Tea for Two

The strategies and treats I’ve been using for years to bribe myself through another day at the home office are no longer working. Comfy clothes, deep breaths, and the chocolate treat of the week help dampen the dread as I walk down the hall, but part of me still wants to shriek and have a meltdown.

I was so grateful for the job when I started. Not because it was my dream job or a huge opportunity, it just met my needs. Our needs. I needed a job that would pay the bills but would let me stay home and watch my mom.

I set my cup of tea down on my desk beside her picture. Now that she’s gone, I would love to look for another job, but I suspect that no one is going to hire someone who is two years away from her pension.

I remember trying to warn her doctor that something was wrong. I don’t recall his name. My mom wasn’t convinced that there was an issue yet, but she let me come to her appointment.

“She’s forgetting things,” I told him. “I have to repeat myself a lot.”

“It’s natural as you get older for your brain to slow down a bit,” he replied.

I wasn’t sure how he could come to the conclusion that it was natural when he hadn’t asked any follow-up questions or done any tests.

“This is different,” I said quietly, my hands clasped in my lap.

“How old is she?” he asked.

I had done most of the talking up until that point but I frowned, confused why he was asking me when he had her chart in front of him and she was sitting right there. I turned to my mom and jerked my head in the doctor’s direction, encouraging her to answer herself. She hesitated.

“Sixty-four,” she said eventually.

“Nooooo,” I said gently, “You’re sixty-five.”

She blinked.

“We had a big party,” I reminded her.

She continued to stare.

“We rented a room at the community centre. All your friends and extended family came. This just happened a month ago!” I paused and got louder after each sentence, trying to convince her.

She laughed and shrugged, “When you reach a certain age, you stop keeping track.”

The doctor seemed to think it was funny too.

My knees clamped around my hands as I searched for another way to convince them.

“She left a pot on the stove,” I said quickly.

He raised an eyebrow, a silent request to elaborate.

“She wanted to heat up some water for tea and forgot about it until it boiled down to nothing. I found the pot on the stove before it was too late,” I said firmly.

“I probably got distracted by a phone call,” my mom confessed.

“It happens to the best of us,” he said and turned towards his computer to type a note. “How many times has this happened?”

The brief feeling of triumph dissipated.

“Just once,” I admitted.

He nodded. His shoulders didn’t move, but I saw him mentally shrug.

“We’ll monitor for changes.”

You mean I will. I thought. And then you won’t believe me when I tell you about them.

It took another two years and a car accident to get her diagnosed with Alzheimer’s.

The computer beeps at me angrily bringing me back to myself. I use variations of the same password for everything but in my reverie, I’ve entered it wrong. I consider risking another attempt but then decide to play it safe and hit “Reset Your Password.” I write the new password on a sticky note and fix it to the edge of my desk.

My hand runs along the rich, wood surface. When I decided to buy a desk to fill an awkward space in my house, the plan was to find something cheap with a little storage so at least I would use it to write cheques. Then, while antiquing, I fell in love. It was classic and beautiful. An image of the desk in one of those Victorian houses with the wrap around porch while a lady in a hat and lace gloves wrote letters to her family immediately popped into my head. I loved writing letters to my grandma when I was little. I blushed as I remembered how I had wanted to write more; short stories, poetry, and maybe even a novel one day. I was always too embarrassed to try.

The price of the desk seemed outrageous, but after walking by it for the fourth time and promising myself I would use it to write anything and everything, whether that was an award-winning novel or a grocery list, I arranged payment and then delivery. Any guilt or doubts were gone once it was finally in my space.

Now it’s covered in monitors and papers. I bought it to inspire creativity, but sitting at it now, only inspires bitterness. Not at my mom. Never at my mom. I was grateful for every minute I had with her. Bitter at life in general. And the healthcare system.

The doctor was the first but he wasn’t the last. The disregard when the occupational therapist came into our home was a little more subtle, but still irritating. Maybe because it took me longer to recognize it.

She swept through our front door, all rushed and breathless.

“I’m an occupational therapist or OT. Have you ever had an OT in your home before?” she asked.

We shook our heads as she followed us into the kitchen.

“Well, occupations are any activities that occupy your time, which could literally be anything. But the occupations that the health care system is most concerned about are the ones you need to do every day, like getting dressed, feeding yourself, having a shower, or taking your meds. So, I’m going to ask questions about how you’re managing those and see if I can recommend any equipment, strategies or services to help.”

We nodded.

“I understand I was referred because there was a fire?” she glanced at my mom, then back at me.

“Yeah. My mom likes tea,” I directed a pointed look paired with a silly face at my mom as if tea were a vice. She smiled back, then looked down at her lap. “She has always made tea by boiling water in a pot on the stove but she kept walking away and forgetting about it. So, I bought an electric kettle because it shuts off automatically, but, despite showing her how to use it several times, she didn’t understand. She put it on the burner and it melted.”

The OT nodded as she opened up her electronic device to document.

“I bought a regular kettle, the ones that are supposed to go on the stove?” I confirmed the OT understood before I carried on. “I was hoping one of us would hear it whistling when her water was ready but she forgets it’s there and keeps using the pot.”

“Well,” she said, “they do have magnetic fire extinguishers that you can attach to the hood of your stove and if it senses too much heat, it automatically dispenses to put out a fire. Or, they have an automatic shut off valve with a motion sensor. If she turns the stove on, then leaves the room and it doesn’t sense any motion for ten minutes, it shuts off automatically.”

I didn’t love the idea of trying to clean up a mess if the magnetic fire extinguishers went off in the middle of my work day.

“I’ll look into the automatic shut off valve.”

“They’re expensive,” she warned.

“Of course they are,” I sighed but then immediately felt guilty so I rolled my eyes at my mom as if it were an inside joke. She rolled hers too.

“Do you have any other family members close by?” she asked me.

“No, just me,” I said.

“Then I need you to sign this consent form for my services,” she said as she pushed a paper in front of me.

I frowned and stared at the paper for a moment. My mom was staring into space. The OT hadn’t directed a single question or comment towards my mom since entering our home. She hadn’t even asked her how she was. After confirming she had the right house, she had just given her a small wave. I stared pointedly at the OT as I pushed the form in front of my mom.

“Mom, the OT needs you to sign this form so she can do her job, okay? She wants to make recommendations to help keep you safe.”

“Yeah, of course! I don’t want to burn the house down,” my mom said brightly and grabbed a pen.

As redness bloomed up the OT’s neck and cheeks, my suspicion was confirmed. They already thought my mom was gone, incapable, not worth talking to. Either she wouldn’t have the answer or it would take her too long to find it, and they’re too busy. It’s easier and faster for them to go through me, but it was insulting.

Anger burned in my gut. I wasn’t in denial. I knew, one day, probably soon, my mom wouldn’t be herself anymore, but until that happened, she still deserved to be asked, and to have her say.

My pleasure at the OT’s embarrassment died quickly when it took my mom three attempts to find the line where she was supposed to sign.

“Thank you, Bernice,” the OT smiled as she took the consent form back. Then she asked, “Do you have any concerns that you want to talk about?”

My satisfaction returned upon hearing the OT use her name.

I’ve barely been working for an hour but decide I need to stretch my legs and make a tea. I still use my mom’s pot. I remember one of the last times she was able to make tea on her own. I came downstairs one morning and she was already in her chair with cup in hand. I thought it was going to be a good day.

“Mornin’ mom!” I called cheerily.

“Are you talking to me?” she asked.

I laughed. “Of course!”

She looked thoughtful. “I’m not sure you should be calling me that.”

I frowned as I took a mug out of the cupboard. “What else would I call you?”

“Well, I don’t know,” she said thoughtfully, “But I don’t think I’m your mother.”

I froze as I placed the mug on the counter, then exhaled. It was going to be one of those days. I turned to give her my full attention and leaned on the back of the couch.

“Who do you think you are?” I asked with a tilt of my head and my kindest smile.

I started counting to sixty, just like they taught me in support group. Sixty seconds is how long it can take for someone with dementia to process what’s being said or asked. If you say something else too soon, it restarts the clock.

She thought about it.

“I’m not sure,” she said finally. “But I would know if I was your mom, wouldn’t I?”

My chest tightened.

“Most likely,” I agreed.

“I must be somebody. So, I guess I could be your mom,” she admitted.

I let her think about it. I let her get used to the idea.

“I think I know you,” she said, then with more confidence, “I think you’re important.”

I nodded slowly.

“Do you feel safe?” I asked her. My voice quivered a bit.

“Yes!” it was immediate, “Yes, I feel very safe. I think I love you. Like, I look at you and I feel feelings of love.”

I breathed a laugh.

“Well, that’s good. I love you too.”

“Really?!” she looked so surprised and pleased.

“Yes.” I laughed again. “To me, you are my mom. You always have been. But I can call you by your name if you want,” I offered.

She considered it.

“If you want to call me mom, you can call me mom. I don’t want to hurt you.”

My eyes welled up as my heart hammered with love.

“You won’t hurt me,” I promised.

I suppose, now that I think about it, that was actually a good day.

I find the quilt, wrap it around myself and sit back down at my desk. I peck at the keyboard a bit but then get distracted by one of my lists. I pull the little piece of paper toward me. There were so many things that I dreamed of doing when I was stuck in the house watching my mom. After she passed, I was so overwhelmed with different emotions, I couldn’t think of any of the things I had wanted to do. They say it’s normal for a caregiver to have conflicting feelings after their loved one passes from a prolonged illness; to be sad and relieved. When I finally remembered, I wrote them down. They were simple things like “get a massage,” “go for a walk along the trail,” and “meet a friend for coffee.” But those simple pleasures become amazing luxuries when you can’t leave the house without leaving your loved one in danger.

The community care coordinator tried to help but the system was bigger than her. When she came to visit, I took her into the dining room and let my mom watch TV so she wouldn’t see me beg.

She started the conversation with, “Your mom was recently in the hospital because of a fall?”

“No. Well, yes. She was dehydrated and that caused some confusion which led to a fall.”

“Dehydrated?” she asked with a frown and a tilt of her head.

The embarrassment of my neglect was very familiar to me by that point.

“I’ve been watching how much she eats but I never thought to monitor how much she drinks. I thought she was drinking when she was thirsty and re-filling her cup. I guess I should have realized she wasn’t drinking as much when she stopped making tea,” I admitted sheepishly.

“I wouldn’t have thought to keep an eye on that either. And it has been a very warm summer.” Her reassurance was generous.

“I’m gonna make sure she gets a glass of water when she wakes up, with her meals and before bed,” I promised. It would mean more laundry because my mom wasn’t recognizing the bathroom urge anymore, but better that than going back to the hospital.

I hesitated, not really sure how to frame my next question.

“I’ve been looking at research articles and they keep saying ‘if you don’t use it, you lose it.’ Well, she used to cook, quilt and play cards, but now she tends to just sit and watch TV. I think she could still do some of those things with encouragement and supervision but I work all day. I’m worried if she continues to just sit there, she’s going to get worse faster. I was wondering, is there someone who can come in and do activities with her while I’m working?”

The care coordinator took a deep breath and I knew immediately.

“People can be sent to the home to help with personal care but they cannot stay for recreational activities,” she explained.

“Oh,” My body sagged.

“There are day programs that she can attend with trained professionals and other patients,” she offered. “They play games, do crafts and other activities.”

“Oh?” I straightened, excitement fluttering.

“It’s a six-month waiting list,” she grimaced and seemed to brace herself.

I sighed and sagged again, but then nodded.

“Well, might as well sign her up for that,” I said with a weak smile.

She seemed to relax and made a note. I wondered how many people had yelled at her for being the bearer of bad news.

“Have you thought about future planning? Whether you want her placed in a nursing home if her care becomes too much?” she asked.

I breathed hard and rocked back and forth while trying to hold back tears.

“Um, no. I haven’t thought about it,” I admitted.

“If it’s something you are considering, you might want to start picking your preferred facilities. Most of them have a five-year waitlist.”

My head snapped up.

“Five years!” I exclaimed.

She nodded sadly.

“Yes,” she confirmed. “If you put her on the list and her name comes up, but you decide to keep her at home, you can always refuse the bed.”

I gave a small huff of resigned amusement.

“Yeah, sure. I’ll put her on that list too.”

My mom had already been hospitalized twice for pneumonia. The doctor told me it was because the muscles in her mouth and throat weren’t coordinating properly anymore. Food and liquids were getting into her lungs. She wouldn’t make it five years.

She lasted for two. There is no cure for Alzheimer’s but a part of me feels like the health care system ignored her into an early grave. And I can't help but wonder what would have happened if I hadn't been there to speak up for her when she couldn't, feed her when she wouldn't, and if I hadn't been there to watch that she didn't burn her pot.

I’ve been staring into space for so long, the system kicked me out. I enter my password to log back in but it beeps at me. I check the caps lock, I type slowly, but it continues to tell me my password is incorrect. I’ve used a variation of the same password for years. I roll my eyes and reset my password. I take a sip of my tea but it’s cold.

How could it be cold already? I just made this cup. I frown at it. Didn’t I? Or is this the cup from yesterday? I look around. Did I make a cup first thing this morning? I couldn’t remember. Where would my second cup be?

With the quilt around my shoulders and the mug in my hand I go back to the kitchen. As I stand in front of the stove a sweat breaks out along my neck but the rest of me goes cold.

I never did install that motion sensor. The burner glows red, the pot has started to crack, and my mom isn't around to blame anymore. There was just me.