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.
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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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I love reading your blog even though I find it so so sad, keep up the good work Mrs x
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Thanks dahhhling 🙂 It is sad, but it is part of the journey. It’s good I can spend so much time with her and I feel fortunate there are people around the world (friends like you and also “strangers” I’ve never met) holding both our hands. I’m so grateful for the support ❤
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Wonderful.
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Thanks Martha ❤
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This is just beautiful. You’ve captured the “word salad” and the sense of time having no real meaning in a perfect way. My best to you and your mom. I know this journey only too well and wish you all the best.
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Thanks Tanya,
I love your term “word salad” which I will “borrow” in future if you don’t mind. I’ve also referred to it as “alphabet soup” in this post which you might also enjoy: https://myalzheimersstory.com/2014/03/04/alzheimers-alphabet-soup-is-a-sentence/
Susan
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Also Tanya, Martha’s short review of your book (which I can’t wait to read!) with a link to the longer review on her blog in our next list of seven memoirs worth reading. I’ll be posting it here in a couple of weeks.
Our first list is here: https://myalzheimersstory.com/2014/03/31/7-alzheimers-dementia-memoirs-worth-reading/
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Wow, Susan, thanks enormously for adding “Leaving Tinkertown” to your list. So glad to have found your wonderful blog.
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What a journey Susan . From your house in satwa – the day your website was launched and now your amazing stories and insights . I hope you are proud. Your Mum somewhere is I’m sure x
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Thanks Glenys ❤ I wish we could catch up over a glass of wine… Maybe someday… Regardless, I appreciate your support from afar 🙂 XOX
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Amazing, inspirational and a long way from the first website in launched in your villa Satwa – you are amazing x
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Awwwww 🙂 Right back at ya! XOX
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How well you describe the “corrosive” and spirit breaking life for both the attending caregiver and the residents of LTCF.
Every day from morning until after dinner I stay beside my husband who has now lived with Alzheimer’s for over 12 years. I cannot bring myself to leave him in the care of others who have so many others to care for, he is completely dependent, no longer able to walk, talk or feed himself. When will there ever be enough trained care and support staff for all our families who are the innocent, often neglected and once productive members of our communities?
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Faye, thank you for your touching comment. I’m so sorry for your pain – I know exactly what you’re talking about. With respect to your question, sadly, I think the answer is probably no. However, on the plus side there is ample room for improvement from now, and that represents a huge opportunity. I personally am doing all I can, as are many others, and the wave is growing in strength As our numbers expand worldwide. There is always hope, and hard work!
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