Hi I’m New here and just wanted to ask if anyone else feels awkward when your at the doctors etc and they ask the person you care for how they are doing, they reply fine no different from usual (denial) the doc then ask you how they are and you want to be honest and say getting worse but can’t as you feel it’s either a betrayal or not worth causing the upset, yet need to somehow explain that you need to be with them at every appointment or they get it all mixed up?
What do you say when asked how they are doing
- Thread starter Elliott's mum
- Start date
Hi and welcome to Talking Point.
I understand how you feel about that. When we had appointments at the memory clinic I always wrote down my thoughts/questions/comments/concerns and handed them in for the consultant a day or so before the appointment. That way she had the full story and didn't have to rely on my husband's answers and I didn't have to say things in front of him. That approach might work for you.
I understand how you feel about that. When we had appointments at the memory clinic I always wrote down my thoughts/questions/comments/concerns and handed them in for the consultant a day or so before the appointment. That way she had the full story and didn't have to rely on my husband's answers and I didn't have to say things in front of him. That approach might work for you.
Hi yes that is a great idea, but this is at all those other appointments too, like routine checks with the gp, and mums under a urologist, I just hate it when they ask me how her memory is, I can see it’s getting worse but don’t want to keep rubbing her nose it in so to speak, as she’s so in denial and it just causes friction.
Hi Elliot's mum, welcome to TP. 
To answer your query - I do so truthfully. I'd hate myself if I didn't give a true picture and then forfeited appropriate advice/assistance/medication/etc due to trying to be tactful.
Admittedly my dad's quite fine when I do this and at times had said to the doctor when asked 'oh you better ask her', but even if he didn't, I would still be truthful with the likelihood that any upset would be forgotten by the next day.
To answer your query - I do so truthfully. I'd hate myself if I didn't give a true picture and then forfeited appropriate advice/assistance/medication/etc due to trying to be tactful.
Admittedly my dad's quite fine when I do this and at times had said to the doctor when asked 'oh you better ask her', but even if he didn't, I would still be truthful with the likelihood that any upset would be forgotten by the next day.
I would go with Izzy's suggestion of a note for all appointments. Perhaps a note you can update as necessary? Would it be possible to make an appointment with the various medical people simply to explain the situation, and point out how your mother would simply be denial? You can offer to email them information prior to any appointments. I realize it would be work to set up but then it should go more smoothly.
What I used to do at appointments was to sit slightly behind my mother and nod or shake my head as my mother responded.
What I used to do at appointments was to sit slightly behind my mother and nod or shake my head as my mother responded.
My wife will always say she's fine, when she isn't. In my wife's case it's because she simply doesn't remember anything being out of place. I mainly deal with it by sitting in and letting her give the true facts herself by prompting her memory "Didn't you say/do..." sort of thing it has worked up to now. In addition to that I don't worry if I prompt her to own up to something she wanted to avoid and get an evil look/comment as a result because she will forget it quickly and I'm working hard at developing a thick skin.
A typical example was when I took my wife to the dentist yesterday for her check up. For 2-3 days prior to the appointment my wife had gone on endlessly about a sharp edge to a tooth cutting her tongue. As soon as she was asked if she was having any problems she just said "No", so I prompted her by mentioning the sharp edge and she spoke up herself.
That same system works with the GP and the Consultant always sees me for 10mins after talking to my wife so we haven't had any real issues.
A typical example was when I took my wife to the dentist yesterday for her check up. For 2-3 days prior to the appointment my wife had gone on endlessly about a sharp edge to a tooth cutting her tongue. As soon as she was asked if she was having any problems she just said "No", so I prompted her by mentioning the sharp edge and she spoke up herself.
That same system works with the GP and the Consultant always sees me for 10mins after talking to my wife so we haven't had any real issues.
Hi - I kept Mum's dementia a secret for a few years, as both her GP and I thought that she would go in a downward spiral if she knew. Therefore, I preempted any medical visits and told the relevant health professionals that Mum was purposely being kept unaware of her diagnosis and asked that to be put clearly on her notes. I then asked for an email address so that I could send any pertinent information in advance or any appointments. At consultations I did exactly as @Canadian Joanne mentioned, and sat so that I could nod, raise eyebrows, shake head etc to consultant, out of Mum's line of vision. I regularly updated the GP by email, so that she was aware of any new developments/problems and told her that she could ring me at any time for any specific info she needed.
You are now the advocate for the one you care for, their mouthpiece. Therefore as such, there is a genuine responsibility here to communicate what you observe in respect of 'changes' to the doctor, regardless of what 'normality' is expressed by the one you care for. That often brief appointment with a GP is an opportunity to ensure that proper management will take place in respect of the progress of dementia, else risk problems in the near future. I would often pen my observations prior to the GP visit and hand it over during the consultation, so that she could fairly assess the state of affairs - albeit at that moment my mother's 'normal' behaviour belied all that was written down!
If my husband is seeing a new doctor (which hasn't happened for a while) when he makes the usual reply that he is fine, I will 'sort of ' agree with him and say something like "Well, we have had a few minor issues but the rivastigamine patches seem to be helping a bit" and that usually cues them into the Alzheimer's.
Mean
If that doesn't work, I will jump in and say that I am going to have my say now and tell them what is necessary. My husband is used to it now and would be surprised if I didn't say anything. Early into his diagnosis, he would get very stroppy if I said something but now he accepts that's how things are going to be.
I believe that if you are there as a carer you have a responsibility to make sure that there is a proper medical outcome from a visit to the doctor. It's a complete waste of everyone's time and not in the best interests of the patient.
By all means, try sending information ahead of your visit but if that doesn't work, say what you need to.
Mean
If that doesn't work, I will jump in and say that I am going to have my say now and tell them what is necessary. My husband is used to it now and would be surprised if I didn't say anything. Early into his diagnosis, he would get very stroppy if I said something but now he accepts that's how things are going to be.
I believe that if you are there as a carer you have a responsibility to make sure that there is a proper medical outcome from a visit to the doctor. It's a complete waste of everyone's time and not in the best interests of the patient.
By all means, try sending information ahead of your visit but if that doesn't work, say what you need to.
My husband always answered" Fine" to any questions, bu we overcame that by writing a note to the doctor a day or two beforehand beforehand and putting everything down for him to see how it really is.
My problem is getting him to shower and change his clothes, so we were both very amused when the doctor asked him to describe his shower procedure and hubby did an almost perfect description except he hadn't done any of it and denied point blank that he only sat on a stool with a dry flannel to "bath" and hadn't got up at 5 in the morning so I wouldn't catch him out!
Laughter aside, I am finding it so difficult to deal with the devious behaviour. Short of hiding every sweet thing in the place I cannot stop him helping himself whenever he feels like it and then not eating his dinner. He is like a child hunting out the presents before Christmas morning and is happily deaf when I ask him anything that he feels may give him away.
Is this a characteristic of Pick's?
My problem is getting him to shower and change his clothes, so we were both very amused when the doctor asked him to describe his shower procedure and hubby did an almost perfect description except he hadn't done any of it and denied point blank that he only sat on a stool with a dry flannel to "bath" and hadn't got up at 5 in the morning so I wouldn't catch him out!
Laughter aside, I am finding it so difficult to deal with the devious behaviour. Short of hiding every sweet thing in the place I cannot stop him helping himself whenever he feels like it and then not eating his dinner. He is like a child hunting out the presents before Christmas morning and is happily deaf when I ask him anything that he feels may give him away.
Is this a characteristic of Pick's?
I found my most important role in Doctors appointments especially locums or hospital doctors who didn't know Mum, was to translate the questions the doctors were asking so that Mum would give a useful answer.
A key problem with Mum was timeline, so when asked for symptom A she would say yes but be referring to anything from 6 months to 60 years before so, it was my job to get her to focus on what happened yesterday, or at least establish some time frame. In the early days when I was less experienced Mum did actually end up going for exploratory surgery for stomach pains which she described and appeared to be suffering pain from, but the warped time line meant she was actually remembering pain from 40 years before as if it was current.
It is a hard learning curve, but be honest even if it's painful to say the truth, and push whoever you are caring for to give the Dr's a fighting chance at a correct diagnosis. I found the GP's quickly learned to 'pretend' that I was the next patient so she would wait outside, or phone me after the consultation. Hospital appointments were always more complex, the sheer number of people involved in hospital and remote multilayered nature of many treatments means you really have to stand up to keep things on track.
A key problem with Mum was timeline, so when asked for symptom A she would say yes but be referring to anything from 6 months to 60 years before so, it was my job to get her to focus on what happened yesterday, or at least establish some time frame. In the early days when I was less experienced Mum did actually end up going for exploratory surgery for stomach pains which she described and appeared to be suffering pain from, but the warped time line meant she was actually remembering pain from 40 years before as if it was current.
It is a hard learning curve, but be honest even if it's painful to say the truth, and push whoever you are caring for to give the Dr's a fighting chance at a correct diagnosis. I found the GP's quickly learned to 'pretend' that I was the next patient so she would wait outside, or phone me after the consultation. Hospital appointments were always more complex, the sheer number of people involved in hospital and remote multilayered nature of many treatments means you really have to stand up to keep things on track.
Interesting - my husband reacts like many of you have said - says he is fine and on occassion says he thinks his memory is getting better! Then gets annoyed if I 'tell it like it is' - in some way feeling that if they (the medics) know what is actually going on it will somehow make things worse.
Anyway, I use a combination of approaches. Where possible and appropriate, I have written before appointments to explain as concisely as possible what is actually happening at the moment. In other instances, GP, Dentist, Pharmacy etc I have dropped in and make sure that they have on record that my OH has dementia and then change the contact details to they send me the appointment reminders etc.
My OH is actually quite good at telling people himself that he has dementia, but on the otherhand, he has done little if anything to understand it and what it means although he should have some idea as he lived through it with his mom. This does not seem to have helped him understand his own experience with dementia tho' and while on one hand he has talked about dying (gave himself 12 months) on the other he will talk about his memory getting better when in fact it is getting considrably worse. The topsyturvy world of dementia.
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Anyway, I use a combination of approaches. Where possible and appropriate, I have written before appointments to explain as concisely as possible what is actually happening at the moment. In other instances, GP, Dentist, Pharmacy etc I have dropped in and make sure that they have on record that my OH has dementia and then change the contact details to they send me the appointment reminders etc.
My OH is actually quite good at telling people himself that he has dementia, but on the otherhand, he has done little if anything to understand it and what it means although he should have some idea as he lived through it with his mom. This does not seem to have helped him understand his own experience with dementia tho' and while on one hand he has talked about dying (gave himself 12 months) on the other he will talk about his memory getting better when in fact it is getting considrably worse. The topsyturvy world of dementia.
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What I don’t understand is why the healthcare professional, doctor memory nurse whatever don’t understand the difficulty and arrange to speak to you separately. I recently took my wife to the memory clinic and as usual she says everything is fine, claims she does all the cooking etc., I have to try to correct this and instead of accepting what I said my wife went absolutely ballistic and now any mention of doctors creates real anger and refusal to comply. This is really frustrating.
Hi and welcome,
We now have a generic letter stating what we the carer knows about mum dementia, we give the letter before the appointment, which asks if the gp, consultant, dentist, opticians anyone needs any medical details to either telephone before hand or read the letter, so when the mum visits these appointments is doesn't cause her any distress or ourselves, this has worked perfect and mum always now just sees these visits as routine days out instead of endless questions which for a person with dementia only causes more distress and confusion, leaving you to hold the can. If you can read the book by Oliver James a Contented Dementia, it gives lots of practical advice. Three golden rules, Don't Ask the DM direct questions, never contradict, and always listen to what they are saying and expressing, they we lead the way. Best of luck.
The only thing I am sure of in Dementia, is that there is no pathway. forget the good and bad days, forget any sort of linear pattern to non existent stages, it almost never behaves in a predictable way not only from one person to another, but from one moment to the next.
I feel that it is human nature to declare yourself as coping and 'fine' and to brush anything you can under the carpet, with or without dementia. it's the roll of the carer often a person who has to maintain more than one relationship style with the person to grab the reins and try to keep somewhere near safe space, enjoying the near misses and the smooth bits in their own ways is the only survival tip I can give you.
Dealing with outside agencies be it medical or others requires an individual moment by moment approach and you will sometimes get it wrong! don't worry, you will also sometimes get it right and all you have to do is your best to avoid harm.
I feel that it is human nature to declare yourself as coping and 'fine' and to brush anything you can under the carpet, with or without dementia. it's the roll of the carer often a person who has to maintain more than one relationship style with the person to grab the reins and try to keep somewhere near safe space, enjoying the near misses and the smooth bits in their own ways is the only survival tip I can give you.
Dealing with outside agencies be it medical or others requires an individual moment by moment approach and you will sometimes get it wrong! don't worry, you will also sometimes get it right and all you have to do is your best to avoid harm.
I find it extremely difficult to 'say it like it is' in front of my husband. He does not actually have a diagnosis but has been seen at memory clinic four times. Every time we are seen together and every time they say the results of the tests they do are within normal limits. I have given them written information about all his difficulties which are mostly memory related but as yet they don't diagnose. They don't appear to think that not remembering to take his multiple medication or even know what he takes for what condition is important. He has other memory problems but in his mind these are only did to his age, he's 82. I have talked very frankly to our GP who is as helpful as he can be without telling him that I've discussed it with him. I go to all his medical appointments otherwise I never get the right story of what's been said. I'm fact he actually likes me to go with him. He's now just refused to have a Spect scan so I'm waiting to hear if the memory clinic want to see him again, he doesn't want to go! I agree with many people who suggest putting concerns in writing and giving it to the medical people is a really helpful way to make sure they know the true situation. I'm not particularly hopeful of getting a diagnosis but I know there is something wrong, just wish they could see it.
My mam is failing fast she was only diagnosed in January this year after a bang on the head her reasoning and understanding seems to be going very quickly ,
Hi thankyou for all your kind words and help, think I just worried that at times I get it wrong but with the best of intentions seems like we can’t win for loosing sometimes! And it’s made me realise how it’s not just my mum who’s in denial but maybe I can be too, as sometimes she’s fine and then other times it’s quite clear that she can’t remember things. And at points I even question my own sanity and her diagnosis. That’s why it’s great being on here to read and share experiences helps immensely.
It is hard to give the true picture to the GP. Especially when the doc is hurrying the appointment along, they've no idea about the struggle you've already had to even get to the appointment, the difficulty of having to sit in a waiting room etc. My dad always wrote a note to the doc to read before the appointment. However, when at an appointment, Dad would speak for Mum and 'protect' her which, at least in the early stages, masked problems.
