Why are GP's NOT educated when it comes to Dementia?

[Toopie28]

I know this has been a frustration of many but I still can't wrap my head around this.

If your LO has been diagnosed with dementia by an expert in the field, why oh why oh why do the GP's still question you (POA) when you tell them they have a urine infection?

My poor Ma has had this reoccurring infection for at least 6 weeks so far.
All of you know how it makes them extra agitated and confused. And stresses out the carer even more!
Rant to follow -
I've taken a urine sample 3 times to the local pharmacy. Each time they will prescribe an antibiotic and tell me to take another one AFTER the dose is complete and bring to them and if still an infection, they must send to doctors. Ok, fine.
Easy. Done. Thank you!

Last one didn't clear up so sent to the doctors.
Doctor wants to "see" her. Ok, fine. Organise my sis-in-law to take her (I'm overseas now)
Doctor will not speak to SIL even though she in on the approved list.
Doctor asks Ma - how are you feeling? Do you go to the bathroom ok?
Ma, yes I'm fine.
I call in as SIL is telling me what's going on - doc won't speak to me but will call back.
She calls back and says - you mother says she feels fine.
My mother has dementia. So let's forget about the language barrier and hostess mode and let's go straight to the dementia.
I'm aware that she has dementia but she "seemed" fine. How do you know she has a urine infection. Has she told you?
Because she's off - I see her and speak to her every day. She's off. And a PWD cannot express or understand these symptoms.
Yes, I'm aware of dementia but she "seemed" fine. (Is this before or after she spoke about me, her older sister????)
May I suggest you research dementia on the Dementia Support Forum - I can send you a link

That was 2 weeks ago and after they tested the urine we brought in - guess what??

So now, round 5 with these uneducated medical "professionals".

Again, this morning. The same convo as above.

And yes, I am changing doctors - which I will do after Christmas. But soooooo frustrating!!!!

 

[canary]

I dont think anyone understands dementia better than people who have been the main carer for someone with dementia.
Even if you have been trained in it, it isnt until you have seen it/lived with it first hand that you really understand

 

[jennifer1967]

the doctor questioned me about why i gave my husband anti-bios and steroids the other week. he has this rescue meds as has COPD. he wanted to know if i was told to or did it myself. half and half but it was the accusary tone that got me. i was told before. he then asked if he was allowed to speak to me. he does have my husbands permission to speak to me. look at the notes!!

 

[MaNaAk]

I know this has been a frustration of many but I still can't wrap my head around this.

If your LO has been diagnosed with dementia by an expert in the field, why oh why oh why do the GP's still question you (POA) when you tell them they have a urine infection?

My poor Ma has had this reoccurring infection for at least 6 weeks so far.
All of you know how it makes them extra agitated and confused. And stresses out the carer even more!
Rant to follow -
I've taken a urine sample 3 times to the local pharmacy. Each time they will prescribe an antibiotic and tell me to take another one AFTER the dose is complete and bring to them and if still an infection, they must send to doctors. Ok, fine.
Easy. Done. Thank you!

Last one didn't clear up so sent to the doctors.
Doctor wants to "see" her. Ok, fine. Organise my sis-in-law to take her (I'm overseas now)
Doctor will not speak to SIL even though she in on the approved list.
Doctor asks Ma - how are you feeling? Do you go to the bathroom ok?
Ma, yes I'm fine.
I call in as SIL is telling me what's going on - doc won't speak to me but will call back.
She calls back and says - you mother says she feels fine.
My mother has dementia. So let's forget about the language barrier and hostess mode and let's go straight to the dementia.
I'm aware that she has dementia but she "seemed" fine. How do you know she has a urine infection. Has she told you?
Because she's off - I see her and speak to her every day. She's off. And a PWD cannot express or understand these symptoms.
Yes, I'm aware of dementia but she "seemed" fine. (Is this before or after she spoke about me, her older sister????)
May I suggest you research dementia on the Dementia Support Forum - I can send you a link

That was 2 weeks ago and after they tested the urine we brought in - guess what??

So now, round 5 with these uneducated medical "professionals".

Again, this morning. The same convo as above.

And yes, I am changing doctors - which I will do after Christmas. But soooooo frustrating!!!!

Dad and I were okay with the GP eventually but in 2015 when I became very concerned about dad I had trouble him to the doctor. I couldn't get him to go the doctor because he said "it's old age". He did go for his other conditions (I didn't know how to deal with his dementia at this point) and after one appointment he came back and said he had a row with the doctor! At this point I decided to write a letter to the doctors and after it was delivered I worried about what would happen. However I didn't have to worry because they completely ignored it. Eventually I made an appointment for myself where I was able to talk about dad on the telephone.

He had a diabetic appointment coming up and the nurse was supposed to monitor dad. Dad had no idea of this but still put on the best host mode and he passed. As soon we got home he was back to talking about people who weren't there and so I made another appointment for myself and this time dad was given a memory test as if it was part of an appointment for his ears and only then did he get a referral!

MaNaAk

 

[Toopie28]

I dont think anyone understands dementia better than people who have been the main carer for someone with dementia.
Even if you have been trained in it, it isnt until you have seen it/lived with it first hand that you really understand

True but... if you are going to continue to say to me, I'm aware she has dementia and I know what it means, don't you think you should?
Sorry - I'm just ranting - I'm very sleep deprived and now need to get up at 1am to call idiot doctor to have another conversation with them

 

[Toopie28]

the doctor questioned me about why i gave my husband anti-bios and steroids the other week. he has this rescue meds as has COPD. he wanted to know if i was told to or did it myself. half and half but it was the accusary tone that got me. i was told before. he then asked if he was allowed to speak to me. he does have my husbands permission to speak to me. look at the notes!!

THAT!! Check the notes! And yes, the tone.
"I realise you have camera's but how do you know..."

 

[sdmhred]

Grrr the patronising speaking to a carer tone drives me mad 😡😡 I Don’t think some realise they have also spoken to me in a professional capacity - the difference is very stark!

and yes ….as a carer I have wiped every poo for the past 2 years so yes I know every nuance of her body and mind and yes something is up!

 

[Lawson58]

All I can say is that we have been lucky. GP trusts me when I say something, even if OH disagrees. GP has seen OH in one of his blank moments and if it is a phone consult, GP asks first if we are on speaker phone so that he knows I am there to answer if OH can’t.

AND I THINK TRUST BETWEEN PATIENT, GP AND FAMILY IS VITAL.

 

[jennifer1967]

i think the problem is that we never get the same doctor. there have been so many changes that we dont know whose who. not seen our gp since she was in the job.

 

[MaNaAk]

Also at the time when dad was having falls a doctor examined dad's legs and asked me to feel them before asking if I thought they were normal? I said 'no'! I was like you, @Toopie28 and very sleep deprived but I felt a bit guilty when the doctor asked this question because I felt I should have noticed the issue with his legs. However I am not doctor and at the time I was an exhausted who was trying her best. I've also just remembered that I wasn't well myself that week but I had to call the ambulance several times for dad.

MaNaAk

 

[Chizz]

Yes it's all v frustrating - sometimes "they" are happy to speak with me and some are not.
So yesterday I received a tele call from the GP's surgery - woman says is that Mr Chizz & I say yes.
Can I speak with your wife please? Yes, of course you can, but what's it about?
Well I'll tell your wife.
Have you read the notes?
Yes, it says she's bedbound so I want to know if she wants the anti-shingles jab, We can organise a home visit.
Yes please
Well I have to have her to say so.
Have you read the notes?
What do you mean?
You do realise that she had advanced Alzheimer's. So, if you want to, you can speak to her, but please don't expect her to understand what you say, if she hears it, as she doesn't aways hold the phone correctly, and please don't expect her to answer you.
Well, OK then, is next Thurs pm OK?
Yes please.

(This is only the recorded highlights!)

 

[Toopie28]

Also at the time when dad was having falls a doctor examined dad's legs and asked me to feel them before asking if I thought they were normal? I said 'no'! I was like you, @Toopie28 and very sleep deprived but I felt a bit guilty when the doctor asked this question because I felt I should have noticed the issue with his legs. However I am not doctor and at the time I was an exhausted who was trying her best. I've also just remembered that I wasn't well myself that week but I had to call the ambulance several times for dad.

MaNaAk

And that's it, isn't it.
We are trying our best and they have the audacity to have an attitude or tone.

I've been caring from afar for 3 years. No one helps. Just me. And last month the doctor called me to ask who should be the emergency contact.

Same one for the past 3 years... me! Then SIL
Yes, but when you're in America?
Again, still ME!
But what if she gets sick?
Same for the past 3 years. ME!
I'm the one that sees her, hears her, talks to her. I know when she's off. Me. Only me. SIL and carers just say, oh she's confused. But I know! That's why I'm the one that's always calling.
Oh, ok we'll put in notes😡😠🤬

Honestly, it shouldn't be allowed. We should deal with whomever diagnosed them and they can get frustrated with the uneducated GP's!

 

[Toopie28]

Yes it's all v frustrating - sometimes "they" are happy to speak with me and some are not.
So yesterday I received a tele call from the GP's surgery - woman says is that Mr Chizz & I say yes.
Can I speak with your wife please? Yes, of course you can, but what's it about?
Well I'll tell your wife.
Have you read the notes?
Yes, it says she's bedbound so I want to know if she wants the anti-shingles jab, We can organise a home visit.
Yes please
Well I have to have her to say so.
Have you read the notes?
What do you mean?
You do realise that she had advanced Alzheimer's. So, if you want to, you can speak to her, but please don't expect her to understand what you say, if she hears it, as she doesn't aways hold the phone correctly, and please don't expect her to answer you.
Well, OK then, is next Thurs pm OK?
Yes please.

(This is only the recorded highlights!)

Wow. Just... wow. I'm so sorry.
Frustrating and just unnecessary.

 

[Lawson58]

Also at the time when dad was having falls a doctor examined dad's legs and asked me to feel them before asking if I thought they were normal? I said 'no'! I was like you, @Toopie28 and very sleep deprived but I felt a bit guilty when the doctor asked this question because I felt I should have noticed the issue with his legs. However I am not doctor and at the time I was an exhausted who was trying her best. I've also just remembered that I wasn't well myself that week but I had to call the ambulance several times for dad.

MaNaAk

And sometimes I don’t actually physically see OH’s legs between the tracksuit pants and the compression stockings, they can stay hidden for days!

 

[Agzy]

I know this has been a frustration of many but I still can't wrap my head around this.

If your LO has been diagnosed with dementia by an expert in the field, why oh why oh why do the GP's still question you (POA) when you tell them they have a urine infection?

My poor Ma has had this reoccurring infection for at least 6 weeks so far.
All of you know how it makes them extra agitated and confused. And stresses out the carer even more!
Rant to follow -
I've taken a urine sample 3 times to the local pharmacy. Each time they will prescribe an antibiotic and tell me to take another one AFTER the dose is complete and bring to them and if still an infection, they must send to doctors. Ok, fine.
Easy. Done. Thank you!

Last one didn't clear up so sent to the doctors.
Doctor wants to "see" her. Ok, fine. Organise my sis-in-law to take her (I'm overseas now)
Doctor will not speak to SIL even though she in on the approved list.
Doctor asks Ma - how are you feeling? Do you go to the bathroom ok?
Ma, yes I'm fine.
I call in as SIL is telling me what's going on - doc won't speak to me but will call back.
She calls back and says - you mother says she feels fine.
My mother has dementia. So let's forget about the language barrier and hostess mode and let's go straight to the dementia.
I'm aware that she has dementia but she "seemed" fine. How do you know she has a urine infection. Has she told you?
Because she's off - I see her and speak to her every day. She's off. And a PWD cannot express or understand these symptoms.
Yes, I'm aware of dementia but she "seemed" fine. (Is this before or after she spoke about me, her older sister????)
May I suggest you research dementia on the Dementia Support Forum - I can send you a link

That was 2 weeks ago and after they tested the urine we brought in - guess what??

So now, round 5 with these uneducated medical "professionals".

Again, this morning. The same convo as above.

And yes, I am changing doctors - which I will do after Christmas. But soooooo frustrating!!!!

This so resonates and because of similar, although face to face with GP having had murder with a receptionist who refused to accept a urine sample I took in as the GP “hadn’t ordered it.” Like you I changed her GP to share mine and treatment and attitudes so much better.

 

[Muttimuggle]

Just a note on fluctuating water infections and dementia. My mother is now in a care home and luckily they provide and monitor fluids throughout the day because, at least, they understand how a water infection starting can influence cognition.Sometimes when I go in to see her I can see that she is reluctant to "drink all of that" but I, like her 24 hour carers, try to push that. I can sometimes notice her being a bit cognitively worse in warmer weather or when her room heating is on too much. When she lived at home and before the fall, which ultimately put her in a care home, I remember the struggle to try to maintain the fluids she needed (to remember to take!!)...even with the 2 care calls a day she was getting.I bought jugs and gave instructions about how much needed to be gone by the end of the day but it wasn't working. She couldn't follow instructions, she forgot about the jug and would claim she had had a cup of tea and I wouldn't know if any of this was true. Keeping water infections or cystitis at bay is so important for me as I only have 1 kidney so I am very mindful of how much plain liquid I consume spread out as evenly as possible over the course of 24 hours....but how does someone with dementia do this? I think with difficulty.

 

[Toopie28]

Just a note on fluctuating water infections and dementia. My mother is now in a care home and luckily they provide and monitor fluids throughout the day because, at least, they understand how a water infection starting can influence cognition.Sometimes when I go in to see her I can see that she is reluctant to "drink all of that" but I, like her 24 hour carers, try to push that. I can sometimes notice her being a bit cognitively worse in warmer weather or when her room heating is on too much. When she lived at home and before the fall, which ultimately put her in a care home, I remember the struggle to try to maintain the fluids she needed (to remember to take!!)...even with the 2 care calls a day she was getting.I bought jugs and gave instructions about how much needed to be gone by the end of the day but it wasn't working. She couldn't follow instructions, she forgot about the jug and would claim she had had a cup of tea and I wouldn't know if any of this was true. Keeping water infections or cystitis at bay is so important for me as I only have 1 kidney so I am very mindful of how much plain liquid I consume spread out as evenly as possible over the course of 24 hours....but how does someone with dementia do this? I think with difficulty.

In my experience has been very, very difficult to have her drink water.
She was never much of a drinker, anyway (water). And now that we try and push it she will definitely not do it.

The last sample that I was forced to bring in, I actually asked that question.
Did you check for dehydration?
The doctor said yes and that was not a factor (this time).

But getting them to drink is another battle. Although I must admit I'm kind of the same myself. I do have to force it.

 

[Toopie28]

Follow up from the "doctor".

Well I've done another test and there's a slight infection... But I don't think it warrants another dose of antibiotics. I think it's the disease...
So again with a stick? You know, I have those at home, I could do that myself. The reason I brought it into you is because you insisted that I do that next time and you would send it to the lab. This is the second time that you have NOT sent it to a lab.
Yes but again if she's not complaining of pain...

The conversation went on a little bit longer. We have another dose of antibiotics. But again she's not sending the sample into the lab. And it's the disease when it suits them. And it's not the disease when they don't know what else to say. 😫

 

[Chizz]

Yes it's all v frustrating - sometimes "they" are happy to speak with me and some are not.Wow. Just... wow. I'm so sorryl from the GP's surgery - woman says is that Mr Chizz & I say yes.
Can I speak with your wife please? Yes, of course you can, but what's it about?
Well I'll tell your wife.
Have you read the notes?
Yes, it says she's bedbound so I want to know if she wants the anti-shingles jab, We can organise a home visit.
Yes please
Well I have to have her to say so.
Have you read the notes?
What do you mean?
You do realise that she had advanced Alzheimer's. So, if you want to, you can speak to her, but please don't expect her to understand what you say, if she hears it, as she doesn't aways hold the phone correctly, and please don't expect her to answer you.
Well, OK then, is next Thurs pm OK?
Yes please.

(This is only the recorded highlights!)
Frustrating and just unnecessary.

Wow. Just... wow. I'm so sorry.
Frustrating and just unnecessary.

Continuation.....

I phoned the GP surgery earlier today, Friday.
I told them I was expecting somebody to come to our home on Thursday - as had been arranged on phone earlier in the week - to give my OH, who is bedbound, her anti-shingles jab, but nobody came.
Please hold and I'll find out what's going on.
I 've spoken with the practice nurse who says she was the one that called. She was expecting you wife to come to the surgery.
Pardon? It says in my OH notes on your file, and I mentioned it in the phone call, that my OH is bedbound. How was she expected to get to the surgery?
Please hold and I'll find out what's going on.
I've spoken again with the practice nurse. Very sorry, she knows your wife is bedbound, but in error put in the appointments diary that your wife would come in to the surgery!
Well, she can't! What now please?
I'll get the practice nurse to phone you to make a new arrangement.
Now closing time, but no phone call yet!

It would be a good system if it wasn't for the humans!

What a waste of resources.
(And breath. Relax or G&T?)

 

[Izzy]

(And breath. Relax or G&T?)

Both! 🤬🤬🤬