My mother-in-law is back in the hospital recovering from a UTI. We’d dealt with this before, when she was living with us, but we’d never seen her this wiped out from it. On Sunday, we honestly thought this was the end. As of today, she’s doing remarkably better.
This is yet another layer of the reality that is Alzheimer’s. And this is, yet again, why I’ve come to have ZERO patience with people making jokes about it (“Lost my keys again! Damn Alzheimer’s! Eh heh heh heh HEH…”). You don’t just forget where you put stuff. You don’t just blank out on names. You forget people entirely. You forget how to use utensils. You forget how to speak. You no longer have the means to communicate when something is wrong. And once all the cognitive stuff is wiped out, the disease attacks the rest of the brain, the parts that regulate things like swallowing, breathing, and fending off illness. I could break it down further, and paint quite a vivid picture of just how fucking horrible this disease is, but I’ll spare you. Just – THINK before you make an Alzheimer’s joke. Please.
And so while my mother-in-law is bouncing back from this infection, these emergencies will become more and more a part of our reality. Eventually, Aviv is not going to be able to accommodate her. Eventually, she is going to require around-the-clock nursing care. Thus, we start our next round of plans and provisions. She no longer lives with us, but the caregiving continues.
I’m tired. I’m sad. I know in my heart that this is not the life she would have wanted for herself, even as I still struggle to remember who she was before the diagnosis. The IV fluids and antibiotics have roused her. She’s sitting up, she’s cheerful, she even ate a little pasta last night. In all probability, she’ll be back at Aviv by the end of the week, having her nails done and watching Family Feud in the dayroom. I’m relieved that this wasn’t more serious, and yet I know I have to gird myself for the battles which most certainly lay ahead. Because “more serious” IS coming. Maybe not tomorrow, or next month. But it’s coming, boy howdy.
Natch, this isn’t exactly helping with my depression. But I’m managing. Trying to give myself a break here and there, by not clobbering myself over my weight gain, my periodically wanting to retreat into hours of crap television, my not being at Aviv 24/7 to make sure Marcia doesn’t get another UTI. I’m wired to feel guilty for just about everything. I can still rattle off an Act Of Contrition like nobody’s business. Your candidate doesn’t make the ballot? Hell, that’s my fault, too. Working on that.
More than ever, I’ve got to lean on that “one day at a time” thing. Because while drinking is not anywhere on the agenda today, I’ve got to do the thing that I’m constantly telling other people in recovery to do, and that’s to look down and see where my feet are. Because when I don’t do that, I’m mentally living in moments that haven’t even happened, and they’re mostly pretty grim. And they FEEL 100% real. I’m not sure that people who don’t experience anxiety like this entirely understand that last point. I can be utterly convinced the horror show in my head is totally going to happen.
In the meantime, I’m staying hydrated. *I* don’t need a UTI on top of all of this.
I’m on “staycation” this week. I started with a bang, by getting my medical stuff in order for another year. Physical, then mammogram. Because I know how to party.
I had a Come To Jesus moment with my primary doc. While I’m basically healthy (perfect blood pressure, cholesterol okay, nothing terribly alarming in the blood work), a few things came back which need to be addressed. I’ve been anemic my whole life, but am now on mega-doses of Vitamin D, since my diet has been – admittedly – pretty crappy over the last few years. I’m also now on prescription nasal spray, because I’m a pretty princess. I’ve got swollen lymph nodes, not a total surprise, since this is also a chronic problem I’ve been dealing with since I was a kid. TMJ, likely caused by stress.
And I need to lose weight. Also not a surprise. My doc hadn’t been terribly adamant about this until this most recent appointment, knowing the pressure I was under the last few years when I was still a caregiver. But now that my mother-in-law is in a memory care facility, it’s time to deal with it. Doctor’s orders and all.
I put on about 35 pounds in the years since we moved in to take care of her, mostly from stress-eating and not making time for myself to properly exercise. I became extremely depressed in the final year she was living with us. In the year since she moved into memory care, I’ve taken off about 7 pounds. My doc would like to see me lose another 10 – 15. I’m older now, and also on medication which slows my metabolism. But what I’m being asked to do is hardly impossible.
I’m not obese, but I’m not at a particularly healthy weight, either. I managed to stay connected with my recovery community, and therefore stayed sober throughout, but I fell back on other bad habits I’d worked so hard to keep under control. Most of what I am dealing with is reversible, or treatable.
But as it stands, I’ve got extra pounds on me, and that feeds into my body image issues. As much as I rally for body positivity, I fall short of the glory when I look in the mirror and start in on myself, saying things I would never, EVER say to a friend or loved one. And that sucks. I feel like I took so many steps back, that even the smallest step forward is barely noticeable. I have so much work to do on myself, almost more than I did when I first got sober, to be honest.
I say all of this because it’s important for people to realize that caregivers of people with Alzheimer’s or other forms of dementia rarely emerge from caregiving without health problems of their own. Are there things I could have done differently during those years? Of course. Ultimately, I chose to overeat. I chose to sit on the couch and watch movies after putting my mother-in-law to bed, instead of taking that time to take a walk, or go to the gym. I chose “comfort.” I chose to believe that what I was doing was “self-care.” I chose these things because I was in an incredibly stressful situation, and my coping mechanisms were compromised. Even if I hadn’t fallen back into my food issues, I would still be dealing with the near-crippling anxiety, the TMJ, and – arguably – the elevated blood pressure.
Certainly everyone who knows someone with Alzheimer’s is affected in some way, but it’s caregivers that really take a hit. I am no hero for doing what I did. If I knew then what I know now, I probably wouldn’t have done it. I’m being honest. But it has made me more of an activist than I would have been if I hadn’t packed up the trappings of my hipster urban lifestyle to move to my husband’s childhood home and help take care of his mother. And I see what caregiving is doing to friends of mine who don’t have the options we did. And at least once a month, I get an email from someone whose parent has just been diagnosed. Alzheimer’s is this vaguely awful thing that we don’t really understand until we’re in the throes of it, and see what it REALLY does. And it’s fucking terrifying. I cannot stress that enough.
I am doing the Walk again this year, as I have done for the past several years now. And I intend to be even more of a voice for the people who are too exhausted to speak. I’m lucky. With the help of a Geriatric Care Manager, we were able to determine that we had the resources to move my mother-in-law somewhere safe. I did not have another year of caregiving in me at the end, but I had choices. So many caregivers don’t. Raising funds and awareness is not simply for research towards a cure, it’s also to provide more resources for families and caregivers. They need help, and they need to know they’re appreciated.
I wrote a piece for The Flounce the other day about helping friends and loved ones in crisis. Kind of a “what not to say” thing. I’m only a year out from no longer being an in-house primary caregiver, so the feelings there are still very fresh, perhaps to the point of misinterpretation.
We went to visit my mother-in-law yesterday. She has her “lively” days, and this was not one of them. She wasn’t depressed or despondent (she seldom is, and we’ve found that it’s still fairly easy to redirect her when she does become upset), but she was listless. She was sitting in the “quiet room” when we got there, napping in one of the wingback chairs, but woke up when we said her name.
What was it like? It was like interacting with a sleepy toddler. She sat in the chair, kind of cooing and babbling.
Occasionally she can eke out a partial sentence that seems like it’s going somewhere, but then it fades off into more gibberish. There are no real conversations. We can ask her how she’s doing, and sometimes she’ll remember to say “Fine.” But mostly it’s acknowledging whatever she’s saying, and not trying too hard to decipher it all. She seems contented with almost mimicking the back-and-forth of a conversation: saying something and awaiting a response. Yesterday, though, her cadence was very sing-song, like a small child consoling itself at bedtime.
Eventually, I handed her a throw pillow to fuss with, as this tends to trigger the need to tidy something, which in turn makes her a tiny bit more lucid. She stroked at it and made little furtive scratching motions on the embroidered side. She managed to do a number on several pieces of furniture that way, back when she was still in the house with us. She’d rub and rub at imaginary spots until it left divots on her coffee and dining room tables. We couldn’t salvage the coffee table in the end, but did save the dining room set. In the quiet room, there’s usually a basket of towels for someone to fold, or a box filled with sand and small plastic objects, to satisfy the urge to do repetitive tasks. I think these things must have been moved to one of the activity rooms; yesterday there were just the big leather chairs and a little white noise machine. I digress.
When we go visit, we usually pass several folks who live in the regular assisted living community, sunning themselves in Adirondack chairs or reading. The ladies are always dressed to the nines in bright colors and accessories. And I never see them without lipstick. They are fabulous. They are always happy to greet and be greeted.
I love passing them on the way in and out, but this is also painful. There are no guarantees in this life. Some of us will get to be fabulous old ladies, like my own mother, who doesn’t dare leave the house without her giant Dolce & Gabbana sunglasses that she found at a flea market.
My mother is a fabulous old lady. My mother-in-law has been essentially infantilized by her own brain.
It angers me that she’s been cheated out of being as fabulous as I know she could have been. She’s broken most of the great costume jewelry necklaces I packed for her last summer, or twisted them the around the Lladro figurines I put in her room, creating strange little works of art that make sense to no one but her. She still gets her hair and nails done (there’s a little salon on her floor called “A Cut Above”), and when she’s freshly coiffed, she looks like she could say, “Get me the hell out of this place and let’s go to Rockport.” Instead she smiles beatifically and says, “Flibberty jipsum on the mo mo mah mah mah.”
So I leave after every visit with a heaviness that’s different from when I was with her every day. It’s a combination of remorse and relief. I know that I cannot do for her what the staff can. Every morning and every evening took everything that I had, mentally and emotionally. Getting her dressed. Getting her clean. The nightly ritual of lowering all the blinds and turning off lights so that something in her mind would kick in and she’d know it was time for bed. Fighting her over taking a bath, or even getting her to agree to a once-over with a washing mitt. Keeping her from dismantling another appliance. Keeping her out of danger. That’s no longer on my daily to-do list, and I’m grateful. But my own shortcomings were such that we had to move her out of her home. I still feel guilty about this.
I leave feeling such sorrow for her, and everything that’s she’s lost. What’s fair about any of this? I talk to others who are dealing with sick parents. Sometimes you find yourself comparing your situation to another’s. “It’s worse for my dad, because he knows he’s dying.” “It’s worse for my mom, because she’s losing her mind.” The thing is – it’s ALL watching someone deteriorate. It’s ALL confronting mortality and frailty. There’s no comparison. There’s only grief.
I feel so hopeless sometimes. As much as I appreciate my life as it is right now – living in a house I’m happy to come home to, with neighbors who are engaging and funny and kind – it came at a cost. My faith in any sort of a just and concerned Universe/Higher Power/Flying Spaghetti Monster has been shaken to its core. I don’t know what or who I’m praying to, and I’m simply not at the point where I can accept entropy, or nothingness. I can’t make sense of any of this.
So I write. I talk to other people going through similar situations. There’s comfort in the similarities (“Your mother hoards paper towels? MINE DOES TOO!”). I wonder if some become sick because others need perspective, or more contact. I flail about for the right words to describe it all, hoping that in re-reading, it will make sense. I’m re-reading this now; it’s all over the goddamn place. It doesn’t matter. This is life in the shadow of illness sometimes: grasping at reason.
This morning I tried to think about what I was going to write, and I mostly kept thinking back to what I wrote last year. It was just about a week before my mother-in-law went into memory care, and I was just barely functioning. I was on auto-pilot, just trying to get through every day, trying to knock off the tasks in front of me and hoping things wouldn’t get too FUBAR, because I honestly didn’t think I had it in me to deal with anything other than just surviving.
In a lot of ways, that was like early sobriety. Only I wasn’t entirely stripped of coping mechanisms.
This year was better. Markedly so. It wasn’t without its stressors – emptying out her apartment so we could move in, and subsequently have our friends move into the downstairs apartment, was probably one of the most emotionally taxing things I’ve done. Sorting through the personal effects of another person, trying to assign value to these objects, and all the while doing so knowing that the person is still alive, yet unable to tell you to whom things should go…that is some brutally frustrating shit, you guys. I found myself fighting resentment left and right, because as a recovering alcoholic, I really don’t get to be resentful. At least not for very long.
The further I get away from that last drink (warm Chardonnay in a plastic cup, in case anyone was wondering), the more I feel like I have to really make a concerted effort to remind myself what a bloodhound for oblivion I was. How many hostages I took because I wanted an audience.
Three years ago, I wrote this:
I don’t want congratulations — I want understanding.
I want the people out there who are drinking themselves to death to understand that there is nothing romantic about being a drunk. It is not a cultural or artistic imperative to be a drunk. Drinking does not make you a better writer, a better artist, a better musician, or a better lover. It does not make you more in touch with the Universe, your muse, your emotions, or the person you’re trying to have sex with.
I want the people still out there, still trying to make it “work,” to understand that nothing is so terrible, no emotional terrain so unnavigable, that drinking will not make worse. I want them to understand that it’s not a balm; it’s poison. At the very LEAST, it is preventing them from processing their grief, pain, or frustration in a healthy way. It’s simple physics: you meet with a lot more resistance when you try to move through fluid.
I want people who don’t suffer from addiction, and the indignities it heaps upon those of us who DO, to understand that they need to stop making jokes at our expense. I want them to understand that we are not less deserving of grief or compassion when we die from our illness.
I stand by those words. We’re still living in a culture that celebrates drunkenness in the form of cutesy “wine humor,” yet looks upon the struggling addict as weak-willed and worthy only of derision. There is still so much willful ignorance when it comes to this.
And there are still so many people who won’t get what I have. I lost another friend this year to this disease. Brian was beyond kind and patient with me in my early sobriety, when I was just a blubbering mass of exposed nerves. We went out for bagels, we got ice cream, we went to the movies. He understood my need to fill those first days and weeks with all manner of stupid, banal shit. He was also the only person – EVER – to get away with calling me “Lee.” But he struggled, too. It happens with us. It honestly doesn’t take much to shove us off the straight and narrow and right into a ditch. As horrible as it sounds, I need to see what happens when we start up again. In a terrible way, that was Brian’s last gift to me. I am not immune, nor impervious.
It was another twelve months of loss and transition, but it was also a year in which I remembered how to take really deep breaths. It was a year in which my shoulders began the slow descent from just around my ears to where they more or less are supposed to be. I can actually start focusing more on my job, and my writing. I can write about something else other than being a caregiver. I can write about vampires. I can create ridiculous Photoshopped pictures of my 8th grade self.
I’m beginning to not feel guilty about how much I enjoy weekends. I’m trying to give myself a break from thinking about all the things I could have done better, the things I could have done to – I don’t know – slow down the process of my mother-in-law’s disease. I’m trying not to put the ugly things I’m thinking about myself into the thoughts and motivations of other people. And I’m starting to take off some of the 30+ pounds I gained while being a primary caregiver.
I am really trying to better myself through simply listening. I’m also trying to avoid comments sections.
And I’m not drinking. Miraculous. Unfathomable. Fucking amazing.
At one of the Assisted Living places we’re considering, they have something that I think they called a “dressing system.”
Dementia patients who are in need of particular “service layers” that include assistance with getting dressed have two closets: a big one, which contains all of the patient’s clothing, and a smaller, almost locker-sized one, which contains ONLY the clothes that are going to be worn that day. An aide comes in, selects clothing from the Big Closet, and transfers it into the Small Closet. The Big Closet is then locked.
The idea is that patients will be less overwhelmed at having to face all of their clothing in the morning. The decision of what to wear is essentially made for them.
I kind of like this, and wish I had a Big Closet and a Little Closet. (Only instead of aides, I’d have elves doing this for me. Because elves. Or maybe magic squirrels. Yeah.)
I like it because I don’t even have Alzheimer’s and I often can’t deal with figuring out what to wear. It’s also appealing because the way I’m feeling right now, having one less decision to make is enormously appealing. Whenever Coombsie asks me what I want for dinner, I feel like crying. I don’t know what I want for dinner. Anything. Just don’t make me decide. Yesterday? I had a milkshake for lunch because I didn’t feel like chewing.
I think maybe my whole life for the time being has to be divided into two closets. The Big Closet has ALL the problems and things to be ironed out. The Small Closet has just what I have to take care of today. The problem with this model is that I am presently completely incapable of deciding what goes into the Small Closet. That’s why I need magic squirrels.
Intellectually, you know it’s a possibility. You just don’t want to acknowledge it. And so when it happens, you simply are no longer able to live in that fantasy world where poop plays no role.
Since 2010, when we moved in to help take care of my mother-in-law, I’ve regularly studied the 7 Stages and tried to ascertain where we were at, how long we’d be there, and what we could expect as the disease progressed. We steered her through Stage 3, helping her buy Christmas and birthday presents, leaving sticky notes around her kitchen to remind her to turn the water off or close the back door. We talked her through her depressive episodes during Stage 4, and started collecting her mail, paying her bills, and ensuring she ate regularly and took her pills. In Stage 5, we started making sure she got herself dressed and undressed, noting that if this did not happen, she’d sleep in her jeans and sweaters, or stay in her pajamas all day. We realized she could no longer be left alone in the house. We hired aides to be with her on weekdays.
It was frustrating, but not insurmountable. My brother-in-law began taking her out on Thursday nights, and began bringing her more frequently to his house so we could get a weekend off here and there. She was addled, couldn’t really engage in any kind of meaningful conversation, but overall was cheerful and amiable.
But in the last year we’ve been witnessing and experiencing the slide into Stage 6. She hates the bathtub now. She refuses to take a shower. Even washing her hair in the sink is a battle in which I frequently have to admit defeat. I’ve been combing drugstores and medical supply companies for things like “pre-moistened bathing mitts” and “shampoo caps,” and as I buy these things, I whip past the “incontinence” section. Because we’re not there yet, right? Dear Jesus God please tell me that we’re not there yet.
We’re not there yet….entirely. But we’ve been teetering on the precipice of it.
It’s poop. I mean – I’ve changed my share of diapers. On babies. I have two cats. It’s not as though I’m a stranger to poop. And yet I live in near-daily terror of having to deal with it. With poop other than my own. We’ve had a handful of “situations” in the last few months, and I’m afraid I’m not a very big girl about this.
An acquaintance of mine is a CNT. She says that in her experience, the thing that caregivers are most afraid of is poop. Or rather, the impending likelihood of poop, as opposed to the poop itself. The spectre of poop. “If we ever let on to our clients how scared everyone is of it, it would be Poop Wars everywhere.”
Visit an online caregivers forum and at least a third of the threads are about poop. I’d say I talk about poop with fellow caregivers at least 4 or 5 times a week. Poop all over the hallway. Poop in the bathroom wastebasket. Poop stuffed down the drain and in the trash compactor. People with Alzheimer’s will fixate on things like spots on the carpet or twigs on the sidewalk, will do everything in their power to create some sense of order, yet think nothing of walking around with poop on their hands. Hygiene goes the way of the dodo, but by God, you’ve never seen a neater stack of dishrags.
But you do what you can. What you have to do. It’s just poop, after all. You smile and clean it up. You don’t argue with your loved one. You don’t scold her. It’s not her fault. She isn’t doing it on purpose. And your having to deal with it is not the worst thing in the world. You’re the one who’s still in control of your faculties, even as you’re learning that you have absolutely no. fucking. control. over anything else.
For the last few days, I’ve been sick. Wiped-out, snot-blowing, Dickensian-orphan-hacking SICK.
This has made caregiving more than a little challenging, but with faith, perseverance, and DayQuil, I managed to get through the weekend.
I made it through this whole dank, dark winter without so much as a sniffle, so I should have known this was coming. Because when I get sick, it’s always an event that can stretch on for weeks. It’s just the way it happens with me. I didn’t just get swollen glands as a kid; I got some kind of freakish blockage that required several trips to Mass Eye & Ear and about a month home from school in the 4th grade. I’ve also had two staph infections, and a bout with walking pneumonia in my twenties that pretty well ravaged my immune system. So I try, very hard, not to get sick.
Because I don’t just “get a cold.” It settles deep into my lungs and renders me sleepless for nights on end. Most over-the-counter cough medicines are out of the question for me, given my history. So I just try and stay hydrated, and load up on the rancid, root-y nastiness that are Fisherman’s Friend lozenges.
And yes, friends – I have tried VapoRub on my feet, apple cider vinegar, tea with honey, and just about every other olde-tyme-y remedy out there on the internet. I suspect what I need are just plain NARCOTICS, but this would require asking Coombsie to dispense it for me (I mean, I’ve been sober 11+ years but I still don’t entirely trust myself around the “good stuff,” cough-suppressant-wise) and he’s already managing Mom’s medications.
The last couple of nights I’ve been hacking so loud and so often that I’ve retreated to the couch in the living room, so that at least Coombsie is getting some sleep.
At around 3:30 this morning, on the couch, I had an epiphany. I was thinking about actually going back to bed, because I really, REALLY didn’t want to greet the dawn on the couch. That just struck me as horribly depressing, and I realized how long it has been since I’ve needed to pass out on someone’s couch.
I’d say I had to do this very thing, oh, dozens of times throughout my twenties. I’d get too drunk to manage to get myself home, and so I’d wind up on all KINDS of couches throughout the Greater Boston/Cambridge area. Coworkers, friends, ex-boyfriends…somehow they took pity on me and let me crash on their couches. Some would make them up into some semblance of a bed. Some would just leave me to my own devices. And I’d wake up on these couches, bleary, pained, and vaguely ashamed. Often I’d just tiptoe out as soon as I’d figured out where I was and how to reach the nearest T station (TIP: look for a pile of phone or cable bills for an address, kids!), and figure out the thank you and/or apology strategies after the fact. I don’t look back on my twenties particularly fondly. I did a lot of cool stuff, managed to get two degrees, and I think I thought I was having a good time. But in the 800-watt glare of sobriety, reality, and my forties, I see a young woman running herself ragged, trying too hard, and making herself sick.
And I KNOW that I don’t live that life anymore, and I KNOW that it’s my own couch I’m sleeping on (or attempting to sleep on, anyway), and come most dawns, I don’t have anything to apologize for. I just don’t like to wake up on my couch. I don’t like to start the day from my couch. It’s not natural.
I spent part of Sunday with my arms plunged deep into my mother-in-law’s washing machine, because my fingers were small enough to dig underneath the agitator to fish out about a quarter of a can’s worth of cat food.
Why was it in the washing machine? Oh, grasshoppers – ours is not to question these things. We live our lives straddling the line between “real life” and “Alzheimer’s life,” where the washing machine becomes the trash can, a can opener becomes part of an art installation, where used paper towels are to be lovingly folded and saved but an antique menorah goes into the trash.
Most days, we can navigate the randomness of living with someone with Alzheimer’s. We truly have to be in “One Day At A Time” mode around here. We try very hard not to say, “Well, next year she’ll be someplace where she can be looked after, and we’ll be able to do this, and this,” because the fact is we don’t know that. There are no guarantees in this life. It could be another year, it could be another three years. So we keep things, as much as we are able to, in the day.
I feel like all I talk about is Alzheimer’s, these days. I can’t help it; it’s kind of my LIFE right now. And I’m not even shouldering a quarter of what Kevin is bearing. I have known from the get-go that this is a progressive, degenerative, and fatal disease. 3 years ago, when she couldn’t drive anymore but could still go to the grocery store with us, I remember thinking, “This is kind of a pain, but I need to roll with this right now, because it’s going to get worse. Much worse.”
You have no idea what any traumatic situation is truly like until you’re living it.
I vent about it here because I can. Increasingly, I’m finding it more and more difficult to talk to people who aren’t going through something similar, simply because they don’t understand, and I find myself trying to explain what cannot be explained in any kind of succinct way.
I’ve always hated those xojane “How Not To Be A Dick To Someone Who ______” pieces. Mainly because of the title. People, by and large, aren’t dicks, or aren’t meaning to be dicks. But sometimes we say the wrong things without realizing it. I know that before I became a caregiver, I said most of what I’m listing below as things NOT to say, and I cringe when I think about it now. So, take this in the spirit in which it’s being offered. Here’s what not to say to a caregiver:
Why can’t you just put her in a nursing home?
We get this all the time. The short answer? It’s not that simple.
The longer answer? Medicaid will not pay for a nursing home/facility unless we can prove that it’s “medically necessary.” If we were to put her somewhere now, and pay for it entirely out-of-pocket, we would burn through her savings in pretty short order, and be right back where we started.
She is still able to more or less dress herself. If you hand her a toothbrush with toothpaste on it, she will brush her teeth. She cannot prepare meals for herself, but she mostly remembers how to use a knife and a fork when we make her something to eat. She is not incontinent (yet). She makes her own bed. Because of all this, she is not “medically eligible.” Putting cat food in the washing machine is a nuisance, but it does not warrant a nursing home.
So, please, stop asking this. It makes us feel bad, and even more stressed out, and like we’re not doing a good enough job.
You look/sound tired.
Thanks! We are tired. We are both crazily, brain-wastedly exhausted, and that’s even with the help we’re currently getting from family and aides.
We wake up, we make her breakfast, we “do the rounds” of her apartment to make sure there is nothing in the washing machine that shouldn’t be in there (like, you know, cat food), or anything else that could be potentially be a hazard (and at this point in her illness, that can be just about everything that isn’t nailed down). Then we work all day, come home, follow up on anything that needs to happen (based on the notes her aides leave), make her dinner, get her to take her pills, get her into her pajamas, and THEN think about dinner for ourselves. And I’m not even getting into the morass of paperwork that still needs to be finished, to make her eligible for this service or that service, and to get her financial ducks in a row.
So, yes, I’m sure I look/sound tired. Could you maybe compliment me on my hair instead?
You really should be doing this/that/the other thing at this point.
Believe me when I say that we KNOW what we should be doing, but because of financial and time constraints, we’re not there yet. Please don’t make us feel guilty about what is falling between the cracks.
Can’t you just put on some old movies/music and let her sit quietly?
Perhaps these things work with other dementia patients. It doesn’t work with my mother-in-law. In her well life she couldn’t sit still, and always had to be doing something. This is now exacerbated with her illness. Pre-existing anxiety issues plus Alzheimer’s is a very trying combination. She can’t sit for much longer than 15 minutes in front of a movie, and while she likes to listen to music, it doesn’t keep her from wanting to pull everything out of the china cabinet to “rearrange” it. We’ve tried, and are continuing to try, all kinds of things. Music, games, puzzles, repetitive activities. Some of them work. A lot of them don’t. Alzheimer’s symptoms vary wildly from person to person, and affect personalities differently. What works for your aunt/grandmother/co-worker’s mother may not work for Mom.
God/The Universe/The Flying Spaghetti Monster doesn’t give us more than we can handle.
I understand that this is supposed to make me feel better, but it really doesn’t. It’s very hard to look at it that way. Could it be worse? Of course it could. But when you’re in the thick of it, you don’t really have the energy to muster perspective.
You should get out more.
Do you have kids? If you do, then you understand how difficult this is. If you don’t – I’ll explain. Of course we should get out more. But this entails securing someone to sit with Mom, because she cannot be left alone. I mean – at all. Not even for a couple of hours. It’s also not really possible to bring her with us, a lot of the time. She gets very anxious in unfamiliar settings, even if those settings were places she used to go.
Frequently, any kind of outing involves our checking weeks, and sometimes months, in advance to see if a family member can stay with her or have her stay over, or if we can get one of her aides to agree to a weekend or overnight shift. If it’s something I want to do, a lot of times I have to take one for the team, and turn the invitation down. Sometimes one of us can go do something, while the other stays home with Mom. But right now, there is no such thing as a spontaneous outing, or even a planned outing in some cases, for the both of us. We appreciate being invited to your party/show/event, but please understand if we can’t make it.
Let me know what I can do to help.
This is the toughest one to address without sounding like a total jerk. This offer always comes from a genuine, sincere place. I know this. But it puts one more thing on our ever-growing list of things to do: Call mortgage company again, call lawyer again, clean cat food out of the washing machine again, tell friend/family member what they can do to help. We’re not prepared to say right off the bat: “Great! Can you do this, or this?” We’re frequently not in a place where we even know what we need, and to be honest – we’re often afraid to ask.
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Oy. I really don’t want to sound ungrateful. I know that people want to say the right thing. Here are some things that we do like to hear:
You’re doing a great job.
Even if we sometimes don’t believe it ourselves, we love hearing this. Really. So much of the time we are second-guessing our decisions, or feeling shitty because we feel like we’re so far behind on what needs to get done.
I’d like to bring over a meal/sit with Mom for a few hours so you can go out/do some research on facilities and services for you.
Not too long ago, a chef friend of ours left us a big bag of food on our front porch. Stuff that could be frozen and heated up on those nights when we were too tired to figure out dinner on our own. It was such an amazing and generous thing to do, and not something that we would have thought of on our own.
A simple offer to do something, no matter how insignificant you might think it is, means the world to caregivers.
Do you want to talk about it?
A lot of times, we would just love to unload on someone who’ll just listen without judgment or platitudes. Even if I sound rant-y and horrible. You don’t have to understand what we’re going through to just be an ear.
I really have no idea what this is like for you, but here’s Banthapug.
Banthapug makes everything better, even if it’s only for a couple of minutes.
Lisa McColgan 