Don't know whether to laugh or be annoyed!

Lynnpin

Registered User
Aug 11, 2011
32
0
Tyneside
Today my mother (with AD) received a questionnaire to complete regarding her views on the service she has received from the NHS Trust. What?!

How on earth to they actually expect someone with AD to complete it? Are they having a laugh? I don't know if anyone else has ever received one of these but my initial thoughts were to return it and ask what service? It is 15 months since we last saw the consultant who said she was passing us on to her care team who would take over from her and keep a check on her. I'm still waiting. What is the normal follow on care like from your experience?
 

kingmidas1962

Registered User
Jun 10, 2012
3,534
0
South Gloucs
I'm tempted to say do exactly that - return it with your honest views and also the blindingly obvious point that the person with AZ is not actually in a position to fill the flipping thing in anyway!

Well, they did ask....
 

Rosie Webros

Registered User
May 8, 2013
181
0
Oh yes I know exactly what you mean. Dad had one as well. He was diagnosed six years ago. We did have a laugh about it, if not you would have to cry wouldn't you? I am always amazed at how little the 'professionals' know about Dementia. My dad was in hospital over Christmas and it was awful how little they knew, even on the Dementia Ward. He was so scared, never been away from home before and they thought he was being 'diffficult'. Because dad didn't understand what was happening, they wrote things down on paper and just shoved the paper in his face - dad hasn't been able to read for five years.

A lot of awareness of this awful disease is still needed I think.

Take care, Rosie xx
 

at wits end

Registered User
Nov 9, 2012
752
0
East Anglia
When i completed the forms for grans house sale i attached a letter because i was exasperated by it all
i wrote ' my gran has dementia, she doesn't remember what she had for lunch let alone when the boiler was last serviced!' i didn't get a reply!

Sent from my GT-I8160 using Talking Point mobile app
 

Lynnpin

Registered User
Aug 11, 2011
32
0
Tyneside
I agree with you both. I am tempted to send it back with those kind of comments. It would seem it is not just my local trust who sends these questionnaires out then. What a farce, yes they obviously don't seem to grasp the implications of AD.

If I do send the questionnaire back I'm afraid I don't really have anything nice to say about the service we have received. It's just over two years since my mother was officially diagnosed but I felt rather like they dropped a bomb on us and left us to get on with it.
 

SallyPotter

Registered User
May 19, 2013
161
0
Gloucestershire
I had a 'best interest' meeting a month ago, doctors and SS et all looked very scared when I said that 1 in 8 people over 80 will develop dementia!
With regards to the 'lovely' questionnaire I'm sure there's one waiting in my parents letterbox, am half tempted to hand it over to my parents, to fill in as 'they see fit' could the hospital get a drawing, a poo or a 20 yr old breakdown of the stockmarket? hmmmmmm!
Totally agree Lynnpin, 2 yrs ago I was bimbleing about in my own flaky way, then a bomb was dropped without any offer of help and assistance as to how to cope to me, suddenly they were declared to be 'without capacity' and all free will removed from them, There's no offer of emotional assistance to those who are left, as the suffers are still alive its only through sites like this and friends that I have discovered that what I'm suffering is grief. A prolonged grief that the only way can be beaten is by being so bloody pragmatic and rationalizing about it all.
Sure, a hard lesson to learn and I will certainly never be the same again (neither will my folks)
Lots of love and virtual hugs xxxx
 
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garnuft

Registered User
Sep 7, 2012
6,585
0
I get them on behalf of my son, mam has them too.
I think we're supposed to fill them in on their behalf. They take these surveys into account when they make decisions about how to allocate money.

I always wonder if it carries any weight, like the make-up ads, when you look at the small print at the bottom of the screen it says 'out of 132 people, 86 thought we weren't too bad'.

Lies, more lies and damn statistics.*
It's the stuff our local Authorities feed on.
 
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Madaleelee

Registered User
Apr 6, 2013
9
0
Suffolk
Follow up care??

What follow up care? After diagnosis my Dad was seen by a memory clinic nurse twice. Once they had established he was OK on his meds ( he was allergic to the first 2 meds and was considered to be OK on the third within a day or so of it being prescribed!) he was the discharged from the memory clinic to the GP's care. Basically he will see no-one else about his Alzheimers unless he starts to have psychological problems in which case we have to re-refer him. I know there is nothing that they can do to stop his decline other than the meds he is now on but I would have thought he should be seen at least annually to monitor him?? Clearly I expect to much.

My Mum who has VasD is seen 6 monthly as she does have other problems but the clinic keep sending the appointment letters direct to her and so it is only good fortune that we attend any of them if I just happen to see the letters lying around. I have asked numerous times for copy letters to be sent to me but it never happens
 

Lynnpin

Registered User
Aug 11, 2011
32
0
Tyneside
Thanks for all your replies and kind words. So it would appear that there is no "after care" then. I thought we were missing out on something but obviously not. I'm not too bothered to be honest as I really don't want anyone coming and going without me thinking it's necessary and it's not as yet, though obviously there will come a time.

Yes, I would have thought that at least an annual check would have been the norm.
 

Scarlett123

Registered User
Apr 30, 2013
3,802
0
Essex
If you didn't laugh you'd cry. :eek: This reminds me of the Richard Littlejohn articles entitled "You couldn't make it up". After John was diagnosed with MSA (the forerunner of AD), the consultant was firing questions at him, and John was doing what I call his Wanda-The-Fish impression - opening and closing his mouth without saying anything.

So I answered the questions and the consultant said "you really should let him speak for himself", to which I replied "and, with the greatest possible respect, you really shouldn't expect someone with a Dementia-based illness, which you yourself diagnosed, to answer questions coherently, should you." :D
 

stillcaring

Registered User
Sep 4, 2011
215
0
My mum had a letter just the same. Sadly she is aware enough to read it and be very upset that someone is suggesting she might have dementia. I phoned the number on the letter and got a very sincere apology from a secretary and the promise it wouldn't happen again - with hindsight I kind of wish I'd insisted on speaking to someone higher up in the organisation, but I was too upset and angry to be thinking straight.