Most people gain some understanding of dementia /Alzheimer's through common sense ,media articles ,etc , but as is so often said on TP every one an be different
Medical professionals,( consultants ,doctors , nurses, social workers )should be aware when dealing directly with those suffering that the responses they often get are very different than those experienced by their carers
I know from my own previous experience how enormously frustrating it is to sit and hear them giving answers to questions. and being unable to correct the wrong impressions that are accepted
Recently I copied several of the frustrating experiences that members posted about the 'professionals 'and their dealings with dementia patients
It makes very sad, frustrating , and enlightening reading
It is very lengthy , but I believe it should be compulsory reading by all of those involved with dementia
None of the posts have names attached and I think they are reasonably anonymous ( particularly as the forum in which thy originally came from can be viewed on the open web )
It is my intention to send a copy to my MP and possibly my doctors practice
No apologies for the length , it reveals the honest opinions of those who are at the sharp end of dementia care
jimbo
Posted by people who have the onerous duty of care to those suffering with Dementia /Alzheimer’s
“I've been reading other posts and after an hour unscrambling yet another mistake someone else has made, I can't help thinking how much easier life would be if the professionals understood dementia. I mean really understand, not just think they understand.
Such as the GP receptionist who phoned my mum to tell her they've changed her appointment time, expecting her to remember to tell me (despite me requesting that all contact with mum is via me) resulting in me taking a day off work for nothing. The pharmacist who delivers mums medication to her rather than leave it for me to collect (thought we'd have to have her stomach pumped after that one!) and even the GP who spent a well intentioned ten minutes explaining something carefully to mum and clearly didn't realise or understand that as we walked away from the surgery, she was saying "who the hell was that?" and "what was he on about?".
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“ If only people realise that when there's a problem or difficulty, that problem is now not in four months time when they decide to visit (unannounced) to sort it out and that every day things change. Even the memory clinic has said to me that they'll review mum in 12 months time "unless she needs further services". I've asked how they'd know if they don't see her other than once a year and they've looked at me as if I'm mad! She's nearly 88 and deteriorating rapidly so they've made an appointment for next autumn!
My mum has me to care for her, but how many people have no one to sort this kind of thing out “
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“They all seem blinkered and can't understand its a real person with dementia.
My mum, 92, had a biopsy for breast cancer in December, Dr said best to find out what lump was...in January, I was told results were negative, then a week later, that was a mistake and they were positive. Then had a rediculous conversation on her 'treatment' could involve hair loss! Sadly she died 10 days later from a chest infection. I didn't need any of that, but I was told the tumour would get larger and break through the skin and be very unpleasant and I felt uncaring if I didn't do something! Fortunately mum didn't know any of this, it just added to all my stress. “
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“”There is a rapidly growing dint in my office wall where I continually bang my head in frustration with these so called professionals. I just wish that with all this extra funding that is going into dementia that some of it was used to train them.
Everyone of them should be made to attend a course run by those of us who deal with it on a day to day basis, sod the jargon and the theories, learn the practical from those of us who have dealt with it, who understand it's not just a memory thing, that it is so much more than that.
I swear if I hear 'quality of life' once more this week I will combust. Oh and another throw away comment that people on end of life can improve is another one that really got me the other week. This is from a woman who had not met my mother before, spoke to her like she was a toddler, or a pet, and then expected me to accept what she was saying, after she didn't have the courtesy to actually listen to me.
It's all well and good knowing the theory, but every dementia sufferer is different, they do not fit into boxes and I am tired of the various agencies not getting it. “
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“ Prior to Mil moving in I spent hours trying to convince various hospital departments/Mils GP that it wouldn't matter if Mil swore on a stack of bibles that she would turn up to the next appointment - within a day at most, she would have completely forgotten and unless they informed US that she had an appointment, unless they sent letters to us or phoned us so we knew, there wasn't a cat in hells chance that she would attend. We - by chance - found several letters saying she was being removed from this or that Consultants list for 'failure to attend' her previous appointment(s) and we would have to go through the same argument over and over again, trying to make them understand.”
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“ At various appointments, even now, we get consultants/doctors/nurses persisting in asking Mil about what medication she is on, or if she has this or that illness, despite me having given in a letter with the correct info, and them then recording Mils usually totally wrong answers in her notes - putting me in the position of having to correct her, which is so horrible for her. Worst was one eye consultant who was clearly most annoyed at my interfering, who after I finally drew her attention to the prescription list that gave the correct info, blanked me and turned to Mil to tell her that she felt Mil was on 'far too many medications' and suggested she consult her GP about stopping several - which Mil 'remembered' for several days as being told she could stop taking all her tablets “
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“I wish these people would just use a bit of common sense - how hard is it for them to understand that she has severe memory problems, caused by dementia and she cannot remember what day it is or where she even lives most of the time, let alone remember what meds she is on, what illnesses she has or specific instructions or appointments “
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“ Its ridiculous, they should all start with the premise Dementia = memory loss short term. Like most carers I write things on A4 paper in black felt tip pen, big and bold. Sometimes I think I should do the same for all professionals we come in contact with!
All these professionals should spend a day and a night (or several nights) as a carer for someone with dementia and learn what it is like at first hand. Each one is not just a set of case notes and a NHS number but a person with difficulties who may or may not remember anything from one moment to another, who is scared, who has hallucinations, who cannot reason, who has difficulties with communication and may not even realise, know or acknowledge that they have dementia!
Most of these professionals see people in an office for up to 20 minutes only during the day, they do not see the rest of the day, the sundowning and the disturbed nights and sometimes frightening behaviours.
Our Adult Mental Health Consultant has been very good however, I go along to appointments to support my Mum with Dad. She talks to Dad and asks standard questions, but mainly directs questions to us. I usually hand in an updated report so she can see how things have changed and it saves us having to talk about him with him there. Then she rings from time to time to ask how things are going.”
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- “ Absolutely!...its got nothing to do with them needing extra training. Most of it is common sense! If us unpaid carers can see that why cant they???? Youd be amazed at the medical professionals that are on my hall of shame!...a district nurse come to help my dad with his diabetes..."what am doing here?..he looks ok!"....a clinic nurse that says "all you have to do is to remember to follow this plan and you ll be fine!"...a dr that asks my dad . questions that he should know would be questionable to ask apatient with dementia..then look suprised when we made eyes at him in at my dads response.....sister in the community says "what does she do with him in the day then?."when we needed their help...memory clinic nurse when i mentioned burning with cooking or hot water..said "thats what you have to allow them to do to keep independent..she had to allow her husband to touch hot with hand to keep him independent.".
“When having the dr saying "its the ongoing brain issues..nothing we can do" not even listen...
Social services duty officer when i said things change all the time.."well we cant possibly run a system or service that can deal with the ever changing"
These are my name and shames..i have taken all these comments to as high as i can get...
There are good professionals out there..but one without a clue or that cant be bothered to even read the web for info..is one too many in my book!!!!
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“I always say My mum's GPs are brilliant, which they are. They do home visits with pleasure, not grudgingly. However, there is one GP who is less dementia aware and has obviously been trained to 'speak directly to the patient' and not to talk over their head. I know this is good practice, and respectful, just not always appropriate for a patient with advanced dementia.
He can do "Hello X, how are you today? My name is Dr. Y. I've come to check your ...... is that OK? Thank you. I won't keep you long, I know you're ready for your lunch."
So far so good. This week he had been called in by the carers because Ma has another UTI, following on from the one a month ago where she was bed bound for 10 days and 'off her legs'. She also has thrush because of the last course of heavy duty ABs.
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“The GP asks my mum whether her bladder feels sore, whether she needs to wee more than usual? Does it hurt when she passes water? [What's that? some sort of lake phobia? ]. Then he asks her whether she's had a bowel motion today and was it uncomfortable? All the time ignoring the eye signals and silently mouthed answers from the carer.
He did provide a prescription but asked for a morning urine sample even though the carers said getting a sample is nigh on impossible. The carers had her sat on the commode for an hour the next day without result. That afternoon it was Niagara on the floor and poonami in the commode, but still no useable urine sample. These medical people who say "Oh well, try your best" have presumably never had to get a sample in these circumstances.
My mum has NO awareness of her bladder and bowels. She can't squeeze a sample out to order and she doesn't know she is 'going' even while it is happening. Therefore any patient-centred discussion of the issue is pointless and will only embarrass her. For pity's sake, she was in the kitchen having her lunch when a strange man bounced in and started asking her questions about her toilet habits and the state of her downstairs lady parts. “”
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“ Yes I too took time out of work to attend an appt (today) with MIL only to find it had been cancelled two days ago. We are also struggling because MIL is realistically about 3/4 years in to Alzheimers but has not yet seen a consultant (initial referral to Memory Clinic on 16th Dec 2014, assessment 8th Jan, head CT 24th Feb then we can see a consultant!) as my FIL covered up for her (he died at start of Jan this year) OH and me are now trying our best but GP doesn't want to get involved until she has seen a consultant. MIL has another UTI, due to issues with cleanliness I think but no one wants to know. Just throwing drugs at her. The carers have been coming 3 times a day since Jan but it isn't working very well and they are not quick enough at picking up changes in drugs. “
Reading all the posts on this thread and throughout this site is supportive but saddening that there are all these vulnerable people being supported by an army of family and friends many at breaking point from exhaustion and frustration with the system.
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“”I think the problem with so many professionals is that they cannot apparently grasp that people with dementia CANNOT remember anything. They think that if something is written down, that will be OK. They cannot grasp that the person will not remember to look at the piece of paper, and even if they do, they will forget whatever it said so quickly.
I don't know about anybody else, but I would love to know what the training they get (if any) consists of. I wouldn't mind betting it's mostly about quality of life, or the person"s human rights, and all sorts of other PC stuff that takes very little account of the practical realities. And I wouldn't mind betting that a lot of this 'training' is provided by other people who have 'been on a course' and are equally clueless about the realities. “
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“ I have to add in macular degeneration as well with MIL so writing it down or sending a letter to her is of no use whatsoever. My MIL is so isolated and all the professionals seem to want to do is pass her on down the line (sorry pathway). The PC stuff is so frustrating. In order to care about her independence her quality of life is plummeting. I think the NHS is so overwhelmed all they seem to do is pay management consultants to come up with jargon / new logos / new practices without actually delivering any sort of coherent service to the patients and their carer's.
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“I think the biggest fail I have experienced of the health professionals and lack of dementia awareness was when Mum was admitted to hospital for bowel surgery for early stage cancer. This was at the beginning of her Alzheimers, but all her medical records were noted and had me down as her POA & next of kin.
Mum had had the pathology results back, and her surgeon and registrar went to see her to tell her. This was at about 7pm, and I had not long left hospital to go home.
The good news was that her cancer was caught very early, had not spread to her lymph nodes, so no further treatment was necessary, but her CT scan did show enlarged lymph nodes in her spleen from her leukemia ( which is stable).
Mum got the nurse to place a call to me, to tell me her good news, but the nurse was busy so had left the room to attend to another patient.
The message from Mum was " I saw the doctor who did my surgery and she said my chest was clear and I don't need treatment" and I'm going " Oh thats great Mum "
You can imagine, how confused I was, and I spent a frantic hour trying to get hold of Mums surgeon to get the real story.
The whole experience rattled me, and I was left wondering what if it had been bad news
It's also taken best part of two years to get Mums phone & address details changed to me with all the authorities.
Even the lady from Alzheimers Activity group that picks Mum up expects her to remember things and to pass messages on to me
Mums GP is good, but he still expects Mum to understand how to apply a certain cream, or when to take a tablet. “
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“ I just so agree with everything. I was annoyed recently when the care home, where OH has been recently for two weeks respite, forwarded a letter addressed to him from his psychiatrist telling him of a change of appt. Honestly! If they can't get it right, I give up! I will certainly give him a bit of plain speaking when the appt comes round! “
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“What gets me is.....the media keep saying Alzheimers awareness , there is help out there! Where????? Like you, we have had nothing at all helpful from the so called professionals. All our SW keeps saying is "your dad is a big strong man for his age, he is really healthy and looks so well!" THAT MAY BE TRUE BUT HE HAS ALZHEIMERS... you would think she is supposed to be a qualified professional, that she can look beyond the shell and realise its his mind that is unwell and unhealthy! If we can see that why not her? And if I've told the council once to send all correspondence to me (they have the LPA) I've told them hundreds of times. I've emailed, written, telephoned, been to the office and STILL they send letters to dad! Even though he is now in a residential care home! Give me strength! and patience! AAAAAAAAARRRRRGGGGGHHHHH. “
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“My mum's not as far down the road as some, but I have mixed experiences of dealing with 'professionals' who are alleged to know about dementia/Alzheimer’s. Most of the staff at her GP surgery are au fait with it all, speak to her, but clarify things with me as well, although one receptionist can be very short when mum fumbles her name, reason for the appt etc. Since her initial diagnosis in September 2013 we've not been back to the memory clinic (the onus is now on us to request a review etc., and we don't really know if we need one, if that makes sense?). I've had battles with the council, utility providers, the bank, etc., that are making me greyer, quicker! However, at a recent hospital admission (really bad dizzy spells) the nurses, auxillaries and especially the doctor were stunning in the manner - clocked very quickly what I meant when I said she had STM problems, early dementia, etc., altered their way of speaking to her subtly, not childish but simplified and often repeated, and spoke to us as a group, rather than mum separated from us children. Sadly, they are unusual in professional staff, but it made the experience much better for us all! “
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“next time they say he's a big strong man, say yes, you should see him when he gets violent/mad/angry or some such. Then see what they say!
OH isn't big, but he is strong ( couple is episodes recently to prove it) but he is always smartly dressed. The number of people who comment is amazing. Do they really think he does it all himself including choosing the clothes? Honestly! “
