Living with Dementia

So many people struggle to talk about Dementia- like anything emotional and unexplainable- we can be over sensitive towards the subject, or we just don’t know enough about it to know what to say.

Sometimes it’s good to talk about these things with others who’ve been, or are going through it- to prepare for what’s to come and appreciate your loved one, as they are now.

I’ll start from when it all began- 2016- I was in my first year at University when conversations over the phone with mum rapidly became constant worry, from her end, about Nana.

“Nana rang me up in a frantic state, saying she was lost in the car and didn’t know where she was… She’s fine now.” 

“The neighbours said Nana fell down the stairs, and hurt her arm, but when I rang her up to ask how it was, she couldn’t remember falling down the stairs… She’s fine now.”

I felt perplexed. Nana was just getting old; her time was coming to an end- as blunt as that maybe, it’s straightforward and honest. 

At the beginning of my second year mum finally got confirmation that Nana had early onset Dementia. 

She was no longer allowed to drive- If I wanted her car, I could have it. 

I remained in the dark about the disease, not knowing what to expect but wishing selfishly she owned a better car.

“What next?” is one of the first thoughts you ache to ask the doctor, when you, or a family member finds out they have a serious medical condition.

Sadly the harsh truth of Alzheimer’s, and it being incurable, means the doctor can’t do much except make us aware that it’s only going to get progressively worse. 

Alzheimer’s patients, and families, aren’t given hope. 

There are no options to sit and discuss what will benefit their health. No next steps to take. No treatments that can slow or stop the disease.

Instead you’re left like a pot of pasta on the boil, waiting and wondering: “how long until…”

Only a month after the diagnosis Nana seemed to be having a lot more forgetful falls down the stairs. Mum had been contemplating getting the garage turned into an annex for a while. It wasn’t until making an appearance to her house, in Devon- discovering mouldy food in the fridges; faeces smeared around the bedroom, bathroom and laundry basket, that she finally made the decision to have it done.

By the middle of summer Nana was living at our house in Cornwall and my single mum, financing four kids, had become a fulltime carer.

I’d prepared myself for the worst on the train, that first visit back home, but surprisingly after not seeing Nana for over a year, she looked exactly the same. The woman my mum had described over the phone wasn’t the one sitting in front of me that day.

Nana might’ve been slightly skinnier, and missing a few front teeth, but it was her.

Physically, she was fine.

Slightly slower in dialect, but still responding as usual.

I got out the photo albums and settled down with her for a few hours, lifting very delicately the pages of our past and revising over memories.

She’d forgotten a few faces, including her son’s- all was forgiven when she remembered my gramps’. 

Overall, she’d played her role well, ingeniously convincing me she was fine- mum was just worrying too much- being old means having trouble remembering bits.

If I knew what the illness was going to do to her, the paint peeling off her old red wagon would’ve been the least of my worries. 

The part you think you’re prepared for.

Do you ever lie down for a five minute shut eye, but then you wake four hours later- sweaty, disorientated, slightly nauseous and frantically flustered?

You have no idea what time it is-where you are-what on earth you were doing before you closed your eyes, or even how it’s dark outside and you’ve wasted a whole day- I imagine that’s how Nana experiences family gatherings now.

Sitting amongst the chaos; twisting her head to one voice, and back right to another. Pinching her eyes open.

Looking farther lost, and farther confused, with every instantaneous blink she makes.

Every time I visited back home I began noticing a little bit more- our conversations; read like a script and repeated on a loop.

“Take me to Switzerland if I ever get that bad.” Mum said jokingly in the past.

When Nana’s got worse it’s became-

“Take me to Switzerland when I get that bad.”

One of the first things I read about Alzheimer’s was that the patient loses their memory. It shouldn’t have come as a surprise to me when Nana forgot who I was. It was one of the first things mum had warned me of. 

“Who am I?” I asked one day, standing up, tall, and smiling sweetly.

Nana closed her eyes and exhaled loudly. She laughed; let out a little groan.

“I don’t know,” she said with a smile that unsettled me. I was unsure if she was joking or not, and my face must’ve dropped because she stuttered.

“I know… I know who you are,” she looked at me closely, “I. I just can’t think,” she pinched her eyes shut.

“My mind’s just gone completely blank!” She said, putting her hands down into 

her lap. It was late into the evening so my mum had guzzled half a bottle of gin, and was finding the whole thing hilarious.

“Nana! Who’s he?” She pointed across the room, to where my brother was sitting.

“Thomas…” She answered cautiously, as if it were a trick question.

“Well done!” Said mum, making me feel worse.

“Do you know who your grandchildren are?” She spoke at nana as if she were a child.

“I’m not too sure.” Nana scratched the top of her head.

“Is she your Grandchild?” Mum asked, waving at me.

“I’m not too sure,” she said again.

“Do you know Katie?”

“Katie!” Repeated Nana, blinking. ”That’s right! I knew that!” She said triumphantly.

The whole room laughed. Except for me.

What comes next after they forget your name?

For some I’m sure it’s upset or guilt.

For me it was anger, which led to neglect.

Sitting in the house with her, I‘d  felt like a stranger.

Our relationship had altered, and without clarity or clear finality, I was held in limbo- blocked from grieving- blocked from making sense of it all.

Mum was going to work the next morning, and reminded me to make Gillian’s lunch.

All I remember thinking,

 was, ‘Why?’

Why should I when she won’t remember it?

When she won’t appreciate it?

When I’m a total stranger to her: the nice girl who brings her coffee in the mornings, and lunch just when she starts to think about it.

I had said it out loud and mum’s face had gone to stone.

“Oh Beth…Will you do it for me,” she asked, looking desperate. She’s my mum and I…”    

I was joking!”

 …. I wasn’t.

It’s fine.”

  ….. I lied

“I’ll do it for you….” and that was the truth. “Now go to work!” I said, brushing it off like sawdust.

How are we able to understand and process something that both Doctors or Neurologists still don’t?

Consider the fact almost half the drugs and clinical trials tested for cancer have had positive effects. Then compare it to Alzheimer’s drug trials, where virtually all have failed. It’s a fair statement to say nobody still really understands the disease, on both an emotional and scientific level.

She’s gone; she’s still here.

How is that possible? 

Losing half a person is like having the fairy lights without the batteries. 

It’s like having a car without any petrol, or keeping photos but forgetting the faces and memories behind them. 

They say ambiguous loss is the hardest loss of all. It’s a loss that’s unclear; it has no resolution, and no closure.

Everytime Gillian gets ill, I sadistically feel a sense of relief, that she might soon be passing- when she doesn’t, and she looks perkier the next day, I feel annoyance, which makes me feel even more f**ckd.

I spent a long time neglecting Gillian after she forgot my name. I’d say it was selfish, but if anything, it was a natural reaction for something I hadn’t ever properly prepared myself for.

I didn’t ever expect her dementia to get so bad. I didn’t ever think living with such an empty carcass could be so draining- I thought she’d die before she forgot who I was.

Being the carer.

Just when you think you’ve sussed out the patient- the flaws their disease carries with them- the habits that once left you confused, you can now handle after months- something new occurs- their dialect changes once more, their needs, once again, become challenging and you’re back at square one.

We’ve all had that moment of having to baby our drunk friend because they no longer have the capacity to think, speak or even stand on their two feet.

Well, just imagine if that friend became aggressive when you were helping them walk- that’s drunk Beth in a nutshell, and Gillian every time I have to put her to bed.

The drunk; incapable version of myself likes her independence. 

She doesn’t want help. 

She’ll say no when you tell her it’s time to leave. 

She won’t get into an Uber. 

She won’t let you undress her. 

She’s happy to sleep in her clothes.

“I’m not a child! I can do it myself,” she’ll shout at you if you try

, thinking she’s right.

When my mum goes away for long weekends, I’m left to look after Gillian- it’s only then I understand the emotional strain caring can have on one’s mental health.

Only recently I had to dress in my mums nurse attire to get Gillian to go to bed- I had to consider the fact she didn’t know who I was- being told to brush your teeth and put on pajamas by a girl half your age must feel belittling, especially when you’re mind’s stubborn enough to believe there’s nothing wrong with you.

Everytime I left the room to wait for her to change, she’d turn the lights off and jump into bed- I turned them back on to remind her to do her teeth, but she’d slam her hands onto the bed and shout ‘why do you care? Leave me alone’.

Wearing the nurse outfit made me feel more able to dominate the situation. I turned the lights back on, and accepted the aggression when I forced the tooth brush into her mouth.

I wasn’t dressed like myself, and so I felt less attached emotionally- she wasn’t hating me, but instead she was hating the nurse.

Un-usual, but now normalised habits.

– I ask Gillian to brush her teeth- she goes into the bathroom for a minute, runs the tap for another minute, and comes back out. I ask her to brush her teeth again, knowing she’s not done it. She gets defensive as I stand there watching,  annoyed when I tell her she needs to add toothpaste, and like a stroppy child she touches the brush with her mouth and shouts, there.

– I park onto the driveway and catch Gillian’s head popping out around the curtain. As I go to put my hand up to wave, she quickly pulls the curtain back.

– When I go out before dinner, and my mum gets home late from work, she’ll go into the back room and eat teaspoons of dog food.

– If Gillian can’t do something, or is frustrated, she’ll stomp around the house- slam doors- sit outside- shout at me when I try to address the situation.

– When Gillian still doesn’t know why she’s walked out the house, for the fifth time, she’ll tell me how she’ll leave me be, since I obviously think she’s potty.

– Anything I can’t find- her clothes- her shoes- food from the kitchen- usually will be found underneath her pillow.

– Denies she has dementia, or even a bad memory.

– Walks into a room, and back out because she’s forgotten what she wanted to say.

– Walks back into the room when she still can’t remember- lucky for me I’m a physic and knows what she wants. 

Being around Gillian most days has made me aware a lot of these habits are psychological. Like me being drunk, and not wanting to be helped, this came around at the time of Gillian’s dementia…

When Gillian was a child, food was a privilege and rations were a norm. It was frowned upon in her upbringing to leave food on her plate. I only know this since she’d always make a point to say, ‘back in my day that food would’ve been put in the fridge, and you would’ve been made to eat it cold for breakfast,” if ever I left anything at dinner.

For a while she began hiding her crusts from me- there’s days she still hides them in between her seat, or puts them in the bin- and then there’s other days she’ll leave them on the plate.

I used to comment on it…Tease her a little, or ensure her it was fine to leave them, but she’d get defensive and argue the plate of food wasn’t hers. And so I stopped. 

Dementia is hard to handle for anyone involved with the disease- like any problem, everyone will handle it differently.

We ask our loved ones questions, and we have conversations for connection.

When we are spoken at; never being asked anything in return, it can become a tedious chore.

It’s been over three years and only now do I understand, and accept, the circumstances. She doesn’t have the dialect to converse, she can’t think of anything to say, and she doesn’t feel comfortable at times talking to me- a complete stranger- or that rude nurse.

It’s an ambiguous loss because she died a long time ago, and yet, I still see her everyday.

There’s no right or wrong way to deal with the disease. However, through experience, the more useless you make them feel, the worse they’ll get, the more depressed they can become, and the harder it can be to manage.

The more I can tolerate speaking to her, asking her things, caring and questioning how she feels, the more happy she subsists. The more she will try to ask me, and the more calmness she’ll assert, at the end of the day, when putting her to bed.

Although it can be a hard topic to talk about, it’s worth opening up to someone who has an understanding, first-hand, of dementia. It gives you a sense of relief. Talking, laughing, and sharing stories connects you to another, and normalises such a puzzling feeling.

Gillian may look physically like my nana, but emotionally she is no longer there. And I suppose that’s what’s hardest to grasp at first, the realisation they’re veritably gone.

With strength, you pull through and emotionally detach yourself; understanding it’s not them, but instead the disease.

The love throughout spoken vowels- for better or worse. Blood you’ve carried down with you for generations- in sickness and in health. Keeps you going; caring and accepting such a sh*t circumstance.

And yes, I know you probably didn’t get the answer or satisfaction to feel much better about the disease right?

It’s still incurable- fact.

Fortunately there are a lot of charities out there raising money for research into Dementia

Spreading awareness and giving donations is the first step to help cure this deleterious disease!

Please take a moment and spare any money you can!

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