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.
By the way, while I was writing...
...the P.S. over at Insane Grief to my Mother's Day post below, flowers were delivered. The same sister who was concerned about my possible reaction to Mother's Day this year sent me a bouquet delightfully filled with some of Mom's all time favorite flowers: Huge Sunflowers (oh, god, how she loved these); Indigo Irises (as though they had come from our private stock in the backyard, a benefit from one of this house's previous owners, that thrilled Mom); A variety of carnations in complementary colors ("These always remind me of the tissue flowers we used to make when you girls were young, do you remember those, Gail?"); Goldenrod, and tiny lavender flowers for accent, and; a finishing touch of greenery.
Perfect for my mother's (and my) favorite oblong yellow opalescent vase that arrived for Mother's Day a couple of years ago with an arrangement ordered from the same sister. I had even saved the tulle ribbon that had been tied into a bow through holes in the top of the vase!
Yes, I burst into (easily controllable) tears when I answered the door and accepted the unexpected delivery. And, yes, they were tears I would not have wanted to miss.
Thank you, MFS, from the bottom of my soul. Thank you, all my sisters, for thinking of me this weekend. You can be sure, I am thinking with equal concentration and love about each of you. And Mom. And everyone, everywhere, whose Mom now exists in Another Frame of Reference. Happy Mother's Day, to all of us.
A couple of months ago, one of my sisters brought up the subject of Mother's Day.
Her assumption was that it would be difficult for me this year. I thought about it and told her that I didn't think I'd have any trouble with it. "August is going to be the problem," I remember saying, "her birthday and all, you know." The "and all" is that it was never just that August 2nd was my mother's birthday. It was that the entire month of August was my mother's birthday month. In one way or another, if we weren't swamped with medical management (which happened in 2004 and may have happened with lesser impact in any of the other fifteen Augusts that my mother and I spent together), Mom's birthday was celebrated every single day of every single August, even if that only meant mention of it (and, it usually meant a little bit more: August, in our household, was THE MONTH for special dinners, special breakfasts, "Look what I found at the store for you" days). Mom wasn't just The Original Party Girl. I believe she invented The Celebration Sally. I remember parties like her infamous "Purple People Eater" party, for which she created the equally infamous "dime cake". That's right, she baked dimes into that cake and many others in the years to come.
Our entire family picked up on Mom's knack for celebration. I think, for instance, it was actually my father who came up with the idea of Birthday Months. It didn't stop there. When one of my sisters had chicken pox in her teens we had a party, including a cake. She'd been complaining about how she felt "ugly", so we completed the celebration with a gift of a stuffed animal I found in a discount bin that was so dismembered it was impossible to tell what it might have been at its creation. I sewed round buttons for googly-eyes on the top of what was left and presented it to her as proof that there were, in the world, uglier beings than her. When one of us had a bad period we had a good party. When anyone did something the least bit cool, Party Time! Typhoon approaching? Typhoon Party. One of my mother's standard responses to just about any situation was, "Well, we'll have to celebrate."
Mother's Day, in Mom's and my Latter Days household, was celebrated, of course. It didn't, however, have as much of an impact on me as her Birthday Month or The Holiday Season. We planned a special dinner which featured dessert. We always had fresh flowers, sometimes from me, sometimes from one or another of my sisters. There were gifts of an intimate sort and maybe a special or favorite movie. Most significantly, we'd spend the day (or a couple of days...that's one of the advantages of living in timelessness, you can stretch a day to your desire) talking about mothers in general and in particular, motherhood, mothers and children, Mom's pregnancies, family births and family memories. It was at the end of one of these days that I wrote my Mother's Day Tribute to My Mom. I know, these sound like memories that could knock me for a loop on an after death Mother's Day, but they're not.
I assumed I wouldn't be celebrating Mother's Day this year since the person with whom I most enjoy celebrating it, my mother, won't be here. In fact, I've been in Ignore It mode since, well, I guess since her death. Then, yesterday [Oh, shit, look at the time! Make that Thursday.], the first biannual Post Office Food Drive Notification since Mom's death came in the mail. My mother always LOVED these drives, which take place on Mother's Day Weekend and some weekend during the holiday season. Because she reveled in them, so did I. Up until four years ago we'd spend the day before the drive (the drive is always on Saturday...the notifications always come in Thursday's mail) at a grocery store, usually Costco, shopping for our community. Mom insisted that we buy "the good stuff": Canned asparagus, for instance, instead of canned corn; seasoned stewed tomatoes instead of plain; Albacore tuna instead of "chunk light"; canned roast beef instead of Spam (which was a stretch for Mom because she was one of the few who love Spam, but she knew that most people don't); healthy cereals, including Grape Nuts, her very favorite cereal, which are usually more expensive, rather than the ones with "all that sugar"; hors d'oeuvre things like olives, green chilies, unusual pickles and fancy crackers; baking things like canned pie filling, condensed milk, baking soda and powder, flour; large cans of hearty stew rather than chintzy cans of anemic, concentrated soup; boxes of Mac 'n Cheese; tins of exotic teas, a can of French Market chicory coffee, bags of unusual types of chips. Part of the fun was imagining the look on strangers' faces when they discovered a box of Earl Grey Tea or a can of Jumbo Black Pitted Olives or a bag of 15 bean soup mix in their box. Suddenly, the imagined recipients were friends ripe for surprise and delight. We'd even discuss how one or another member of a family might react to a particular item. "The husband will like this," she'd say. "You know how men are."
"Can't you just imagine what the kids will say when they see this," I'd say.
I've always known my mother to be generous but I think her idiosyncratically extreme version of Food Bank generosity may have been connected to an unemployed winter I spent in Pinetop when one of my neighbors (I never discovered who) turned my name into a local Catholic charity for a food box over the holidays. I remember calling my parents and exulting over the contents, describing each item and what I would do with it, squealing over items that I never would have imagined would appear in a food box for people receiving temporary assistance. I always assumed food boxes contained the bare, necessary staples, like powdered milk and government issue "cheese product". My mother was as surprised and excited as I was.
Over the last four years, though, as caring for her became increasingly intense, the short notifications made it impossible for us to participate for a variety of reasons. Occasionally she'd remember the food drives and ask if we'd participated. After the first awkward flirt with the truth, I'd lie and tell her we had. I couldn't bring myself to tell her the truth more than once because I knew, from experience, she'd ask why, I'd explain the impossible logistics of arranging a store spree with 24 hours notice, her dementia would cause her to deny that there was any impediment to her, or me, or both of us going...ai, yi, yi, I didn't want to face having to finally shut down the conflict by saying, "Okay, okay, there's nothing standing in our way except me saying we're not doing it this year." And her anger and hurt. Besides that, it wasn't a complete lie. Over the last four years I've been donating money in her name directly to the local food bank during the holiday season. Although I'm sure she would have appreciated this, she still would have asked about our grocery trips for food bank donation.
When I got the notice Thursday, though, I was ecstatic. Mom is no longer health impeded. "We'd" be able to do this, again. I spent well over an hour at Costco on Friday with Mom's food donation proclivities riding on my shoulders, whispering in my ears, the two of us filling a cart full of "the good stuff". What a great visit we had! Mom and I walked every food aisle and discussed the pros and cons of every item we considered: Checking to see if this was in glass or plastic (no glass containers allowed, anymore); looking for boxes, rather than sacks, of things like meal, rice, dried beans (no sacks allowed, anymore); debating the quality of this brand of canned salmon over that; wondering if we should get the bag of dried mangoes or dried pineapple...why not get both! We even visited every food sampling kiosk, something I slipped out of the habit of doing once Mom no longer went with me to Costco because it took too much time and I preferred to get in and out as quickly as possible.
When I returned home I decided I had way too much to leave by the mailbox, so I called our local post office and made arrangements to drop the stuff off in the afternoon. The office manager was thrilled with our donation. Her exclamations brought in a few back office employees. I was encouraged to tell the story behind the donation, which I did...with a few shared tears, much shared laughter and a few more shared stories about Mother's Day celebrations in my three new acquaintances' households. I finished by saying, "So, now, I guess, my mom knows I lied to her the last four years about our participation in the food drive."
"I think," said one of the employees, "you just negotiated her forgiveness today...until the next food drive, that is."
So, that was our Mother's Day celebration this year. I'm pleased the opportunity presented itself. Chance and tradition conspired to bring Mom back for a walloping, grand Mother's Day. You can bet we'll be doing this again.
This one's for you, Mom. And the next, and the next, and the next...
P.S. added 5/9/09 at 1410 MST: There is an an addendum to this post over at Insane Grief which discusses my reactions to this episode after the fact.
Here's my future.
The link in the title to this post will direct you to a story about a 72 year old reclusive woman who lived in a "small town" in South Carolina. She died in her home. Her death, and body, and, by the way, the body of her dog who died subsequently due to dehydration, weren't discovered for 18 months, well after the sale of her house for back taxes which she hadn't paid (because she was dead).
The story is sobering. It's also reviewed here as a cautionary tale (the link in the title has considerably more detail) at ElderGuru.com, a blog full of not-your-usual-eldercare-posts. I discovered the blog, and the post, yesterday when I was performing my monthly check of Honorable Caregiver Blogs, most of which are now inactive, and stumbled across this site in a comment to a post. The site looked interesting enough to peruse...that's when I found the post linked in the title.
When I first read the post I thought of an episode of Northern Exposure which I've previously discussed. Sanderson's death in this episode was not unintentional and he made all appropriate arrangements, including for his dogs, before he committed suicide. However, this got me to thinking about unintentionally undiscovered deaths versus intentionally undiscovered deaths, a much less favored, I'm sure, but still occasionally preferred, I imagine, possibility.
Considering that this woman's dog died of dehydration and she had a reputation in the neighborhood (that's right, she wasn't completely unknown by her neighbors) as caring for stray dogs, I doubt that her final wishes included dying unbeknownst to her neighbors. At the very least I'm sure, had she thought she was close to death, she probably would have made arrangements for her dog to be cared for after her death. According to the information about her health, though, she had no reason to believe that, at the age of 72, her death was imminent.
As well, it's certainly true that contemplating such a long unnoticed demise is probably horrifying for most. I have no argument with the last paragraph of the news story and the commentary at ElderGuru.com, both of which bemoan the present lack of community in our society, speculate on reasons for it and consider the story a societal warning.
Among my relatives, one (that I know of, there may be more) such death occurred. My paternal grandmother lived alone in a remote area of North Carolina. Although scads of relatives lived in a town close by and checked on her, they didn't visit every day; probably, though, close to once a week. They also ran errands for her, were her mode of transportation for appointments and were in fairly frequent touch by telephone, although it would not have been uncommon for her not to answer her phone, occasionally, especially since she had an outhouse instead of indoor plumbing. Grandma was an unapologetically depressive person. She could be considered reclusive but, frankly, I don't think she was that way by choice. The idea, alone, of visiting her could be oppressive. She was relatively young when she died, too, at 68, and not physically disabled nor was she considered unhealthy, although her long term (probably life-long) depression could have been considered a mental disability. She died, though, in the 1960s when neither chronic mild nor elder depression was considered cause for alarm, even if it was evident to families and acquaintances. No doubt all of these circumstances conspired to create her death circumstance: She died alone, in her rocking chair, of a heart attack. It was estimated that when she was discovered she'd been dead for "at least a few days".
I've thought about such an ending. I have no spouse and no children. Since I am fairly reclusive and am (thank the gods) past childbearing age, these personal statistics won't change. Although I am in fairly regular to regular contact with a small group of friends and some relatives, it is not uncommon for me to go for periods of time not initiating contact and/or avoiding contact. I think my days of unplugging the phone for sometimes weeks at a time are past but if I were to, say, fall and incur a grievous injury that made it impossible for me to get to the phone, answer phone calls and/or call for help or to move about my house and keep myself physically sustained for survival, it is likely, considering what my cadre of friends and relatives know about me, that I could die without anyone noticing; probably not for 18 months, but at least for awhile and possibly long enough to compromise the life of my beloved cats.
Added to that, some weeks ago when I was canvassing the neighborhood with pamphlets announcing the latest zoning issue meeting for the political protest group in which I was participating, I visited a home that had a notice of non-payment and threatened power shut-off from our local electrical company attached to the door. The door was mostly clear glass. Behind the door was a small dog yapping excitedly at me. After I placed my pamphlet between the door and the frame I peered through the glass for several long moments watching and wondering, feeling like an absurd cross between a Peeping Tom and a Concerned Neighbor. Except for the dog, I detected no other movement or sound inside the house. Was the occupant(s) hiding? Simply ignoring the electrical company notice (which is a common occurrence, I imagine, when someone is in dire financial straits)? Maybe the notice had just been placed that day while the occupant was out? Did the house contain a dead body? While I was contemplating what my next move should be, a neighbor pulled up in his car. I hadn't yet hit his house and he, being a concerned neighbor, stopped halfway to his driveway and stared at me. I scurried to his car, gave him a pamphlet and expressed my concern about the house I had just visited. Aside from seeming relieved that I was not dangerous, he nodded at my concern that the situation at the house would appear suspicious but, he assured me, he knew these people and he was sure "everything is fine." At that he delivered a crooked grin, indicating that, obviously, the power shut off notice indicated that "everything" is not exactly "fine" but that no one was dead and undiscovered, at least.
Despite this man's acuity about his neighbor and even though I am fairly familiar with my own neighbors, my neighbors and I, I'm sure, would be hard pressed to know if anyone of us had died unexpectedly. Of my three closest neighbors, the ones I would truly consider "my neighbors", two of three live alone. One of these is elderly, the other has disabilities. Both of them are fairly reclusive but I can tell from comings and goings and a little informal knowledge that neither of them is likely to die leaving their body undiscovered for any significant length of time. I know the elderly neighbor has a check and balance system consisting, in part, of someone who visits regularly (a couple times a week), does errands for him, etc. I know the woman with disabilities wears a Medic Alert monitor and has far more visitors than I (which isn't hard to do). Among the four of us in what I would consider a neighbor-pod, I am the most reclusive, even though I am on speaking terms with all of them, likely the one of the four neighbors to whom unexpected and unnoticed death could easily occur.
I should be frightened about this; most people would be. I should be calculating steps I could take to prevent the kind of death that Mary Sue Merchant, the woman in the news story, experienced. As regular readers will recall, immediately after my mother's death I did initiate a check system to cover me in case I should die of "a broken heart". So, I should continue that kind of system. Right? Well, that's a hard one. Aside from being a recluse and preferring to be left alone much of the time, the concept of dying unnoticed is actually a revered fantasy of mine. I like the idea of slipping away privately; of my demise being discovered by surprise some time after it occurs. I'm not thrilled about the possibility that any pets for whom I might be responsible when death visits me would be injuriously neglected if the discovery of my death took weeks or months. I'm not sure what to do about that. The point I'm making, though, is that for someone like me (and, I suspect I am not the only one who feels this way), setting up a death watch is a dicey option. It may have been for Mary Sue Merchant, as well. I'm sure she never wished that her dog would die because she died. However, considering her innate reclusiveness, it's possible that she may have harbored a death fantasy similar to mine.
This, of course, I'm sure, isn't the reason that most of the elderly who die in such situations end up this way. Most of the time these death circumstances are due to neglect of family, friends, neighbors, professional associates, who are in the habit of neglecting the old. Such unnoticed deaths (although not unnoticed so long as 18 months, I assume) even occur in ASLs and nursing homes. Most people, young, middle-aged or old, don't want to be marginalized. This kind of marginalization, as well, isn't just responsible for unnoticed (and sometimes preventable...I suspect my paternal grandmother's death could have been prevented, for instance) elder deaths. It's also responsible for criminal deaths that are witnessed in some way but in which none of the witnesses wants to get involved, deaths of neglected children, deaths of neglected disabled and deaths of neglected mentally ill. Thus, it is perfectly appropriate, even urgent, to speak up on behalf of the unnoticed, unwilling dead and to pose such questions as: How could this happen? How can this be prevented? How likely is it that, in this society as it now exists, we can expect to change our attitudes toward the members of our communities in order to, at the very least, know about and, possibly, prevent unnecessarily unnoticed and unnecessary deaths in a timely manner?
In the meantime, because of my personal idiocyncrasies, I have to raise one lone voice on behalf of those few of us who might want such an unnoticed death, who revel in the idea, who chuckle privately at the possibility that we might startle and befuddle our relatives, acquaintances and communities by dying some time before our deaths are noticed...
A newsflash of sorts: As I was polishing off the last paragraph to this post, my Hospice Grief Counselor placed her monthly call to me. I couldn't resist telling her of the story about which this post is being written. She was as unpleasantly surprised as anyone would be, including, initially, me...but mentioned, as well, that in her experience, especially with the elderly, this is not an uncommon occurrence; it had even happened to one of her clients. A significant portion of our conversation revolved around this possibility, during which I told her that, although I share her discomfort with the story, a part of me actually likes the idea of that happening to me. We agreed about the pet-owner aspect of this type of circumstance; neither of us would want the same fate for our pets as was that of Merchant's dog. We also talked about appropriate preventatives in connection with me being reclusive and living among similarly reclusive neighbors, which she understood. She suggested an "unobtrusive" system about which she's heard that allows for privacy, eccentricity AND community awareness: Working out a system by which, for instance, you and a neighbor agree that at a certain time of day each of you always extinguishes (or activates) a light that is clearly visible from your neighbor's home, or open or close a particular shade. Thus, you and your neighbor can discreetly know that if such an action isn't taken it might be a good idea to check on the other or call the local police to do so. Good idea, for my cats' sake, anyway. If there comes a time, too, when I no longer have pets (I don't foresee this, I love my pets and, at this time in my life, know that I am inclined to host others as current ones die) I can opt out of the system...just for the mordant fun of it...
Palliative Care Grand Rounds 1.4 is up this morning!
It's a grand, grand round...hosted at a unique and interesting blog, Dr. Thaddeus Pope's Medical Futility Blog. The unadorned description of his blog: "This blog tracks judicial, legislative, policy, and academic developments concerning medical futility." Very unassuming, but, while you're there checking out PCGR 1.4, consider taking a look at what his online journaling offers. It isn't often you run across a medical blog written by a lawyer. His posts are easily negotiated, contain pertinent links and will surprise you at their applicability to the medical part of your life. It doesn't all happen in hospitals and clinics, Virginia.
This month's issue of PCGR is loaded (as they always are) with incredible posts. Yes, two of mine are there, too; posts I wrote over at In Sane Grief, which is where I've been writing, lately and regularly. I've just begun working my way through this PCGR edition. There's enough there for a whole month (or a whole day, if you do it in one fell swoop) of great stuff pertaining to "palliative care, hospice, end-of-life, pain and symptom control, grief, and communication in the medical realm." At one time or another, that includes each of us.
Later. Yes, that's right, I've got a new post for this blog coming up sometime today.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson