about without mentioning nirvana. It helps, in considering and developing this technique, if one likes to be interested in what one is doing at the moment, but it isn't necessary.
    There are three key concepts to keep in mind in regard to Being Where You Are Now (call them "The Three F's", if you will):

• Focus:    This does not mean you have to deep breathe, transport yourself to a meditative safe or happy place, you don't even have to slow down. Focus means just this: Take a look at what you're doing and where you are every moment. Notice what's going on. Are you bathing your care recipient? Take advantage of this time to really look at her body, become familiar with it so that you'll do a better job of cleaning, treating skin conditions and noticing 'irregularities'.
      When you notice what you are sensing and allow conscious attention access to that information to guide you through what you are doing, you will automatically be present. You will find, as well, that your present will include calm projection into possible futures.
      This is probably, by the way, the most important "F", so let me give you an example of how easy it is to focus:  I make my mother's bed every day. Sleeping is important to me as it is to my mother. I long ago began autonomically taking color and temperature into consideration when clothing 'today's' bed. I soon began taking texture into account. The most important criterion when making her bed, though, has become the color combinations of the sheets: Light clashing when I want to stimulate her through her nap; blue sky or blue country ensemble when she needs help relaxing; combinations of pinks and greens, pinks and purples and greens, pinks and beiges, when I want to stimulate healing and general alertness; yellow, orange and green when I want to reward a good movement day; purple and yellow when I want to stimulate deep self-attentiveness and muscular tone; lots of white when I suspect she will be dreaming a lot (my variation of the Buddhist "empty walls" concept).
      I did not make myself do these things. I projected my own sensitivity to color onto my mother, made some observations on the fly, empathized with how good it feels to fall into the perfectly appointed bed when one retires and, now, whenever I make her bed I have all this handy.
      This attentiveness, this focus, can be practiced with ease during any activity. You probably already do it with those chores you enjoy. Try doing it with those you don't. You'll probably end up liking those chores more.
      I can't promise you that time will fly. If anything, it will become syrupy because some of your focus will involve trying to live out of your loved one's reality, for the moment, especially if you're dealing with dementia.
      I can also tell you that focus in the moment promises that you will never get stuck in the moment. Another moment will impress its circumstances upon you and your habit of focus will continually bring you forward in time.
      This is the technical way of talking about the 'mysterious' power of mindfulness. It's not mysterious. In order to utilize it to its fullest, though, you must be aware, first, of what mindfulness is, in plain speech, then you must realize that you already do it, thus considering the possibilities of purposely doing it.
• Flexibility:  Always be ready for the curve. Expect it. As a friend of mine told my brother-in-law when passing on information about proper attitude when driving a motorcycle, "Don't think, '...if I have an accident...', think, 'when I have an accident.'" It's not emergency thinking, it's preparedness.
      Some of it is knowing that you will automatically shine in a crisis moment; it's inherent in the nature of being human. Then, let your situational mindfulness notice each environment as you and your care recipient move through it and anticipate other scenarios under impending circumstances.
      Remember, too, you don't have to stop and breathe when a crisis happens. Trust your body to pull you into the amount of presence you need by automatically adapting your breath. Later, if you want to practice breathing exercises, that's fine, but, to begin with, let your body tell you how much it already knows.
• Forgiveness (immediate, both of self and others):  Know that you will never always be in the moment, that is, you will never always be mindful. Forgive yourself ahead of time, then forgive yourself again when it happens: When you fall into the past/future time zone, fret and become irritated. Know that this will happen. Be prepared to step back, in the moment, observe your irritation and what it is causing you to do, remember that change is constant and in a few moments you will no longer be irritated...and continue doing what you're doing. Apologize to others, as well, if you snap. Keep it simple: "I'm sorry for doing thus and so. I'll try harder next time." Be confident that you will; mindfulness ensures this.

    I do appreciate the growing "mindfulness" in the Caregiver Industry that is prodding people to talk about helpful spiritual disciplines. Unfortunately, most of the people who write about these disciplines forget to write about them realistically. They don't answer such questions as, "What is this, really?" and, "Come on, how do I do this when I'm at the sink, about to spit-bathe an 88 year old? Do I have to wait for my personal mantra?"
    Nope, all you have to do is look outward, at your situation, your companion, your role; this is how you really do it. Close, in the moment, nonjudgmental attention. What's that pattern of varicose vessels on her back? Does this look normal? At what temperature does she like her wash cloth? What about her eyes? Cold water compress this morning?
...and further...
    What is her presence in the day saying about possible food choices? Is today an indulgent day? What about right now, this meal? Do I need to saute a savory dinner to tantalize her into alertness? Does she want comfort food? What are her stats saying about what choices I should make? What about water retention? Is she moving a lot? Will she? Should we make room for that?
    It's just plain old paying attention. Without the New Age sound effects. Same thing. Different level of approachability. You already do it. When you allow yourself to be conscious that you do it, you will be able to bring the technique forward on demand. If you want to imagine yourself as the Dalai Lama or Carlos Nakai, fine. Just make sure you're imagining them "being here now".
- posted by Gail Rae @ 09:50  2 comments   email...this post