Posts Tagged 'PCA'

stuck day

today is a stuck day. i haven’t had one in a long time. i thought i was done with them. that’s lyme for you. once you think you’re doing better, it returns and kicks your ass.

you probably can’t tell today is different from my writing, except that i’m not using caps. if i tried to use caps, i wouldn’t be able to write/post. that’s because all i can move right now are my hands, my facial muscles, some minor head/neck movement like small nods, and the lower part of my right arm. with great exertion and pain, actually, i can move more of both arms, but that’s only for necessities, like signing, typing, positioning. i’ve also reread this later when i was more functional and corrected the huge number of phrases that made no sense.

here’s what a stuck day is like: i wake up and think, “oh, i have to pee.” i realize that i’m in a lot of pain and feel weak, and the idea fleetingly crosses my mind that i might need help to get out from under the covers. “nah,” i tell myself. “don’t be such a drama queen. once you get going you’ll be fine.”

So (oh look, i did a caps! the drugs are kicking in!), I roll onto my side, and i get stuck. i can’t get the blankets off me. i can’t even move my arms or my legs, i realize. i can’t talk. ohshitohshitohshit.

then, i have to find my call button. this is the doorbell i wrote about in a previous post. no, i’m sorry, i can’t put the link in right now. maybe later, when i can move. [note: i’m doing a bit better now, so i’ve put in said links.]

anyway, i need to hit the button which is now loose on top of my overbed table. with great effort i get my left hand up onto the table, and it crawls around like a crab, searching. i hit my “clik-r” clicker button, and i hear barnum pop up. sorry buddy. bad trainer. no cookie. eventually i find and press the doorbell button. thank god!

here’s the problem: i’m lying on my side with my back to the door. i can’t talk or really make any sound. i can’t move at all except my left hand. so when i hear carol, my pca, open my door, i know she is waiting for me to say something or indicate something. and i appear to be all snuggled up, asleep. i try to sort of flap my left hand, opening and closing it, hoping she can see it from where she’s standing, but apparently she can’t, because I hear the door shut. DAMMIT!

“well,” i think, “i’ll just have to ring again. eventually she’ll realize i wasn’t ringing by accident in my sleep.”

yeah, right. cuz i can’t find the fucking doorbell button this time. i press the clicker again another couple of times — barnum’s really curious as to what’s happening now — and i can’t find the button. through tremendous effort i pull myself up a few inches to better search the table and find the button. i grab it — not letting it go anymore today — and ring it repeatedly.

i try to roll onto my back so i can communicate better, but can’t. fortunately, betsy comes to the door. yay! I had assumed she was asleep. she asks if i rang. i sign “yes.”

she asks what’s going on. i sign, “stuck,” which is a v-hand shape, finger tips on either side of adams apple.

her sign is rusty. she can’t remember that word.

“is it your heart?” she asks.

I shake no, then fingerspell S-T-U….

“You’re stuck!” she announces.

Relief. Nod.

“Do you need to go to the bathroom?”

Affirmative.

Thank god, betsy knows the drill. carol does, too, but she has back issues and is getting over the flu, and betsy understands me when i’m nonverbal better than anyone else does. also she’s strong as a power-lifter. she pulls the heavy blankets off me. she pulls my legs toward the side of the bed. she moves my pchair into position. she grabs my hands and pulls me into a sitting/slumped position. I take a moment to rest, then she lifts me onto the chair. i’m no lightweight. i’m always surprised how strong she is.

barnum is overjoyed to see betsy — and me out of bed — and he throws himself between us, wriggling, wagging, kissing, pressing against us. he is soaking up betsy’s attention primarily, because she’s more capable of good butt-scratching than I am. i ask her to stop so i can give barnum some attention, have him just focus on me for a bit.

refreshed by puppy love, we get back to business. i take the call button with me to the bathroom. once there, betsy picks me up off the chair while i pull down my pants (fortunately the muscle lock has eased enough now that I can do this), and i pee . . . for a long time! (you know the scene in A League of Their Own when Tom Hanks pees endlessly and Mae/Madonna takes out a stopwatch to time it? it was like that, except i wasn’t all hungover and gross.) we chat a little, mostly consisting of me mouthing/signing, “this sucks. why is this happening?” and exchange more dog love. Betsy helps me back onto the chair and then settles me in bed (without the quilts, which are too heavy, and even when i’m doing better, could immobilize me just by their weight alone). i just keep my light organic cotton sheet and blanket.

then she leaves me to go do other things and carol steps back in. my first priority is getting pain and muscle relaxant meds in me, so I can function better. i do a lot of mouthing and miming to get across what i need. carol and i get my laptop computer open and readjust my position, overbed table, and screen so i can communicate with her by typing.

one of the worst parts about stuck days is when they are apparently caused for no reason. i have no idea why today i’m doing so much worse than yesterday. i don’t know if this is my fall crash, and now i will be wrecked for weeks or months to come, or if this is just a blip. i don’t know if this is a result of the new Lyme treatment drug i started Thursday. fortunately, i am too exhausted, painful, and crappy feeling to care much about what it all means. i’m just focused on getting through, minute by minute — or actually, task by task. i feel relief that i have carol and betsy here to help me. it feels so much better to have peed and have the right bolsters supporting me in bed. writing this blog gives me something to occupy my brain, other than worrying what the cause of Mystery Stuck Day is and whether it will stretch out into weeks or more from here.

(the meds are really kicking in now, which is good because i can move better and feel less crappy. but it’s bad because i took them on an empty stomach, so i’m getting sleepy and dopey, and i want to finish this blog before i go back to sleep.)

several times since waking up, i have missed Gadget so bad it was a physical ache. if i’d had the energy to spare, i would have cried. but that would have wrecked the small physical gains i’d made, and i don’t even think i have the lung capacity for deep breaths, so i just locked those feelings in. in my heart, i was crying. it’s 20 days till the anniversary of his death, and i feel so heavily the weight of his absence today. he could have helped me transfer — to and from the bed, chair, and toilet. he could have gone for carol or betsy so i wouldn’t have had the stress of not being able to indicate i needed their help. he could have carried messages to them telling them exactly WHAT i needed. he could have opened my door again and again so that i wouldn’t have had to endure what i did to find the call button the second time.

the only “help” barnum provided was licking my face a LOT. i certainly appreciated that, even more than usual, but a little emotional boost and distraction only gets you so far on a day like this.

there’s also the hindering Gadget would NOT have done. (For the record, Jersey wouldn’t have helped me much on a day like this, because she was trained and worked when I was much more functional, but she also would have been very easy — no demands.) gadget wouldn’t have jumped up with his forelegs landing on my legs after i was back in bed, causing severe pain. he could have let himself out to pee and then come straight back in. he wouldn’t have stepped on my burning feet when i was sitting on the toilet. and then. . . .

when carol left me after i was resettled and typing this post, barnum started The Barking. Lately, once a pca (especially carol, his favorite) leaves, he tries to demand their return. after all, i am Boring Lady, stuck in bed, not playing or giving love or attention, while he could be following carol around the kitchen, watching her prep my meals. hearing lovey-dovey talk. getting rubbed behind the ears. etcetera. so, the second they leave my bedroom, he sits at my door and barks.

which is why the pcas all have to ignore barnum until i get up for the day. but i am still dealing with the extinction barking while barnum tries his damnedest to change my tyrannical rule.

lately, i’ve been dealing with this by working on “bark” and “quiet” with him, but being nonverbal, i couldn’t say quiet. HOWEVER, having learned from the past, he knows 3 cues for quiet: ASL for quiet, the word “quiet,” and the sound, “shhhh.” I taught, “Shhh,” because it’s a sound i can make even when i can’t speak. the ASL for quiet requires lifting hands to mouth height, which I can’t do right now.

so, after he has started the very loud, very sharp barking, it occurs to me that i can actually do something about this. i try to call him over to put his front end on the bed near my upper body, but he really only knows all the many ways i have of telling him “off,” for all the times he tries to get on the bed, because normally he wants on and I want off. of course, today i am patting the bed and making kissy noises and he just stands there, waiting for me to make my meaning clear. I can’t communicate “up” nonverbally. something to remember for later: need to teach signed cue for “paws up!” but i have my clik-r, which, despite its other faults (not my preferred clicker), is good for a day like today for two reasons:

  1. it takes very little pressure to depress the button, so even on a weak day, i can usually manage it
  2. it’s very, very quiet. barnum has excellent hearing, so he can hear it even if i click during one of his ear-splitting barks.

fortunately, i always have treats close to hand, so i click and treat for a silent moment. then we start practicing “shhh,” which goes well. he’s bored, and now i’ve given him something to focus on. occasionally i throw in the cue for “bark,” just to keep things interesting.

i am having trouble pitching the treats onto the floor, so i hold my open hand, palm up, on the bed, a treat on it, and barnum takes it that way. much easier. also, interesting note: he was ignoring most of the treats i threw on the floor, because they weren’t “good enough.” But when i offered them in my palm, he took them. could it be the energy expended was not equivalent to the value of the treat if he had to chase it? Or that, love-bug that he is, the contact involved in taking from my open hand added value? or that he liked the chance to “eat off the bed” which he normally isn’t allowed? the novelty?

at any rate, this gave me an idea. i do want him to learn to have paws/front up on the bed when i need his help, when invited, but not to have any part of his body ON my legs or feet — or other body parts — as that’s too painful. so i moved my hands back, closer to my body, for treating, and he jumped up and settled his torso parallel with my legs. actually warmly just barely touching them. felt good, physically and emotionally. perfect.

then i c/t him for making eye contact, for being quiet and still, and started shaping him to rest his chin in my palm. i mostly used luring. usually i try to use targeting or shaping more than luring, but if there’s anything a stuck day teaches, it’s that you use what you can. when i offered the treat in my palm, i’d click when he put his chin in my palm to eat the treat. i did this many, many times. eventually, i pretended to put a treat in my palm, and when he went to get the nonexistent treat, i clicked for contact and treated in my palm. c/t for that, continued. sometimes actual treat in palm, sometimes luring with motion that suggested treat. after a while i shaped the beginnings of a chin target in palm.

as his eye contact got more frequent, i started introducing my hand signal for eye contact, which is ASL for “look into my eyes.”

it felt really good to be accomplishing something when i was able to do so little. i had gone to sleep with all sorts of schemes and plans to work on recall remediation, using the great outdoors and Premack principle stuff i’ve been learning on the training levels list, because barnum’s recall (meaning, coming when called) ranges from great to eh to abysmal/nonexistent. but today’s physical and communication issues put the kibosh on that.

sometimes, actually, it seems like the best training occurs without plans, without grand expectations, but just by using my instinct, my thumb on the raised clicker button, and whatever the dog’s willing to offer. life with disabling chronic illness is unpredictable, and as wheelie catholic put it in a blog recently, that’s the thing about access — it isn’t a problem until it is. much the same as with everything with a severely fluctuating disability — it isn’t an issue until it is.

suddenly, nothing could be taken for granted, and it forced me to get back to the fundamentals of clicker training: see what the dog is offering, and shape it using just a click and some food. no target sticks. no body movement. no voice. it granted me a great feeling of power and control, of communication and making things happen, on a day when i otherwise was pretty well powerless and struggled to make myself understood by the people around me.

i still missed gadget terribly, because we already had a working language, and because he could have actually helped instead of just offering a challenge to overcome. On the other hand, i did tell barnum’s breeder i like a challenge. be careful what you ask for.

Please comment, if you feel inclined.

-Sharon, Barnum, and the muse of Gadget (and Jersey)

Back Back Back: A Year Ago Today

Back, back, back
In the back of your mind …

When you sit right down in the middle of yourself
You’re gonna wanna have a comfortable chair

-Ani DiFranco

Backdrop

I’ve been feeling depressed lately. I thought it was mostly health stuff. Ten days ago, my doctor told me that my complete blood counts (CBCs) were showing abnormalities, and that I had to stop all treatment for Lyme disease and coinfections — eight medications in all, including intravenous and intramuscular antibiotics — because medication toxicity was the likely culprit. If my blood work was normal for a month, we could discuss how and which treatments to resume. If it didn’t, I’d need to see a hematologist. She added that if my medications were not the problem, the cause might relate to “bone marrow,” such as “leukemia.” Terrific.

I had the leukemia flag waved at me a few years ago by a doctor trying to convince me to go to the ER, which I’d been refusing to do. His scare tactic worked. I went, and it turned out to be a lab error, as I’d expected. In this case, we have several weeks of abnormal tests to prove it’s not lab error, and I really like my current doctor, but I think casual cancer references should be illegal.

Background

A few days ago I received copies of the blood work my doctor’s concerned about. Some of the things that were wrong, such as abnormal lymphocyte counts, reminded me of reading Gadget’s CBCs. In fact, the reason I can decipher a CBC is that after Gadget started chemo, I studied his every week. I researched what each abbreviation stood for and what it could mean for his health. I bought veterinary manuals. I learned all I could about canine lymphoma and its treatments. He ate a homemade cancer diet and received Western and Chinese herbs, supplements, acupuncture, and chiropractic. The average life expectancy of a dog on Gadget’s chemotherapy protocol (Madison Wisconsin or CHOPP) is a little over a year. Gadget lived half that.

When Gadget was diagnosed, I also had a feeling of foreboding — about myself. Even as I was sure I could beat the odds for him, I had a bad feeling about what it would mean one day for me. Gadget and I were as close as I thought it was possible to be (until we got even closer, during the months he was sick), and we shared many of the same health problems: food sensitivities, bad reactions to drugs and chemicals, neurological issues, thyroid problems. I had raised him as healthfully as I thought possible. Like me, he was exposed to no pesticides, no cleaning chemicals, no preservatives or additives in his food. We lived in the country, and he drank clean water and breathed clean air. With his lifelong health problems, I’d always known that the longevity deck was stacked against him, due either to genetics or his early life. I suspect he came from a puppy mill. Still, I had never thought it would be cancer that would take him from me. My friends and family were similarly shocked: “Cancer? No, it can’t be cancer. Not Gadget. Not with the way you care for him….”

When I accepted that it was cancer, I thought, “I’m next.” A lot of people with MCS get cancer. I don’t know how often it’s directly related. In some cases, it’s clear that the chemical injury that caused the MCS also led to cancer. In others, it isn’t. Cancer is so common in the general population, it might just be coincidence for most. Regardless, with all my own illnesses and my history of chemical injury, and the fact that I got sicker instead of better despite all my efforts, when Gadget’s diagnosis was confirmed, it was hard for me to shake the feeling that it meant something for my health too. After all, we were two parts of the same body/soul, with so many of the same obstacles thrown in our paths. Some part of me settled into a silent conviction that it was my job to care for him until it happened to me, too.

Then, all the work of battling cancer distracted me from myself. Focusing all my energy on Gadget’s physical health and his happiness kept me too busy for the next six months to allow those thoughts again. When he died, they resurfaced, but I pushed them away. Until now.

Backslide

As I wait out this month for my test results, my symptoms charging back as treatment is withheld, I’ve become depressed. At first, I wasn’t sure why. There are a lot of potential reasons: Feeling sick feels bad, in itself. Not knowing why I’m doing worse — is it the tick-borne diseases letting loose, or is it something else? — is scary. If it is Lyme & co., will I be able to return to treatment, or will I spiral back down to where I was two years ago, back to a life of severe loss of function and intractable pain that felt marginally bearable largely because of Gadget? Could it be that mood/behavior changes, which can include feelings of hopelessness, had returned along with my other neurological symptoms? In this case, how could I know which of my feelings were “real” and which were the bugs eating my brain?

Backtalk

You might think that Barnum would cheer me up, but I’ve actually found raising him in the shadow of my grief to be confusing. Sometimes, I feel joyful, triumphant, and proud that despite my inexperience with puppies, his challenging mixture of personality traits (to be enumerated in future posts), and my significant — and currently, extraordinarily unpredictable — limitations, we are managing to make a go of it. Other times, I am so angry with myself and wracked with guilt by mistakes I’ve made or frustrated by his puppyhood — the concepts he doesn’t understand, the final steps of housebreaking, the exuberance that just isn’t fun when it involves bodily harm or the barking zoomies at 3:00 A.M. — that I question whether getting a puppy was the right decision. I argue with myself:

Me 1: “Gadget wasn’t like this.”

Me 2: “But Gadget wasn’t a puppy when you got him.”

Me 1: “But I never questioned that Gadget would be a great service dog. We struggled with a lot of things, but I had total faith that we’d be a team.”

Me 2: “But that was partly ignorance! You didn’t know all the things that could go wrong. Now you know so much more about the many reasons a dog can wash out, and how a dog has to want to work. Back then, you just took for granted that a dog that had more gusto than Jersey would love to work. Plus, you have more disabilities now, which makes it harder to raise and train Barnum and ups the ante of the number of tasks you’ll want him to learn.”

Me 1: “Ugh.”

Backcountry

I’ve just finished listening to a book called Merle’s Door: Lessons from a Freethinking Dog, which is a deeply moving book about an intensely close relationship between a rescued stray and the author, Ted Kerasote. Although Merle was not an assistance dog, he and Kerasote had a working partnership, as well as a deep and intimate love. Kerasote is a subsistence hunter in rural Wyoming, and Merle helped him locate elk and other game. All of Kerasote’s meat was what he procured from the wild, so they weren’t just sharing a game; they lived off this teamwork. The subject matter, alone, was bound to make me continuously reflect on my relationship with my dogs, especially Barnum and Gadget. Kerasote — who gave Merle freedoms impossible for most dog owners — challenges a lot of traditional, as well as current, thinking on dog care and training. Combined with my struggles and deep feelings of inadequacy as a puppy raiser, this focus kept me comparing myself and my canine relationships with that of Merle’s idyllic life with Kerasote.

Finally, of course, any book about the life of a dog must end with the death of that dog. Merle died of cancer, and the journey of illness and death that Kerasote traveled with Merle was very similar to what Gadget and I experienced. I finished the book yesterday. For the past two days, leading up to Merle’s death, I cried over and over. When I otherwise had no energy to move, I’d lay still except for the sobs jerking my body. I frequently envied Kerasote’s abilities and resources, physical and social, to care for Merle and provide a death and funeral for him that I was not able to provide for Gadget.

Backtrack

I thought these were all the reasons I’ve been thinking about Gadget more than usual while simultaneously feeling his presence in my memory murky and hard to grasp — as if Barnum and Merle somehow were obscuring who Gadget really was, what our relationship was, why I felt this pain under my breastbone that I could not name. Until today, I hadn’t known what to do with it but obsess darkly, eat chocolate, and cry.

Then, Carol, my PCA said, “Today is May 8, isn’t it?”

I rarely know the date; even the month can be a stretch. I checked my calendar and nodded, yes, the eighth.

Carol said, “It was exactly a year ago that I took Gadget to the hospital, wasn’t it? May eighth? ”

That stopped my heart. It was.

Back, Back, Back

I was very sick that day, like today, like yesterday. I couldn’t speak or get out of bed, and I was in a lot of pain. Gadget’s eye had looked pink the night before, and I had flip-flopped over monitoring it at home, taking him to the ER, or taking him to a regular vet. On the morning of Friday, May 8, 2009, I sent Gadget to VESH (Veterinary Emergency and Specialty Hospital) with Carol. Part of what decided me was that VESH had an ophthalmologist on staff. Even though she was not scheduled that day, I was assured she could be consulted if necessary. I had a history with SD eye crises: Jersey had glaucoma, a common problem among Bouviers, and even though I had taken her to several vets from the time I adopted her (long before it was an emergency), it had been misdiagnosed repeatedly. By the time it was diagnosed, the affected eye was permanently blind and terribly painful and had to be removed.

Jersey in profile

Jersey's blind side -- the missing eye hid by her fall (bangs)

Afraid Gadget might relive this trauma, and frustrated by my helplessness at not being able to accompany him, I spoke at length to the receptionist at VESH via HCO relay, stressing the importance of getting Gadget’s intraocular pressure checked on both eyes and compared to each other. I told her that glaucoma was a breed problem in Bouviers, that a reading within the “normal” range should be suspect if it is still much higher than the other eye, and I asked the examining vet to call me by relay during or immediately after the exam. She assured me that they were very familiar with assessing and diagnosing glaucoma. This eased my mind slightly.

If only it had been glaucoma.

Backhand

I waited. It felt like forever until the phone rang. It was Dr. C. She was the doctor who had treated Jersey when she was dying of multiple-organ failure from unknown causes in 2006. Jersey was thirteen then, retired, and whatever killed her, either an extremely fast-moving infection or cancer, at least she’d lived a long life and didn’t suffer a protracted illness. Nonetheless, I hated hearing Dr. C’s voice. I hated her, irrationally because I associated her with Jersey’s death.

Within a few minutes, I despised her.

“Sharon, it’s good you brought Gadget in,” she said. She sounded cheery, and I thought her next words would be, “It is glaucoma, but we caught it in time.” Or that it was another eye problem that could be treated since we’d moved fast.

Instead, she followed up with, “Gadget has lymphoma.”

I was shocked. I couldn’t believe it. There must be a mistake.

I started crying, but she couldn’t hear me because we were on relay. Dozens of questions leapt to mind, but I couldn’t interrupt her, because we were on relay.

She continued, “If your dog has to have cancer, lymphoma is the best cancer to have.” She explained that, depending on treatment, he could have another two to thirteen months to live.

This was the “good” news? He had the “best” cancer? I wanted to reach through the phone and hit her.

Backtrack

Over time, however, I learned the truth of what she said. Most canine cancers strike quickly and leave no options for treatment or cure. Lymphoma is one of few that usually responds well to chemotherapy. Gadget had five good months on chemotherapy. We reveled in swims and hikes at the pond, romps with other dogs, walks down new paths, even some new skills — just to add interest and a sense of accomplishment to his life.

Clear skies, clear water, Gadget returns to me.

When another cancer struck — mast cell tumors — Gadget’s decline was swift and heartbreaking. He died November 19, 2009.

I feel robbed; a year ago, I expected to have Gadget here with me today. If Gadget had represented the mean, one year post-diagnosis we’d have one more month with him in remission. That was the average for the MW protocol at VESH: thirteen months. But, for there to be an average, half the dogs must live longer, and half the dogs must live shorter. Of course, Gadget could not sit in the middle of the bell curve, because Gadget was never average.

My sweet boy, I miss you. I want you back.

As always, we welcome your comments.

-Sharon and the muse of Gadget (with Barnum, puppy-in-training)

P.S. Right before I was about to publish this post I got a note from Rochelle Lesser of The Land of PureGold Foundation . This is a wonderful organization. They educate about so many crucial issues — working dogs, humane training, canine cancer, nontoxic pet care, and more. They also gave Gadget a grant to cover some of his cancer treatment, for which I was very grateful.

Currently, they are running a contest to raise awareness about the importance of nontoxic, real food for dogs in preventing cancer and other health problems, and I was astonished to learn that so few have entered! I am only one of two so far! Rochelle even did a touching quickpress about Gadget and the last birthday cake I made for him.

The first ten people who enter the Bone Appetit Recipe Contest receive a bag of free, nutritious dog treats! (And the grand prize is phenomenal.) They gave me strength in championing Gadget’s fight to survive. Please lend your support to this very important (and fun!) contest.

Interlude: My One Hour a Week

Once a week, for an hour, I can breathe. I am by myself, and I can do whatever I want. Wednesdays from 6:00 to 7:00, Betsy takes Barnum to puppy kindergarten.

I have started several blogs in the last three weeks during this one-hour window, but I’m never able to finish them. I’ve been falling back on my usual mode for coping (and thus, writing) in recent blogs — humor. Mostly sarcasm, irony, self-deprecation.

Now, my attempt at my fastest blog ever! How is it actually going? My scattered thoughts. . . .

I do love Barnum. I love him very much. I can’t imagine a world without him. Especially when he’s sleepy and cuddly, and I look into his eyes, I love him in a way I’ve never loved anyone, because he’s a baby, my baby.

Or sometimes, especially lately, when we’re training, and he — out of the blue — “gets it” about what we’re doing and gets excited and does The Thing I Want Him to Do. That’s the high of training your own SD — that’s the drug of clicker training. Right now, it’s only just beginning, and only occasional. But there are moments: I hung bells on the door so he can learn to jingle them to tell me he needs to go out. He’s now quite good at hand targeting, so we’ve done two or three sessions of him targeting my hand as I moved it closer and closer to he bells, and twice he suddenly grabbed the bells! Jackpot! Even better than that was after we finished a session, and I took him out, he came back in and grabbed the bells all of his own accord! We were delighted with ourselves. I took him back out, even though I knew he didn’t have to pee.

He stresses the heck out of me. I often ask my PCAs when they arrive, “Would you like a puppy? He’s really cute. And free.”

I barely get any sleep. My sleep schedule is all messed up because when he has to go out, he has to go out. I try to sleep when he does, nap when he does, but there’s the rest of my life I usually need to squeeze into those little windows.

Barnum is teething. This means he is chewing on everything all the time even more than he used to, which I didn’t think was possible. On the other hand, he is finally getting more gentle with mouthing, which is trainer language for “biting everyone whose flesh, clothing, and hair he can reach.” Sometimes it really hurts. Sometimes it upsets people, and I feel bad for inviting them (or requiring them) to visit or work in an environment where little needle-like teeth might come at them before I can intervene.

He started out a bit fearful, then became very confident, and now seems to be going through a timid phase again. I am trying not to stress about it. However, the uber-socialization we did with people has paid off: even when he’s afraid of everything else new around him, he wants to follow any people he sees, because he is convinced they will love him up and shower him with treats.

Most of the time I’m too busy and exhausted to consciously miss Gadget, but during the rare moments I let myself open — when all the Managing, Coping, Handling, etc., is not needed, and when I am not working to prove how Together and Witty I am — I just cry. I cry and cry and say, “I miss Gadget. I want him back. I want him back.”

Gadget’s grave is kind of a mess. We put stones on it to mark it, but they got moved, and the dirt got rearranged by a snow plow in winter. I know some of the people who loved Gadget are distressed that I haven’t done anything to fix it. To repack the dirt, move the stones, plant flowers. My very kind neighbor, who is a hospice worker, actually brought daffodil bulbs when Gadget died, and we planned to plant them on his grave, but I can’t deal with it. I can’t look at it when I go out. It’s still just easier to think that he’s “gone,” than that his body is decomposing in my yard.

I finally responded to an email from a reader of this blog who lost her service-dog-in-training. Just reading about her feelings and telling her how normal it all is made me cry. It’s impossible not to identify and put myself in her place and feel her pain.

I’m a coward. Someone I met online whose dog also had cancer lost the battle recently. Over many months, I felt like I really got to know her and her dog, and I haven’t been emailing her because I feel so awful about it, I don’t know what to say. He just seemed like a truly wonderful dog. I hated it when people went on and on to me about how horrible Gadget’s death was and catastrophized it, as if I truly could not live without him, and I don’t want to do that to anyone else. In her case, this was not her service dog, so she won’t get that kind of treatment from others. But still. How can I be writing a blog about service dog grief and not know what to say?

I also haven’t gone back to my angels list because not only am I too exhausted and busy to deal with email, I’m afraid my stress and grouchiness and all-consuming attention on Barnum is not appropriate to the group, but neither would be my gushing and happiness over him. And it’s so painful, as more people join, to know more people have lost their heart dogs, that it throws me back into my feelings about Gadget, and I can’t afford to use that energy.

Twice a week, Betsy takes Barnum for the night so I can catch up on sleep. I generally sleep twelve hours on those nights. I think it’s hard for people to understand just how much Barnum consumes my life, not just because he is a puppy, and all puppies are a lot of work. It’s because . . .

– He is an extra high-energy, drivey puppy. He was the most active in his litter — of a working breed.

– He is only moderately food motivated. He is much more interested in being with me without food than being in his crate with a marrow bone or a Kong. Honestly, I didn’t know such dogs existed before!

– I am laying the groundwork for him to be my service dog. That means major socialization to everything and everyone in the world, tons of training, and carefully avoiding not discouraging him from doing things that might later be useful, but that are usually trained out of puppies. (Grabbing clothes is an example. One day I will want him to pull on my sleeves, so I don’t want to scold him for that now. Likewise with sniffing things, as he will be doing scent work.)

– I live with multiple illnesses and disabilities, which means that things like getting my teeth brushed, going to the bathroom, eating and getting meals, all take planning and assistance from other people. It also means that a good portion of my days are spent with “maintenance” that healthy people don’t have to deal with. This includes doing infusions of IV medication twice a day, taking huge quantities of oral supplements and drugs many times a day, getting intramuscular shots, etc., etc.

When you combine these things, it’s complicated. For example, puppies love to play with strings, cords, ropes, dangling things. Guess what that describes? The tubing on my oxygen tank. The cord on my infusion pump. The line from my PICC line in my arm to my pump. Who wants to explain to the ER doc that a puppy chewed into the tubing that leads into the line into my heart? Not me!

This means that when I do my infusions either someone else needs to be with him, OR he needs to be asleep, OR he needs to be in his crate. It’s not always so easy to synch up his sleeping schedules with my medication schedules and my PCAs’ working schedules!

Okay, I had to interrupt this a couple paragraphs above because Betsy got home, and I had to get Barnum into the crate in the living room with enough Really Really Tasty chew toys to keep him occupied until Betsy gets back from her errand so I can don mask, gloves, air filter, and oxygen, and change clothes, so we can bathe Barnum, because he smells from chemical fumes he picked up at class. Then I’ll have to wipe myself down. All of which will be exhausting and cause me to have more pain and exhaustion tomorrow. See how my mood has already gotten worse?

On the other hand, he is absolutely adorable, AND he rang the bell after just two practice clicks with me. I just need a break. I just need time to mourn, which maybe I will get the next time Barnum is asleep, if I’m not also trying to sleep at that time.

Thanks so much for your comments. Keep them coming.

-Sharon and the muse of Gadget

P.S. I wanted to post some adorable photos of Barnum, but I don’t have the time to upload and caption them, so that will have to wait.

Pushing Buttons: My Love/Hate Relationship with My Doorbell

For most people, the relationship between their doorbell and their dog is this: Someone rings the doorbell, their dog barks and runs to the door.

I didn’t have a doorbell before Gadget died. People either knocked or just came on in. I don’t know if he would have barked at it.

We got the doorbell because Gadget died.

Gadget’s death has meant a severe decline in my ability to communicate with others in my household. I miss this help every day, several times a day. Very soon after he died, I was beside myself with grief and frustration over my increased isolation and decreased ability to communicate.

This is how Gadget helped me communicate with people in my home: When I needed one of my personal care assistants (PCAs), Gadget opened my bedroom door and flagged them down. If he didn’t show up with them, at least now my door was open and they’d be more likely to hear me ring my bell again, or I could hear if they were washing dishes or had the fan on and that was drowning out my attempts to ring for them.

On occasion, if I was in the bathroom alone with the door shut for privacy, and I didn’t have my bell with me, I’d call Gadget. He’d open the door. I’d send him back out for a PCA, then call him back again. My PCA would realize we were trying to get her attention.

What’s been harder is not being able to communicate with my human partner, who is in a sound-buffered room on the second floor, when she’s home. When I wanted to tell her something, I’d write a note, stick it in Gadget’s collar and tell him, “Find Betsy!” It didn’t matter if I could voice or not because Gadget knew both signed and spoken commands. He would gallop upstairs, open Betsy’s door, and run to her (sometimes run into her).

He demonstrates this skill in the video below.

Click here for a captioned version of the video.

Click here for a text description and transcript of the video.

If he came back to me without the note, I knew he’d delivered the message. If he came back with the note, I knew Betsy was asleep or outside or otherwise beyond reach. If I needed him to wake her up, I’d tell him to go back, and he’d bark and paw at the door or nudge her or generally make himself a nuisance till she responded.

Gadget lays his paw across Betsy's arm

Gadget makes sure he has Betsy’s undivided attention

Sometimes Betsy would write a reply for him to deliver to me. He loved that, particularly.

When I lost Gadget, I suddenly lost part of my relationship with Betsy, too. Betsy came up with the great idea of using a doorbell to bridge this gap. When she showed it to me, I cried with gratitude.

I love the doorbell.

Here’s how it works: It’s a wireless doorbell with two separate parts. The button is taped to my over-bed table, and the chime can be plugged in anywhere there’s an electric outlet. Usually, it lives in the kitchen. I push the button, and my PCAs hear the chimes ring throughout most of the house. My PCAs were thrilled with how much louder and easier to hear it was than what we’d been trying before (the puny “beep” of the “horn” on my powerchair or a bell I rang by hand).

I was so relieved that it was working. Yet, I also worried that people would think I didn’t need another service dog because now I had this doorbell that worked so well. It felt almost disloyal to Gadget. I told my friends I felt guilty that I was replacing Gadget with technology.

My friends said, “You’re not replacing him. You loved Gadget. He was so special. That can never be replaced with a doorbell,” but it felt like they were talking about the loss of love, the heart-dog loss. I wasn’t just talking about that. I was talking about that and the Gadget who was my arms and legs and voice. I didn’t know how to explain the wholeness of Gadget as my partner, and the essentialness of that partnership beyond finding a solution for any one task — my longing not to make do in life any more than was strictly necessary.

Still, here was this wonderful doorbell, and initially, I was so happy with it. I let go of my fears of how others would interpret my “replacement” of Gadget.

The doorbell has its limitations.

Sometimes I press it, and I can’t hear it ring. Sometimes, nobody comes right away. Then I don’t know — are they in the bathroom? Outside? Did I not press the button hard enough? Should I press it again, or will that cause annoyance?

Also, if Betsy is upstairs asleep, the chime in the kitchen won’t wake her. The doorbell is also a totally one-sided and “one note” form of communication. All it can convey is, “I’m trying to get someone’s attention.” Generally, that’s the most important point, but I can’t indicate whom I’m trying to reach or tell them, “Before you come to my room, can you please grab such-and-such?” Or, “The phone’s for you. You didn’t hear it ring because I was on the other line, and I picked up call waiting.” Or, “Help! I need you now!” Or, “You don’t have to come now, just when you get around to it.”

I also can’t reach the button to ring for assistance if I’m not in bed. If I’m on the commode — just a yard away — or in the bathroom or even in my powerchair right next to the bed, it’s beyond me. If I’m stuck on the toilet, and my voice isn’t working, I can’t call the doorbell to me, no matter how appealing I make myself. I cannot entice it with cheese or liver or belly rubs.

The doorbell is better than the nothing I had after Gadget’s death, but it is still just technology, and technology is always limited. It can’t adapt. Gadget and I trained so that he would look for Betsy whether she was upstairs or downstairs. He could look for her or listen for her. He could use his nose and sniff her out if he didn’t see or hear her. He could get creative: One time, when she didn’t unlock her door for him after I’d sent him up with a message, he got frustrated and barked. I didn’t teach him to bark when she didn’t let him in; he escalated his behavior because what he had been trying wasn’t successful. His new strategy worked! Betsy came out and said, “Don’t tell him to bark for me because I’m making calls for work.” I said that I hadn’t, that he’d done it on his own, but I did reward him for it. I didn’t know when I might need her urgently and he’d need to use persistence.

My PCAs learned how to interpret Gadget’s behavior and generally guessed correctly why or whether I was sending him to them. We were all part of a team; I was captain, and Gadget played center.

I hate the doorbell.

A chime, at best, is neutral. It’s an alert.

At worst, it’s irritating. It can feel like nagging. I’m starting to sense a slight undertone of annoyance in the household when I ring frequently.

It’s nobody’s fault. People enjoy being summoned by a dog. They feel sought out and special, and they get to be part of the reward. “Does Sharon want me? Good boy!”

A doorbell doesn’t wag its tail. It doesn’t get excited at the prospect of a treat and go galumphing past the person it has summoned to get to me first. It doesn’t feel satisfied at a job well done. It’s just a piece of hard plastic that I’m grateful for and resent.

It would have been impossible to resent Gadget. Even at my most exhausted, frustrated, sleep-deprived, anxiety-ridden, overworked, and done-in over his being sick, I loved him. Even when he was young and difficult and drove me to tears, and I’d say things like, “That’s it! I’m making dog burgers tonight!” I loved him. I loved him far beyond my ability to express it in a blog.

The intercom.

Betsy and I are both dissatisfied with the limitations of our intra-house communication. Thus, Betsy ordered an intercom for my birthday. She told me ahead of time that it was coming; I was losing it over our communication breakdown, and she knew it would be a while before it arrived because it was on backorder. I was so grateful that she recognized my frustration and aloneness that I burst into tears and hugged her. It finally came today. I opened the shipping box and just made goo-goo eyes at it. I can’t wait until she installs it. It’s taking all my willpower not to nag her about it incessantly.

I’ve learned my lesson, though. I’m preparing myself for this new technology’s limitations: The intercom might be “smelly” (offgassing new plastic fumes), so that I won’t be able to use it until it has aired out for several months. Even then, at times when I can’t produce intelligible speech, the intercom won’t be as helpful as we’d wish. Finally, like the doorbell, if I am not next to it, I won’t be able to activate it.

In short, I will be grateful for it when it works and frustrated by its limitations.

Despite all this, it will be a big step up from the doorbell. But it will always be miles and miles away from replacing Gadget, my partner.

-Sharon and the muse of Gadget

As always, we welcome your comments.

P.S. Another “About” page is up, about how multiple chemical sensitivity (MCS) affects me and my service dog partnerships. Click here to read the MCS page.


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