I hate the title PWD

[Rishile]

I am sick of my husband being described as a 'Person with Dementia' or PWD for short. He is a human being, he is an individual with various needs, he has a name (admittedly not used on a public forum), he had a life and, I hope, will have a life again in the near future. He has a medical problem but that doesn't stop him being the man I love and who loves me.

I admit, I hate labels of any sort as did he. This is probably why we waited so long to get a diagnosis. But, getting a diagnosis and a 'label' was one of the worst things I have ever done in my life. If I could turn the clock back, I would have done things so differently.

Rant over.

 

[Jessbow]

In real life, we wouldnt use the terminology in the first person
its difficult to use an acronym or a word tht is in the 3rd person without it offending someone.

My mother wasn't a ''dementia sufferer'' ( LOL! She didnt suffer, we did!)
She was a person that had dementia
A PWD, But a 'person' primarily.

 

[SeaSwallow]

My pet hate is the word 'battling' for example 'battling cancer' or 'battling dementia'. I am sorry but my husband is not 'battling' he is suffering.

 

[northumbrian_k]

I agree @Rishile and find that terminology rather dehumanising. It does not take much to type out words that are more suitable, especially if one has a device that stores frequently used terms. Dementia does tend to take over but does not define the person. Over 45 years ago I was referred to as 'an epileptic' by someone who should have known better. That one dimensional description still rankles.

 

[Neveradullday!]

I like to think of people as souls, an old fashioned term, these days. Not diminished in any way by whatever challenge they have to face. Deep down the real person is still there.

 

[Lawson58]

I think PWD is a convenient device that allows us to convey information clearly and quickly to others like us on this forum.

If you think about other diseases such as cancer, it usually described as a person who has cancer of one form or another and they all have their various abbreviations. People like my husband have CHF and others have COPD.

They are all people and we all use acronyms to differentiate between them. They are only important for those need them and that is usually us, the carers. And they are factual and useful.

How else could you describe a PWD?

 

[sdmhred]

I agree labelling of any sort is demeaning and takes away the beauty of the person. I think that is why i love the remembrance thread showing pictures of people that have passed. You see a person, and individual with likes and loves - not a PWD,

 

[Rishile]

Having re-read my original post I can see it may read that I am commenting on the use of PWD on this forum. That was not my intention. I object to doctors, nurses, consultants, Social Workers, Hospital Staff, Care Home staff referring to my husband as 'A Person with Dementia'. To these people I would say - NO - he is (name). I have had so many conversations with the above people recently and they nearly always start a conversation with 'Well, A Person with Dementia can/cannot be expected to...' I find it infuriating.

Maybe we should all be born with stickers on our heads to advise everyone else of any 'deviations to normal' we may have.

 

[Neveradullday!]

I suppose it's something we have expect from the medical profession, ie depersonalising our loved ones. They'd probably get compassion fatigue otherwise.
I'm guessing staff in hospices are much better.

 

[JaxG]

For me personally when my husband got a diagnosis it was a huge relief, for both of us. It explained so much about his behaviour, I cried with utter relief and the 'labelling' has allowed me to get the help we so desperately needed. We all have labels - in work, in life, in sickness - I don't object because it describes the disease or the role - not the person doing the role or diagnosed with a disease. I agree with @Lawson58 - I have had cancer, was cancer sufferer - it explained succinctly my condition, I did not feel dehumanised, the label is simply a vehicle for explanation.

 

[jennifer1967]

i think that they are used as umbrellas to include more than one form of that condition. there are more than one dementia, cancer or COPD so at least they dont overlook it. its suppose to be a person with...... but hospitals are notorious for identifying illness rather than person as a way of describing the patient. if you have more than one illness, they will identify according to which dept you are in.

 

[CAL Y]

My pet hate is the word 'battling' for example 'battling cancer' or 'battling dementia'. I am sorry but my husband is not 'battling' he is suffering.

I agree. Battling is a terrible word to use. It seems to imply that if you don’t get better you didn’t fight hard enough.

 

[sdmhred]

Being a health professional I think we often make assumptions about the person based on their diagnosis - especially with mental health - Eg someone with a certain type of personality disorder will be needy and a drain to work with….or someone with drug/alcohol issues will not make any changes. This is not helpful but I see it all the time. Indeed I do it myself and have rebuked myself for ‘pigeon holing’ people and not letting them be themselves.

As @Neveradullday! says it is probably a defence mechanism to protect against compassion fatigue and burn out. It’s tough to provide person centred care with high caseloads and lack of support from management etc.

sadly it motivates me to leave the profession.

As @Rishile says however I do think absolutely no excuse not to call a patient or client by their name ….and to get it right. I alsways tell professionals my mums name, write it on the board when in hospital etc …..often ignored!

 

[Sarasa]

I'm very much guilty of using the phrase PWD on here, but I hope I wouldn't ever refer to someone I met as a being a person with dementia.
My pet hate was being called 'mum' or 'mother' when I went to appointments with my son, rather than by my name

 

[Chizz]

My views are contradictory!
Yes a label as the only identification of a person is abhorrent.
Yes a label as a convenience to refer to is "convenient" and that's why they are used.
A person should be addressed by their name, or use the name or relationship when talking to relatives (eg, Dr says "your mum" to a daughter or son, in my view is OK).
Getting a name wrong upsets and may undermine confidence in the person getting the name wrong.
But the person who has a form of dementia is not the only sufferer, as we all know!
Often the carer is uncared for!

 

[jennifer1967]

i didnt like mrs ------------- when i had appt etc because i was the third and wanted to be me not the chain. when i go medical appts with him, because of the age difference, we get the look and are you......? i usually leave them guessing for a minute. my daughter gets ask if she is her dads granddaughter.

 

[Chizz]

I think the worst is the "does he take sugar" syndrome - they speak as if the person with dementia isn't there.

 

[Grannie G]

I used to refer to my husband as a diabetic to explain his condition and refer to people with dementia on this forum to differentiate them from their carers. I'm not happy to use the abbreviation PWD and always write it in full.

We all have our bug bears .

My husband was never referred to as a person with dementia outside this forum by any medics or professionals. It was always Mr G.

I know we can be oversensitive and protective towards people who are unable to speak for themselves and that is how it should be.

 

[Rishile]

I think the worst is the "does he take sugar" syndrome - they speak as if the person with dementia isn't there.

Oh yes - I have always hated that. My brother is blind and his wife is often asked this question. She replies that he can't see but he can still hear and talk.

However, since my husband has been in hospital, he has been asked if he takes sugar in his tea and he often replies 'yes, one please'. I have to correct him and say, no, no sugar. At least they ask him first.

 

[Yankeeabroad]

I think the worst is the "does he take sugar" syndrome - they speak as if the person with dementia isn't there.

oh I hate that one too with my dad.

often I’ll say “I don’t know, ask him”. If he’s feeling mischievous and on it, he’ll respond “I don’t know, do I?“ before actually replying. and then we both have a giggle and some eye rolling.