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Journey? I don't think so...


Registered User
May 21, 2014
Ontario, Canada
I haven't been here in a long while. My husband was diagnosed with Posterior Cortical Atrophy a couple of years ago. It's been a challenge as everyone here caring for someone with dementia will understand. I have a beef: I'm having a hard time wrapping my head around people that refer to this disease as a "journey". It's not a journey to me - its a freeking nightmare. It's a nightmare to watch someone you love deteriorate and lose all of the capabilities they had before. It's a nightmare to have to help your loved one with everything, from getting dressed to using the bathroom. I shudder to think, as this disease progresses, how bad things will get: hallucinations? Bed-wetting? Not knowing who I am? Not being able to eat or swallow? Does that sound like a journey to you? Someone on another forum referred to it as a "marathon". I've run a marathon. It was hard work. A lot of training and a lot of frustration. A marathon doesn't come close to dealing with dementia. What are your thoughts? Isn't there another term we can use that's more appropriate? I will never refer to this as a journey (or a marathon).


Registered User
Aug 17, 2014
I couldn't agree more !
I have most of your problems with my wife plus lack of mobility.
It's a struggle living day to day.


Registered User
Jun 14, 2014
Journey or marathon are just terms to describe how others see n refer to it.
I just see it as continuing to care for the one I love, no mater how much they have changed or how different they seem. No matter how much my wife changes cos of this condition she still be the person I met fell in love with n married vowing to care for her in sickness n in health. No matter or had bad it gets or how lonely or frustrated it can make me feel, she's the most important.
How it seems to each person is personal, but I never think of it in either of the terms

Sent from my iPhone using Talking Point
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Registered User
Apr 24, 2013
To me it's a roller coaster and not a straight line experience. Sometimes the downward slope is interminable then a wee upswing will occur. It is hard going and I don't enjoy it but I do the best I can for as long as I can. Now into the fifth year since diagnosis but issues before that too. The most I can say is that my husband is and was a good person and deserves whatever I can put in place for him. Whether or not that will always be me remains to be seen.

Good wishes.


Registered User
May 12, 2016
Difficult isnt it...

People try to find words to ease themselves over the horror that unknown illness causes them. They dont like to ask (its considered impolite) how you would describe it.

I know someone who has HIV he ranted at the term 'living with HIV' he said 'its not a flat mate , someone who comes in and uses all the dishes or eats everything in the fridge, its not going to pay half my rent, I dont have a relationship with it. You live with your parents, partner or even your dog...HIV is a virus its a thing that inhabites your body, its not a choice or something you can break up with if things dont work out ..So stop saying living with HIV and tell it like it really is..I am a person suffering with HIV'

I think this is the kind of rant we all want to say when people mention a journey , as if youve packed a case and gone on a trip...


Registered User
May 9, 2012
south-east London
I don't think we should get too hung up on the different terms used to express ourselves - other than if what we say will cause serious and unnecessary offence :)

A similar comment I heard or read recently took exception to the use of the word suffering instead of 'living with'. Each to their own :)

The important thing is that people should feel able to express themselves in whatever way they can without the extra worry of wondering if their phraseology is or isn't in line with someone else's.

Speak from the heart, express and offload without worrying about such restraints. Whatever we are going through, someone else has experienced it, is experiencing it or will (more than likely) experience the same in some way or another - and will recognise the situation whether it is described as a journey, nightmare, rollercoaster, challenge, hell or a walk in the park :)
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Registered User
Apr 30, 2013
Whatever you call it, it's a rocky road that carers travel. Sometimes I felt it was like walking barefoot over broken glass. You have my absolute sympathy, though I know that doesn't help. But I just wanted to say something.