Memory Teams, Geritricians... whats the point!?

[Linbrusco]

It feels like to me its all a pen pushing exercise to keep the powers that be happy.
Whether its any different in the UK or your country?


Mums annual Geriatrician review yesterday for her AD.
I was already at odds with him, as I phoned the receptionist if I could either see him on my own or give him a letter to read before hand.
In his words... Yes... Sure.. but whatever I disclose to him he has a duty to inform Mum as the patient.

Why would I then want to jeopardise my relationship with Mum as her main Carer

So yesterdays appt went swimmingly..

How are you Mrs S? How do you think your memory is compared to when I saw you last, the same or worse?
Oh I'm fine. My memorys about the same. I forget things but they come back in a flash.

How are you doing around the home, are you still managing to get out and about?
Yes I'm fine I still do my housework ,and walk up to the shops now and then.

So he asks a few more questions, and then turns around and asks me the same.
All I was prepared to say in front of Mum was that she was needing alot more supervision.
He says. What do you want us to do, what support do you need? We can't have someone there 24/7.

He then rabbits on about Mum taking her 5mg Donepezil for now, but she has been stable now for 2 yrs, and how marvelous Mum is doing, and how well she is looking.
Doesn't feel any memory tests is necessary as it would serve no purpose.
He has signed her off and back to her GP's care

There was so much I could say but didn't.

In the meanwhile an appt letter arrives for Dad to see the Memory Team again.
He has cognitive impairment.
What is the point!? Dad doesn't want to do crosswords or read books to keep his mind active. Doesn't want to join in any other groups or mens groups.

At the end of the day, whats being done is being done.
I still feel like I'm in limbo for that big crisis to happen.

I have an appt with Mums GP on Monday and will be telling him how all I want at this stage is to be taken seriously and listened to as a Carer.

 

[stanleypj]

Your frustration is understandable Linbrusco. You would think that any medic in this field would have quickly worked out that if they really wanted to understand where someone was up to they would need to talk privately to the main carer as well as the PWD.

I would agree with him about the memory tests though. Sue struggled through very lengthy ones that she knew she was failing dismally long after they could provide any useful information.

 

[Grey Lad]

High Linbrusco. I think this sentence of yours sums it all up for me:

I have an appt with Mums GP on Monday and will be telling him how all I want at this stage is to be taken seriously and listened to as a Carer.

That would make so much sense. It is time that a review of the value of the Memory Service too place. In some ways it reminds me of a Job Creation Project.

 

[marionq]

Following TP advice I write a report each time John and I see his consultant and hand it over quietly. When there was a serious matter I posted it beforehand. The female consultant has taken cognisance of what I have written and asks him questions discreetly around those topics.

I have been very impressed with all the NHS care since the start. Now Social Work - that is a different matter and one I will report on when we get to the end of this current journey!

 

[Lawson58]

I may sound a little cynical but I think that being a geriatrician must be a bit like being a kid in a lolly shop! Lots of goodies and no one to criticize you if your patients continue to slide or even die!

We live in a regional centre with only one geriatrician so apart from not having a choice in our consultant, we had to wait months and months to even get an initial appointment.

I know that OH has slipped a bit since last Christmas but at his last appointment the geriatrician told OH that he has done very well, keep up the medication, and now let's have a nice little chat about our local Aust. Rules football team.

I think I need to keep up with OH's 6 monthly appointments on the basis that when things get bad at some stage in the future, I may need the geriatrician's referral for something that we don't need yet. He did notify our local authorities about OH's driving and he subsequently failed an assessment and lost his licence which was absolutely necessary.

I have much more faith in our GP who has been very supportive so I hope you get some satisfaction from your appointment on Monday.

 

[Linbrusco]

Thanks all.

Lawson58 my Mum has slipped alot since Christmas too.
Greylad, our memory team is newly formed since Mum was diagnosed in 2013.
I have seen their Memory Team Pathways action plan. It is laughable. As said it appears to be a plan on paper with no substance.
Marion Our family GP is more discreet when seeing him beforehand, compared to this Geritrician who is the Head of Department.
Stanleypj, I do know what you mean about the memory test. i suppose I felt that if the Geritrician wouldn't at least hear what I had to say privately then the memory test would confirms Mums decline?


Even our local Alzheimers Carers Support Group has been cancelled alltogether due to lack of numbers. The next closest being held on my day at work.
Just feeling all together a bit deflated and frustrated.

 

[Lindy50]

Oh Linbrusco, this sounds so like our last appointment at the Memory Clinic

You could argue that it was positive for mum, in that the consultant chatted to her and told her that she was "doing very well for her age". He really connected with her, so much so that she now believes that every male doctor she sees is him, and that there is nothing wrong with her. When we were trying to get her into hospital recently, she even came up with "but I thought I was doing well".......

As for me, I was upset for weeks after the appointment, because I felt, like you, that my legitimate concerns had been completely ignored. I was so angry, there was no recognition whatsoever that this ***** illness had taken over my life too, or that I had anything to contribute to the doctor getting a realistic picture of the situation.

Sadly I have no faith in the Memory Service. Like Grey Lad, I feel that it's purpose lies somewhere in between Job Creation and being an Emergency Service, useful to have a consultant if and when admission to a mental health unit is needed.

For so many of us, though, it's nothing more than an insult

I do hope you get on better with the GP. After a lot of input from me to keep him informed, I feel mum's GP is the only source of medical support we have.

All the best Linbrusco, and (((hugs))) to you.

Lindy xx

 

[jugglingmum]

I wasn't sure the memory appt would be worth it, but took mum along. I have the 'advantage' that she is severely deaf, so I can say whatever is needed without her hearing and if she asks what I am saying manage to say something plausible. He was more interested in what I had to say than mum. I had picked up from TP how to handle it in advance, and from what I had seen on TP normally at memory clinic the carer's opinion is valued and handled discreetly.

He didn't do a memory test - she scored very highly on the one she did the year before (almost within normal range) and clearly not reflecting her illness at that stage which he could see from conversation with her and my brother. This had been written in her notes, in fact I was surprised at how candid her notes were. The first Dr that saw her had definitely taken on board everything my brother had said. She had changed areas so I wanted to get her in the system here and had expected a memory test, but Dr said score wouldn't reflect her current situation. He did ask her about her old jobs (before I was born) I think to see if that bit of memory was working.

I did come away feeling it was worth it, mum thought it was a waste of time as they had just chatted! At the moment she has plenty of care where she is and as she will be self funding I know I can pay for more care whenever I need it.

 

[Lindy50]

Glad you had a good experience JM

I did value mum's first two Memory Clinic appointments, as they gave us a diagnosis at least. However, last time I felt that i was foiled by my own attempts at care, ie if I had turned up with mum unkempt, poorly dressed, anxious and worried, we might have got more attention. As it was, he clearly decided that no action was needed. Worse than an insult, it felt like a slap in the face, I'm afraid!

It's not often I get so angry ...

Lindy xx

 

[Linbrusco]

Apart from a few of us, seems to be all too common an experience

Geriatrician asked Mum if she had any concerns.
Mum said yes. Her concern was a rash she had on her arm.
Its psoriasis which she has ointment for already

Then he asked me if I had any concerns.. in front of Mum.
What was I to say?

Yes Mums short term and now increasingly long term memory is very poor.
Her cognition of conversations/dates/times/plans is also very poor.
Dad is doing more and more round the house and Mum refuses home help because SHE does it all.
Mum gets a bit aggressive with dad as she doesn't believe him, doesn't understand him, and that he wants her locked in her room. The reality is that he likes her to have an afternoon sleep because he knows how much worse she is without one, so hes always suggesting to her in the afternoon to go to bed and have a sleep.

Visually she is starting to see things that aren't there or misinterpret what she sees
eg Leaves on a tree were red balloons, car parked in the driveway when there is none
Mistaking people in photos for others or not even recognising herself as a child or her own family
When she is in her bedroom and Dad is watching TV, that the voices she can hear are people in the room and asks who has been in there.
Wakes up constantly from 3am onwards, going to the lounge, turning the lights on and checking her calendar as to what day it is and whats shes doing that day
Looking out the curtains to see if our lights are on and we are awake.
We live in the front house and I think she uses this as a cue to go back to bed or not?

There are others...

I think I will write this down and hand it to Mums GP when I see him.
Sometimes when I talk everything comes out in a big jumble