When loved ones become strangers

[Norrms]

WHEN LOVED ONES BECOME STRANGERS


Here’s something that happens so very often but is not spoken about that much, and that’s when loved ones become strangers because of dementia. But i believe it should be, In wider circles, to help those left behind understand they are not on their own in this.


Imagine this? Being married to someone for 30/40/50 years +, and then one day they look straight through you as you would a stranger passing by and have absolutely no idea who you are? Or even worse they call you by someone else’s name and treat you like an acquaintance. All you have built together, all you have celebrated and lamented, all you every talked about, your hopes, your dreams, your memories you have shared together, all gone? Can we even begin to imagine how devastating that would be for the loved one left behind? And yet thousands of people go through this every year and mostly in private, to ashamed to tell others and thinking its only happening to them.


The saddest thing is, it’s not talked about enough, not shared on social media or spoken about in support meetings? Why not?? Please don’t get me wrong, there is a time and place for everything and I am not advocating inundate them with all the horrors that comes with dementia all at once, but I do believe I being prepared and along the road the family walk after a loved one has had a diagnosis this should be gently brought up and discussed as a possibility. I am a firm believer that somewhere, deep down is the same person and always will be, I have said so many times there isn’t a Dr on the planet that can tell what those with dementia are thinking, especially in later stages; don’t we sometimes wish we could? But not possible, but why they forget loved ones and close family is certainly a mystery, but the truth is it happens, and unless we drag the effects of this awful disease screaming and kicking into the 21st century and lay it bare for all to see, we will not be able to help others understand the complexities of this awful disease

Norrms

Founder of Purple Angel Dementia Campaign

 

[Norrms]

xxxxxxxxx

 

[DreamsAreReal]

That’s the problem @Norrms the only people who really know about dementia are the sufferers and to a lesser extent their closest family. The more I hear “professionals” talk about dementia, the more I realise they don’t get it.

It breaks my heart to see posts on here from spouses who are in their 70’s and 80’s+ dealing with this horrible disease, their life partner becoming a stranger to them. So sad.

 

[Norrms]

Thank you

 

[Agzy]

An important and, as you say an often overlooked consequence of dementia. My OH, Pauline, can still recognise her family and me but when very ill through a UTI, for a while couldnt recognise her children and they became so upset and agitated and even shouting at her as though it was her fault. They still cant accept that she will forget them and me a some stage, thank you For sharing again.

 

[Norrms]

Your welcome Agzy xx

 

[Harky]

Funny thing is, my wife recognises our sons and granddaughter all the time (long may this continue) but regularly wants to know where i am and we've been married 55years. I'm sure most people are aware that failing to recognise people is part of dementia without even being involved with it.

 

[Felixcat1]

I don’t think the PWD is aware that they do not know or recognise their loved ones. As their world encloses around them it becomes their new normality. They are distressed because they don’t know where their loved ones have gone which must be terrifying for them, even though they may be standing right in front of them. In my opinion and from personal experience it is devastating for their loved ones when they realise there will be know going back. I think we have to try as hard as we can to cherish the person they were and to treasure our memories.

 

[HardToLetGo]

Yes it's a terrible moment when you realise that you are stranger to the person you care about, for us this has fluctuated though and happily now after a very turbulent patch and medication interventions the family connections are recognised again which is a gift although the dementia has progressed in other ways.

 

[millalm]

The day my Mum looked at me and asked when she had met me was the day I knew life with her would really never be the same. I told her that I had been with her for 60 years, for my whole life, ever since the day I was born because she was my mother. She looked at me and said 'it's too bad your Dad didn't make it because he would have known you.' It was the first time in 5 years that she had mentioned that my lovely Dad, her beloved husband of 60 years, had died, and of course interesting that she knew who my Dad was, and his relationship to me!!

There is nothing anyone can say to prepare you for this eventuality, I'm so sorry for all of you who have already, or will at some point experience this milestone on this terrible journey.

@Norrms you're absolutely right that there is not enough of a spotlight put on the realities of dementia, particularly from the caregivers point of view. I'm sure we could all write a book on "What to expect on the Dementia Journey, ... Generally, Sometimes, Maybe or Maybe Not" based on our individual experiences but I think a big part of the challenge is that as @Canadian Joanne put it " When you've seen one person with Alzheimer's, you've seen one person with Alzheimer's" You can replace Alzheimer's with dementia and the phrase still rings true. There are similar themes I have seen in Mum's fellow residents with dementia and through reading posts here, but the behaviours/symptoms associated with individuals, even with the same diagnosis, vary so much from person to person it would be impossible to write a What to Expect/ How To Manual.

I do know that just reading the experience of others makes me feel less alone, and posting here about feelings, or events that you don't want to share with family because they either wouldn't understand, or perhaps be shocked or upset by some situations gives me a sense of relief to not be keeping things bottled up inside.

I'm not sure that anyone who has not been on this journey can understand and I wouldn't wish it on my worst enemy.
Thanks for being so direct in addressing this sensitive subject.

 

[melli]

Hi @Norrms , you are so right and the fact that its not discussed, not just the fact it happens but also how it makes you feel isn't discussed enough, people around you just don't understand how devastating it is. To care for someone who has become a stranger and also thinks you are is so hard. I am lucky that apart from a few months while my Mom had infection and delirium she knows me, most days, however I know that can change on any day, I dread walking round the door to see if that flicker of recognition is there, that dread sits with you before you go adding to the pre visit knots ! To have her not understand that her Dad , my Grandad I knew and loved but to not link the 2 timelines, to know she no longer knows my - rare visitor of a brother, and hope she can remember her granddaughter . It takes away a chunk of your life too. My friends think that as long as she is happy and safe then its all good. but as you have all said , its not until you know - that you really know xx

 

[Norrms]

Hi @Norrms , you are so right and the fact that its not discussed, not just the fact it happens but also how it makes you feel isn't discussed enough, people around you just don't understand how devastating it is. To care for someone who has become a stranger and also thinks you are is so hard. I am lucky that apart from a few months while my Mom had infection and delirium she knows me, most days, however I know that can change on any day, I dread walking round the door to see if that flicker of recognition is there, that dread sits with you before you go adding to the pre visit knots ! To have her not understand that her Dad , my Grandad I knew and loved but to not link the 2 timelines, to know she no longer knows my - rare visitor of a brother, and hope she can remember her granddaughter . It takes away a chunk of your life too. My friends think that as long as she is happy and safe then its all good. but as you have all said , its not until you know - that you really know xx

Thank you my friend