‘If she never remembered me again’: Loving someone with dementia

‘I imagined there were thousands of such thoughts in that room, clinging to the ceiling like helium balloons.’

Losing grandma illustrations
[Jawahir Al-Naimi/Al Jazeera]

The memory care centre lost two pairs of hearing aids and eight pairs of socks.

I was mad about the hearing aids, but the socks were a real sticking point for my mother. We had several phone conversations about them, but I always pretended I was hearing about it for the first time because people tell stories for all sorts of reasons and most of the time, the telling is as important as the story itself. If the telling was important to my mother, I was prepared to listen as many times as she liked.

The socks, it seems, were non-skid. The memory care centre ordered my mother to buy them since grandma kept falling, trying to get out of bed on her own. They were specific about the brand and my mother had to go to three different stores before she found them. They were not cheap, either – $80, which may or may not have included tax because I forgot to ask. Either way, they were expensive as far as socks were concerned.

After purchasing the socks, my mother took the time to write my grandma’s first and last name on each one in permanent ink, but after a week they were gone. Just disappeared into the laundry, never to return, like a 1950s husband stepping into the night for a pack of smokes.

Also missing: Multiple rolls of toilet paper. Toilet paper was one of the few staples not provided by the memory care centre, and now my mother had to make an extra trip to the store because it appeared one of the nurses had stolen grandma’s and taken it home. It might even have been several of the nurses working in concert for all we knew – divvying the toilet paper up into smaller parcels so they could smuggle it out the door underneath their shirts without getting caught.

All this for $9,000 a month.

The worst part was that we were afraid to complain. It was a nice facility, despite the issues. If we caused trouble, they might tell us to take our business elsewhere – to someplace that looked more like a hospital and less like a hotel.

So, my mother made a single inquiry about the socks and then let it drop.

But they have not heard the last from her. She is planning to post a scathing review on Yelp after grandma has gone.

A baby but no books

Grandma has a baby. It is not a real baby, but I was not about to be the one to tell her that. Neither were the nurses, apparently. In fact, I think they enjoyed having it around. One of them brought it a new dress from home and every morning, they swaddled it in a blanket since grandma lacked the mobile dexterity to do so on her own.

The baby is a Cabbage Patch doll my mother brought to brighten up the apartment at the memory care centre. Grandma loves dolls. She used to have several standing upright on chairs in her house like creepy, ringleted sentries.

This is why my mother brought the doll. To remind grandma of home. She did not expect her to take to it so fiercely and she did not expect her to believe it was a real baby.

My boyfriend laughed when I told him about it. I did, too. Sometimes, things can be sad and funny at the same time.

My boyfriend’s name is Jeff. Grandma has known him for years, but she never remembers him. One time, he made a funny joke about that, too. He said, “I’m tired of her bull****,” and we both laughed.

Lately, she has not remembered me, either, but there is nothing funny about that. Some things are so sad there is no space left for anything else. They are big enough to fill up a whole room all by themselves. Being forgotten by your grandma is sad like that.

So is catching sight of her in the dining area in a wheelchair with a doll she thinks is a baby on her lap.

We did not even recognise her at first. She looked different. Smaller and flatter somehow. As if nothing but memories had been filling her up all these years and she was slowly deflating now that they were gone.

Even her hair was leaving her. It was thin and someone had parted it down the middle, exposing a thick river of scalp running through the centre of her head. Her old self would have been embarrassed to be seen this way, but since she was not her old self, it embarrassed me instead. Grandma was always particular about her hair and seeing so much scalp almost felt like seeing her naked, only less natural.

I had to hold myself back from fixing it because I was a stranger to her and a stranger has no business touching someone else’s head. I was stuck loving her from a distance even though I was only a few inches away.

Losing grandma illustrations
[Jawahir Al-Naimi/Al Jazeera]

It was clear she did not know who we were, but it did not seem to bother her that we had joined her uninvited. This upset me on her behalf. Grandma has never been a particularly social person and she has always been mistrustful of people she does not know. If two strangers plopped down at her table a few years ago, she would have assumed they were there to steal her purse. Now, she had no control over her personal space. People came and went without checking to see whether she liked it or not.

“My husband is coming to get me,” she said. I gave Jeff a look to keep quiet. Nothing upset her as much as being reminded that grandpa was dead. We just needed to wait long enough for the thought to float away. I imagined there were thousands of such thoughts in that room, clinging to the ceiling like helium balloons.

She asked us if we were married and I said “yes” because it was easier than saying we just live together and besides that, it is the same difference as far as I am concerned.

Then, she asked if I wanted to hold the baby.

I said, “No.” It looked dirty. I was pretty sure she had spilled coffee on it, maybe even a little food.

But she asked again and I felt guilty about denying her. She had given me so many dolls when I was little. The least I could do was hold one for her now.

I took it gently, supporting its head on the crook of my arm. I stroked its pigtails of yarn just like I would a real child. Just like I would for grandma herself, if she was that small.

“I’m so glad the baby is back with its real mother,” she said.

“I’ve been looking everywhere for you.” She was looking at Jeff, too, now. “We called everywhere and put ads in the paper. It’s a good baby,” she said. “It never cries. I’m so happy it’s with its family again. That’s what it needs. Nice young parents like you.”

I was hoping she would leave this train of thought once her dinner arrived, but she took only three bites of turkey and declared herself full. She did not even touch her green salad, but I let it slide because I am her granddaughter, not her mother. Besides that, at this point, I was not sure if healthy eating was going to make a difference.

The nurse wheeled her back to her apartment and Jeff and I brought up the rear with the baby. Grandma’s apartment was depressingly bare. There were very few pictures on the walls because my other family members were convinced she would not notice them anyway. There were also no books. Just an old issue of Time magazine I was pretty sure came with the apartment.

Grandma cannot read anymore, but the lack of books still bothered me. At her house, there were always stacks of books lying around and the fact that there were not any in her apartment made it seem less hers somehow. As if she was a visitor in her own home.

Books were important to grandma. She grew up during the Great Depression, bouncing from state to state as her father looked for work to feed his family. Grandma told me each time they moved to a new town, she and her siblings would immediately race off to find the library. Not all libraries were free in those days, she said. If it was a free library, they walked home with their arms full of books and promises. If it was a pay library, they would walk home empty-handed.

This is why she bought her books instead of checking them out from the library. The books were a symbol of prosperity as surely as the shiny new Cadillac in the driveway. Books were also something she could share with the people she loved. A visit to grandma always meant going home with an armload of books to read and return so she could lend them to someone else.

Losing grandma illustrations
[Jawahir Al-Naimi/Al Jazeera]

She would have been so proud to know I am a writer now. If she was still herself, she would clip my stories and hang them on the refrigerator so she could show them off when visitors came calling. Instead, she was staring at a blank wall, having been deposited into her recliner by the nurse. She did not care that I am a writer. She did not have the capacity to care about me at all. I was just the mother of a baby doll.

“Who stole that baby from you?” she asked. She was tired and her eyes were closing, but she was fighting to stay awake like a child who did not want to go to bed. “Do you have any breast milk? I’m sure the baby’s hungry. I couldn’t feed it because I’m all dried up. I think it probably wants its momma’s titty.”

Jeff and I laughed at this unexpected crudeness as grandma’s eyes closed again.

I was not sure what to do. If we took the baby, surely she would forget what transpired and become alarmed by its absence in the morning. But if we did not take it, she would be upset we had abandoned it.

After her eyes remained closed a full minute, I carefully placed the baby on her chair, but she caught me. “Take it! I don’t want to be responsible for it anymore! It’s too much work! I don’t want to do it!”

I nodded that I would.

I did not hug her in the dining room, but I reached down to hug her now. “I love you, grandma,” I whispered as her eyes closed again.

I gave the baby to a nurse on my way out and asked if she would do me a favour and wait an hour before returning it.

She agreed, but as we were walking towards the door, I turned to see her disappearing into grandma’s room, swinging the baby jauntily by the arm.

So much for favours.

I figure she is probably the one who took the toilet paper, too.

Lying in wait

It started as soon as grandpa died. It was as if dementia had been there all along, lying in wait until grandma was alone so it could have its way with her.

Grandma married grandpa when she was 16 years old and he had died just short of their 69th anniversary. For all those years, they were never apart for longer than a few hours. Now, it fell upon her to make it through the night alone.

There is no emptiness quite like the emptiness of the bed you once shared with the person you love – no distance as vast as the space between its corners. It is a cold, blue ocean rolling with grief instead of waves. A town destroyed by fire. A sound that will not stop no matter how hard you try to make it go away.

It is no wonder everything around her looked changed.

Some days she did not recognise her own house. She dialled strangers on the phone, claiming she was trapped in Canada. She pounded on the neighbour’s door, screaming for help in the rain. She fell and lay unconscious on the floor for the better part of a day.

The memory care centre is far from perfect, but that is OK.

Grandma is safe.

‘Do not look back’

Does it matter if you visit someone who does not remember you?

If you ask Jeff, he will tell you it does not. These visits are not about my grandma, he says. They are about me. “Selfish” is the word he uses.

Sometimes, he lacks tact.

Maybe he is right, but even if he is not, I like to pretend he is because it offers me an excuse for my own inadequacies. The truth is, I do not visit grandma as often as I should.

It is over an hour’s drive each way and I work long hours as a freelance writer. I use the fact she does not remember me to justify my absence. If she does not remember me, then surely I cannot be missed.

Jeff also likes to point out the fact that sometimes visitors upset grandma. That is my word. Traumatise is his.

Grandma wants to go home more than anything in the world. She does not remember we sold her house.

Each person who walks through the door represents a potential saviour. A hero on a white horse galloping down the corridor to swing her over its back and help her escape. Some days it is all she talks about. “Take me to my home,” she will say. Except she does not say it once. She says it over and over again as if stopping might mean forgetting the one thing she remembers: She has a home and this is not it.

On other days, she gets crafty and tries to bribe us. She once attempted to trade me a red throw pillow for a ride home. Another time she attempted to barter with a piece of chocolate. On the worst days, she gets angry and yells loudly for help when we refuse to help her make her getaway.

Several family members have stopped making the trip to see her since visits can quickly dissolve into unpleasantness. I would like to believe this is in consideration for her and not themselves, but frankly, I am not sure.

There is also this: The last time I visited, she said my name as soon as I walked through the door. “Tami,” she said.

I ran to hug her, ready for a happy reunion, but she did not return my embrace. She knew who I was but it brought her no joy. Emotion like that would have to travel through far too much distance to take hold. We were standing on different continents.

It did not hurt my feelings. I was honoured that she recognised me. This, in itself, felt like an act of love – a symbol of my importance. Like she had rushed into a fire and come out clutching nothing but my name.

She asked me for a blanket and Jeff grabbed one from a nearby chair.

I am so cold, she said. Her voice was almost like a child’s. I put the blanket on her lap, and she asked me to move it higher. I pulled it to her neck and tucked it around her shoulders.

I stroked the back of her hair, and she closed her eyes in response to my touch. Either that or she was tired, but I preferred to think it was the former because loving someone with dementia is kind of like dating. You are inclined to interpret the signs in your favour.

There were so many things I wanted to say, but she was not in the mood to listen. She was already ordering me to take her home. “Push, push,” she kept chanting, rocking back and forth in her wheelchair. It was one of those days. There was nothing I could do.

I told her I loved her and left, walking quickly and ignoring her screams for help as I closed the door.

Still, as Jeff and I made our way towards the exit, I knew he was wrong about the visits. They did matter if only for the moment I stroked grandma’s hair, even if she did not remember me tomorrow. Even if she never remembered me again.

Even though I am a terrible granddaughter who kept repeating, “Do not look back and walk as fast as you can.”

Source: Al Jazeera