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.
Bereavement Observations #6: "Sleep, my child, and peace attend thee...
...all through the night."
Yesterday morning MPNC sent me a short, plaintive email telling me that she had dreamt of her Grandma during the night and had awakened several times crying. Responding to her wasn't easy because, although I dream of my mother, so far I remember only two, one of which I described here recently, and the other of which, while I remember no detail, I do recall as benign. At any rate, my dreams of her are not disturbing my sleep or my psyche.
I thought about MPNC's life: She's a very busy young woman: College; two jobs, one of which is the sort of job in which she's never sure, once she arrives, when she'll be able to leave; a relatively new, still delicious love relationship; working for at least one charity project of which I know and, considering her, probably at least one more; incredibly social animal, as are her parents, which means she's tending to her acquaintanceships, friendships and familyships like a trooper. Essentially, then, she is so tightly scheduled that sleep is carved from what's left of her time and her contemplative time is either snipped from the ragged ends of minutes or pretty much regulated out of existence. As I thought about her life I realized that, grief being what it is, it will have its way with the bereaved, even if the bereaved has the kind of life which appears to disallow it.
After mordantly joking that, considering how much her grandmother valued and savored sleep, she would be "horrified" to know that dreams of her were disturbing MPNC's sleep, I told her, "however," my guess is that her grief is disturbing her sleep because the only time she has to grieve is in her sleep; inferring, as well, that grief is a total organism experience...it won't confine itself to working out sub- or unconsciously, leaving the conscious mind blissfully alone. I admitted that I knew this perspective wouldn't necessarily make her experience any easier but I hoped it would bring some sense to her grief and make her personal grief experience easier to accept.
After sending my response, I thought about my own sleeping experiences since my mother's death that might be connected to working out my grief. I realized that, despite my lack of awareness of any disturbing dreams indicating soul-wrenching subterranean work was taking place, I am most vulnerable to grief in the morning when I first awaken. I always awaken with an almost impossibly heavy heart. Within seconds of opening my eyes I am shedding tears. Although I am not the type to linger in bed and this hasn't changed, it would be accurate to describe my wake-up schedule as a slow, emotionally painful drag, including the first chore, getting myself to the bathroom to empty my bladder. There have been times when I have thought that I might crumple to the floor before making it to the toilet and have imagined myself marinating in my own urine and tears for an hour or so before being able to move enough to clean up after myself. This hasn't happened but it puts me to wondering if it's happened to anyone else. My life-long preference is to shower immediately after arising. Since my mother's death, though, immersing myself in water first thing in the morning only increases my personal waterworks...so I put off showering until later in the day. There have been days when I've put it off until the next day.
Even though we like to speculate that it is possible to put off or avoid grieving I now believe that no matter what we think, difficult losses always will out. In conjunction with the eccentric details of our lives, grief will be expressed. Period. It may help to allow for this, many psychological theories purport such, even threaten that we can get ourselves into trouble if we don't allow for grief. If we don't, though, grief will allow itself. I'm not even sure that we need to tell ourselves anything about what to expect of grief in order to "properly" experience it, well, except to be aware that, one way or another, we'll experience it, while grief stands stoically at our side, wipes its hands and says, "That is that."
Bereavement Observations #5: Better Live Through Chemicals
Sometime during the first week after Mom died I schized regarding my supplements, including the critical one, St. John's Wort, which I'd been taking to manage my depressive instincts (which I often enjoy but which can also run away with me if I'm not careful). When I pulled myself back onto my supplement track the week after everyone left, I decided to continue the accidental cutback of taking four 300 mg St. John's Wort pills (I'd upped the dose from three to four sometime last year after my mother was diagnosed with lung cancer) to taking three, dismissing my fragile emotional state as completely circumstantial and figuring, as well, that continuing to drop the fourth pill would be a handy cost cutting measure...the capsules aren't cheap.
Sometime about two weeks ago, when I was having a particularly hard day dealing with my grieving self, I suddenly remembered the Wort capsule cut back. I idly wondered if cutting out that fourth capsule might have anything to do with my inability to focus on just about everything except episodes of the various Law & Order series; having extreme problems being able to conduct any kind of death business without feeling overwhelmed every time I put my hands and eyes to lists or documents; continuing to feel unusually bereft without let up, blah, blah, blah. I was reluctant, though, to reinsert the fourth pill into my daily supplement regimen without checking with someone, mainly because, well, you know, grief is one of those things you just have to work through and I was thinking maybe it wouldn't make any difference at all and, in the meantime I'd be overdosing myself and spending more money than necessary. So, I decided to contact a woman who has, in the past, helped me out with alternative healing methods and has an expert, reliable and reasoned knowledge of herbal supplements.
She and I haven't been in touch with one another for some time. She didn't know my mother had died, nor that Mom had been diagnosed with lung cancer...nor anything that has taken place with Mom and me within the last year or so. After I explained everything and posed my question about the fourth St. John's Wort capsule, she advised me that since it hadn't been a problem before, may as well put it back but "don't expect miracles" because grief was "a different animal", it wasn't a reaction I wanted to "quash" and, anyway, even if it makes it easier for me to lift my spirits, the most minor effects wouldn't be apparent for "a couple of weeks" and it would take a "good 60 days" for my system to readjust to the higher dose as she was sure, by this time, it had adjusted to the lower dose.
That day I decided resume my former four St. John's Wort capsule regimen. Today, two weeks later, almost to the day, sometime this afternoon, I found myself not just ripping into the death and taxes business that I've been having so much trouble handling, I'm actually wanting to do it. What a surprising and welcome change!
So, you know, I guess the moral is, if you're bound in fresh grief and you've been taking mood altering substances through the event, it's best not to alter that schedule; at least, anyway, don't alter it down.
Bereavement Observations #4: Taste and Death
A few days ago I made one of my favorite things to eat for the first time since my mother's death: A toasted tuna salad sandwich on sourdough bread. Making and eating it was like a small celebration of my mother's and my life and, as well, of my life without my mother. I made the tuna, mostly, the same way I did when my mother was alive, adding lots of minced yellow onion, minced fresh celery with leaves, dill pickle relish (dried between paper towels to remove as much moisture as possible...I hate wet tuna salad), celery salt, an-off-the shelf salad seasoning that I discovered many years ago and onion powder (my secret ingredient). The differences were: I didn't use nearly as much mayonnaise as I did when I made these sandwiches for my mother and me, I only require enough to glue everything in the mix together while my mother required enough to add a definitive "white glue" taste to the sandwich; I didn't add cheese to transform the sandwich into a tuna melt, which my mother loved; I used only a hint of the salt based flavorings rather than enough to change the taste of the tuna; I used Pam in the skillet to toast the bread instead of buttering the bread before placing the sandwich in the skillet because I don't like greasy toasted bread.
As I made the sandwich and reviewed the differences between my mother's food preferences and mine I realized that, while she was alive, it was important to me to make food the way she liked while retaining tastes that I liked and that I preferred to be eating exactly what I prepared for her to eat so that, as we discussed each meal (which we always did), I was in tune with what she was describing.
The differences between what I prepared for my mother and I to eat and what I prepare for myself to eat alone seem small but are profound:
- I haven't eaten, or used, an egg since the week after my mother died;
- Without trying, I am eating far less meat than we ate when she was alive, which means I am back to using meat mainly as a flavor booster rather than a main ingredient;
- I use far less cheese than I did when she was alive;
- It is not uncommon for me to prepare a meal for myself with nothing but vegetables...my mother would never have stood for such a meal;
- I not only can handle but prefer sauces and dressings that are more acidic than my mother liked, thus, I add only a small fraction as much sugar to the salad dressings and tomato based sauces I now make than I used to add when preparing them for my mother and I;
- My mother preferred noodles to rice and white rice to brown and mixed rice, thus I've been pawning half used bags of noodles and white rice off on my friends since my mother died;
- I'm discovering that, although I thought the two of us consumed little enough salt, the frozen leftovers from before my mother died, through which I am still in the process of working, are a little too salty for my taste;
- Now that I don't have to cook breakfast, I hardly ever eat breakfast meat, except in a BLT (if I can get really flavorful tomatoes) or as a flavor booster in beans;
- I prefer, for instance, a bowl of home made chili to nachos made with generic chili; meat with steamed vegetables rather than meat with stewed vegetables.
- Take-out fast food really isn't as flavorful as my mother thought; nor as I thought when we ate it together.
If eating is possible at the Elsewhere Bar, I suspect that my mother, too, is reveling in some of her old favorites that she hadn't eaten for years since I took over the cooking. I imagine the first meal she ordered was a baloney, ham and yellow cheese sandwich on white Wonderbread, slathered with Sandwich Spread and Miracle Whip and margarine with several Bread & Butter pickles squeezed between the layers, accompanied with Cheetos (just leave the bag here, please) and, of course, dessert: Several handfuls of Hershey's Almond Kisses.
Regarding this post, make that "hospice grief counselor". Damn, and it was clearly written right in front of me as I typed that post!
Where is my mind, these days?!?!
Don't answer that.
Bereavement Observations #3: Dreams of the Dead
About a week ago I awoke out of a curious dream. I don't remember all of it, but what stays with me is that my mother had been resurrected and she and I were discussing the details of having to announce to the rest of our world that she had come back to life.
There was no question but what she had died, we were agreed on this. She remembered having died. I remembered her having died. She looked slightly different than she actually did over the last few years: Her skin was smoother than before (something that would have pleased her, I'm sure, since she was bothered, for years, by her early, prodigious wrinkling, a physical trait inherited from her mother), for instance, and she appeared to have lost some weight. She did not, however, look younger. Her hair was short, thin and white; she was dotted with the "liver spots" which so often fascinated her. Her usual features, though, were exactly as they had been at her death.
She was not sitting in her rocker but, rather, at our dinette table. Further, she was not facing the table, as was her pre-death wont, but was perpendicular to the table, facing me. She was relaxed and appeared to be much more mobile than she had been in some years. She had no idea how it was that she had managed to return from the dead but she was not concerned about how or why it had happened.
As we discussed the difficulty and absurdity of convincing people that she had returned from the dead, she opened her arms and said, matter of factly, "Well, here I am. That's going to be hard to dispute."
I agreed, and laughed.
We set upon listing notifications that needed to be made: Changing her tax profile for last year, for instance; retrieving death certificates that had already been sent. We both agreed that it was serendipitous that I hadn't completed much death business at that point.
"Do you suppose," I remember her musing as she tapped the table with the tip of her right index finger, a habitual tic of hers when considering solutions to problems, "there is a certificate that covers this type of circumstance?"
That's when I awoke.
Bereavement Observations #2: Comforting Embraces
A couple days ago I finally figured out, to my satisfaction, anyway, the attraction for me of sleeping on the couch in the living room. When I settle onto the couch for sleep, because the couch (left folded as a couch, not opened into full futon position) has a back as well as a "bed" and because it is located in the part of the house in which the majority of Mom's and my living took place, I feel as though I am being embraced by the couch and by this home when I sleep on it. In addition, the couch affords far less room for sleep than my bedding; thus, the cats, who always sleep with me, sleep either on top of me or so close to me that it is hard to tell where I end and a cat begins. They become a part of the embrace I seem to need, right now, as I sleep. Physically, sleeping on my bed, either in my room or in the living room, is far more comfortable for me and allows for a much more restful sleep. After one or two nights of those arrangements, though, I find myself migrating back to the couch. Perhaps, in the weeks to come, I will find my need for a physically restful sleep more important than a need to be comforted while I sleep. In the meantime, though, the couch, in the living room, with the cats, provides me with what I really need when I sleep: A sense of being protected and nurtured during what feels like this onslaught of mortality.
Bereavement Observations #1: "Only [death] can break your heart..."
The site to which I've linked the words in the immediately previous post has an interesting paragraph in this section that states: "You may start to feel better in small ways in about six weeks." It goes on to say, "...though that grief takes its own time." This is certainly true in my case. As far as I can tell, as well, I haven't even begun to "reorganize [my] life around [my] loss." Maybe I'm just stubborn, but "plans for the future", including those I blithely made when my mother was alive (my oft mentioned list of "Things to Do when My Mother Dies" continue to seem presently moot.
Oddly, about a month ago I was much more gung ho on "making plans" than I am now. A month ago I was able to envision a future, short and long term. I am no longer able to do this. As I mentioned to my nephew recently, one of my inherent characteristics is brooding. As well, I tend to ignore the overwhelmingly negative connotations of "brooding" and consider, instead, that when I am brooding I am accomplishing the same task as a hen sitting on eggs...I'm providing an optimum environment for hatching. Maybe I didn't do enough brooding a month ago and am getting around to it now. I'm not sure. What I do know is that, within the last month, the reality of death, not just my mother's death but death, in general, especially as it encroaches on the lives of those of us living through the deaths of loved ones, is what has me awed and dumbstruck. I am astonished that, through all the deaths I've experienced, I've never experienced the deaths of others as a capitalized Obstacle. My mother's death has placed Death as An Obstacle squarely in front of me and it is the hardest part of this experience of loss with which I'm having to contend. It is impossible to ignore or sidestep. Even as I attempt to continue normal activities, without warning The Obstacle looms in front of me at the most inconvenient of times and blocks me until I figure yet another way to get through it, or, perhaps more accurately, until I surrender and let The Obstacle move through me. The first couple of times I had this experience I thought, once I'd permitted The Obstacle passage, "Ah, well, that's taken care of." Now, though, I know that The Obstacle requires several pass-throughs and isn't yet satisfied that I have come to terms with it. I don't blame it. I haven't. I assume I will, but I don't have any idea how long this will take. I assume, as well, that being confronted by The Obstacle will happen less and less frequently...but, at the moment, the frequency of confrontation seems not to have abated.
* Thanks, and apologies, to you, Neil Young, for this song.
Much of the following material can be easily accessed on the web, but I'm so fascinated with the terminology of bereavement that I've decided to post them, here. Clear explanations are available at the About.com links listed in this post. However, I found clear explanations that I prefer at an alternate site, as well. I'll attach the appropriate links to the words.
- Grief: Reaction to a loss.
- Mourning: Process of adapting to a loss, distinguished by action (either internal or external) and often influenced by societal and cultural dictates.
- Bereavement: The state of having experienced a loss, which includes the loss event, grief and mourning.
I've just been informed that the person to whom I've been referring as "Hospice Chaplain" is actually the "Hospice Bereavement Counselor". Different titles imply different duties, different client expectations and different responses, so the correction is not insignificant. The one thing I don't want to do is pass misleading information on to people who are and/or will become involved with hospices through the ends of their or their loved one's lives.
Later. [I've noticed, lately, I've been dropping this usual last paragraph from my posts. I'm not sure why but, when I remember it, it sounds right...when I don't, it sounds right.]
My Very Dear Prescott Friend called me this morning...
...to tell me there's a good chance that she wouldn't be able to make the next book club meeting a week from today. She'd volunteered to provide refreshments and asked if I could deliver them to the meeting. Nothing fancy: A bottle of white wine, a bottle of organic lemonade, some cookies. Because there is an ongoing pipe replacement/road reconstruction project going on in her area of Prescott and the "as the crow flies" route to her home has been replaced by a confusing detour (all detours in Prescott are confusing, frankly) she even assured me that she could deliver the refreshments to my house in order to save me the trial of trying to get to hers. Assuming she's right and she won't be able to make the meeting, one way or another, between us we'll get the refreshments to the meeting.
She isn't sure she'll be able to attend because her husband is having hip replacement surgery on a severely arthritic hip Wednesday and will be recuperating next Monday. She hasn't made an absolute decision to forgo the meeting but pre-surgical conditions at her home, at the moment, are such that she expects she'll not be attending. The surgeon has instructed that, as of late last week, he engage in as little movement as possible, which he was attempting, previous to these instructions, simply because he is an "ox" of a man, hates not being able to move independently and has insisted on moving through the pain.
Thus, their household has been thrown into the contingency of intense needs caregiving. My friend is expecting one daughter's family to arrive tomorrow and another's to arrive Thursday to help out, emotionally and physically, through the operation, but she and her husband are, at this moment, on their own and will be, again, sometime next Saturday when family leaves.
Both my friend and her husband are in their 70s. Both are hale and hearty, physically and mentally very active. They take excellent care of themselves. If you were to meet them you'd swear they are in their 60s. As well, their history includes raising several children together and hosting her mother in their home until her mother's death some decades ago. Neither of them is unfamiliar with intense needs caregiving but it's always been at least the two of them performing caregiving, sometimes more, when children were at home. This time, too, her husband is nervously unfamiliar with being an intense needs care recipient, which makes it hard on both of them. Although there is no reason to believe that my friend's husband's convalescence and recovery will not be short and successful, this period and the period immediately after his recovery is extremely demanding on both of them.
"I understand your decision, now, to stop attending the book club meetings," my friend told me this morning. She repeated several versions of this before we ended our conversation. In between repeats she related what she's been going through since late last week. "It's not that it's physically demanding," she said. I believe her, as she's strong, so is her husband and she tells me he is allowed to tend to certain personal chores with little or no help from her. "It's everything else. I wasn't aware how much he pitched in here until he couldn't. I'm doing everything. There just isn't time, anymore, for me to do the things I usually do. It's the mental aspect of it. The attention. He calls me several times an hour to do things that he would normally do for himself. I'm constantly listening, listening, listening. My attention is exclusively focused on him." She doesn't sound like she minds. She knows this is necessary and she's a cheerily accepting sort. She's just surprised at how much the tasks of and the adjustment to intense needs caregiving takes, especially when you're the only one in the hot seat. "It doesn't matter what I'm doing," she tells me. Whether she's running an errand (often a weekly errand that he used to run) or at home, her attention is focused on him, listening for his needs, anticipating them...mind you, he is not a particularly demanding man and, as well, doesn't like to be waited on, but, he's not in a position to do much for himself, either, right now.
It was important for her to compare notes with me, now that she, as she admitted, "gets it", about what being a lone intense needs caregiver involves, how it affects a person's life and why someone who is an intense needs caregiver makes certain decisions, which just about every piece of caregiving literature derides, to, in effect, make the needs of someone else's life one's own life-needs. She admitted to me that even if her husband's convalescence goes well and he feels competent to be left alone next Monday night for three or so hours, she may not attend the meeting, anyway, because listening at home is easier than listening away from home.
"I will never, ever, again, criticize any decision you ever made about what to continue and what to stop while you were taking care of your mother."
"It's not easy," I told her, "but, what makes it hard isn't necessarily the choices you make on behalf of caregiving, it's that your circle of friends and family and the experts, too, are constantly at you to 'take care of yourself', 'do things for yourself', 'make sure you don't lose yourself', without realizing that their advice would have you living two lives, while the decisions you make that they criticize actually make it possible for you to live just a little over one life, which is about all anyone can handle. Everyone does it in the way that suits them best. Lots of times, those ways don't agree with everyone else's assessments. So, you block out the peanut gallery and do what you have to do."
"I know," she said. "I see that, now."
"Anything you need," I told her, "if you need to me to run errands, help you out at your house, figure out how to negotiate the current detour [because the detour changes, sometimes incrementally, sometimes drastically, from day to day], listen and commiserate, understand your decisions about what you decide to do and not to do, anything, call. I'll keep in touch with you, too." I'm sure she'll ask, if she needs anything. She's not afraid to ask. I was never afraid to ask, either. I just, finally, got tired of being turned down, most of the time; of receiving offers of help I didn't need while getting refusals of help I did need.
And, you know, I get it, too, and I'll be there for her. Whatever she needs. Whatever she needs.
Yes, it was a relief to finally receive validation on how I chose to live my life while being my mother's companion and caregiver. More important, though, was the validation of my belief that we have a long, long way to go before we learn how to support our intense needs caregivers to the Ancient and Infirm. Millions more of us will be called to the task and find ourselves disproving and, finally, rewriting, the literature of the day about what it takes to give this kind of care, what advice to give to the caregiver, who to advise and how to remold our society so that appropriate support is in place for everyone who is called to intense needs caregiving. We will, I suspect, realize that those who become involved in intense needs caregiving tend to find, on their own, the advice they need relating specifically to how to give care. Those sources are in place and easy to access. The people who need to be advised are those watching intense needs caregivers and telling them to take, rather than supporting them in their choices on how to take, care of themselves. When those books are written, it will be obvious that we all finally get it.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson