Whether you know me in real life or only through this blog, there are two things that you surely know about me by now: 1) I have worked as a dementia educator for many years, and 2) I have a funny old terrier named Norma. We adopted Norma from a shelter nearly 16 years ago, and she’s been my companion through much of my career in social work and dementia care. Now aged to roughly the equivalent of an 80- or 90-something human, she’s healthy, but deep into some puzzling and at times frustrating cognitive changes.
Research shows that many old dogs experience brain changes that are similar to Alzheimer’s disease and other dementias in human brains, but of course I don’t know precisely what ails her. What I do know is that she’s experiencing many of the behavior changes associated with canine cognitive dysfunction: frightened by loud sounds that didn’t affect her before, frequent confusion and disorientation, repetitive behaviors, increased wandering (pacing), accidents in the house (after a lifetime of being nearly perfectly housebroken), and changes to her longstanding activity and sleep patterns. It’s not all bad, though. She enjoys our walks, remains playful, eats with gusto, and has become uncharacteristically friendly. Sometimes even a little sweet.
Life with Norma was never easy, and her old age has been no exception. And although I’d never compare what she’s experiencing or the challenge of caring for her with what people living with dementia and those who care for them face, I’m keenly aware of the ways she is testing me as a dementia educator.
I’ve devoted my working life to helping people facing a new diagnosis, and those struggling to understand and cope with the cognitive, behavioral, and physical changes in a person they care for. I share disease information and practical advice, supporting people as they learn, grow, and gain understanding, empathy, and patience with themselves and each other. And then I come home and completely melt down in the face of Norma’s annoying new behaviors. Many of the key lessons I routinely teach to people who care for someone living with dementia, it turns out, are the lessons I am in desperate need of re-learning in my own life.
Behavior is a form of communication. When struggling with the usual means of meeting one’s own needs, or communicating them to someone else, those with dementia frequently say or do things that seem out of character. But if we watch, listen, and try to understand, we can often decipher the message: discomfort, hunger, the need to eliminate, loneliness, restlessness, or overstimulation are frequent causes. Norma used to sit quietly near us during dinner, knowing not to beg but watching closely for the cues that we were finishing, meaning her own evening meal was near. Today she can’t sit comfortably when she’s hungry, is unable to follow our commands to sit or stay, and now just paces an endless loop around us while we eat <click-click-click>. At the end of a long and tiring day, I get unreasonably resentful that she’s disturbing the peace and pleasure of dinner. I’ve finally let go of yelling at her to stop (it never worked, not even once), but I hope she doesn’t understand the things I still mutter bitterly into my plate.
Meet them where they are. What looks like resistance is not a matter of stubbornness or refusal. It’s a consequence of confusion. When the evening pacing began we tried feeding Norma earlier, but learned quickly that deviating from our longstanding dinnertime routine threw her off and caused much worse problems. After trying for far too long, I finally gave up trying to get her to stop, sit, or lay down. I bought some cheap exercise mats, lay them out all over the floor, and try really hard now to just let her do her thing. (With mixed results. She actually walks on them maybe 25% of the time, and I manage not to lose my temper at her about 75% of the time.) She’s not a puppy learning the rules. And she’s not willfully breaking the rules or ignoring our commands. She’s forgetting them. She’s hungry and doesn’t know what’s going to come next, and deserves more patience from me than she usually gets.
Respect their personal space. The loss of cognitive function and visual-spatial changes caused by dementia frequently result in confusion, agitation, and a tendency to easily startle. Our companions need safe spaces where they can retreat when they’re overstimulated, and our understanding when being too close feels frightening. Unquestionably, getting up in Norma’s business, and violating her private, quiet spaces has been the hardest of my habits to break. At night she’ll frequently retreat to the bedroom, presumably for some quiet and relaxation after her frenetic evenings, and we find it impossible to leave her alone in there. I adore her sweet frosted face, and want nothing more than to snuggle up to her while she’s sleeping in an especially cute fashion. She’s recently taken to crawling under blankets, and I ask you: how am I supposed to resist that?
Remember that they’re doing the best they can. This simple but impactful bit of wisdom comes from Teepa Snow, an occupational therapist and widely-respected dementia educator who I admire deeply, and learn from as often as I can. I’ve been certified in her Positive ApproachTM to Care techniques for almost three years now, and am grateful that she can’t see me every morning, frustrated when Norma can’t figure out how the front door works (“We’ve lived here your entire life! This door has never changed!”), or when she wanders into the living room curtains and gets herself stuck.
Focus on abilities. It’s easy to get wrapped up in all of the losses that come with dementia, and to fail to see what is still possible. After a nice long walk through the neighborhood, Norma bounds up our building’s steps with remarkable energy, and a healthy set of very old joints and muscles. And then I fixate on the fact that the front door confuses her. Sure, her pacing while we eat dinner drives me up the wall, but I’m grateful that she still loves to eat. And she can no longer follow most of her commands or do the funny tricks we taught her when she was younger (our favorite: honking her rubber chicken on command), but she can still rock a pretty good “high five,” and will occasionally pull a ball or toy out of her basket, and pounce on it playfully.
Take a deep breath. Our first impulses and reactions are rarely helpful when it comes to caring for someone with dementia. In the face of a new challenge (and there will always be a new challenge), give yourself a time out, and give the smarter but slower regions of your brain a moment to catch up and override your instincts. Yelling, or trying to correct or exact punishment wasn’t going help when Norma peed on the kitchen floor right in front of us while we were doing dishes, in a recent moment of obvious confusion. I took a deep breath and caught the “bad dog!” before it escaped my lips, picked her up (to keep her from walking through her own puddle and tracking it all over the floor), and just got her outside as quickly as I could.
When we know better, we can choose to do better.”Teepa Snow
What I am teaching, I am also learning. I’m making mistakes, but trying to improve. Next time I need to sweep Norma up after an accident in the house, I can do so more gently. When she gets stuck in the curtains, I can curb my annoyance and just patiently lift them up, to show her the way out. And when the sound of her nails on the floors is making me cranky, I can imagine the sad quiet someday when it’s gone.