How to (not) deliver a diagnosis.

[foolishfriend]

Hi all,

This is my first post on the forum. I'm responsible for caring for my Dad who has severe dementia and my Mum who has recently been diagnosed with Mild Cognitive Impairment with a suspicion of prodromal Alzheimer's.

Mum has been attending a memory clinic over the last year. We found out about the diagnosis because she was copied into a letter from her consultant neurologist to her GP. Can there be any worse way to inform someone of such devastating news than to be a copied recipient of such a letter? Surely Mum should have been told this first hand either by the neurologist or her GP so that she was supported and could ask questions and so on.

Does anybody have similar experiences, or do you think the cc-ing to Mum was an error?

 

[smartieplum]

Maybe your mum was informed and because of the condition was copied into the correspondence.

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[foolishfriend]

No she wasn't. This was the first time she heard a diagnosis

 

[smartieplum]

Then sounds like an error on the docs part. Could be that its department policy.

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[Onlyme]

Mum was sent a letter outlining a future hospital appointment. She had not remembered/realised she had Alzheimer's so was horrified to see the Mental Health Team letter heading.

Loads of tears, anger, shouting and a remembered feeling of resentment to Dr and a distrust as they obviously didn't know what they were talking about.

 

[foolishfriend]

Sorry to hear about your experiences Onlyme

I know that Alzheimer's had never been mentioned before to my Mum, as I have accompanied her to all her appointments

 

[nitram]

"...do you think the cc-ing to Mum was an error?"

When booking in several hospitals have a policy of asking whether or not the patient would like to receive copies of correspondence to their GP.

 

[foolishfriend]

Hi Nitram. I hadn't considered that but it may well be so.

Even so, I would have expected the neurologist to give this news to Mum first, and in person. Being cc'd into a letter is a dreadful way to find out about a diagnosis

 

[Margi29]

Due to mum been so upset at diagnosis, then total denial, and ' everyone else is mad '
I have all correspondence sent to my home address.
Mum also got letter once from MHT and was crying, saying she was fine etc...
I take anything I think may upset her re letters out of way if possible.

 

[BetsyX]

Hi,

That is an awful way for the news to be broken and I believe that must have been an error. Your poor Mum!

It amazes me that with a disease which attacks memory, Doctors continue to correspond via the patient and expects them to remember such important information - check up appointments etc.

There is such ignorance around this disease which infuriates me!

Best wishes to you and your Mum.

Betsy

 

[foolishfriend]

Thank you for your replies Margi29 and BetsyX

I think if I could get future correspondence sent to me and then be able to pass anything along to Mum in an appropriate way, that would help.

BetsyX - I'll take a look at your website, thanks.

It's comforting to see so many people sharing their stories and advice for what helps/doesn't help. I'm going to need all the help I can get.

 

[carol4444]

I wonder if Drs have dementia training. Guess they are over burdened with everyone's problems so don't have time. Unless you live with dementia you wouldn't realise just how devastating these hiccups can be. Visits from any health official nearly always ends in tears, they then clear off leaving me to sort the mess. Hope your mum gets over it. I often say to my mum that 'it's only forgetfulness, mum, and we all suffer from that as we get older, especially me".


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[Canadian Joanne]

Do you think it's at all possible that your mother was told, but due to denial, memory issues or a combination thereof, has forgotten?

 

[foolishfriend]

No I don't Joanne. I have been to every appointment with GP/Memory Clinic since mum has had problems with her memory. She definitely had never been told. The first time the word 'Alzheimers' was ever used was in this letter.

 

[Linbrusco]

It's no different here in New Zealand. Despite all my best efforts with various government & hospital department to change Mums address & phone numbers care of me, ocassionally they would send directly to Mum. Caused a great deal of upset. Thankfully Mum would forget just hours later.
to be informed of a medical condition by way of just a letter rather than first hand is insensitive to say the least.
I would lay a complaint.

 

[pippop1]

My MIL once received a letter saying that she had a Council Tax exemption for "Severe Mental Impairment" (and lived alone). We'd applied for it on her behalf and asked them to correspond with us.

We took the letter from her and said it was of course a mistake and we would sort it out.

 

[LynneMcV]

It does sound like it was handled incorrectly.

When my husband was under the Memory Clinic he always received copies of the correspondence the sent to his GP after each 6 monthly appointment. Those letters only ever stated exactly what had been discussed at our most recent meeting, so nothing came as a surprise.