The Mom & Me Journals dot Net
The definitive, eccentric journal of an unlikely caregiver, continued.

Apologia for these journals:
    They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
    For an explanation of what these journals are about, click the link above.
    For internet sources that are about caring for relatives with moderate to severe
        Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
        links section to the right.

7 minute Audio Introduction to The Mom & Me Journals [a bit dated, at the moment]

Saturday, December 20, 2008
It's not sand.
    I finally realized, today, my head isn't encased in sand, literal or metaphorical.
    It's locked onto the image of her; That Girl; self-contained human from birth; highly ambitious and datable young woman; archer and markswoman; college student earnest to be college graduate; daughter; sister; cousin; niece; granddaughter; dedicated, charmed and charming elementary school teacher; Navy gunnery instructor and singular adventure seeker; woman in love; woman married; woman as mother; woman as Girl Scout; woman as matriarch; traveler; reader; thinker; interested in anything; taking everything in stride; durable; always optimistic; always wry; always learning; always seeking...reclining on her bed in her favorite sleep position, no longer asleep. That's the image: Her, all of her, dead, on her bed.
    The image frames every other image my eyes transmit; it fogs every thought, to the point that, after using my debit card three times, yesterday, without a hitch, on the fourth I forgot my PIN number; it hazes my windshield so I have trouble focusing on traffic; it plays through documents in boxes so that I have to continually remind myself of my sorting order and am never sure I'm following it reliably; it's causing me to accidentally leave crust on the dishes as I wash them, start a wash and forget to throw in the towels from the bathroom; I read and there she is; I watch television and there she is; I wander the neighborhood and I miss natural detail that might be refreshing because, well, there she is.
    It's not a horrible or disturbing image; in fact, she's peaceful, looking like no one other than herself. Except she's dead. The image is here, there. It causes me to switch from activity to activity before any activity is finished, not to get away from the image, I know I can't, but to get used to its presence. Everywhere. It's obvious there is no possibility for distraction from that image. It's my first awareness when I awaken. The last before I sleep. Sometimes, when I'm exhausted from working around it, I simply give in and meditate on it.
    Now that I know what I'm dealing with, well...hmmm...I can't yet extrapolate. I assume this is a standard part of grief, learning to live with that last image, working with it and around it until it settles into place among all the other images I have from her life, my life, our shared life. This is a new technique of concentration, for me, and it's hard. I expect I'll master it, but, right now, it's my master.
    I understand, now, how the concept of wearing a signal of mourning came about. People in mourning can be inadvertently dangerous. Good idea to be able to spot them. I'm considering making and wearing a black armband, as a courtesy to others.
    I can't say this grieving business isn't interesting, but it's one hell of a puzzle.
I just discovered that the evening of the day my mother died...
...was also the evening of the last episode of Boston Legal, a television show that my mother and I heartily loved and about which we heatedly and happily debated.
    Yesterday evening, after yet another period of doing after-death business for a couple of hours and becoming so overwhelmed (not crying, mind you, but sodden of spirit) by the fact of my mother's death that I had to stop and breathe different air, for awhile, I decided to catch up on missed episodes of Boston Legal that I'd recorded over the last some weeks. There were four episodes I recorded that we didn't watch, no doubt because it was somewhat over four weeks ago that my mother became enchanted with Hallmark holiday movies.
    I was astonished to discover that in the series finale, a two hour extravaganza of provocative opinion and situations, the two main characters, Alan Shore and Denny Crane, married one another. It wasn't the fact of their marriage that surprised me...if you've been watching the series their marriage was the logical next step. What surprised me is that, as I watched this story line play itself out, I realized that my mother would have loved nothing more than to be confronted with this resolution to Alan's and Denny's relationship and the episode would probably have provoked a startling quantity of conversation between her and me, during and after the episode. She and I fairly frequently discussed the fact that our relationship was far more like that of spouses than any conceivable evolution of the mother/daughter relationship...or, for that matter, the caregiver/care recipient relationship.
    This morning I searched through all sections of these journals looking for the word "spouse", figuring that, considering how often we discussed our relationship from this point of view, and, as well, how often I referred in casual conversation with friends and relatives to this aspect of Mom's and my relationship, surely I would have mentioned it in the journals. Oddly, I didn't. Maybe I was so used to thinking of us this way that it flew beneath my reporting radar.
    Never mind. As I watched the development of this plot I found myself nodding along with every point Denny used to, first, convince Alan that this idea was reasonable and, second, that Alan used to argue, before a judge, against an injunction that the "Massachusetts Chapter of the Gay and Lesbian League" had issued in order to stop Alan's and Denny's marriage. Although, superficially, economics and proxy were the two reasons most advanced by the two for pursuing marriage to one another, in the conversation surrounding this topic it was obvious that the two would not have considered seeking this union if they hadn't had such a strong emotional bond and didn't consider themselves partners in spirit. Mom and I fairly frequently considered that if we'd been able to have our relationship legally sanctioned certain aspects of our life together (which was also based on deep emotional ties, interdependence and interpersonal celebration) would have been easier, particularly my medical advocation on her behalf. I can't tell you how many times, including a couple of times during her last hospital stay, my Health Care and General Durable Powers of Attorney were ignored or overridden because this nurse or that physician refused to believe my version of our history together, my knowledge of her medical history and chose not to heed my recommendations on her behalf. In one case I was barred from being with my mother immediately when she reached the emergency room. Later, I was barred from seeing her chart because the medical personnel handling her case felt they were righteously protecting her from my interference. Although no permanent harm was done and both attempts at defense were eventually abandoned, a great deal of temporary harm was done and appropriate medical oversight and treatment were delayed because of this problem. As well, this situation led to missuppositions and blatant lies being written into her chart that have yet to be corrected. Had Mom and I been "married in the eyes of the law", I doubt these problems would have occurred.
    There is much to think about when it comes to the relationship between an elder and a younger related caregiver, particularly when the two are intertwined in an intense partnership like Mom's and mine. I have no doubt but what relationships like ours flourish all over the place...but are the caregiving relationships which aren't usually acknowledged because, well, most parties involved in these relationships are too busy "relating" in order to keep lives together and running smoothly and many don't have the talent for running off at the fingers that I possess.
    At any rate, although some of the conversation I transcribed may seem, at first blush (yes, this story line was clearly angling for audience blushes), not particularly apropos to partnerships such as the one Mom and I enjoyed, I've decided to publish all the dialogue in this episode involving Alan's and Denny's marriage as a tribute to Mom's and my extraordinary partnership. Keep in mind that, in our own version, many parts of these pieces of dialogue echo conversations that Mom and I had about our partnership; including the segment about who's the "leader". Other parts do not apply specifically, but the underlying motivation echoes ours. Pay special attention to the last section of dialogue, which blurs the line between spouses, parents and children.
    I'm guessing, but I'll bet that you can also watch this episode at Boston Legal's official website. I tried to confirm this but, in order to do so, I would have had to download the ABC episode player and I didn't want to do that.
Legend of Character Abbreviations:
A: Alan Shore
D: Denny Crane
S: Shirley Schmidt
J: Both the judge presiding at the injunction hearing and Judge Scalia, who officiated at the wedding
P: Mr. Pinnard, representing the organization bringing the injunction against Alan's and Denny's marriage
C: Clerks at the marriage license bureau and in the office of Crane, Poole & Schmidt
Subject of Marriage Introduced
D: Alan I want to ask you something, and, uh, you may think this is crazy but I want you to think about it.
A: Okay.
D: Will you marry me? I know the sex is lousy's legal in Massachusetts, same sex marriages. And there are going to be decisions ahead. Medical decisions, that a spouse gets to make if I should become...
A: Denny, you can stipulate that in a living will or by proxy, we don't need to get married.
D: There are other reasons. Last night I climbed into a neighbor's bed. And I shot a few Chinese, although I don't apologize for that. How many times have I been arrested?
A: A lot.
D: And the odds of my getting arrested again for who knows what, uh, I need to be able to tell you things.
A: But you can always...
D: No, no, let me finish first. Although I know you would resist, the police could subpoena you, try and force you to reveal whatever I tell you.
A: I'd never...
D: You could be held in contempt if you refuse. You could end up in jail. On the other hand, if you had if you had spousal privilege...
A: (chuckles)
D: ...I could talk to you without worrying about you incriminating yourself later.
A: Denny,
D: For my peace of mind, what little piece I have left...
A: Let's be serious...
D: And I could transfer property to you without paying gift tax. And since the rate is 100%...
A: Denny, what we've got now is so great, why ruin it with marriage?
D: Who knows how long I have left?
A: You have a long time left...

Subject of Marriage Considered - Part 1
D: Have you given any more thought to my idea?
A: What idea? Marrying you.
D: We're committed to each other. Let's make it legal.

Marriage Agreed To
A: Denny, I've been thinking about what Shirley said. Loving life, loving your job.
D: We've always done both.
A: But will we under this new regime? If I could do anything, I think it would be to open my own legal aid firm.
D: What the hell is that?
A: Well, basically, it's a firm where you give your services away for free.
D: What's the point?
A: Denny, in this economy, those are going to be the first services cut, legal aid to the poor.
D: Oh. Do you think that I might like poor people? I've never taken the time to know one.
A: Oh, they can be very nice, once you get to know them. The problem is funding it. Plus, I must admit, I enjoy having money to travel, fish, eat well.
D: You know where this conversation is headed.
A: Where?
D: Straight to the altar.
A: (chuckles)
D: Alan, I have more money than God. Unless he timed the market. But I can't give it to you because the government will take half with the gift tax, and I can't die and leave it to you because of the estate tax. Don't get me started. If you were my spouse, I could give, I could leave it to you, what's mine is yours, the government can't touch it.
A: Or, for that matter, you could open a business, or start a foundation...
D: In which case you can't use it for incidentals, like travel, fishing, and the way you go after the government? They already audit you. They'll find a way to nail you for commingling, malfeasance, or whatever. The cleanest, simplest, most efficient transfer of marriage. Plus all those other reasons Medical. Spousal privilege. Immunity.
A: It's beyond ridiculous. Even for us.
D: I've always wanted to remarry before I die.
A: Really. Why?
D: I just have. And, like it or not, you're the man I love. Think of all the, uh, what do you call them...poor people?
A: Yes.
D: Think of all the poor people you can help. Allocating my wealth to them. Not to the Iraq war, or the Wall Street bailout. Take my hand, Alan. Take my money.
A: I always thought if I were to get married again, it would be for love and romance...
D: You love me. Romance never lasts. Money can.
A: Okay Denny. I will marry you.
D: Really?
A: Why not? I suppose it had to come to this.
D: It'll be great.
A: Yes. It will.
D: Like jumping a shark.
A: Hey, How about we do it on the dock of Nimmo Bay?
D: Perfect! A salmon in one hand, me in the other.
A: Let no man tear asunder.

Application for Marriage License
A: We'd like to apply for a...marriage license.
C: You two are getting married.
D: Is there a reason we shouldn't?
C: You're heterosexual. Are you heterosexual?
A: Is that a problem? He completes me.

Subject of Marriage Considered - Part 2
S: You're getting married?
A: Is that wrong?
S: Well, Yes!
A: Why?
S: It's a sham, Alan!
A: It is not a sham.
S: Yes, it is no different than two people who are not really in love with each other marrying for a green card.
A: First of all, I love Denny. I believe he loves me. And there's no requirement that a couple be in love. In fact, given the current divorce rate, one might say that the most insidious problem with marriage is that people make life altering decisions while in love. It's a drug. A toxic one at that, and scientifically proven to wear off.
S: What's toxic is your cynicism. I think your little scheme is dishonest.

Notice of Injunction against Marriage
C: I have a document for Mr. Shore and Mr. Crane.
A: I'll take it. Thank you. You've got to be kidding me!
S: What is it?
A: It's notice of an injunction proceeding seeking to stop Denny and me from getting married.
D: What?
A: That City Hall clerk must have ratted us out.
S: Who's filing?
A: The Massachusetts Chapter of the Gay and Lesbian League.
S: Excuse me?
A: Of all the hypocrisy! Katy, pull up whatever law you can on same sex marriage.

Court - Part 1
J: So, basically, this marriage is all about money.
A: Judge, I would guess a lot of marriages are. If you trace the institution to its origins, you'll discover that marriage had its roots in economics, not love, money.
P: I find it offensive.
A: Why?
P: I'll tell you why. Speaking as a gay man, we have had to fight long and hard for this right. We have suffered ridicule, hatred, gay bashing...
A: You're preaching to the all boys' choir. We're with you on that.
P: No, you're making a mockery of it.
A: We're doing no such thing.
P: You're blatant heterosexuals.
A: So what? Are you proposing a rule that every couple be sexually active or procreational, because that one's been used against you.
P: Your Honor, this is exactly what the Religious Right and conservative movements have been warning of. If we allow same sex marriage, what next? Well, this is what's next. You will see people exploiting same sex unions to circumvent...
A: You hypocrite!
J: All right.
A: He's suggesting we go into some kind of discovery as to why two people want to marry. The very kind of invasive legislation...
J: This does seem a bit cynical. You're basically wanting to marry Denny Crane to skirt tax laws.
A: Your Honor, in this day and age the preservation of wealth is paramount. And, I'm sorry, before I see Mr. Crane's money go to fund immoral wars or less moral government bailouts, I'd rather see it go to me. The plans I have for it are far more philanthropic. And by the way, I love him, okay? I love the man. He loves me. We're partners. To say that we cannot get married because we don't have sex is just as preposterous and bigoted as banning marriage based on who a person chooses to have sex with.
P: He will be fueling the fire to pass a constitutional ban against...
A: You're the one stoking the embers. For what it's worth, this isn't just about money. There are medical reasons. He happens to be suffering from an incurable illness...
P: You can do that by proxy.
A: He doesn't want to. He wants a partner. A legal spouse.
P: Why?
A: That's his prerogative. His privacy. Do you seek to invade that, too?
J: All right. I have heard the arguments. Let me take an hour, and I will decide.
P: You have no idea what you'll be stirring up.
J: All right.

Court - Part 2
J: All right, look. I do find this union to be primarily based on money. I also agree with Mr. Pinnard. This is the exact kind of exploitation the Christian Right and others fear. But I also recognize people marry for all sorts of reasons. It's not the government's place to ask why. Mr. Pinnard, there are many gays who marry heterosexuals. Also gays who marry gays of the opposite sex because they want to start a family, be co-parents. Nothing to do with romantic love. I hardly think you believe the government should step in and stop that. Same sex unions are legal in Massachusetts. Your motion for an injunction is denied.
D: The dock, on Nimmo Bay.
A: We'll go directly from DC.
D: We're going to need someone from Massachusetts to perform the ceremony.
A: Your Honor, by any chance do you like to fish?

Immediately after (Double) Wedding, when Denny Reaches for Shirley's Hand Instead of Alan's
A: Are you going to be serious about this? Because if not...
D: Alan, I've never been more serious about anything in my entire life.
J: ...and cherish, till death do you part?
A: I do.
J: Do you all understand what it means to be married? This is a sacred thing. The commitment to love one another. To be there for each other no matter what. Do you really all get that?
S: (For all) We get it, Your Honor.
J: Look at me. By the powers vested in me as Justice of the Supreme Court and by the Powers of the Commonwealth of Massachusetts, I can't speak for Canada, I now pronounce you...husband and husband. What God has brought together let no man and no court tear asunder.
D: I love you, man.
A: I love you, too, Denny.

Personal Wedding Night Celebration
D: We're married.
A: Can you believe it!?! We will face ridicule, Denny, abuse. Don't be fooled.
D: It's all worth it. I love ya.
A: I love you, too. You know, I was watching you dance with Shirley and, for a second, I thought you were having one of your moments where you actually believed you and she...
D: Had one of those moments yesterday.
A: You thought she was your wife?
D: No, I thought you were my son. Proud moment for a dad, I'll tell you that, having you as my son. That's something. Are we gonna stay with this firm or are we going to open a new one?
A: We don't have to decide tonight. Let's just sit here like an old married couple. You know, I was a little hurt. You danced with Shirley, instead of...
D: Here we go...
A: I'm just saying...
D: Come on.
A: We did get married. I think a little attention is in order before your eye starts roving.
D: You wanted a dance?
A: I did.
D: Let's do it now.
A: Oh, the moment has passed.
D: No, it hasn't. We're here. Now. We're in the moment.
A: I don't want a mercy dance.
D: Is this the way it's going to be? Alan. Our wedding dance.
A: Don't try anything funny, and I want to lead.
D: Why should you...
A: You got to lead with Shirley. It's my turn. Let's're leading!
D: I'm not.
A: Well, then quit shoving me around.
D: If you plan to dominate me in this marriage, let's undo it right now!
A: Oh, well, that's, "'Till Death Do Us Part" commitment.
D: I can call Scalia right now...
A: Just be quiet. Seize the moment. It's our wedding night.
D: It's our wedding night!
Both chuckle.

Wednesday, December 17, 2008
Something I want to mention before I forget... seems significant and I'd forgotten to mention it when it happened: It took place during the period about which I wrote during the 05:50 post a little over 24 hours before her death. Just after talking about the dehydration issue, whether she wanted to go to the hospital and I was desperately trying to interpret her responses so I could do what she wanted, at some point during that interval she mentioned to me that "something isn't right", referring to her body and how it felt. I remember asking her leading questions for further definition...isolating specific parts of her body, questioning her about the existence of symptoms that have been typical in the past when she's had dehydration issues, anemia issues, over-hydration issues, etc. None of these rang a bell with her. I remember asking her if she was "afraid" of how she felt. She wasn't, just puzzled by it. I remember asking her if she wanted a nurse to come out and check her over. She didn't.
    Now that I think about it in review, that was probably the turning point; when her body made the decision to go in the opposite direction, even as she was determined to keep herself directed toward living.
    Just wanted to mention that.

    Got a lot of after-death business done today, even though I avoided picking up where I left off, yesterday, with the boxes. At this point, now, almost everything involves the attachment of a death certificate. I ordered a second garbage dumpster from the city for our house. People are required to keep seconds at least three months. I'm sure I'll have no problem utilizing it the full time. As I've been going through boxes, I'm collecting a mass of material that can safely be shredded or just tossed. Since we've got a shredder and I'm not "otherwise employed", no reason not to do this on my own. Besides going through boxes of files and locating two more documents that will help ease matters, I'm beginning to think in terms of what to do with things like clothes. Some can clearly be donated...some, cannot. I've also got to do a little research on how to dispose of mattresses and box springs. These are not usable without plastic zippered covers, which we've been using. I'm hoping, within a few months, I can empty our professional shed directly into Mom's room and start going through that stuff.
    So, in effect, my job companionating Mom hasn't actually ended, yet. Although going through all this stuff is so emotionally dizzying that I'm finding, at this point, at least, that I can't just plow through it in one fell swoop like a mule attached to a hoe, I'm actually enjoying the review involved in doing this. As well, I'll have to start compiling tax documents next month, so it's a good idea to get through as much of this as I can stand right now.
    In the meantime, every morning I awaken with the intention of writing each of you, including relatives, who've been keeping an eye on me, here, commenting, and acknowledging Mom & me at your sites. I'm not sure why I can't just sit down and write those acknowledgments...I have plenty for which to thank all of you and am determined to personally touch base with all of you...but, I don't know, even though I'm actually accomplishing a few things, here, there's just all this damned sand around here...forgive me my current lapses. It seems, no matter how hard I ever thought being with Mom was, at certain times throughout the last 15 years, none of our life together was ever as hard as it is being without her.
    I think of each of you every day...and hope you know that I will get back to you...without fail, but not as quickly, probably, as I'd like to think...
I have what I think is a signal that the internal work of grieving... proceeding on schedule...well, my schedule, at least.
    I took a nap, yesterday, after talking optimistically to a writing partner about some projects we'd bounced about some months ago, doing some running around, looking at my list of Things That Must Be Done (sooner than later, she says optimistically), setting it aside and trying to distract myself from the Death Thought Work that occupies a significant part of my mind and hamstrings almost everything else I try to do with my brain, at this time. Although I wasn't a carefree or appreciative napper prior to my mother's death, napping is just about the only way I sleep, at the moment, although I'm getting better at extending the night-sleep portion of daily revival. I'm up to five hours at a stretch. That's good news.
    Anyway, I awoke from a day-nap dream yesterday afternoon, most of which I can't remember except the section just before I awoke: Someone, I can't remember who, was about to sit in my mother's rocking chair. I cautioned the person to choose another seat, since my mother would be up, soon, wanting to sit in the chair, then, in the dream, reminded myself, out loud, that, oh, no, she's dead, it's okay for someone else to sit in her chair, she won't be using it.
    I awoke from the dream without trauma...I think because my awake self is fully cognizant of Mom's death/absence. The dream, at least the portion I remembered upon awakening, wasn't traumatic, either. Hmmmm..., I thought. This must be a glimpse into the work my brain is doing to incorporate my mother's death into all areas of my life. I was pleased that the work was proceeding at a pace that I think is "on schedule".
    I also ate two legitimate (for me) meals, yesterday. Although I bought the soup and bread I ate for the last of the meals (the soup was delicious and hearty, made by an in-town restaurant so, no, it wasn't fast food, nor was it left-overs from last week; the bread was fresh, crusty, soft in the middle and fragrant) I assembled a full array of appropriate bowls, a plate and a glass for the repast, which I hadn't been doing up to now. I made a dipping dressing for the bread. I thought about how my mother would have enjoyed this meal, especially the bread dipping part...but wasn't bothered by the acknowledgment.
    Monday had been an unexpectedly hard day. My head was stuck in brain sand. I wasn't able to accomplish any of the after-death business tasks I'd set for myself. Toward the end of the day I compared notes with all three of my sisters and a niece. Monday was also hard on all of them, as well. I spoke with a nephew and mentioned that I almost envied everyone their ability to filter themselves through their careers. He resurrected a quote, a version of a snippet of conversation from the movie Flight of the Phoenix (2004) which has apparently struck a chord throughout the internet community as, when I looked for the source I was deluged by blogs that have versions of it listed as a significant quote. The actual quote is linked to the name of the movie, above. My nephew's version of the quote, which I like, is as follows: "A man needs only one thing in life, someone to love. If you can't give him that then give him hope. If you can't give him that, give him work."
    Thus, yesterday, I worked, although not at those tasks I'd set up for myself on Monday and hadn't accomplished. Did it help? Who knows. Strange, strange country, especially since I'm not sure if I should be "easy" or "hard" on myself, or what an in-between approach might be.
    I do know that I can only keep up a directed pace for a couple of hours before I shut down. I don't seem to have any choice about shutting down; it happens, as a large, thick towel thrown over a cat when it is necessary to perform a physical procedure that will surely upset the cat. Thus, half sorted boxes of documents are scattered throughout my mother's and my bedrooms...when I arrived home from running errands, I left packages in the car that weren't necessary to bring inside...when I took out the garbage last night I didn't collect it as thoroughly as usual.
    I'm forcing myself to watch the BBC news I record from our local PBS station. It seems like they're talking about a planet in another solar system; an interesting planet but distant and applicable only to my promiscuous curiosity, not my life. I haven't been reading the paper, not even the sections I usually perused at breakfast while my mother searched out human interest tidbits. A wonderful local friend of mine last week invited me to see a movie with her this week. At the time it seemed like a good and necessary idea, but I'm discovering, day by day, that this is not the week for that. It's been snowing for about 36 hours and is supposed to continue today and tomorrow. I'm grateful to the weather gods for this. I don't think I could handle bright days, right now. At least, this way, the windows are kept open and I can't help but look out on our Christmas Card neighborhood several times a day and thank my mother for insisting on buying this house in 1997.
    I sense that I'll be "okay", again, because I have "okay" periods in fits and starts and I can't really say that the other periods aren't "okay", just unfamiliar. It's as though I'm concentrating very hard but I have no idea what is the subject of concentration.
    I'm also getting used to Typical Time, again. This surprises me. I thought I would remember, automatically, how to move through Human Agreed Upon Time. I understand, now, why people avoid the level of involvement upon which I insisted when being with my mother...but, I'm not sorry companionated her in the way I did. It's just taking a little more readjustment than I'd anticipated...or, well, I guess, really, since I'd refused to anticipate I unwittingly set myself up for some after-her-death surprises. I'm not sorry about that either, though.
    There is a part of me that also wishes I lived in a culture that not only allowed me to drop to the ground and wail but would expect and encourage me to crawl into the arms of all-encompassing grief and tug at my clothes, scratch at my skin, pull at my hair, ululate at a piercing pitch...I find myself calling up images of this kind of grief expression at frequent intervals. Worldwide Images of Grief. Does such a video exist? If it doesn't, it should.
Monday, December 15, 2008
Still no snow...
...although yet another promise that it will begin sometime today. I hope so.
    Something that continually catches my mind like a loose thread, these days...a factoid I've heard and read so many times I can't cite a source: That a majority of deaths in any one year occur through the holiday season. I thought about this a few days ago. It's not uncommon to hear that the holiday season is tricky for lots of people. The tendency is to blame this on the tension created by the sense of obligation to, you know, gift people, "have fun", be merry, etc. I'm thinking now, though, that considering the death statistics for this time of year, it wouldn't surprise me if many people have trouble getting into the holiday spirit because they are struggling in the wake of recent deaths or remembering the anniversaries of deaths. So far I don't have any qualms about Mom's death occurring in December. It wasn't tragic, it was sort of expected, as much as the death of an Ancient, self-elected Immortal can be expected, anyway. Although I wish she hadn't missed Christmas, this year, I'm not mourning that, actually.
    I'm sure I won't have any trouble remembering the date of her death. It is the date of The Immaculate Conception, a curious, revered holiday within select sections the Catholic Church honoring the conception of Mary, the mother of Jesus. On Guam, not officially a Catholic island but unofficially so for all practical purposes, it was a holiday. Somehow, it seems appropriate that Mom died on a day she wouldn't have been going to school. She'd just about decided that she didn't think she "would be teaching next year". Some of you may recall that a couple of months ago she believed she would be starting school soon, as a student. Smart of her to head that way on a holiday. Gives her some time to orient herself to a new campus.
    I just realized, despite the usual predicted trajectory of cancer deaths, Mom didn't lose weight, didn't lose her appetite for anything except in the last three days of her life and, even then, assumed that "this cold" would pass, even though she had a challenging couple of days before she died. The Hospcie RN who visited us the Tuesday before she died tried to weigh her. That didn't work well, but the nurse and I both assumed, from the way she looked, that she hadn't lost much weight. From my handling of her before and after her death I know that she wasn't significantly lighter at her death and didn't look wasted or frail. No sunken cheeks, no jutting bones, no pre-death pallor. She didn't linger.
    I successfully contacted one of our closer cousins last night, the son of my favorite maternal aunt and discovered that, while almost all of Mom's cousins are dead, one, in particular, the one who Mom mentioned the most, with whom she went to college and with whom she was occasionally in touch through these last 15 years, is alive and truly kicking. She is the one who announced, at my mother's father's funeral, that it is a good thing people died because, otherwise, the family would never get together! She was two years older than Mom. She's a forceful woman with a voice even more resonant than mine. I hear she continues a schedule that she and her husband (who died a year and a half ago) established decades ago of traveling seasonally between a home in Hot Springs, SD, and Mechanicsville, IA, on her own. I'm looking forward to talking with her and plan to give her a call today. I'm sure she'll have lots to say. I'm hoping she'll also be able to clarify who remains around to contact and how to get in touch with those remaining. I think there is only one other of Mom's first cousins alive, a woman who was born late in life to Mom's favorite maternal uncle and is less than a decade older than me.
    I'm still having long periods of blankness, interspersed with mini-shots of excited anticipation about what might lie ahead and shocking blips when, well, for instance, yesterday while I was washing dishes at the sink (one person doesn't generate much dishwasher traffic) I suddenly burst into tears and heard myself saying, out loud, before I could internally censor myself, "How long do I have to wait until I can be with you again?" I'm assuming that such thoughts are "normal", considering the extraordinary closeness of our relationship through these last 15 years. On the one hand, I want the rest of my life to honor my mother's family's proud tradition of "keep on keeping on"; on the other hand, oh, my, this is new country for me. So far, in my life, I've been able to easily say good-bye to those who have died, even those with whom I am emotionally interlocked and those who have died tragically. This one, though, this death isn't going to be an easy one, I think.
    Some of you regular readers may remember that when my mother spent a month and a half during late spring and early summer, last year, away from home I took to sleeping in the living room. I never quite figured out why it felt more comfortable than sleeping in my bedroom but developed a curiosity about it. This last Saturday night, the first night I was alone, here, since Mom's death, when I headed into my bedroom for sleep, really tired, assuming I'd simply strip and flop into bed, I decided to drag my bedding out to the living room and sleep there. It felt comfortable and piqued my latent curiosity. It's not as though we live in a huge house. I'm about the same distance from my mother's bedroom here as I am in my bedroom. While talking to two of my sisters last night I mentioned the resurfacing of this odd preference to them. They both confirmed that when they are left alone in their homes, when husbands and children are temporarily gone, they sleep in the living room too. One said she thinks it has something to do with a desire to be centrally located when those who normally hold down the night in a particular home are gone. Although, technically, our living room is not centrally located (if I wanted to locate myself centrally, I'd be sleeping in the hall), it was the center of Mom's "up" life. I also spent much of her sleeping time in the living room or migrating back to the living room from other areas of the house that needed attention. This explanation sounds plausible to me, although I'm wondering why feeling centrally located becomes important when one is unexpectedly and uneasily alone. In all my other homes I've occupied while living alone, which was much of my life prior to joining Mom, I've always slept at "the back" of the dwelling, the rest of my home spread out before me like a linear moat. I can even remember relishing closing down the day by moving outside "the active zone". Nowadays I'm staying in the active zone when I sleep, bounded by periphery. Maybe I'm feeling like I need to surround myself with protection, rather than simply fronting myself with it.
    I'm leaving the Christmas trees up. I light them through the dark hours. They're beautiful and merry and I like to think that, if anything of Mom's spirit survives her death, that part is residing, for the balance of the season, in the striking pattern of the alternating colors of the fiber optic lights. The fiber optic strands on her favorite one, the white one, have weathered the scrapes of several settings up and takings down by emitting three to four times more light than originally. They blaze through the color spectrum like a melody lilting over a scale.
    Christmas music. I think I'll play Christmas music today and sing along at the top of my lungs. About a week and a half, I think, maybe a bit more, before Mom died I began tuning into the Christmas music channel on cable. We sang and moved along to the music and kidded each other about stumbling over the words to the latter verses. The songs are repeated in various artist renditions often enough so that, before the last three days of her life commenced, we were congratulating each other on relearning "all the verses" so quickly.
    This grieving business is, I believe, the heaviest load I've had to shoulder since Mom's and my association began. I noticed, last week when ascending some steps downtown during a bit of shopping, that it is sapping strength from my legs. This was confirmed yesterday when I decided to go out for what turned out to be a brief walk (it was much colder than I expected). It took so much effort to lift and push each leg into the next step that I experienced involuntary images of that guy on Oprah, some years ago, hauling a 747 behind him. This alarmed me. I don't want to lose the incredible physical strength I've developed over the last year or so, particularly during the last five months of wheelchair and human walker duty. Oddly, this small, straightforward desire seems to be providing me with some internal motivation. Probably a good idea to go with it.
    Looks like my journaling is going to be one of my primary ways of grieving. Thank you, dear family, friends, acquaintances and random visitors, for listening.
Sunday, December 14, 2008
Well, this just beats all!
    Guess what folks. Now we're scolding caregivers for being obsessed with caregiving, as though caregivers aren't scolded for enough, already.
    Take a look at these two links, the first of which used to lead to the second, but the links for both have changed (I've updated them) and the link in the first now leads to a dead page, so use my link to access the second, which is the feature of this post:
  1. When Caregiving Becomes an Obsession, and;
  2. Have You Taken Caregiving Too Far For Your Own Good?.
    Now, you have to know, I agree that there is a multitude of reasons why people give care to those who need it. Each person who finds herself/himself in the role of caregiver (including parents caring for the children they've produced) has a slightly eccentric set of reasons and some of them aren't particularly, well, noble, I guess. The less noble reasons can certainly lead to bad care situations; but, sometimes, bad care situations have other causes, as, for instance, lack of resources within a community, lack of family support and lack of choice about whether one becomes a caregiver. Conversely, good care can be given in these situations, as well, and can be delivered even if the caregiver has a few reasons for caregiving that aren't noble.
    I read both articles. The second, especially, is rather like a Cosmo exposé that challenges readers to find something wrong with their lives, feel horrified and quickly fix it. Everyone has a day, here and there, when they are a pawn for articles like these. People under pressure are especially vulnerable to being told they might be doing what they're doing for all the wrong reasons, thus, they're doing it wrong and harming not only themselves but the people who are supposed to be benefiting from what they're doing. Certainly, caregivers are under tremendous pressure, whether they're part or full time, right now, in this society. Everyone's eyes are focused either on those of us who are caregivers or on the possibility that one of those everyone selves may be called to the task one day. No one I've yet known looks forward to the possibility; thus, no one looks forward, as well, to becoming a care recipient.
    With this in mind, I've decided to respond meticulously to the second article, written by Carol O'Dell, which inspired the first. PLEASE TAKE NOTE: As I wrote my reactions to the article I tried hard to respect the copyright of the original article. This caused me to set up certain reactions in maddeningly circular prose. Bear with me, please. For reference, I copied the article into my word processor and wrote my reactions to a variety of sections. To make it easier for you to keep track, I’ll mention after which paragraphs my reactions begin by number, in order. For the purpose of counting paragraphs, I am designation a paragraph any section of prose that has a space before and after it, even if the section is only one word (as it is in one case). I also numbered the bullets separately for quick reference.

Reaction after reading through paragraph 11 which introduces the concept of caregiver obsession:
    You can become obsessed with ANYTHING and use it to avoid other aspects of your own life. You can for instance, obsess over keeping your life on an even keel and not endangering your pension fund to the point of keeping you from responding to the caregiving needs of the elderly in your family, or the caregiver to that Elder One. Lots of people do this. It’s not called “obsession”, though. It’s called “leading a modern life” and the details of such living, making sure your income remains steady, making sure your immediate family and yourself come first, paying proper attention to recreation time, acknowledging ahead of time that elder care is “hard work” and making the informed decision to let others do it so you’ll be free to “enjoy” your relative “during the good times”, meet with almost unconditional approval. Lately, some people have been questioning this, but not nearly enough to get us to look at our lives within the prerogatives of our society, especially the lives of our elders, how peripheral they have become to us, and do something about this.

Reaction to paragraph 12 which introduces the concept of caregiving as a “holy grail”:
    You can ruin your health and relationships on any “noble ‘holy grail.’” You also don’t have to look at caregiving as a “holy grail”, even if it is demanding. Especially if you’re closely involved with caring for an Elder or Infirm One, you can also look on it as “life”, as a situation full of opportunity, including the opportunity to develop empathy for a stage of life that rarely has much inventive and inspired attention paid to it.
    I've met up with lots of caregivers. Lots. I've never known anyone who considers their own caregiving a search for a holy grail. I've known those who believe that caregiving has this quality but I also find that these people, if and when they become involved in caregiving, drop the quest. This point has a straw dog quality about it.

Reaction to paragraph 13 which introduces the effect of societal boundaries regarding caregiving:
    It has the ring of veracity that cultures can promote caregiver obsession, especially to women all over the world who are usually the assumed caregivers. It is also true that humans are, for the most part, hardwired to respond to life through their society. We internalize our society as one of the important components of our super ego. Even those who break away are responding to their society and are often among those who change societal dictates.
    It is also true that, although we like to think, here in the U.S.A., that we live in a “free” society in which we have the ability and the right to “choose” what we do, our “freedom” includes the necessity of taking our society into consideration and “choosing” to flow with it, buck it, or some of both. It is important to note, as well, that our society salutes those who buck it as often as it salutes those who flow with it…assuming those who buck or flow with it are successful in some way that we recognize.
    One of the things about which we are, right now, very confused in this particular society is caregiving. We are so confused about it that it is more automatic for us to be suspicious of dedicated caregivers, even as it is more automatic for us to verbally congratulate and compliment caregivers even when we have no idea whether the caregiver in question deserves congratulations and compliments. One of the things we have trouble understanding, in this society, is that society IS, fundamentally, caregiving, in such a variety of aspects that any attempt to list those aspects would be incomplete. Until we understand this we are going to continue to believe that it is not only possible but highly likely that any caregiver is “suffering” from “obsession”, if not completely than partially.
    I believe that we can always felicitously change any activity in which we are involved to “improve” the experience of that activity, for ourselves and others with whom we’re participating in that activity. I hesitate to use the word “improve” because, well, whether “improvement” has taken place despite change is always a loaded question. I believe that one of the important ways we approach and accomplish this change is by examining our thoughts, attitudes and reasoning. This is a good idea regardless of whether someone else has labeled us as “obsessing” on a particular activity.
    I’ve also witnessed the psychological harm that can occur when society loudly suggests who’s obsessed and who’s not, especially when it comes to placing that judgment on particularly vulnerable segments of the population: Slaves, for instance; service workers; women; caregivers. Pretty soon society is blaming the victim again and, as well, seeing to it that those who ply the tasks of these groups labor under conditions that guarantee the tasks won’t be well addressed. Slaves are responsible for their slavery; service workers are responsible for their low economic status; women are responsible for their over all lower status in society; caregivers are responsible for being overwhelmed. It would all be so easy, we’re told, if the victim in question would just TAKE RESPONSIBILITY FOR THEIR MISERY! Sometimes, conversely, this strategy works, starting with a few brave, usually obsessed (but in the “right” way, in retrospect) souls who risk much (and sometimes lose much) in order to break away. Then, much to society’s chagrin, a monumental change is effected, which then becomes the standard, and a new definition of obsession is invented.
    This happened with feminism. First we were told we were unhealthily obsessed with women’s place at hearth and in home. Then we were told we were unhealthily obsessed with women’s right to respect and reward in the work place. Then we were told we were unhealthily obsessed with having both. Now we’re being told we’re unhealthily obsessed with thinking things still aren’t quite right for women. In the meantime, 3 billion plus girls and women go about their lives, every day, doing what they must to attempt to successfully negotiate their lives, regardless of their status as women. This is pretty much how caregivers in the thick of it react. We’re busy, guys. You’re not helping. If you don’t feel you can help, get out of our way, please and keep your criticisms to yourself.
    Do I “care for” my elderly parent “too much”? Have you considered that you might “care too little” for your elderly parent, thus setting up and contributing to a situation that you judge to be “obsessive” for the family member whom you think is “caring to much” for your elderly parent?

    Since I was a caregiver who would probably, by virtue of the evidence in my journals, be labeled by this article as “obsessed”, I decided to respond to many of the questions O’Dell poses as essential inventory for determining if one is an obsessed caregiver. Those responses follow:

Reaction to paragraph 15 about whether one has been trained by controlling people in one’s life:
    My father had his moments but, overall, because we weren’t raised by innately controlling people, we either weren’t “controlled” but, rather, guided, or were not considered in need of control. In some ways, at some times in my life, with some members of our family, including me, I considered one and the other of my parents not controlling enough. I no longer feel this way, but, well, as did my father, I had my moments.

Reaction to paragraph 16 about parental requirements to be pleased by their children:
    No, I never felt as though I had to work to please my parents and might fall short. I had an overall sense that my mere existence always pleased my parents. I liked to please them but I know I didn’t always, nor did I have to please them in specific ways to maintain their love. I learned early to take a copacetic stance about this because, well, sometimes, I just had to do what I did, anyway. It is important to note that when I did things that I knew would displease my parents I didn’t do them to displease my parents. If I thought they might be displeased with something I was bound to do (refusing induction into the National Honor Society in high school, for instance), I alerted them well ahead of time, explained myself, listened to what they had to say, argued some (in the above instance I was, after all, a teenager, ripe for argument with parents) then did what I had to do and let the chips fall where they may. The chips never fell outside the boundaries of being loved.

Reaction to paragraphs 17-18 about one’s innate sense of obligation to please and need:
    Okay, agreed, we’re hardwired to want to be loved, especially by our parents and sometimes this gets in the way of us recognizing what we can provide, in the way of approval, for ourselves. Can we also agree that one cannot give oneself what one needs from others, that there are things that one cannot give to oneself without really messing up the delivery and the effect? That life can be hard, overwhelming sometimes, that one can even get a touch obsessive when others refuse to give one what one needs and cannot supply to oneself, even after one has asked for it, silently and aloud?

Reaction to paragraphs 19 - 27 detailing what one can avoid by caregiving:
    You can use ANYTHING to avoid the mentioned activities, and more. Considering that life is a delicate balance between avoiding and accepting and it takes a lot of internal wrangling with one’s desires and the desires society has for one to determine what one should be avoiding and what one should be accepting, well, so what? For instance: I have ALWAYS avoided finding a mate, a life-long, live-in mate, that is. I’ve always known that I didn’t want to be married, didn’t want to share a household with someone. There are lots of peripheral reasons for my lack of interest in sharing a household but the primary reason is that I have been, ever since I can remember, highly motivated to pursue my interests on my own. I work better (on my own interests, that is) alone, I think better alone, I get more accomplished alone. Even when I have to “work well with others” (which I do, obviously, or I wouldn’t have lasted long as a caregiver), I’m expert at concentrating on my part of the task-plied-together as though I’m doing it alone. And, yet, for 15 years I shared a household with my mother. At times during that period it became convenient for me to set aside activities that I knew were better plied completely alone. Hmmm…is something wrong with this picture? No, not as far as I’m concerned.
    You can also use all of the above to avoid becoming involved in helping to care for the elderly in your family. This, I think, happens far more often than using caregiving to avoid any of the above.

Reaction to paragraphs 28-29 about caregivers making icons out of their care recipients:
    Although I’ve heard that this can happen, not only to elder care recipients but to juvenile care recipients who are being parented, of all the elder caregiving situations I’ve glimpsed since I began my journals and searched out other caregivers, I’ve never run into this situation. I think that it would be incredibly hard for this situation to occur in elder intense needs caregiving, considering the innate sense of self most people of an advanced age have developed by virtue of simply living. Even the staunchly wishy-washy, the acutely vulnerable and the severely demented have direct ways of asserting their sense of self-possession. We often misinterpret and/or ignore these signals, we often abuse the boundaries, but they are there, nonetheless.

Reaction to paragraph 30 about being a natural nurturer:
    Well, I think we’re all clear that I have no natural propensities toward being a nurturer, except to nurture myself, which leads to one of the aspects of caregiving that gives me so much pleasure: I never imagined that I could do this, let alone do it well, let alone enter so willingly and completely into my mother’s mindset and needs for care.
    Very recently, while some members of my family were together for a week grieving my mother’s death and memorializing her life, one of my sisters caught me in the act of telling my mother’s Hospice RN, when he called his condolences, that no one was more surprised than me that I was able to nurture my mother so well because “I’m not a natural nurturer.” After the conversation she took me aside and reminded me that, despite my insistence that I’ve never been a nurturer, in casual but important ways I’ve nurtured and continue to nurture everyone I know. I think, basically, this is what everyone does. And, sometimes we are nurtured. That’s life. So, you know, we’re all capable of nurturing…sometimes we can surprise ourselves with how capable we are at nurturing.
    And, yes, some of us probably are "natural" nurturers. That doesn't mean we're also naturally obsessive.

Reaction to Bullet 1 (after paragraph 31) about caregiving duties increasing:
    Hey, people, this is the nature of caregiving for the elderly. Sure, you can get obsessive about it, just as you can get obsessive about washing your hands to avoid germs, but don’t put natural tendencies out there as a reason for caregivers to identify themselves as obsessed.

Reaction to Bullet 2 about judging what duties are necessary:
    When others questioned what I did as my mother’s caregiver, I’d take their concerns into consideration, sometimes I’d notice that they had good points and use those. My consideration, though, always included whether that person had ever cared for an Ancient One who was at least as needful as my mother and whether that mattered.
    It is delightfully surprising what tweaks you can pick up from someone with a fresh, outside view. One of my sister’s suggestions, for instance, which should have been obvious to me but wasn’t, is a good example: That in order for my mother not to lose her balance when putting on her pants, she should sit down to put her legs through them and pull them up above her knees.
    On the other hand, some suggestions from non-caregivers can be just plain stupid. I’ve got an excellent and recent example of this. Someone noticed that my mother’s wheelchair height doesn’t allow for her to sit at the table using the wheelchair, thus making it necessary to have her transfer from the wheelchair to a dining room chair. The person suggested that I put the table up on blocks for her.
    First of all, our dinette is small. The table is moved around, a lot, for a variety of reasons, not just for my mother. I’m sorry, I responded, I’m not going to hoist the table onto and off of blocks every time it needs to be moved.
    Besides which, she and I both were/are short. How were we to compromise between optimal wheelchair height for her versus chin level height for me, especially if she was perfectly capable of transferring from chair to chair and the exercise was good for her?
    Thirdly, the only meal we ate at the dinette table was breakfast. Any and all others were eaten in the living room, her with her bedside table, me with a table made out of a box. We preferred it this way. We liked to watch TV or movies during dinner. The arrangement also allowed for me to be physically close to her so we could talk about what we watched during dinner. No blocks needed for this. She was wheelchair bound for the last four days before she died, when she wasn’t bed bound. We ate the one meal we shared during that time in the living room. It was not, as well, uncommon for us to breakfast in the living room a la dinner arrangements if there was something my mother was keen to watch during breakfast. During the last meal of her life she was keen to watch one of her favorite Christmas movies. That’s what we did.
    What’s interesting is that the person who suggested blocking up the table is a caregiver spotter for his sister, who takes care of their mother. He doesn’t live in close proximity, though, he steps in and helps out a few times a year, so he isn’t trained to see an in-home situation with an in-home caregiver’s eye.
    So, you know, others aren’t always the best judge of whether what you’re doing is “necessary”, especially if they aren’t involved in the caregiver game in the way you are.

Reaction to Bullet 3 about caregivers ignoring their health:
    I didn’t ignore my body or my health, from my point of view...but I also didn’t treat it any differently than I did when I was not caregiving for my mother. I realize there are caregivers who do this. It’s rampant among “ordinary” parents as well as caregivers to the elderly and infirm. It is, in fact, rampant among lots of people in this country, right now, whether or not they are formally identified as caregivers. My feeling is that this has more to do with the intractable unavailability of decent, cost effective, appropriate medical care than it has to do with a willingness of caregivers to subsume their needs to the needs of another.
    At any rate, aren’t we still allowed to choose how we handle our health? Or has this changed and it is now illegal if we don’t manage our health the way the medical-industrial complex would like us to manage it (which, of course, is primarily in the interest of their bottom line, secondarily in the interest of our vitality)? And, what about national health insurance? Wouldn’t that solve a lot of this problem?

Reaction to Bullet 4 about taking no time off from caregiving:
    I took five days’ respite at the end of May. I swore I’d never do that again. My mother ended up with a bedsore, her appetite dropped through the floor and she was mostly immobile because the few caregivers at the facility were so busy they couldn’t really interact with new clients.

Reaction to Bullet 5 about dwindling relationships:
    I’ve lost some friends. I’ve gained some friends. Family relationships have evolved, sometimes, but not always, due to periods of caregiver strain because of lack of help. But, you know, I can’t see how that’s different than before I was a caregiver. When I realized how inflexible some of my friends were to my role as my mother’s companion and caregiver, I also realized I was well rid of them. The ones who “got it” remain friends. My family members remain my best friends.

Reaction to Bullet 6 about caregiver’s perceptions that the rest of the world has become alien territory:
    Well, goodness, I had the outside world in common with the outside world, and the outside world is full of caregivers! Please!

Reaction to Bullet 7 about feeling that others don’t understand the caregiver plight:
    Oh, I think people “understand”, all right, which is why many make themselves so scarce.

Reaction to Bullet 8 about taking pride in caregiving:
    When someone congratulates or compliments me on the quality or the fact of my caregiving, although I graciously accept the comments, I wonder how they would know, since they didn’t live with us. The people I’ve fostered as friends aren’t prone to these kinds of pronouncements. As well, I don’t care if I’m caught in someone else’s headlights in a situation where someone might tell me I’m a great daughter or caregiver. It’s not uncommon for me to hear this, but I take it with a grain of salt. I repeat, how would they know?
    However, what is wrong with taking pride, even a deep sense of pride, in being complimented for caregiving, especially if the compliment is coming from someone who is aware of what you’re doing? Is there, as well, something wrong with wanting recognition? Seeking it? In all other aspects of our lives we are counseled to work for reward, extrinsic and intrinsic. Why are we suspect if we do this when we give care? Doesn’t the suspicion seem suspicious? Granted, one can go overboard in seeking recognition…in any endeavor; it’s one of the risks of living in a reward obsessed society. But, really, how often does this truly happen and, conversely, how often do those whose approval you are soliciting turn weary of congratulating you on something they aren’t doing but think they probably should be doing?

Reaction to Bullet 9 about not sitting down when one’s in the thick of caregiving:
    I’m great at sitting down. Lots of the duties of caregiving can be done sitting down. I became very creative with this.
    The implication of this bullet, though, is that the intense needs caregiver is particularly weak at determining when things need to be done and when it would simply be nice if things were done but not necessary. I have a sneaky feeling that, over all, caregivers learn the difference very quickly and use it to their advantage. Here’s another one of those warnings that likely applies to very few but to which many respond inappropriately and suddenly find themselves with something to do that may not be necessary: Becoming obsessed with wondering if your behavior as a caregiver is appropriate.

Reaction to Bullet 10 regarding lack of sleep:
    Recently during my mother’s last days alive on earth, although it had never happened before, it became necessary for me to sleep on a severely interrupted schedule to negotiate her need for medication to address her air hunger and the possibility of pain due to air hunger. As I negotiated this I often thought of the many times my mother responded to the needs of her children in the same manner. This reminded me that parenting and elder care are not the only circumstances within which interrupted sleep and lack of sleep can occur. All good friends experience this. All employees experience this. Anyone who is trying to maintain relationships, employment and schooling experiences this. Sometimes there are ways around this. Sometimes there are not. You do what consider you have to. It doesn’t help to have someone blame you for not getting enough or the right quality of sleep. Better those who are concerned consider stepping into your shoes for a bit and allowing you some extra sleep. I’ve had people do that for me, without asking. It’s important to have this done for you without asking because, typically, if you’re in this type of cycle, you’re too damned busy and exhausted to ask for a break.

Reaction to Bullet 11 about being afraid of life after intense needs caregiving:
    Wrong. I considered plans…and wondered how I’d react to my mother’s death, sometimes with foreboding, sometimes with anticipation. I was acutely aware, though, that I would not be able to formulate any plans with any degree of accuracy and appropriateness until I was firmly past caregiving, and I allowed for that.
    What I did fear was being left homeless and penniless after caregiving, needing time to recover from the natural exhaustion of caregiving and not having the environment within which to do this. This happens to lots of caregivers; the statistics back this up. It is a legitimate fear. It is, often, also, not a situation which is easily addressed when someone is in the thick of caregiving. This is not the caregiver’s doing. This is our society’s doing.
    I did have one after-caregiving plan upon which I was, and remain, firm: I have no desire to ever do this for anyone again and I am going to try hard to keep that plan active. It’s just too dicey an activity in this society, right now.

Reaction to paragraphs 32-33 about fear of being a bad caregiver and fear of consigning one’s care recipient to a care facility:
    I can’t imagine anything anyone might find out about me, as a caregiver or in any other role, that I’m “afraid” they’ll find out. My mother died on my watch. I expected her to do this. I wanted her to do this. She wanted to do this. I was intensely curious about her eventual death, in fact, and relished that I would be there when she died.
    As long as I functioned as her caregiver, I worked hard to keep my mother out of “one of those places”...even when she was on the brink of death. She’d been in a couple for rehab and one when I was on respite. I’ve also known several others who were cared for in facilities, of all types. I was determined, after our experiences and those of others, not to entrust her to any of “those places” again. This is not obsession. This is informed compassion.

Reaction to paragraphs 34-35 regarding being driven by fear:
    I don’t think I have a driving force that’s based on fear. The things I fear (none of them having to do with my mother’s care) don’t actually drive me. I seem to have a an intolerance to operating under directives of fear. If all I can muster is fear, I try not to do anything until the fear subsides. If I had to do something while caring for my mother before the fear subsided, and, sometimes, I had to, I relaxed, did it and trusted my sub- and unconscious operations to negotiate the fear and get me to a place of “No Fear”. It always worked.
    Let’s face it, folks. We’re hardwired for fear, as well. No way to avoid it. It's a survival mechanism. Lots of ways to negotiate it. Despite the famous directive, it makes no sense to fear fear. That’s just one more fearful circumstance you have to negotiate.

Reaction to paragraph 36 about not being hard on oneself:
    I did cut myself slack. Quite a bit. More than most, probably, sometimes after a stringent review, but I still did it. I am my own best friend, always have been, always will be, so, of course, I cut myself slack. In my experience, even if someone thinks she or he isn’t his or her own best friend, s/he is probably not paying attention to the invisible things s/he does every day to protect him or herself. Caregivers do millions of these things. They have to. The amount may be insufficient at one time or another...maybe over the entire span of their caregiving career, but in the main I think most caregivers actually do cut themselves a lot more slack than observers give them credit for. This doesn't mean that they couldn't do better, but it certainly doesn't mean that they're obsessed, any more than any other U.S. citizen is obsessed with aspects of life here.

Reaction to paragraphs 37 feeling like a fraud while simultaneously feeling like a hero:
    I have never thought I was “the best caregiver in the world”, even in my Super Caregiver stages. I wasn’t interested in being “the best caregiver in the world”, nor did I ever feel like a “sham”. I never felt that I could never do enough. I think I was very competent, thank you, over the last several years, both with my own life and my mother’s. Although I occasionally had doubts, I was not afraid to the point of actual refusal (sometimes I mentally refused, but I never actually refused) to face any caregiver situation that might crop up.
    However, I recently encountered a social worker when my mother was last in the hospital who not only didn’t believe me when I told her this, she reported exactly the opposite on my mother’s chart and used it to label my mother as a case of “failure to thrive”, when she wasn’t, thus delaying the discovery of her pneumonia for four critical days. I think those on the fringes of caregiving are much more apt to think caregivers suffer from the above problems than caregivers are apt to suffer from them. From the above experience, as well, I know that PROFESSIONALS DON’T LISTEN TO CAREGIVERS BECAUSE THEY THINK CAREGIVERS ARE TOO INVOLVED TO BE ACCURATELY AWARE OF THEIR OWN SITUATIONS!!!!! They’re wrong about this, and in being wrong, they create yet another problem for caregivers needing support.
    I managed my life well as a caregiver, from my perspective. I am aware, though, that I resent having to manage the world in order to allow myself to live how I wish. This, though, is a life-long attitude. It has nothing to do with caregiving.

Reaction to paragraph 38 regarding the self-perception problems inherent in caring for someone with dementia:
    While freely admitting that my mother had Dementia-Lite, thus I am not qualified to speak on behalf of those caring for someone who seems alien and unapproachable because of the status of their dementia, I also admit that I enjoyed my mother’s dementia and sometimes entered into it. I occasionally wonder if this may be why hers didn’t progress much and didn’t throw our lives out of whack. I didn’t worry about countering it. What could be fixed was fixed. We lived with what couldn’t be fixed. Life is life. My mother did her life. She needed help during the last stages of her life. Lots of it, partially because of dementia, but there were other issues involved in her need for help, as well. I helped her. I figured, may as well enjoy her, and myself, while I did that. If that's obsession, than, okay, call me obsessed..."call me...irresponsible...", oops, I think I hear my mother singing...

Reaction to paragraph 39 regarding internal arguments for continuing to give care as you are:
    I had no resolute arguments for or against what I did.
    I often disagree with others over the definition of “well”.
    I’m agnostic so I don’t believe that some god somewhere is primarily responsible for and judging the direction of my life.
    When I considered that what I was doing for my mother was “right”, I also considered that I never do the “right thing” unless it feels right for me. My mother was a delight for me to know through all the phases of her life, and mine. We’ve been lucky, that way. I have a great deal of sympathy for people who find themselves in the potential or actual position of taking care of a difficult parent in the context of a difficult relationship, but I don’t have any expert advice...I’ve never experienced this. Perhaps such caregivers are more prone to obsessing about caregiving, but I wouldn’t bet on it. What I would bet is that the former caregiver who wrote this article thought she obsessed, overly so. Maybe she did. Maybe, though, she’s looking at what she did as a caregiver from the wrong perspective.

Reaction to paragraph 40 regarding the end of caregiving duties:
    Caregiving duties don’t ever end. They are intimately intertwined in all our relationships. Sometimes we pay attention to them. Sometimes we don’t. As a member of the human species, life is about caregiving. Some societies go overboard in this, particularly in regard to assigning caregiving duties to the most vulnerable members of their society. Others, like the one in which I currently reside, are also afraid of caregiving duties never ending. Some, I hear, strike the right balance for a time. As individuals we are always in a state of flux in regard to caring for others, allowing them to care for us and caring for ourselves. As humans, caring is hardwired into our genes. Don’t tell me that caregiving duties end. They transfer. They evolve. They don’t “end”. The best of societies work with this. The worst don't. One of the problems with my current society is that we think that caregiving, in any context, is at its best when it is least required. Bullshit, I say. Why? Because, even in this atmosphere, even with the difficulties inherent in giving care, all kinds of care, even in the face of great risk, we continue to do it, we continue to think about doing it. We continue to worry about doing it. All of us.

Reaction to paragraphs 41-46 regarding attempting to achieve perfection as a caregiver:
    Here’s one point on which I agree; perfectionism is deadly to caregiving. I’ve always tended to approach tasks, any kind of tasks, household tasks, interpersonal tasks, creative tasks, with a vision and an analytical, meticulous attitude toward achieving that vision. I’ve also tended to enjoy the doing as much, sometimes more, than the review of the product after the task has been completed. I’m good, when overloaded with tasks, about doing task triage and abandoning the it-would-be-nice-but-it’s-unnecessary tasks. I’m also very eccentric in my decisions about what’s unnecessary and flexible about allowing myself to be satisfied with a change of vision. All these helped me be an on-point companion and caregiver to my mother. It also helped me realize and relish the attitude that we were doing our lives, separately and together, versus me doing hers and not doing mine. This is probably the most important and valuable strategy I used while doing life with my mother. This attitude also helped me avoid the Perfectionist Trap.
    If you're a perfectionist, do whatever you can to disabuse yourself of the notion that perfection is desirable and needed in caregiving. This article's mental technique is a good one. There are others. Find the one that suits you. Don't make the mistake, though, of thinking you're unhealthily obsessed with caregiving when you are simply obsessed with perfection. Avoiding this mistake will ensure success in counteracting your obsession with perfection.

Reaction to paragraph 47 regarding choosing one’s attitude and the character of one’s existence:
    I think we take this a little too far in our society and use it to blame the victim. We still don’t truly understand the concept of victimhood; nor do we have a clear idea about whether victimhood can be avoided. But, we act like we are experts on both. Where, though, did we get the idea that victims are necessarily obsessed?

Reaction to paragraph 48 regarding dealing with life’s inherent tendency toward chaos:
    Of course chaos sometimes rules! Every intense needs caregiver knows this in her/his bones. Why are we being singled out as not knowing or paying obeisance to this?

Reaction to paragraph 49 about whether to bathe one’s care recipient daily:
    Well, it depends on the purpose of the bath. I used our daily bath time to do a number of things that are important to everyone:Reaction to paragraph 50 regarding easy meals:
    Of course easy meals are fine! It is also important to observe dietary restrictions and inclusions if and when these are critical. Sometimes, frankly, it’s easier to do the whole meal deal than it is to try to figure out how to incorporate easy but potentially dangerous foods into your care recipient’s diet; but, usually, after negotiating a few easy meals, you develop an appropriate repertoire. So, you know, if we caregivers don’t always take the easy way out, do us a favor, caregiver advisors: GET OFF OUR ALREADY BELEAGUERED BACKS!!!!

Reaction to paragraph 51 regarding letting chores go, occasionally:
    Sure, leave chores at night, assuming you don’t mind adding these chores to your usual morning chores. Let’s be realistic about this, people. If and as caregiving intensifies, sometimes it’s easier to do the stuff on a schedule. This isn't obsession, this is smart management.

Reaction to paragraph 52 regarding allowing others to care for your recipient while you take a break:
    Take respite, absolutely, assuming that respite care is not going to discombobulate your care recipient’s mental or physical state and leave you with issues with which you wouldn’t otherwise have had to deal. It was, for instance, not okay with me that when I left my mother with others, individual caregivers and facilities, I always had either to rescue her from or intervene in a potentially dangerous situation and/or clean up a mess. It was not okay with me, for instance:    I don’t consider this a problem I created as a caregiver. I consider this a problem our society has created and with which it has left the caregiver to deal. Bad politics, people, not obsessive caregiving.

Reaction to paragraph 53 regarding it being okay to take classes while one is caregiving:
    It’s also okay not to do this if it gets in the way of caregiving requirements. I signed up for a once a week class in 2002. Two of my sisters volunteered to care for my mother for the week it took me to prepare for the class by reading the required material. Two weeks later my mother had a health crisis that required extended out-of-town medical and in home care and I “chose” to drop the class. Although my taking the class and her health crisis were not related, it was important for me not to resent the fact that my desires were interrupted by her needs. If your choice to take a class is working, continue. If not, it’s okay to “choose” to ditch the class. You are not an obsessed caregiver if you do this. You are a compassionate, responsible caregiver.

Reaction to paragraph 54 regarding lunching with friends:
    No problem with this one. But, don’t feel obligated to do this if you don’t want to; in other words, don’t do it because you are afraid you’re not taking care of yourself “correctly”. Some people aren’t lunchers; and, as well, some people are natural loners and would rather not spend free time with others, especially if their un-free time is always spent with their care recipient.

Reaction to paragraph 55 regarding handling your care recipient’s medical appointments:
    It’s important to know when follow-ups are necessary or routine; and when doctors’ advice and desire for further investigation would be worse than the condition being addressed. Mom’s constant doctor worked with us on this. Some doctors don’t. I know. I was responsible for having my mother dismissed by two doctors who wouldn’t work with us. Due to the current medical climate in this country, it is often not possible to find a doctor who will work with you. I know it’s maddening and frustrating and difficult, believe me, but it’s worth it to be acutely aware of the medical stuff being done to your care recipient and risk the displeasure of the doctor over the safety and well-being of your care recipient.
    When caring for someone who is elderly it is imperative to be aware of the fact that medicine hasn’t collected an awful lot of data about what is medically appropriate for the elderly and most doctors, whether or not their specialty is geriatrics, often have a much less accurate sense of what is medically appropriate for your care recipient than you do. This is not obsession. This is, unfortunately, what it takes for anyone in this country, right now, to receive appropriate medical care.

Reaction to paragraph 56 regarding being courageous enough to recognize that you are an obsessed caregiver:
    Oh, absolutely! It’s also okay to make a conscious decision that what others might consider going “too far” in caregiving is exactly the right distance for you...then, not stress about this. Block out the advisors and do it your way. You’ll reduce stress.

Reaction to the last two paragraphs regarding summing up how to live your own life and give care:
    How about building a life that includes caregiving? This is one of our problems, at this time in this society. We continue to think of caregiving as separate from our lives, intrusive in our lives, destructive to our lives, an activity that deserves no real honor, little creative thought, less help and abysmally low wages and benefits if it’s done professionally. We continually interpret and cite statistics and anecdotes about the stresses and hidden wages of caregiving to the caregiver. We continue to believe that the elderly and infirm are “in decline”, instead of considering, for instance, that they are on a journey that requires more outside oversight than our own...and continue to use this as evidence that it’s “okay” to allow our own eccentric needs to trump those of the care recipient. We continue to believe that caregiving doesn’t need to be an area of societal focus, priority and recompense.
    Is it any wonder that caregivers appear to easily become obsessed? Is it any wonder that we are quick to label dedicated, meticulous care as “obsession”? Is it any wonder that when caregiving becomes a priority within a family, the family members approach it with dread and an eye to management rather than with curiosity, excitement, an eye to observation and the desire to follow, protect and embrace the potential care recipient, rather than lead, manhandle and dictate the life of the care recipient?
    The obligation to change this should not rest with the caregiver already ensconced in the currently tricky, risky atmosphere of intense needs caregiving in this society. We’re too busy, too involved with the hands on, day to day necessities of this kind of caregiving. The obligation should rest with those who are observing the particular caregiver who is struggling to stay afloat and keep her/his care recipient afloat. The obligation should extend to such areas as making sure that respite care is always worry free for the caregiver and complimentary to the care recipient; that we don’t automatically blame dementia for care recipient recalcitrance; that we don’t blame the caregiver for caregiver stress and leave the resolution of that stress up to the caregiver; that we don’t forget that creative, complimentary care arrangements shouldn’t be left up to one person but should involve everyone who is aware of the care recipient; that the primary caregiver isn’t the only one in our society who should need to adjust her/his life to embrace, love and protect the care recipient; that the caregiver shouldn’t need to ask for should be a given, as soon as the potential for intense needs caregiving is recognized.
    Is someone provoking you to question whether you’re an obsessed caregiver? If so, the one strategy you can employ to make sure that their obsession doesn’t override your life is, DON’T OBSESS OVER SOMEONE ELSE’S OBSESSION!

    Finally: My apologies for obsessing over this article.

FOOTNOTE: This is one of the posts in draft that I didn't have a chance to finish before my mother died. I started it and wrote most of it on December 3rd and 4th.

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