Advocacy, Real life, Toward better care

ow ow ow & mom’s dying of thirst: august 3, 2016

“Hello Punkie,” Mom greeted me using my nickname before I had chance to say hello. This was out of the ordinary. Usually, I didn’t say anything when I first arrived, to give her a chance to process, and then I would say “Hi Mom,” or “Hi Patti,” to initiate a conversation. This time she beat me to it. It didn’t matter to me whether Mom recognized me or not, but still, hearing her say my name was joyful.

She was tilted back in a recliner in the sunporch, the sling on her right arm hidden under a tight-fitting golf shirt that looked like it would feel like a straightjacket. She had on winter trousers, despite the heat. Ironically, the previous winter, they’d put her in cotton capris until I took all her summer clothes home with me so that dressing her inappropriately wasn’t an option anymore.

The very thought of being constrained like Mom was made my stomach turn. But Mom’s courage was unmatched and she seemed in good spirits, though her voice was soft and quiet and her aphasia clearly evident. She’s good enough to go for tea – yay!

Before she fell and broke her arm, I could easily get Mom up and out of a recliner and into a wheelchair on my own so we could roll to the elevator, and then ride down to the first floor. But the injury to her arm prevented that.

“I’ll see if I can get somebody to help,” I said, and headed down the hall to the nurse’s station which was a few steps away.

Jimmy,* the only male caregiver on staff, happened to be on shift. He volunteered to give us a hand. Meanwhile, the TV spewed rubbish in the background, as it did day in and day out, increasing Mom’s stress level (she hated noise), as well as my own. At one point a nurse joined in to assist with part of the “transfer,” and then left. This is how it went:

Besides her broken arm, the trauma to her head and the UTI, there was now another ugly wound on her leg. Obviously, it was sore.

The tonal rendition of “You are my sunshine” was produced by the pressure pad Mom was made to sit or lie on when she was in her wheelchair, the recliner, or in bed. The alarm pad hadn’t averted the fall the previous week, and was now even more useless. Mom was completely immobilized – insisting on using the pad was a case of shutting the barn darn after the horse had bolted. The nursed relented, and allowed it to be left on the recliner instead of being moved to the wheelchair, thus avoiding having to lift Mom again to put it under her bottom. Thank god for a modicum of common sense.

Witnessing the distress caused by the transfer, and in this case being the instigator of it for the sake of getting Mom outside was upsetting. More so was the fact that she would have endured a similar procedure several times daily when she was moved from bed to wheel chair, and wheel chair to recliner, and then back again, each time causing her pain. To think she was also inadequately hydrated in the heat (which she made crystal clear in the sound clip above when I helped her to drink some juice), made me despair. I’d like to say I was surprised she was parched, but it had happened so often that frequently offering her something to drink when I was with her had become part of my routine.

When we finally made it downstairs, and outside onto the deck, we had a lovely time singing, and chatting with Mom’s one-on-one caregiver Sally,* who was an angel in every sense of the word. Sally remarked on how swollen Mom’s ankles were. I agreed. We tried putting her feet on the ground. “Ow!” Mom said. “It hurts.” On the plus side, unlike a couple of days earlier, when Mom had been unable to get cookies to her mouth on her own, she was eating them by herself relatively effortlessly that afternoon. What an amazing woman.

“I think you’re descended from some kind of warrior, Mom,” I observed. “Maybe Joan of Arc.”

When it was time, I said goodbye, and told Mom I would be back the following day.

“Okay,” she said, with a quiver in her voice.

“And I’ll be staying with you for supper,” Sally said.

“Oh, that’s a good thing,” Mom said, her tone once again relaxed.

Mom loved Sally, who was her companion for three or four hours several times a week. I felt completely at ease leaving Mom in Sally’s capable hands, and had fought hard to have her hours extended, as Mom was obviously so much better off when Sally was with her. My efforts in that regard, like my efforts to get her off the antipsychotics, had failed.

While Sally went to sort out some scheduling details, Mom and I sang a few short songs including “Has anybody seen my gal?” and my all time favourite “Somewhere over the rainbow” before I left for home:

*Not their real names.

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Advocacy, Real life, Toward better care

can you eat a cookie with your left hand? august 1, 2016

For some reason I don’t remember now, I was unable to visit Mom on the last day of July 2016, which made me even more anxious to see her on August 1, which was a Monday.

“Hello my darling mother,” I said to her as soon as I found her reclining (surprise, surprise) on the second-floor sunporch. She was awake, and alert. “I’m so happy to see you,” I said, and I gave her a big kiss.

She said she was feeling good, even very good, and yes, she would like to go for a cup of tea. I wheeled her to the elevator, and we made our way to the ground floor, Mom sharing her aphasic thoughts along the way.

Afternoon tea had been our almost-daily ritual for the previous three years, particularly over the previous 15 months during which the times I could visit had been restricted to a couple of hours in the afternoon. So Mom knew the routine, and routine can be a good thing if it’s not rigidly adhered to for the sake of itself or convenience.

When we got downstairs, I asked Mom if she might like to sing a song, “I have two songs,” she said. She actually knew hundreds. Literally. “I bet I know one of them,” I said. I began to sing “When you wore a tulip.” She immediately joined in.

Then I asked if she would like some tea, and we both laughed at the evolution of her reply:

Orchestrating the drinking of our tea took some coordination, given that Mom was right handed and could no longer use her right hand because of her broken arm. There was no question of her holding a cup or mug, and being able to drink from it. I had to lift the cup to her mouth so she could sip the liquid from it. One of the highlights of our “tea parties” was the cookies. Mom had a sweet tooth. Always had. Hard candies, soft candies, cakes, pies, ice cream – she loved them all. I wondered if she might be able to eat a cookie with her left hand? She answered in no uncertain terms!

Mom’s confidence was not a new character trait. She’d always believed she could do pretty much anything, and she pretty much could and did. But sometimes the execution proved more challenging than she had anticipated, as it was that day with the left-handed “degustation” of the cookie. But she never gave up. Ever.

We spent the rest of the afternoon chatting with Mom’s friend Shirley about the weather and other important things such as how long it would take for Mom’s broken arm to heal (Shirley had been a nurse in her youth). We drank more tea, ate ginger snap cookies that Shirley had brought (as usual and yum!), and sang more songs like this one:

It was a good day. A very good day. All things considered.

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

detective work: july 30, 2016

no news is good news: july 29, 2016

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Advocacy, Real life, Toward better care

detective work: july 30, 2016

When I still hadn’t heard anything about Mom’s condition by mid-afternoon on Saturday, almost forty-eight hours since she was meant to be going to the hospital, I decided to go down to the residence to see if she was back, and if she wasn’t, to see if I could piece together what had happened.

It was a relief to find Mom alive, and lying in a recliner in the second-floor kitchen/dining area. She was covered with a blanket. Her eyes were closed, and she didn’t respond when I greeted her. When I lifted the blanket, I saw she had an “apron” around her neck. Maybe she had something to eat at lunch. Under the apron, she was wearing a blue hospital gown. Her arm was in some kind of sling; what I could see of it looked awful.

I sat by her side for about half an hour during which I learned through the grapevine (not from the staff) that an ambulance had been at the residence at about 9:00 p.m. on Thursday, a little over three hours after I left, and that she’d gotten back to the residence at about 4:30 p.m. the next day, Friday. So she’d been back at the residence for twenty-four hours and nobody had bothered to call to tell me whether she was dead or alive. She had a broken arm, and, just as I had suspected, a urinary tract infection.

Having a broken right arm would be problematic, but at least the UTI might be addressed. I’d seen her make seemingly miraculous recoveries from several of them over the nearly four years she’d be in the residence. Maybe she’ll get better. Maybe there’s still hope.

It would soon be time for dinner, and there wasn’t much room in the tiny the kitchenette cum dining room, so I left Mom in the recliner after saying goodbye, crossed my fingers she’d be in better shape at our next visit, and took my leave.


Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

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Advocacy, Real life, Toward better care

no news is good news: july 29, 2016

On Friday, July 29, I woke up thinking something hadn’t been right about Mom’s demeanor the previous day. Something didn’t quite fit. Except when I first arrived and she said “yeah” when I said “is it sore?”, she repeatedly answered “no” when I asked her if she was in pain. The day before that, her right arm had been painful to the touch, but aside from that, she said she was pain free. And yet she stared blankly, couldn’t speak clearly and seemed exhausted. To add to the mystery, she responded quite lucidly on several occasions, particularly with respect to the taste of the food.

All of this rolled around in my head for a bit, and then my intuition kicked in. She has a urinary tract infection. Her symptoms, such as the blank stare, were classic for an older person, and I had witnessed them all myself in the spring of 2014 when it had looked to me as if she might be dying, which of course she hadn’t. She’d made a full recovery once the UTI was diagnosed and treated.

There was no way of me knowing for sure, but I felt certain my intuition was right: on top of her other injuries, Mom had a UTI.

Sarah hadn’t called me as she had said she would to let me know what happened after I left. Had Mom gone to the hospital or had she stayed at the residence in the end? If she went, when did she go and did someone go with her? What was the diagnosis? What was the treatment? Did she indeed have a UTI as my intuition was telling me? Or was it something else?

No one got in touch with any news on the 29th either. I chose to believe no news was good news, and to sit tight. I didn’t have much choice, I wasn’t allowed to call the home with questions — it was verboten as part of the bundle of restrictions that had been imposed on me in February 2015 to punish me for advocating for Mom. But surely someone would call me if she were dying or had died. Surely someone would do that…

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

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Care Partnering, Death & Dying, Love

12 UTI symptoms experienced by the elderly and what they’re like in real life

Flashback April 7, 2014: Mom has a UTI, but I don’t know it. She never had one when I cared for her in her own home, so I didn’t recognize the telltale signs (see end of the post) at the time; I would become well-acquainted with UTIs over the next two years as she endured several due (in my opinion) to poor hygiene practices in the LTCF. But on April 7, 2014, I didn’t know what was wrong. It would take her weeks to return to her normal.


She’s still here and there most days. If I find her “wandering” in the hall, I stand a few feet away and wait for her to recognize me.

“That’s my daughter. That’s my Sue,” she says to anyone close enough to hear once she notices me and puts the clues together. Suddenly, she is alive and awake in this place that corrodes everyone in one way or another – body, spirit, or soul. Her eyes regain the hint of a sparkle. Some deeper part of her shines up and out, beams itself over to me. I give her time to fully digest my presence. Her eyebrows lift. A smile cracks the mask-like face that is a side effect of the Seroquel she’s being given.

If she’s asleep in an armchair (which she is more often than not when I arrive), I lean in before I caress her arm to gently waken her. Her eyes open slowly. The right is round and wide and watery; the left is half shut even when it’s open. Both lower lids are rimmed in red and too flaccid to contain her eyes’ natural moisture anymore; it slips down her face in silent tracks of everyday tears.

Her lashes are sparse. She pulled them out as a child and they never grew back thick and long as they might have. The tenacious few that remain are stuck together with yellowish sugary wink or the creamy medication the nurses apply once or twice a day. Cream or sugar? I don’t know which; maybe both. She looks at me. I look back. I search and hope a little.

“What are you doing Punkie?” She’ll often ask. When she does, I heave an inner sigh of gratitude and relief: she remembers me. There’s great joy in those initial moments of reconnection, and I am grateful she still knows me in some way though in many others she never has. She will be safe with me. I will rescue her for a couple of hours from the calamity, chaos and chagrin that hang here like faded curtains on big old windows. We will escape the carnage of forgotten lives tethered to chairs with pieces of string and safety pins and overseen by people who sideline their compassion to preserve their sanity. They are unable to see her, just as she was unable to see me.

But not today. Today she’s neither here nor there. In her place is a madwoman talking gibberish. She hunches, bent from the waist in a small open space at the intersection of two hallways. She looks at me. No spark. She sways. I fear she might topple over. I step closer to catch her in case she should fall. I am the eye of the storm, moving in to envelop her.

“They’re going. Store. Cloudy table. Let’s go,” random stuff tumbles from her in a frustrated torrent.

“It’s OK Mom.”

“We’ve got to get. Can you. He’s he’s he’s. Where did they soup. Tea. My pants.”

I reach for her hand; entwine her fingers in mine. “Let’s go downstairs and play the piano, Mom. Eric is coming to play the piano and sing with us.”

“No. They said socks. Breakfast. I… I… I… ”

“Ok. Mom. Let’s go downstairs to the living room. C’mon.” I squeeze her hand and tug her forward ever so slightly. But her feet are nailed to the floor. Crucified. She can’t lift them, not even to do the Seroquel shuffle.

“I can’t,” she says.

“Try,” I respond.

She stays still. I stand beside her, hold her hand. We are suspended. Both of us here and there and not.

April 7, 2014

Urinary Tract Infection (UTI) symptoms

Yes, my mom was living with Alzheimer disease and the resulting dementia. But her demeanour and behaviour that day were NOT dementia related. They were caused by an undiagnosed urinary tract infection. UTIs in the elderly are sometimes mistaken for Alzheimer disease, and if the individual already has dementia, the dementia symptoms worsen. Here are the six main symptoms of a UTI in the elderly:

  • Confusion or delirium-like state
  • Agitation
  • Hallucinations
  • Other behavioural changes
  • Poor motor skills or dizziness
  • Falling
  • Shaking / shivering
  • Blank stare
  • Garbled speech / aphasia

They may also have some of the typical symptoms found in adults:

  • Urine that appears cloudy or dark
  • Bloody urine
  • Strong or foul-smelling urine

The usual symptoms of UTIs in younger people also include:

  • Frequent or urgent need to urinate
  • Pain or burning with urination
  • Pressure in the lower pelvis
  • Low-grade fever
  • Night sweats, shaking, or chills

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