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.
This will be my official "More Changes" post.
I was reminded of yet another change while watching, this afternoon, a TCM movie I'd DVR'ed a while ago, Once Upon A Time in the West. I don't know why I wasn't consciously aware of this change before because it's been going on since the day my mother died, or, well, maybe a few days after her death, since I and none of my family who came to visit that week used the TV or DVR for a couple of days into that week. The change has to do with TV volume. It's no longer necessary for the TV volume to be at "20" or higher. It wasn't uncommon, either, when my mother watched TV, for the volume to be at "35" to "45". For some movies and shows that were recorded at low volume, I can remember taking the volume all the way up to "63", which is the highest of which our TV is capable. Since my mother died the volume sits anywhere between "10" and "15". I think, occasionally, for low volume recordings, I may have taken it up as high as "20", but I can't be sure. I just turned the TV on to The Weather Channel, turned it up to "20" and that seems earsplittingly high, now. I'm grateful that my hearing didn't suffer from the TV volume that suited my mother. As some of you may recall, the police were once called on us here in Prescott because of the TV volume. That incident remains one of my (many) favorite memories of our adventure together.
I've not completely stopped using closed captioning or movie subtitles, but it's nice not to have to use them, as CC typically cuts into part of the video (not usually true of DVD subtitling, though). However, I'm glad I know how to trigger it, especially when I'm watching something that features someone who mumbles instead of talks.
One other change. I don't eat nearly as much meat as I did when my mother was alive. She needed it because of her chronic iron deficiency anemia and I don't dislike meat, so I ate it along with her. Previous to living with her, though, I used meat more as a condiment than as a "main event" and was happy with this. Without thinking about it, I've gone back to this way of eating. I can't say I feel "better" than I did when my mother and I ate according to what she needed and we both liked, but I don't feel "worse", either.
From now on, when I think of a change, I'll look up this post, add the change here and date it within the post. So that it'll be easier for me to get to both, I'll add both this and the original "changes" post to the Mom & Me Journals Special Posts section over there in the Links section to the right.
Yet another change that's dated back to a week after my mother died: This home produces so much less garbage that I typically put the bins on the curb for collection once every two to three weeks. I wait until they are about two thirds full. When Mom was alive both the recycling and the regular bin went out every week without fail and were full to the brim. More than a few times I'd have extra garbage that I would have to save until the following week for collection. Much of the garbage produced was my mother's disposable briefs (which we called her "paper underwear", which went over much better with my mother) and the other paper products which made caring for her much easier and much more sanitary.
I am astonished, now, when I think about how much garbage caring for an Ancient One produces. A good half or more is not currently recyclable, at least not in this country. Makes me wonder about the fate of landfills when my own Boomer generation reaches The Age of Disposable Product Maintenance. It's also hard not to consider how much less garbage we would have produced if I'd, for instance, used washable briefs and cleaning/catching cloths more. I wondered, too, how much more work would have been added to an already very busy day and how much reusable briefs, especially, would have increased the number of washes I did, thus, the amount of hot water and electricity used. I decided to google "adult diaper services". With "omitted results included" I got 10 listings, so this type of service doesn't seem to be particularly popular. I discovered, though, that reusable adult incontinence products that don't contribute to the waste stream and mimic typical briefs do exist. Here's a sampling of what's available. Wish I'd known about these. Yes, they're expensive, but significantly less so when I consider how many disposable pads and briefs I bought for my mother throughout our years together during which she was incontinent. It's hard to tell from the ads, too, how absorbent they are, thus, how many per day I would have used and how much they would have increased my use of our washing machine and dryer. In the last two years or so of my mother's life I was doubling up the heaviest duty disposable briefs and adding heavy duty disposable pads inside the inner diaper for her "night sleep" and, in varying degrees, for her nap, too. This combination almost never got her through the night without urine reaching the soaker pad. More than half the time, though, this combination got her through naps. Typically, too, because of the "wick away" quality of disposable diaper materials, we were usually able to get away with three to four changes during the day (not including the night briefs) without compromising her skin quality and comfort. From the descriptions of the reusable briefs, I can't help but wonder how effective they would have been for a someone who is completely urine incontinent, as was my mother in her last few years.
Out of curiosity, I toddled around the internet to see if anyone was addressing, at least, the issue of disposable adult briefs and recycling. I found a series of posts written at the Gilbert Guide by Gary Hirsh, "Incontinence Specialist". Yes, it's a commercial site and it sells products but the series is surprisingly even handed and informative. I learned, for instance, in this article why it is that most waste management systems (in the U.S., at least) allow used disposable briefs and diapers for infants and elders to be disposed of in the normal landfill waste stream: "viruses contained in human feces have not yet shown any danger to waste collection workers based on current collection methods". My local waste management system is one of these. I looked up biohazard guidelines pertaining to soiled incontinence products and discovered that hospitals and medical facilities are not necessarily required to dispose of them using biohazard disposal guidelines; they aren't even necessarily required to treat the products before adding them to the "normal waste stream". It should be noted, though, that a little further research alerted me that there is growing concern that disposable incontinence products should be considered a biohazard. This article rates the biodegradability of all the components in adult disposable incontinence products. It also states staggering statistics about how adult disposable incontinence products have, in the last two decades, significantly overtaken the percentage of landfill space that child disposable diapers and briefs occupy. This article mentions that one of the best ways to reduce the carbon footprint that disposable adult briefs are leaving is to use longer lasting diapers. It also mentions that while such products have been available in Europe for a long time, they are not easy to find in the U.S.
At least we're beginning to address this problem. I can remember, some years ago, conducting much the same research and finding nothing of value about this topic.
Oh, yeah! Forgot to mention the holidays!
My discomfort with the holidays remains the same as it was when my mother was alive, pre- and post-our-companionship. I know that I'll be spending Thanksgiving with family in Chandler but I haven't decided about Christmas, even though I was invited for that, too. I'm thinking I may simply trip down there post-holiday, while everyone's still off, rather than endure the spate of holiday events that crop up in their lives over Christmas. Last year it was fun, but I was numb and, anyway, I loved that my mother selected and provided the Christmas dinner for that celebration. I know, if she was capable of being aware of it, that she loved that, too. This year I'm not numb and don't have a catered Christmas dinner, courtesy of my mother, to offer. I've been invited for both holidays and I haven't exactly excused myself from the main Christmas celebration but I'll probably gently suggest my idea over Thanksgiving. I want to visit at that time, just to see everyone when they aren't het up in their usual extremely busy lives and, as well, my nephew has promised to take me shooting but, you know, I don't really want to "do" the actual holidays. That's normal for me. Decades normal for me (the second paragraph in the linked article clearly states my congenital attitude toward The Holidays).
Even though my mother was Mrs. Christmas, I don't miss that, this year. Since I rather enjoyed some of it, in fact, I don't not miss it, either. I'll be putting up one of our small fiber optic trees, the one that my mother and I loved best and had the longest. I'm looking forward to that. I'm looking forward to decorating it, too, because we collected some great mini-decorations for it. I'm especially looking forward to gazing at its light display at night in a dark house. I'm sure I'm not going to miss preparing a special dinner for Thanksgiving or Christmas, nor am I going to miss "our" questionable attempts at holiday baking. Since my mom had dispensed with "the bother" of sending out Christmas cards a few years before she died, I'm not concerned about that, either, since I NEVER sent Christmas cards.
The hospice organization that sponsors my grief support group is holding a holiday workshop next week. As the flyer states, it will provide "specific tools and strategies" that "can help you find ways to cope and to take care of yourself" during the holidays, since this time of year can be fraught with pitfalls for mourners of all stripes. One woman in our support group had an especially hard time over Halloween. Her husband was what could be described as a holiday maniac. For each holiday, no matter how seemingly insignificant, he had a holiday themed way of awakening her in the morning. "He was quite a character," she said, wistfully, after talking about what she missed during this years' Halloween.
Even though I'm not feeling any more than my normal holiday dread, I'm planning on going to the workshop, primarily because I like getting together with my group mates and look forward to seeing them twice, next week. Secondarily, though, our facilitator mentioned that it's not uncommon for mourners to expect to have no holiday-related challenges and then find themselves unusually overcome with difficulty; or vice versa. Although I'm expecting no new problems (I sailed through my mother's birthday [month, since, at her insistence, we always treated the entire month of August as her month] and mine without a problem), I think it might be a good idea to be prepared, just in case. I know, for instance, that, although every year, except for last year, we made it a point to spend one evening in the car touring the area in which we lived (pre-2004 it was sometimes Mesa) to dazzle ourselves with holiday light and decorative displays, I don't think I'll be interested in doing that this year. Although I love holiday light displays as much as my mother did, my chief delight during these escapades, which always took place fairly late at night when the whim hit us and we knew the traffic would be such that we could stop in front of spectacular displays and study them, was enjoying and sharing her reaction. It was an activity, too, in which I never indulged before I became her companion, so it is exclusive to our companionship. I suspect, and am uncomfortable with the possibility, that I will be prone to feel her absence in the seat next to me much too keenly for my taste. I will, however, be watching my favorite Christmas movies this year, starting with my two top favorites, Love Actually and It's a Wonderful Life. I will probably throw in a few from our collection of bible movies, as well, since my mother considered these "Holy Holiday movies" and the appreciation I developed for them, through her, has not abated nor does it carry with it any unpleasantness since she died. In early summer, in fact, I spent a few days enjoying a bible movie marathon.
Oh, and "just in case I don't see ya," (a quote from The Truman Show), I hope the holidays are easy on you, this year; especially this year.
Things that Have Changed Since Mom Died
- As I predicted in an earlier post (can't find it right now), my electric bill has been reduced by about two thirds (sometimes more) since last year. I've catalogued some of the reasons, here:
- Before Mom's death I used the stove at least once a day to cook breakfast (Mom almost always insisted on eggs and meat for breakfast) and more often than not used the stove, oven or both to prepare dinner, as well as our vegetable steamer. I'm still using the vegetable steamer a fair amount and I'm using the microwave only slightly less than before, but I'm lucky if I use the stove or oven once a week.
- I used to do at least one heavy duty load of washing and drying once a day, including running the dryer extra long to dry the blankets on Mom's bed. At least once every couple of weeks I did an additional wash per day. Now I estimate that I do one medium duty load of wash about three times every two weeks.
- My mother had a finely tuned internal thermostat that tolerated a narrow range temperature range. Thus, during the winter, the entire house, except my bedroom, was artificially heated well within what the house thermostat considers a "comfort zone". The bathroom she used was always artificially heated, day and night, including in the summer, because she was most often fully or partially naked in there and, as well, sink bathing exposed her skin to the coolness of evaporation. Now, I've turned that bathroom's heater off at the circuit breaker.
I prefer a much cooler home than my mother. All the thermostats are set a little above 50 degrees in the winter; thus, the heater rarely clicks on. During the day sun floods the living room during the winter and that heat is enough for me except on really, really cold days.
This winter, too, I'll be able to use the fireplace, although it hasn't yet been cold enough in here to do that. Since Mom was diagnosed with her various lung problems (long before her diagnosis of lung cancer) the fireplace has been off limits.
- During the summer, because of the heat generated by the variety of health appliances in our house (oxygen concentrator, humidifier, breathing treatment machine, etc.) we used the front room air conditioner steadily during the day for about two months and used the portable evaporative cooler steadily pre- and post-monsoon. Last summer I used the front room air conditioner maybe seven times, only in the afternoon and usually only when the humidity from the monsoon dew point became overwhelming. I used the evaporative cooler maybe an equal amount of time. I was, in fact, surprised at how little I used both. It was a revelation to discover how compatible this house is with my internal thermostat.
- For Mom, lights blazed quite a bit more than they do for me. The kitchen, dinette and living room overheads were always on from late afternoon until she went to bed. Her bathroom light was on a fair amount of time. Even when the living room overhead was on, so was the lamp on her coffee table next to her rocker; the combined light made it easier for her to read. Now, the coffee table light is usually the only light I use significantly. When preparing a meal in the evening I use the kitchen and/or dinette lights but they go off when I'm done. Bathroom lights are used only when I'm in the bathroom, which isn't often.
- Her health care appliances, I'm sure, accounted for a fair amount of electrical usage, especially the concentrator, which typically ran 12 to 14 hours a day (more during the last few months of her life when she was sleeping more). The heat they generated, as well, was not insignificant. The concentrator, alone, helped heat her bedroom at night.
- We used to use the electric kettle several times throughout the day. I now use it once or twice a day, never more.
- I use the computer probably about a third less than I used to, especially since I'm not writing in these journals as much as I used to.
- I no longer use the dishwasher for washing dishes. Previously, I used it once a day.
- I watch probably a third to a half less television than my mother did (including movies through the DVR).
- Water usage has been cut by only about a quarter, maybe less, although this only barely reflects on the bill because of all the other city services tacked onto this bill. I even had the city come out and evaluate the meter because I thought it should be registering less usage than it was, but the meter's fine. We just didn't use as much water as I thought we did or I now use more than I think I do.
- My hours are significantly different. I am rarely up past midnight, anymore. I can run errands any time I want, which continues to delight me.
- Grocery expenses are so much lower that it has been several months since I've been able to use the five cent per gallon discount on gasoline that my usual grocery allows if one buys over $100 a month in groceries. I'm sure I'll be downgrading my membership at Costco to the lowest category, since I buy only a few thing there, now: My carbonated water and paper products are about it. When Mom was alive it was typical that she'd get a yen for fast food about once a week. I can't remember the last time I bought fast food for myself.
- I used to awaken and spring into action. Now, I awaken and, after an early morning walk, I mosey into action.
- I'm reading, again! A lot! It's wonderful!
- Although my extended family mostly remains about as communicative as it was before, one of my sisters and I have rebonded since my mother's death and we communicate much more often than we have in the last several years. That, as well, is wonderful.
- I've changed the arrangement of the living room to suit me. It took me some months to do this but, it's done, now, and it's much more comfortable for me.
- I haven't, however, yet, permanently taken up sleeping residence in my bedroom. Although this may seem odd, considering that my mother and I slept in separate bedrooms, from my bedroom I was always aware of the sounds of my mother's sleeping in her bedroom. I depended on hearing these sounds as I slept. Although I try, occasionally, to sleep, again, in my own bedroom, I am still uncomfortably aware of her absence and the lack of mother-white-noise that used to accompany my sleep. So, I continue to sleep in the living room, the heart of the house, although I recently decided I should pull the futon couch into a bed, instead of sleeping on it as a couch. This has much increased my sleeping comfort and I'm finally sleeping more restfully.
- I haven't at all felt at loose ends since my mother died in regard to "doing". I was surprised at that. I thought, considering how full my day was of the various chores that accompanied keeping my mother alive, comfortable, feeling well and feeling loved, that I'd probably have trouble filling those minutes for awhile after her death. I didn't.
- I've switched to using the shower in my mother's bathroom rather than my own. I'd been considering the switch almost immediately after my mother's death but it took some months to accomplish. It's a better shower, though, in a larger, more amendable bathroom and I'm very pleased to have finally made the switch.
- The yard gets significantly more attention now than it did when my mother was alive.
- The cats clearly enjoy not having to share my attention with Mom. Neither of them appeared to grieve her absence. I was concerned that The Little Girl might, since she considered herself my mother's primary caregiver and was always at her side, awake or asleep, but she carried on admirably after my mother's death, maybe because she so closely attended her death.
- Although my household cleaning habits haven't changed (such as they are, thanks, Mom), the house is much less cluttered than it was when my mother was alive. Some of it, I think, is because I have the time, now, to put things away right after I use them, so I do. Some of it, too, is that I use so much less paraphernalia than I used to.
- My hands no longer hurt and cramp when I use them. I can open new jars and bottles again without resorting to pliers, knives and other tools. I'm convinced, now, that the hand problems I used to experience were probably connected to the leg and arm massages I used to give her daily and, as well, especially during the last four to five years, using my hands and arms as her human walker.
- I drink significantly less coffee than I used to.
- My mother remains on my mind all the time. I have not yet reached the point where I suddenly realize I haven't thought of her for periods of time here and there. That's okay with me, though. I am in no hurry for this to change.
- I do not dream about my mother, at least not that I'm aware. I expected, after her death, that I might, especially since she and I dreamed about the other fairly often. But, I don't.
- I miss reading out loud to her. A lot. Thus, since her death, at least a couple times a week, I read out loud to her and imagine the images her mind conjures as I read. She used to talk about these images frequently when we read together. It was one of my favorite times with her.
- I almost never talk to her, nor think to her. I don't try to avoid it. It just isn't something that feels natural for me. I think I assume that, if she is capable of being aware of me she knows how much I think about her. Occasionally, if I'm pushing through a rough spot, I'll have a moment when I'll say something like, "I wish you had been right, I wish we were still together the way we were before your death," or something like that but I am rarely provoked to utter even that much to her. In addition, I think some of my lack of need to talk to her is that anything that ever needed to be resolved between us was resolved. I also think that, since we were no longer living out a classic "mother/daughter" relationship I didn't feel orphaned by her death. Recently, when I spent an afternoon learning and refining chainsaw technique with my nephew and having an exhilarating afternoon, I sorely missed not being able to enthuse about it to my mother. I imagined how excited she would have been to hear about it. I imagined that she would respond with something like, "Well, I think I'd like to try that. When will MPNP be bringing the chainsaw up next?" which is a typical response I could have counted on from her right up to the moment of her death. The extent to which I missed being able to have this conversation with her surprised me...but it didn't do me in.
- Some of my friends that I made since becoming my mother's companion have been unpleasantly surprised that I remain as insular and "isolated" as I was when my mother was alive. My penchant for the lived-alone life, though, has been a hallmark of my life. That didn't change when my mother and I lived together and it hasn't changed since her death. I think some people I know expected that I would suddenly become social after her death, if for no other reason than to negotiate the sting of my mother's absence. Didn't happen. In addition, although I miss my mother, sometimes terribly, living alone, again, required no adjustment for me. As I remember exulting to my mother and father a few weeks after I first lived on my own, "I was born to this!" That remains true. I expect I will die, happily, alone.
Although there were adjustments I had to make, mostly internal, when I became my mother's companion, I think there are two reasons I had a knack for being a fine companion for her despite my love for living alone. First, I think, since my mother was very aware that I am a living-alone-and-loving-it person, she watched me grow up that way, she knew how to be with me "together". Second, I think she also understood that my desire to live alone is not because I am not socially skilled, nor that I am socially awkward. She raised me, after all. She knew I'd quickly find a happy medium, we'd both benefit and neither of us would make more, or less, of our companionship than we could stand.
- I continue to love that this house and property feel like her home as well as mine. I love that members of the family love this, too. I am in absolutely no hurry to change this into "my" home, exclusively. In fact, I suspect I never will feel this way. It is, and I hope it remains, one of our family homes, "Mom's and Gail's home."
In the meantime...later.
My 10 Months of Grief-Stricken Thinking
Wow! Hard to believe it's been so long since I've posted here. Reasons; hmmm...let's see:
- I think I've figured out why so many caregiver blogs stop after the death of the care recipient. "What is there to say after it's over?" seems to be the obvious answer but there is much to think although, for me, there has been little to think about my companionship of and caregiving for my mother and much to think about grieving her absence. Grief makes it hard to express what one is thinking, though. Some months after my mother died I joined a local grief support group. I know, I'm not a support group person but, I can tell you, I'm DEFINITELY a grief support group person. Being a part of the group I joined temporarily modified (or, perhaps "mollified") my usual urge to write about my life, thus, in this case, about grieving my mother. More about that and other grief experiences over at In Sane Grief (yes, I remain maddeningly compartmentalized).
- Around the same time I joined the support group I also became heavily involved in rallying support for health care reform within my local community and through my Legislative Rep and Senators and the President. That's been enlightening and highly discouraging, especially considering the outcome. It hasn't been canvassing for grass roots support that has been discouraging, despite what the media would have us believe about grass roots opinion. It's been working "on" the politicians and having to negotiate the media. Why would I mention this here? Well, I've been sure, for at least a few months, that my unexpected but highly understandable discombobulation from my mother's death and the end of our extraordinary adventure has had something to do with my despair over my attempts to help move this country toward reasonable, decent health care reform. It's very much akin to the what I experienced as I managed my mother's personal and medical business. I "won" for my mother, but it took enormous amounts of energy and stamina. I'm discovering that I only barely have the same for this health care reform fray. I expected my the experience I gained on my mother's behalf would be my strength. Turns out, it's a liability because, although the issues surrounding her life are resolved, the anger over what was required to keep her safe and comfortable remains. Perhaps I became involved in standing up to politicians and bureaucrats too soon after my mother's death but, unfortunately for me, the time is now, the fight continues and is even more urgent since Saturday's passage of H.R. 3962. I cannot let this go, so I'm stuck struggling with the multi-layered anger doing this provokes.
- Death business proceeds. I know, amazing that it isn't done. My sisters and I ran into a hitch in my mother's estate that demanded that we probate it, despite the revocable trust. We're having a paralegal manage this. We'd handled about a third of the death business ourselves before we encountered the hitch. Luckily, probate can be strictly "informal", a designation of the Arizona death statues, and usually is. It just involves a lot of paperwork and waiting, probably into the first part of next year. I am, however, in full control of my life despite this interminable death business.
If you're curious about my personal grief experiences, I've just written a post covering those over at In Sane Grief.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson