I called Mum’s care facility as I hadn’t seen her in a week and thought I’d at least check in.

One of my favourite nurses answers. “You know, you’re Mum is doing well. She’s enjoying her food, she smiles a lot, seems really content. She’s going through a good phase.”

I’m always relieved to hear that Mum is okay. She no longer speaks coherently, and can’t walk anymore but I still consider this a reprieve before the next layer of decline sets in. Once a routine is established and I’ve adjusted to her being able to do even less than she had a few months previously, it all changes.

“The only thing is she’s still getting sick every two weeks or so.” I focus in on this bit of information and search through my mind whether I’ve heard this before.

“Really?” I wait for more.

“Yeah, we still haven’t figured out why it happens. There’s another patient that does the same thing.”

Now I recall that Mum did throw up after I took her to the dentist but I thought it was because she had swallowed too much saliva and filling matter during the procedure.

“She doesn’t have the flu or anything?” I ask, knowing that Mum’s immune system is so sturdy she never even gets a cold when it’s going around.

“Not at all. One possibility is that she’s taking too much in at meal time. She’s a small person and since she can’t feed herself very well anymore we don’t know when she’s had enough.”

I decide to just ask what I already know is inevitable. “Do you think it has something to do with not being able to swallow as well?”

“Oh yeah, it certainly could be a bit of Alzheimer’s aspiration.” I’m relieved that she hasn’t tried to gloss over her answer to me.

My Mum Phyllis and I in February 2009, six months after she went to live in a care facility.

I knew one day that my otherwise completely healthy mother, not yet 80 years old, would start having problems with swallowing, breathing, and then eventually be bedridden. That her death certificate may actually have Alzheimer’s written as the cause of death due to the breakdown of the cerebellum – the control centre to every function within the human body. When I learned that if you die by pure Alzheimer’s the body curls up into the foetal position I felt the energy drain out of me, the image placed right in front. I had to process this one for a while just in case it was going to happen. It made me sick to think about it, but I made peace long ago that I can’t stop what is happening, only try to deal with it as it comes.

When I visit Mum the next day, she’s bright and relatively focused.

“Hi Mum! Hey Mum! How are you?” I walk towards her, bending down slightly so I’m in line with her vision. I give her a big smile and wait for her to return it.

“Oh, mmae hemm ooonm! E yddoe do skool skak vow. I know.” The inflections are still the same even though the words have gone. I translate it as “Oh, there you are! It’s so nice to see you!” I rub her arm and today she takes my hand.

“You look good Mum.” She hasn’t lost the ability to smile or at least mimic me. “You know it’s spring now and I got your garden pruned and weeded.” She looks away and I wait for her to make eye contact again.

A small piece of the garden Mum created over the 41 years she lived in her house.

“Your garden looks great Mum. It’s got nothing to do with me though. I have this person who comes in to do the pruning and clean up – she’s an Arborist. And your flowers are blooming, especially the Rhododendrons in the front yard and the crocuses you planted under the Japanese maple. I did manage to plant a few daffodils and tulips, you know, in the planter along the window and they look really good. You did such a great job Mum.” She’s been fiddling with the hem of her pant leg. When I stop talking she turns to me and smiles.

I want her to know what’s happening outside in the world that use to be her’s. I don’t hesitate to tell her tough stuff too like when her oldest brother died last year. We were outside in the care facility’s courtyard, sitting in the shade enjoying their garden.

“I have some news Mum. Your brother John died. I’m so sorry.” As I explain in more detail that he died quickly and wasn’t in pain, she looked at the ground for several minutes. At one point I was going to launch in and start blithering away to fill the gape, but I decided to wait and let her process what she could. Her mouth turned down slightly and she stopped fiddling. Eventually, she looked up at me and jerked her head back while saying, “Oh, I didn’t realize fomma wooz teesom.” And laughed.

The English hasn’t been bred out of us so when I was growing up hugging and kissing were done primarily when we said goodbye or when I was sick or cried, not nearly as spontaneously as we do it now. I am forever rubbing Mum’s knee, touching her arm, and I always kiss her forehead or cheek while telling her I love her every time I leave, only looking back to make sure she isn’t upset that I’m walking towards the elevator. When I look back today, she’s taking her right shoe off and letting it fall to the floor.

 

 

 

 

My mother is in the severe stages of Alzheimer’s. This intelligent, educated, practical, news-hound, who I’ve gone to for life’s answers my whole life, is now in a wheel chair, unable to talk except uttering the odd incoherent sentence or jumbled string of words that I can only decipher some of the time during my weekly visits at her care facility.

As many people know, this type of illness lingers on for what seems forever. Friends and family fall away as the years pass, continuing on with their own lives. My partner Mack joins me sometimes when I visit Mum, and once in a while my friend Joyce takes time from her extremely busy schedule to sit with us, remembering only too well what it was like when her own parents suffered from Alzheimer’s and Pick’s disease. Otherwise, no one sees my mother but me.

Except for our hairdresser of 25 years.

Henny has come every couple of months or so to cut Mum’s hair. She accepts no payment for this, telling me that Mum has been her client for so long, it’s just something she’s happy to do. Her grandmother was in a care facility until she died last year, so she knows how people and the routines of daily life we take for granted can slowly slip away.

Mum really needed a haircut. There had been a quarantine in her care facility for five weeks because there was a flu going around. The facility is hyper vigilant in trying to contain any kind of illnesses that can spread. So Mum’s haircut was put off.

The day of Mum’s appointment, I searched through the common areas looking for her. Had to ask one of the staff where she was.

“She’s right there.” A nurse points. I had walked right past my own mother.

I stare at the large, new black wheelchair she sat in. I had never seen it before. Her hands were resting on a black tray attached to the chair. What struck me was that her head was back, touching the cushy headrest behind, and her mouth was wide open as she slept. That and her hair was much longer than it should have been – she would have killed me if she knew how long I had left it.

“Mum’s dying.” Was my first thought.

How could she have deteriorated this much since I saw her last week? Mixed feelings always come up about her death. I know Mum wouldn’t have wanted to live in this condition and I don’t want her to either, however, I still dread the day when she does die.

“Oh my God.” I say.

“Oh, it’s okay. She’s just sleeping.” Another nurse responds to my strong reaction. “She ate a good lunch.”

She walks over to Mum. “Phyllis. Phyllis. Your daughter’s here. You’re going to get your haircut.”

No response. Once I came out of my trance, I went back downstairs to meet Henny, thinking we wouldn’t be able to cut her hair, and felt badly for wasting Henny’s time.

But when we returned Mum was awake and looking around, albeit a little sleepy.

“Hey Mum.” I kneel down beside her and rub her arm. “How are you? You’ve been sleeping. Look who’s here. It’s Henny.She’s going to cut your hair.” Mum rubs her left eye, looking straight ahead with the right.

We wheel her back to her room. As Henny sets up her work area, I get an old broom they keep in the small kitchen area. It’s my job to sweep up Mum’s hair as it is cut to the floor.

Yet another nurse has to help us take the headrest off of the wheel chair so Henny can get in close enough to do her job. But after that Mum seems content to sit with the requisite shiny black hairdresser’s cape over her body, still rubbing her eye that looks a bit red today.

“Mum. Does your eye hurt?” I ask.

No reaction to my question.

I offer Mum a Purdy’s chocolate from a box that I have stowed away in her side table drawer. She can no longer eat using utensils, but can still hold the small milk chocolate with the vanilla cream inside. I wonder when the day will come when she won’t be able to swallow.

“She still has a built in stop button. She’ll only have one, two at the most.” I say to Henny and then look at Mum.

“Hey, Mum, I’d eat the whole box of chocolates, but you never would!” Mum mimics my smile.

When Henny finishes, she bends down to Mum’s eye level and smiles at her while rubbing her arm. “Hey, Phyllis, what do you think. Do you like your hair cut?”

“Thank you.” Mum says as she touches her own hair.

“Did I hear her say thank you?” I ask as I fix up Mum’s bed.

“Yeah, she did.” Henny replies. I look over to see her now watery eyes still looking at Mum.

“You’re a good man.” Mum tells her as she touches Henny’s cheek.

“Well, you’re a good man, too, Phyllis.” Henny smiles and clasps Mum’s hand.

“Wholly crap.” I say. “That’s amazing.”

Henny nods as we watch Mum touch her hair again.

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