The Realities of Living with a Parent with Dementia

It’s 7:40 a.m. and I’ve barely slept. I’ve been awake for twenty minutes, and out of bed for roughly six.

“There’s something wrong with you!” my Dad says, angrily jabbing his temple and glaring at me with every ounce of energy he can muster.

I’m tired. Too tired to start the day this way.

My Dad has dementia, and unfortunately, this is the new normal.

Caring for a Parent with Dementia

This morning he’s angry with me because although I say it’s morning, clearly I have lost my mind as it’s late afternoon — practically evening. I haven’t been tossing and turning in bed for hours and hours, I simply disappeared from the house for hours and hours.

I spend the next ten minutes explaining that it’s morning. I show him clocks around the house, the clock on his iPod, and even his watch. He isn’t arguing with me anymore, but that doesn’t mean he believes me. Instead, he shakes his head at me in disappointment and looks away. Conversation over.

And so begins another day — and hopefully, it’s a kiddie roller coaster kind of day, because the adult ones are way too intense.

Dementia is a cruel jerk. It steals the best of a person and replaces what it took with an overindulgent, angry, temperamental, funny, confused, toddler. It sounds harsh, but it’s true.

Gone is the man who helped bring me into the world.

Each day is a struggle.

Speech

As the disease progresses his speech becomes more basic. He no longer remembers brand names (with the exception of Pepsi) and uses colours and shapes to communicate what he wants. His favourite snacks are Zesty Doritos, and when he wants some he makes a triangle with his fingers and says “the orange ones”. When he wants shrimp, he shows me a hooked finger.

I’ve become very good at charades.

Mood Swings

His mood swings happen, but thankfully they are not severe. I am so thankful that he is not violent or overly sexual (both are common side effects with dementia). Just periodically angry, annoyed, and paranoid — which can be either exhausting or entertaining, depending on the day. Most of the time he is receptive to requests and coaching, but there are days when he decides he is the only mentally sane person in the house, and we need to sit back, bite our tongues, and ride the day out.

Anger

I almost prefer the angry days to the confused days. When he’s angry he does his own thing, becomes a little more self-sufficient (gets his own drink from the fridge, grabs a small snack). It’s a nice break from having to constantly cater to him. Of course, this is also when he is most vocal. There is nothing quite like sitting down to dinner, seeing him turn up his nose, squinch his face, and exclaim, “What is this shit?!”, despite the fact that it’s a meal he has always loved.

He still eats it, but he will let me know he’s not happy about it.

Confusion

After a confused day, I fall into bed at night, feeling like I haven’t slept in a week.

When he’s confused simple tasks become difficult. Asking him to change his pants sounds easy, but in reality, it takes four or five tries over a ten minute period to get the pants off, and then he gets confused, forgets, gets annoyed, and tries to put the same pants back on, and the whole process begins again.

This happens throughout the day, over and over. And over again. Pants. Lunch. Medication. Showering. It’s like trying to convince a two-year old that broccoli tastes like magic.

Innocence

My favourite part of dementia (is it wrong to say that?) is the innocence. As the disease continues to cast a dark and impenetrable shadow over his mind, he has become more innocent. In a way, he is discovering things for the very first time. I love seeing his genuine smile and joy — even though he tends to get a little obsessed by new discoveries.

Last summer he discovered sliders (you know, the mini burgers?), and his excitement was through the roof. He told everyone, yes strangers too, about the sliders he ate. For months afterwards, he would wave his hands and arms around like they were magic wands and ask for ‘slippers’ (he forgot the word sliders) with a big smile on his face.

Of course, there is another side to the innocence. The side that can no longer handle violence or negativity. In recent weeks I’ve noticed how agitated he gets when he watches TV shows and movies that contain violence, sexuality, or negative messages. So now, we only watch old movies, comedy shows from the 50s, 60s, 70s, and 80s, or programs with animals (he loves anything with horses, dogs, or dolphins).

Humor

There are days when it is almost impossible not to laugh. Sometimes he’s being goofy on purpose, and sometimes it’s something he does or says. I no longer try to understand why he does certain things. It’s not worth getting him upset. Instead, I just go with the flow. Like when he told me his pants were a little wet, and I suggested he go upstairs to change. Instead of going upstairs, he went outside to sit on the porch. Okay, no problem. Twenty minutes later I go out to tell him his lunch is ready. He’s asleep. I wake him gently, he smiles and laughs. He had forgotten he was outside. He then proceeds to tell me, very proudly, that his pants are dry now because of the sun. Smiling, I tell him he’s done a good job and ask him to come in for lunch. Does this mean today’s anger is gone?! I need to go knock on some wood. It’s only lunchtime.

Public Reaction

Probably one of the more difficult aspects of having a parent (or spouse) with dementia, is the public’s reaction — and sometimes a friend’s reaction.

My Dad has always loved children, wiggling his big ears, or taking out his false teeth. Anything to make a child smile or laugh. It’s something that parents found endearing and funny. Until now. Now he’s an old man who walks slow, has difficulty speaking, and doesn’t understand why people are shy around him. I recently took him to an ice cream shop where two kids were with their parents. He went to say hello and I groaned inwardly. His intentions were totally innocent. He said hello, then tried to give each of them a quarter. We didn’t know these kids, and while I knew his intentions, their parents were nervous and the looks of concern, nervousness, and pity that passed between them did not go unnoticed by myself.

Trying to stop him would have caused a scene as he wouldn’t understand why he was being discouraged, and I didn’t want his confusion to scare the kids. As soon as he gave them each a quarter, I lied said they were out of ice cream and we left.

I kick myself for not being able to handle people’s pity. The only thing that bothers me more than the pity, are empty questions.

“Does your Dad still know who you are?”, they ask.

“Yes”, I reply.

“Oh, that’s good!”, they respond.

To which I smile weakly. It’s one of the most frustrating and empty questions I’ve been asked. There is so much more to dementia than whether or not my Dad knows who I am. I’m caring for a man who raised me, but now has the mental capacity of a two-year-old. I’m cooking his meals, doing his laundry, helping to bathe him, coaching his behaviour, being his guardian and in a very twisted way, his mother. I’m standing with a smile or using a calm voice when he gets angry, yells at me, slaps my hands, or tells me I’m stupid. I’m his chauffeur, although he’d rather have his license back. But there is even more to it than that.

This man will never be able to walk me down the aisle. He will never be able to give me advice, or encouragement. If I’m lost, I can’t call him to come find me. He will never be able to travel anywhere with my Mom. Family vacations are now a thing of the past.

My Dad is physically here, but a piece of him disappears every single day. His deterioration is faster now. Every day matters, because tomorrow could be his last. This is my life while caring for a parent with dementia.

About The Author

I'm a travel writer and photographer who specializes in bespoke travel experiences. I write about boutique, savvy and cultural travel. My writing has been featured in Outpost Magazine, Travel + Escape, and UP! Magazine.

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6 Responses

  1. Kelly @OneQuarterMama

    The reversal of roles is so tough and it’s great you are there with him. It’s not very easy to see someone so strong become so reliant. My dad died from Parkinson’s and there were a good 5 years of me taking care of him. People do not get it at all until they are also in that position. It forces you to grow up very quickly – I started to grow grey in my 20s.

    Part of the reason I traveled back then was to get away from it all. But once I was away, I found I missed him, and a fellow traveler convinced me it was a great honor and privilege to be able to be with my dad before he died. Your dad is lucky to have you and I’m sure somewhere deep down he knows it. Just remember this is a temporary part of a journey in your life and you are not travelling this one alone.

    Reply
    • Pamela MacNaughtan

      It’s definitely hard to travel, knowing what is happening back home. As the disease progresses I recognize that spending time at home for a little bit is the best choice. As hard as that may be to accept. And you’re right, this is temporary. I am definitely not finished travelling around the globe.

      Reply
  2. Laura

    My mom is suffering from dementia, so this post really meant a lot to me.

    I read a book that said it’s often easier to not disagree on points that don’t matter (like what time of day it is). If the person wants to believe it’s evening, then it’s fine to go with the flow and not try to correct them and “prove” to them that it is actually morning. I tried this with my mom on a bunch of things, and it made life a lot easier with her. I sometimes even let her believe that I’m her sister (instead of her daughter) because she gets upset when she finds out she has a daughter that she’s forgotten about.

    I know how hard it is — hang in there!

    Reply
    • Pamela MacNaughtan

      We try to ‘pick our battles’ and do pretty good, but there are days when I find myself arguing with him or trying to convince him of something, and I’m not sure why. He seems to be deteriorating a lot faster now. Each week (and sometimes every couple days) I notice something different; difficulty eating, walking slower, more confusion, forgetting where he is when he wakes up.

      I use to be a personal care aid and worked with Alzheimer’s patients, and I remember wondering why some family members behaved the way they did, now I know!

      Reply
  3. Audrey

    Appreciate the honest look at what dementia does to a person beyond the actual memory loss. My step-father had Lewy Body dementia, an Alzheimer’s-like disease. What I didn’t realize before going through this with my step-father was the extent of the physical deterioration as everyone focuses on the cognitive. My mother was the main caretaker until it got to a point where she couldn’t take care of my step-father at home, but I saw all that you mention above during our visits home. I know how much energy and patience it takes to be a caretaker for someone with dementia and that the uncertainty of when it all goes makes one appreciate the present even more so. Because that’s all that really matters – the present.

    Reply
    • Pamela MacNaughtan

      Exactly. How is your Mom doing now?

      The disease changes his personality and body every day. The changes are usually small, but they are there. It’s so important to live in the moment. I’ve started driving him around the small town where they live. After dinner we’ll go out and I’ll drive down random streets for about 30 minutes. It seems silly, but it makes him happy, which makes our lives a lot easier.

      Reply

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