About a month after Mom died in August 2016, her little kitty cat Pia Roma, who had lived with me since late February 2013, began to behave strangely. Coquetishly cute Pia, with her big yellow eyes, had always been a little odd, but this was different. She wasn’t herself at all. There were continence issues, a lot of meowing and more vomiting than usual.
“She has chronic kidney disease,” the vet told me after some blood tests and an overnight stay at the clinic. “And probably a bit of feline dementia too.”
The vet gave me medication for the CKD, and put Pia on a special diet. Pia continued to enjoy an active life for an older cat, despite her dementia. When I took her back for a check-up in 2017, Pia’s kidneys had actually improved. In the four years we’d been together, we’d grown really close, and I was delighted she continued to be so well. I was equally devastated, however, with the results of this year’s check-up, which took place last week. I wrote about it on my personal FB page:
“I took Pia to the vet yesterday afternoon. Unfortunately, the news isn’t good. The vet was impressed with the great shape she’s in for a cat her age, which I think is 16. The vet said her heart is in fabulous condition; she was surprised and impressed when I told her that Pia still runs around, plays, and jumps up and down from my desk to the floor and onto my very high bed.
The blood tests, however, told a different story. The results showed that, while her thyroid is fine, her kidney disease has progressed from stage I, which is was two years ago, to stage III, which it is now. The vet reckons she only has about six months more in this world.
The only thing that can be done for her now is palliative care to keep her comfortable. Of course I feel desperately sad, and I can’t stop crying, but what to do? This is life. And death.”
As with any terminal illness (e.g. Alzheimer’s disease, kidney disease, etc.), the patient does not suddenly die the minute she or he is diagnosed. People (and animals!) can continued to live relatively well until they die. I believe our job as care partners is to support those we love in living as they go through the process of dying. If I’m not mistaken, that’s what palliative care should be about. Hard as hell in the midst of our own grief, no doubt about that. But I know it’s possible.
So I have a palliative care plan for Pia. It’s essentially the same as what I tried to do for Mom, even though my hands were tied in many ways. Here’s the plan:
1) watch and listen carefully to try to determine what her needs are and do what I can to meet them
2) focus on what she can do each day
3) make her life as joyful as possible
4) maximize comfort
5) minimize pain
6) let her be the driver
7) respect the process and hold space for both of us
I know all these things worked a treat when I was with Mom, and I believe they’ll help Pia as well. Maybe they’ll be a blessing for those you love too.
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December 26, 2017: In November 2012, I put Mom and her best friend Pia Roma in separate prisons.
Pia went to the friend of a friend’s where she hid under the sofa in a cigarette-smoke-filled apartment for a month. My friend rescued Pia from her friend’s, but that didn’t help. Pia hid under my friend’s bed for another month until I rescued her again.
Mom & Pia April 10, 2012, six months before being incarcerated
I didn’t want a cat. Just like I hadn’t wanted to return to Canada to care for Mom in 2011. But I couldn’t bear for helpless Pia who, in Mom’s words, was her “best friend” to live under a sofa or a bed for the rest of her life. So when I decided I needed to stay close to Mom instead of restarting my old life in a new way, I rented a house near the nursing home I would come to call “ElderJail,” and I brought Pia Roma to live with me.
Since then, Pia has accompanied me through ups and downs, never saying anything but “meow” (like Zlateh the Goat said nothing but “maaaaaaa”), or purring loudly, and sharing my morning tea as she often did with Mom, which I captured on video on December 28, 2009, and aptly title “the paws that refreshes.”
But none of us should die before we’re dead, and so, in the meantime, Pia and I paws frequently to count our blessings. We hope you do too. We also invite you to remember that, even in prison, there is space between the bars.
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Living well, eating well, and getting plenty of exercise are the best ways of staying healthy overall, aging well and delaying or even staving off Alzheimer disease and other dementias.
Walking is among the best exercises you can do (I walk for about an hour and a half each day), but more fun than walking in my opinion is dancing – especially when you do it in a group. It’s energizing and fun. Plus, learning something new like these seniors are with the hip-hop moves in this video helps create new pathways in the brain, which is thought to be a great way to develop “brain muscle.” AND, If that weren’t enough exercise like this releases endorphins that help people maintain a positive attitude.
So it’s all good. No downside. Yay for music. Yay for dancing.
By the way, can you guess which one of these hip-hop dancers has dementia?
Ne serait-il pas temps de revoir notre façon de faire pour les soins d’hygiène des patients atteints de la maladie d’Alzheimer ? Face à des comportements de résistance aux soins d’hygiène, encore trop souvent, on administre du Risperdal ou du Seroquel ou encore du Serax en PRN avant de donner le bain.
Or, cette pratique est inutile 95 pour cent du temps et en particulier si l’approche du préposé aux bénéficiaires (PAB) n’est pas optimale. Il n’y a pas un médicament qui va corriger l’approche d’un soignant…
Comment modifier cette pratique? Former les médecins pour qu’ils prescrivent moins de ces médicaments dans cette situation ? Non, il faut plutôt prioritairement outiller les soignants à la méthode du lavage à la serviette (aussi joliment nommée: méthode spa).
Depuis maintenant 10 ans, les milieux cliniques américains investissent dans cette approche visant à donner des soins d’hygiène de qualité. Le résultat de ces efforts d’investissement dans les compétences des PAB : diminution de l’agitation verbale de 18 pour cent, de l’agitation physique de 19 pour cent et réduction de 30 pour cent de l’utilisation des antipsychotiques !
La cerise sur le sundae est que de donner les soins d’hygiène selon cette approche prend moins de temps que la méthode habituelle; voyez la preuve ici.
M. Philippe Voyer, Ph.D, est professeur titulaire, directeur du programme de 1er cycle et responsable de la formation continue à la Faculté des sciences infirmières de l’Université Laval. Il voit à l’élaboration et la prestation des cours touchant les soins infirmiers aux aînés et à la pratique infirmière avancée dans les soins gériatriques.
Could their chairs be any closer together? Gaby and Mom, August 27, 2013.
Flashback August 27, 2013: I love to treat Mom and her BFF Gaby to lunches and dinners at my place.
Mom, who is in her mid eighties and living with the later stages of Alzheimer’s disease, can’t really carry on a “sensible” conversation anymore. Her friend Gaby is 97; most of her marbles are still very much intact. Gaby’s only major complaint (about which she hardly complains at all) is the corn on her foot, which sometimes makes it painful for her to walk. She’s also becoming a tad hard of hearing. Other than that, she’s golden.
Mom and Gaby found each other at The Home, where Gaby has lived for about six years, and Mom coming on a year now. They met after Mom moved into the room next to Gaby’s, and they became neighbours. Their friendship is flourishing, despite Mom’s ongoing slide into dementia. They share a table, along with two other residents, in the dining room at The Home; they have breakfast, lunch and dinner together. Mealtime conversations are infrequent. People waiting to die don’t have much to say it would seem.
I visit Mom and Gaby at The Home almost every day, and I bring them to my place once a week for lunch or dinner, one of the few small pleasures they’re still able to enjoy. The atmosphere is loving and lively at my place. The three of us find more to say, to do, to be and to sing.
On this particular early summer night, Mom and Gaby help set the table. They hold hands and teeter slightly as they arrange the knives and forks while I prepare a simple feast: tuna salad with celery and mayonnaise, a few leaves of local lettuce, crisp carrot sticks, golden-toasted sesame seed bagels, and mixed olives.
They drink orange juice in crystal highball glasses I took from Mom’s real home when we decamped, and I sip sauvignon blanc from a funky goblet my cousin gave me. After dinner, I make Mom and Gaby comfortable on the back deck, then ferret out something “delicious and nutritious” for dessert: fresh peaches with yogurt and honey. On the way back to serve them, I stop short of the screen door that opens onto the deck, and pause to eavesdrop on their sunset conversation.
“Isn’t that a beautiful sky?” Gaby says to Mom.
“Yeah, and I told them it was. Dad thinks so too,” Mom looks around. “Where’s Dad?”
“Yes, you did,” Gaby says. She waits for this to sink in before she goes on. “He went to get our dessert.”
A moment of silence. Then another. Then several more. Gaby reaches over and gently feels Mom’s left arm, which is bruised because of the Coumadin Mom is being given to stop blood clots from forming in her swollen legs. She used to stride, purposeful; now she shuffles, uncertain, because of the drugs she shouldn’t be taking.
“Are you cold?” Gaby asks.
“No, I don’t think so,” Mom says. She pauses; searches. “Do I feel cold?” A fresh breeze blows through the screen door. Goosebumps rise on my arms; something in my chest squeezes like a sponge.
“You feel a bit cold,” Gaby says to Mom as she withdraws her hand. Together, they hold space for each other: Gaby in the slightly laboured rasp of her breath, Mom in the tissue she folds and unfolds, folds and unfolds, folds and unfolds in the cradle of her lap. The sun sinks a little more.
“Are you cold Gaby?” Mom asks. It’s not unusual for her to parrot what’s been said to her. It’s a way for her to conquer the aphasia that steals more of her words each day.
“No,” Gaby says as she turns to look at her friend. “I’m not cold. But you feel a bit cold.”
“I do?” Mom says.
“Yes,” Gaby affirms. Whatever Mom says, Gaby agrees. They never argue.
More silence. One looks this way, the other one that. They stare at nothing in particular: nothing in particular being the main thing they contemplate day in and day out. They have many days in. Days out are fewer and farther between. Gaby swings her right foot, and inadvertently kicks Mom’s left.
“Did I hurt you?” Gaby worries.
“No,” Mom replies.
“I wouldn’t want to hurt my friend Patti. You’re my best friend.” Gaby touches Mom’s arm again.
The sun keeps setting, as it is wont to do on kindred spirits everywhere, each day earlier and earlier until late December, then later and later until late June, when the cycle recycles itself. I guess it’s the other way around in the southern hemisphere, and different again at the poles.
Gaby and Mom don’t care about the hemispheres or the poles. They don’t worry about the length of the days: short, long, makes no difference. They’re all the same. Except days like this, when they get to go out. These are special days, even if they don’t remember them. I vow to myself that I will, until, like Mom, I don’t anymore.
“Your hair looks nice, Patti,” Gaby says. I wonder how many times Gaby has paid Mom this compliment today. Three? Five? Ten? More? Mom says nothing. She touches her head with her right hand. Pushes a roller-induced wave in and up. Still nothing. Perhaps she’s already forgotten Gaby’s words. Or maybe she needs a mirror to confirm their veracity. Not knowing the truth of one’s own reality is part of the disease.
“And that top looks beautiful on you. You have the nicest clothes,” Gaby continues, heaping one heartfelt compliment on another because she adores her friend. Mom looks down at herself. She moves her hands to just below her waist and pinches the bottom of the light-beige-and-white-striped shirt she’s wearing. She stretches it down and out to see it better. The stripes in the top match her caramel capris.
“Do I?” Her voice is flat, her face expressionless–more side effects of the medications that make her shuffle instead of stride.My hands tighten on the bowls of peaches and yogurt when I think of the drugs, the ones that kill my mother’s vibrant personality for convenience and cost saving.
“Oh YES! You are so stylish.” Gaby bursts with enthusiasm.
“Am I?” Mom doubts.
“Oh yes! Very! I wish I was stylish like you,” Gaby says, her grin as a wide as the horizon. “And you have such beautiful rosy cheeks. I love your rosy cheeks.” She leans in closer; her hand once again rests like a crooked feather on Mom’s arm. She plants a slow kiss on the pinkish flush of Mom’s left cheek. She’s oh-so-careful not to bruise her. Mom says nothing.
“I’m glad I’m here with my friend Patti, enjoying the sunset,” Gaby continues.
Mom seems not to have heard. “Is it time to go home yet?” she asks.
“Almost,” Gaby replies. She slides her hand down Mom’s purple-splotched forearm, and curls her craggy fingers around Mom’s soft, plump ones. “We’ll go together,” she says, and kisses Mom again.
I swipe the back of one hand under both eyes, nudge open the screen door with my foot, and step into the oncoming twilight.
In honour of Mom and Gaby who are surely raising Cain, wherever they are now.
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My Alzheimer's Story 