Thursday, April 29, 2010
As of May 1, 2010...
Friday, December 31, 2004
Night before last I was so tired and so overwhelmed I was afraid I would die in my sleep.
Autopsy conclusion: Cessation of Inspiration, Undetermined Origin.
I "thought" about it for a long time after retiring, considering what affect this would have on my mother's circumstances; how her life would be upended and overhauled by the arrangements my death would make necessary. Initially, under the assumption that she'd discover me dead in bed and call 911 and then one or more of my sisters, she'd be alone and floundering in the house for a good 24 hours, maybe more, probably soaked to the gills with urine, her blood sugar out of control, assuming that she figured out or "remembered" how to prepare food; chances are she'd eat condiments, pickles, olives, cheese and left over cheesecake out of the refrigerator. She'd probably "nap" on the sofa, soaking it with her urine. She wouldn't bathe, she wouldn't take her meds, she wouldn't change her clothes, she might attempt to get the mail and fall, crawling her way back to the house if she didn't accidentally lock herself out, she may not hear the phone to answer it, she probably wouldn't even realize she had to feed and water The Little Girl. Once discovered and secured, she'd move in with one (or more, perhaps in shifts) of my sisters. Soon thereafter, as her medical and life management became overwhelming for one or more of them, she'd probably go to a nursing home. Everything I imagined strifed and stung as the possible scenarios flooded me, but, oh, I was so, so tired, so incredibly tired, I decided I didn't care, everything would turn out "fine" because it is my mother I'd be leaving and everything always turns out fine for her in her mind. And, anyway, I'd be dead, unable to do anything, so one way or another, whether death is our annihilation or our introduction into some other of an infinite number of systems, I wouldn't worry and I could rest.
By the time I reached the "rest" phase of my imaginings I decided I'd better arise and make sure phone numbers were handy for her at her usual sitting place when she awakens. As it happened, she, after having drunk a lot of tea that evening before retiring, was arising to go to the bathroom. Taking advantage of the opportunity, I lightly cleaned her, checked her bed (which was still dry), changed out her underwear and settled her back in bed. Then I figured I'd better prepare her, just in case.
"Mom," I said, "I've been thinking about it and we need to review what you need to do if you should ever awaken and I died in bed during the night."
Curiously, she wasn't startled. "I know what to do."
"Well, just in case, let's go over everything. Who do you call first if you discover I'm dead?"
"Good. I'm going to make a habit of leaving the list of [her other daughters'] numbers out at your chair at the table where you usually go first to sit. You know to dial one before the numbers, right?"
"Okay. Well, I'm going to redo the list tonight with the numbers written out exactly as you need to dial them."
"And, you must keep trying, number after number, until you get someone. Okay?"
"And, when the police show up, tell them you cannot be left alone. Tell them to copy the list of numbers and keep trying everyone until someone responds and promises to get here promptly. Okay?"
"I'll leave a note on the list stating that you can't be left alone for long."
"That's not necessary. I'll tell them."
"Well, no, you won't. I know you well enough to know that you'll tell everyone that you're fine on your own because you think you are."
"Well, yes, I suppose you're right."
"I'm afraid even [her other daughters] would believe you, because you believe this and sound so convincing."
"We'll talk more about this tomorrow."
Suddenly there was a lump in my throat. "Well, Mom, I hope that happens (although I actually was hoping the opposite, but I figured this lie would be forgiven) but I might not make it through tonight." I fought to remain calm and objective so she wouldn't worry. "I mean, you never know."
"Goodness, girl! You're not going to die tonight!"
I started to cry. "Mom, I don't know. I might. I just want to make sure that if it happens you'll be safe very shortly after I die."
She peered at me as though I had just spoken Mandarin. "What makes you think you're going to die tonight?!?" She wasn't expressing belief, just investigating this peculiar and ridiculous suggestion.
By this time I was sobbing. "I'm so, so, tired, Mom. I'm just so tired. I think I might stop breathing tonight and I'll be so tired I won't want to start back up, again, my body won't even do it automatically. I'm sorry, I'm just so tired."
"Go back to bed, child! You need to sleep. You didn't set your alarm, did you?"
"Uh, well, no."
"Good. Get some sleep. You're fine. I'll see you in the morning."
"Well, I hope so."
"Oh, stop that! You're over dramatizing! Kiss me goodnight! Don't stay up rewriting that list! You need to sleep!"
That's what happened, although, I drifted into sleep assuming I wouldn't be awakening.
Happily, I suppose, the dwelling in my doldrums worked through the depths of sleep. I feel, now, well, not yet ready to die. Sometimes I become so tired from the vigilance of being my mother's sole keeper in the world, of knowing from unexpected but soberly absorbed experience how draining it is to have to keep a wary eye on those with whom I do medical and financial business on my mother's behalf...sometimes I get so tired of being one of this human species in whom the business of life overwhelms any remembrance of joy and I just don't want to do it anymore; don't want to try to negotiate the scams, don't want to try to negotiate anything, don't even want to be where negotiation is necessary. Doesn't matter that I'm taking care of someone. She never doesn't like life so she'll be fine I think. Leave life to those who accept the desperation and consider it invigorating.
Sometimes I think if you don't really like what you see going on, person after person, day after day, it's best, for you and for those who depend on you, that you not stay around. Sometimes I just get so tired that I can't help but think this.
So far I've been able to sleep my way out of this fatigue. Maybe I will for years to come. But now I'm settled about what will happen to my mother if I don't. This, at least, is a blessing.
The Sorry Post - A Tribute to My Mother
As I was setting up the board I spit a rapid string of "rules" across the table at my mother:
- Roll up your house coat sleeves. I don't want you knocking off our men while we're playing.
- And, lift your arm. Same reason. If you knock any of your men off they automatically go back to Start. Any of my men, they get put back on the board where ever I think they were.
- Remember, out on a one or two. And, no, you can't move an extra space when you start a man on a two. And get your men out or you won't have a chance. A one or two wasted on a man over here [pointing to the side opposite her home] when you could get someone out is a stupid move.
- Read the cards and think about what they say. I don't want to spend the entire game coaching you on what the cards say and what they mean.
- Try to remember that when you're approaching home you'll be moving your men up that way. I haven't decided yet if I'm going to just let you go around and around the board in endless circles.
- And pay attention to drinking your cranberry juice. You're a little dehydrated. It'll irritate me if I have to remind you constantly to pick up your glass and drink.
Whoa. I stopped in my tracks. I looked at her and thought. Almost a minute. Then I laughed. "You know what? You're right. I am irritated I don't think I want to play. I don't know why I suggested it."
"Well, I think we should do something where we don't bother each other." "Don't bother each other" is my mother's code phrase for, "Jesus! What is your problem?!? Settle down and leave me alone!"
"Yeah. Thanks for saving us, and me. Got any suggestions? I'm afraid all mine would be excuses to snip away at you."
She laughed. "Welllll....we could watch Deep Space 9. We both like that, we don't have to talk to each other, and it might settle you down."
We did and I did. That's the day we snugged in after I duct taped our house problem (which I've since discovered isn't as major as I thought), did laundry and broke well into the second season of Deep Space 9.
Footnote. Yesterday we played Sorry, too, at my mother's suggestion. Just before we settled in to the first game I said, "Ummm, do you suppose it's warm enough for you to play without your house coat on?"
Her eyes twinkled. "My thoughts exactly." She wriggled out of the sleeves and let her house coat fall over the back of her chair. Amazingly during the game the only coaching she needed was to be reminded to "go home" when she was on the critical side. She read the cards. She thought about her moves. She strategized bringing her men out. We each won an equal number of games.
Being a caregiver isn't an "at the recipient" activity. From the outside I know it often looks like it is. I suspect, though, that even when the recipient is deeply stowed in the furthest reaches of old age and its mysterious quirks, caregiving is a constantly adjusting relationship between two people, both of whom are active participants. Sometimes it isn't the caregiver who needs to force an adjustment, it's the recipient.
Bless my mother for having no qualms about being the enforcer.
Thursday, December 30, 2004
Damn! That last post was so good...
I can't tell you how many times people, both strangers and not so strange-rs (although not, thank the gods, relatives) have told me that there is a special place in heaven for me because of what I'm doing with my mother. The first time it was offered to me I accepted it graciously and, not being a believer in heaven (or hell, for that matter), chalked it up as the best compliment a dedicated born-again Christian thought she could offer me. I continued to let it go without reaction (silent or verbal) a few more times. Then one day after hearing it I was catalyzed into thinking about it while I was wheeling my mother around the old Walmart looking for plastic sheets for her bed. These are those thoughts, not necessarily in deductive or inductive order:
- I wonder if there is also a "special place" for all those who know an Intense Needs Caregiver and often think they shoulda-woulda-coulda except that, well, they've got their lives and you know how important one's life is...even caregivers are scolded about the importance of "the lives" we supposedly "give up" to take care of our Ancients and our Infirm.
- I don't want a "special place in heaven". I suspect, if there is a heaven drawn to the specifics that many Christians believe, the last place I'd want to be is in the Intense Needs Caregivers Section. Something tells me that they are cordoned together in case someone in heaven needs intense, special care. Believe me, I'm not interested in doing what I'm doing now once I leave this system. If we are cordoned off for special recognition, well, we all know how limiting a life of special recognition is...put me where everyone else is, please. I'm experiencing more than enough separation from others, now, as it is. Don't "honor" me with the same separation after I die!
- I don't want any rewards after the fact, I want relief during the fact.
- If there is a "heaven" wouldn't it be nice if we were all there because we all "took care" of each other, sometimes in groups if the care of one individual was intense; we designed our entire lives around the reality that we are a decidedly social species and we all need some kind of care all the time, even and especially if that care means being relieved for some alone time from the rigors of intense caregiving?
- Please don't leave my "reward" up to a questionably existent "father-god" so that you don't have to worry about it. I'm not in heaven, I'm right here. As an Intense Needs Caregiver I'm in the thick of it. If all you can do is tell me you hope that some benevolent god will reward me in the after-life for what I'm doing, please don't say anything to me. I can accept peaceably co-existing with others in a society that isn't geared toward mutual caregiving. Being reminded of this, as though it's a compliment, by being told that I'll get mine in the sweet by and by, though, is only an irritation.
- If we really believe that there is A Special Place In Heaven for caregivers like me I can't help but note that there are an awful lot of people who aren't interested in vying for That Special Place. Kind of brings into question the specifics of That Special Place, doesn't it?!?
Finally, you'd think I wouldn't be one of only a few (and, mind you, I have yet to find those few; I'm sure they're out there, I just don't know where to look) who is impolite enough to say, "Whadaya mean, 'take care of myself'?!? Jesus! You may as well tell my mother to take care of herself!"
Look. I know we aren't going to "get it" as a society until long after my caregiving stint is finished. Can we at least start questioning Caregiver Wisdom in this country so that the next time some non- or ordinary caregiver gets the urge to tell one of us Intense Caregivers that Someone is Preparing A Special Place for Us for After We Die, they think twice and say something else, like, "Here, let me do that for you..." And, as an Intense Needs Caregiver we know, because life is, finally, "like that", that the offerer knows exactly what needs to be done and we have no qualms about letting them do it for us or our beloved Care Recipient?
"Oh dear," as my mother would say. The Curmudgeonly Caregiver strikes again. Don't listen to her, she doesn't mean it. Just give her a wide berth. She'll be fine. And, think of The Special Place she's earning in Heaven...would that all of us...
Yes, exactly. Would that all of us. All. Of. Us. Now.
Wednesday, December 29, 2004
Today was another late rising for my mother...
Otherwise, I guess we had a good day. Once I awoke her, Mom was up most of the day until just a few minutes ago and took only a short nap. She wanted to break into the second season of Deep Space 9 today, which we did, all day long, well, except for the fact that I did laundry all day long in the aftermath of our house problem. And, I mean, allllldaaaayloooong...the last load of drying came out and was folded just before Mom went to bed.
God damn, god damn, god damn, doing this alone without someone here with whom I can talk out my frustrations, someone here to at least hold me up while I'm shouldering the burden, someone here who gets it because they've been here for awhile, it's really getting to me now. Really.
Oh well. Almost time to call it a day.
Tuesday, December 28, 2004
A late arising again...
Mom begged to be allowed to sleep in until noon. I okayed this, knowing that I could probably get a good start on the necessary cleaning during that hour and 15 minutes. But wait! There's more. The first thing I did was call MCF to let her know rain is setting in and the worst of it is expected tomorrow, with a flash flood watch which will affect her drive. She hates to drive in bad weather. As it turns out, she's sick with something, sounded like warmed over shit and begged off until next week, since we're expecting snow on the weekend and she's like Mom is about snow...been there, done that, never again.
So, company for tomorrow's been cancelled and I'm over being under the weather, although I suppose, considering how exhilarated rain causes me to feel, one could probably say I am ecstatically under the weather. Mom is flat under the weather.
At Costco I picked up the second part of the final season of Sex and the City and we've been rewatching that until just a bit ago when Mom decided on a nap. I expect we'll polish it off this evening, take a peak at the alternate endings and see how they compare with our druthers.
On my way back from Costco this morning it suddenly hit me with some unpleasantness that for the last three months my mother has been homebound, due to me, not to anything inherent in her 'condition'. She hasn't, I don't think, been unhappy nor do I think anything about her has suffered but I need to get her out again for her sake. As I realized this I was also overwhelmed with the memory of how much work it is to get her out:
- how long it takes to work her up to it, which includes both mood and body preparation;
- how long any outing takes when she's along;
- how concentrated I must be on her even while I'm accomplishing the purpose of the outing;
- how every trip involves the Emergency Bag which is used about 50% of the time;
- how long it takes to 'debrief' her after outings;
- how it is that, when I bring her along in our outside life I automatically lose time alone;
- how this factor, in large part, has led to the last three months of her homeboundedness...
We kiss goodnight.
"I'll see you in the morning."
"Yes, you will, and I'll see you in the morning."
That's my mother having the last word in our 'Night 'Night ritual.
Tonight, on my way out of her bedroom, I realized that it is this ritual that insures that my mother will awaken the next morning. We pledge to see each other the next day. We both know we're not only looking forward to that mutual morning greeting, we rely on it. It gives us both a reason to get through the night.
Some of the important guarantees of this seemingly insignificant ritual are:
- That it will be the same person greeting her every morning, regardless of what mood that person, or she, is in;
- That it will be someone with whom she is so familiar and who is so familiar with her that small talk will immediately begin upon arising, even if the small talk is along the lines of, "Why should I get up?!?"
- That she knows the person greeting her in the morning is as dependent on her awakening as she is on being awakened by that person;
- That it will happen within a household that contains the implements of not only her life but the life of the one who awakens her and that her presence in this household is as significant as the presence of the one who awakens her.
Monday, December 27, 2004
Despite my earlier post of today...
All other bills except medical bills were figured and paid. This is why Mom's arising was put off so long today. I decided to awaken her at 1100 since she stayed up late last night, almost to midnight. At 1045 I attacked my last bill, full of about $90.00 in over charges (that's right folks, a phone company bill) and, as it turns out, an additional $28.00 in overcharges last month. Since I had it all figured out I didn't think it would take long to address the problem.
If you read the daily meal stats you'll notice that I took her 'breakfast' blood sugar at 1210. I was still on the phone with the phone company. They were, of course, trying to figure out the same thing I already figured out. I think it was about 1220 when everything was figured out to their satisfaction and mine and we parted, me with a much decreased bill, them with profuse apologies for their "oversights". God, I hate the business world...but unless I absolutely have to get nasty I am always polite and patient when negotiating these "oversights". Seems to work better.
The medical people can all cool their heels. This is what always happens when my mother goes into the hospital: I provide all her insurance information (she's Medicare/TriCare for Life) to the hospital. The hospital processes it all and presumably sends it on to all the visiting providers (consulting physicians and radiologists) who bill separately. I know, absolutely, that the hospital sends all my mother's information to the providers...I've asked them about this several times when going through provider bills. But, amazingly, the providers' billing departments never get it right. They always 'forget' to bill TriCare and tell me the hospital neglects to include this information. I learned after my mother's first hospital visit that this is a widespread, and apparently approved, medical scam to garner two payments on one bill. The first time she was in the hospital in 2002 we got a bill from a consulting physician. I was not nearly as savvy about medical billing procedures as I am now. Because I misread the "documentation" and since the bill was only $36.00 I paid it. A month later I received notification from TriCare that they were billed and paid the final $36.00 on the account. It took me three more months of calls which degenerated into extreme cynicism on my part to wrest that $36.00 out of the provider's office. Now, I let them spend about six months' worth of paper and computer time and employee time repeatedly billing us until I feel like contacting them and calling them on their "error" in insurance billing.
If you go to Today's Dinner Stats post, you'll notice that my mother's blood pressure is almost back to normal. It's so normal I'm considering dropping her lisinopril back, but not quite yet. I'm a little worried since it's not yet, I'm sure, a result of regular exercise. We haven't been doing her exercises regularly and she hasn't been very mobile. Dropping blood pressure in her can also signal severely anemic bouts and/or dehydration so I'm being very careful this time. I'll probably take a couple more blood pressures throughout tomorrow, wait it out for a few days then take her in for the long overdue 'monthly' CBC and see where we stand. Overall, though, she's feeling good and doing good.
We were both way under the weather today. I ended up taking a very hard three hour nap, so hard that I had to remind myself how to walk when I arose. That hasn't happened to me in years. Mom also wasn't up much today and retired early. We're both in good moods, though, despite my business slow-down reported in my earlier post today, which turned out not to be as slow as I would have liked.
Before I laid down I was not in the best of moods although I wasn't advertising it. Suffice it to say that I lulled myself to sleep with fantasies of dying in some sort of freak accident so that I wouldn't have to continue this rugged, intense section of caregiving that's going on right now, all the more rugged and intense because I so desperately need a break. I guess the sleep must have cleared my system of some 'need-a-break' detritus because I'm feeling better this evening, a bit more optimistic about the days and months ahead and very optimistic about my mother's life.
I awoke this morning...
Maybe tomorrow. I'm working on tomorrow.
Sunday, December 26, 2004
"I was dreaming about cheesecake,"
"Would that have been pumpkin cheesecake? With raspberry maple sauce?" I teased.
"I don't remember what kind it was but it was the cheesecake we're going to have tonight."
"Ahhh...then it was the pumpkin cheese cake with raspberry maple sauce!"
"Oh, good! I've been hoping we'd have some more before you freeze it!"
"We'll do the same thing we did yesterday. We'll have a hearty lunch [I'm making the tomato sausage biscuit pie today] then we'll have a Just Desserts dinner."
She would have applauded if she was the type. "You know," she continued, "that cheesecake didn't taste like pumpkin."
Over the four years we've purchased Costco's pumpkin cheesecakes I've noticed that each year they contain less pumpkin. Both the flavor and color have been affected. This year the cheesecake had a just-off-white nutmeg yellow color and no pumpkin flavor. It had much less graham cracker crust, as well, which was an improvement. Not that it wasn't a decent cheesecake, just no longer pumpkin cheesecake. I was surprised my mother noticed this. In years past, as a confirmed smoker, she hasn't noticed the taste subtleties of pumpkin versus less pumpkin. This year she not only noticed she remembered the next day. "Were you disappointed?"
"Goodness no! That raspberry sauce made the cheesecake. Didn't matter whether it was pumpkin or not."
Funny she would mention this. When I purchased the cheesecake this year,it's color was so similar to a regular cheesecake that the idea for making the raspberry maple sauce came to me.
This morning I discovered what's causing the excess water in our backyard. It isn't our house plumbing. The moisture is occurring along the drain that diverts our wash under the backyard through to it's natural bed along the west side of our house. The drain pipe is not straight. Somewhere under our yard it obviously takes an obtuse turn. The leak suggests to me that instead of using bent pipe to construct the diversion, welded pipe was probably used. The joint is probably where it's leaking. As well, our wash still has gently flowing water in it so water is flowing through the pipe. Although I'll check our water bill when it arrives I think the leak is in the wash diversion drain. I don't know if we'll fix it immediately. It's possible the wash drain has been cracked for awhile but we were gone a lot in winter over the last several years (and summer during some of those years) so we wouldn't have noticed. No wonder our back yard has been so prolific! No wonder we had a bumper crop of apples this year despite that they were shrunken and less than hardy from malnourishment.
It's a good, easy day for Mom. We're watching Tracy-Hepburn movies, I'm doing the tomato pie prep, she's sneaking grape tomatoes, bits of chopped green onion and finger dips of the pesto I made to spice the pie. I like that she's been up a lot lately. We're down to no more than 12 hours of sleep.
Good numbers all the way around.