Nervous about an appointment

[Natalie J]

Hello everyone,

For the past six months or so I've found it incredibly frustrating and disappointing to find how hard it is to get a diagnosis or even any useful tests done for my great aunt who lacks insight into how bad her memory and cognitive abilities are. This has actually been one of the most distressing aspects of the situation for me as it makes me feel like I'm the crazy one or else the system is rigged to prevent people getting diagnosed for some reason. Speaking to others and reading similar posts on this forum I could see I was not alone, but that was little comfort really.

I bottomed out in terms of despairing over this a couple of months ago and realised yesterday while speaking to another carer that I had actually pretty much come to terms with this, and accepted that this was an area I should spend no more energy on as I can't do everything and really need to focus my efforts on problems that I can resolve. Begging, nagging and haranguing various health care professionals had got me nowhere and just left me exhausted and upset, but to my surprise I was eventually able to let that disappointment go.

However, I took the opportunity to give my GA's GP surgery another nudge two weeks ago. I had to chase up some medication the hospital had recommended for her heart over a month ago, which seemed to have got stuck in the system somewhere as she didn't seem to have ever got the prescription or the tablets. The lady that was on reception asked me to email them the letter from the hospital that I was referring to as she didn't think they had a copy. Once I had the email address, I emailed a copy of the letter across as requested, and as I had discovered the doctor was due to ring my GA for a phone consultation in a few days time, I took the opportunity to also reiterate my concerns in that email about her memory. I listed lots of examples of things she struggles with, and asked once again if he would consider broaching the topic with her during that call. I warned him that she would likely deny having much of an issue and try to hide it, and offered to do anything I could to help.

I didn't hear anything back, not even acknowledgement of my email and as two weeks had passed I assumed that again that had been a waste of time. However, I got an email this morning from the surgery thanking me for my email and asking me to call so that I could book an appointment in for my GA at a time I could accompany her so that they could do a memory assessment and a brain examination. The will also be sending a district nurse out to take some blood samples to test the week before, so that the results of these will be available for us at the time of the appointment.

I have called up and made the appointment (23rd July), and agreed that when I tell my GA about this I will tell her it is just a routine check up for over 85s. If I tell her the truth she will be angry with me, get very upset and worried and most likely refuse to go, so I felt this was the kindest way forward for all of us.

The thing is, that rather than feeling relieved or pleased I'm now really anxious about this appointment and whatever will follow, and my brain has gone into overdrive imagining all the possible disaster scenarios. It was so traumatic speaking to so many people while she was in hospital (doctors, nurses OTs etc.) who would either 1) not take me seriously or 2) tell me they understood my concerns but couldn't help, or 3) promised to do things and then never followed through. Previous attempts to contact her GP got me nowhere and of course any conversations with my GA to encourage her to ask her GP for advice are equally unsuccessful. I'm frightened of going through the same things again, and this time with my GA present meaning it could be even more distressing and I'll have to get her home again afterwards on my own too, while she's potentially cross and frightened and taking it all out on me.

I don't have any family members or anyone else to assist or support me through this, so it's very hard and I often feel overwhelmed, frightened and exhausted by it all. I know on some level that this could be a step forward because although the tests might not show anything and we are no further forward, it could be that if she were to get a diagnosis this would provide me with a bit more leverage in terms of getting support for her. But I'm just feeling scared and anxious because very few things seem to go well, and I feel the odds are that this will be a disaster too. Just one more distressing experience that leaves me an emotional wreck.

I'd be ever so grateful for any advice or tips or even just comments that would help me to put things into perspective and feel a bit more positive and less of a sense of trepidation about this latest development.

Also if anyone could fill me in on what these tests are likely to involve (blood tests, brain examination and memory assessment) I would appreciate it, as I've no idea whether these are likely to be helpful or not. So far the only tests she's had have done nothing but wind her up and I'd like to be braced for that if that is likely to be the case again.

Thank you for reading!

 

[SherwoodSue]

Hello

Firstly they will try to rule out things that look like dementia but aren’t B12 deficiency

The brain scan is very telling too. The brain may have shrunken more than in normal aging. The ventricles in the brain may have increase in size and vascular problems may be seen

The may be a general screening test such as the GP does

I am going to tell you a name and address and I want you to tell it to me later

Who is PM ?

The Queen /King

Subtract 7 from 100. Another seven from that etc

What was that name and address again

Time day month year for today

Draw a clock face with all the numbers on.

They will also ask the person about how they are coping with activities of daily living.

Sit behind the person and pull a face when your loved one is telling fibs.

We all fear that we will be made to look foolish as if we had exaggerated what has been going on

Even with showboating going on it’s hard to fool comprehensive testing

Nearly there …

 

[SherwoodSue]

Hello

Firstly they will try to rule out things that look like dementia but aren’t B12 deficiency

The brain scan is very telling too. The brain may have shrunken more than in normal aging. The ventricles in the brain may have increase in size and vascular problems may be seen

The may be a general screening test such as the GP does

I am going to tell you a name and address and I want you to tell it to me later

Who is PM ?

The Queen /King

Subtract 7 from 100. Another seven from that etc

What was that name and address again

Time day month year for today

Draw a clock face with all the numbers on.

They will also ask the person about how they are coping with activities of daily living.

Sit behind the person and pull a face when your loved one is telling fibs.

We all fear that we will be made to look foolish as if we had exaggerated what has been going on

Even with showboating going on it’s hard to fool comprehensive testing

Nearly there …

Excuse lack of proof reading

 

[Natalie J]

Hello

Firstly they will try to rule out things that look like dementia but aren’t B12 deficiency

The brain scan is very telling too. The brain may have shrunken more than in normal aging. The ventricles in the brain may have increase in size and vascular problems may be seen

The may be a general screening test such as the GP does

I am going to tell you a name and address and I want you to tell it to me later

Who is PM ?

The Queen /King

Subtract 7 from 100. Another seven from that etc

What was that name and address again

Time day month year for today

Draw a clock face with all the numbers on.

They will also ask the person about how they are coping with activities of daily living.

Sit behind the person and pull a face when your loved one is telling fibs.

We all fear that we will be made to look foolish as if we had exaggerated what has been going on

Even with showboating going on it’s hard to fool comprehensive testing

Nearly there …

Thank you, this was really helpful @SherwoodSue.

 

[2ndAlto]

You may have to fudge the truth about this a bit @Natalie J - I know outright lies feel very uncomfortable but if you shift the burden of responsibility on to the GP surgery "They just need to do your 85 year old wellness check...no I don't know why, it is just something they do these days"... "no, they haven't said what tests you need, they'll tell us when we get there"... "I expect they'll want to check your blood pressure, things like that..." reassure, reassure, reassure.

 

[canary]

I think that contacting your GAs GP in the way that you did was exactly the right thing to do - emailing them with your concerns before an appointment so that they are not relying in what your GA tells them. Hospital health workers cant refer to the memory clinic and most of them, despite being "dementia trained", have very little experience of it.

Yes, Im afraid you are almost certainly going to have to use a "love lie" to get her to the scan and go to the memory clinic. Use whatever excuse you think she would accept

 

[Natalie J]

You may have to fudge the truth about this a bit @Natalie J - I know outright lies feel very uncomfortable but if you shift the burden of responsibility on to the GP surgery "They just need to do your 85 year old wellness check...no I don't know why, it is just something they do these days"... "no, they haven't said what tests you need, they'll tell us when we get there"... "I expect they'll want to check your blood pressure, things like that..." reassure, reassure, reassure.

Thanks @2ndAlto. It feels like such a lot of pressure on me, because just going there alone with no reason is enough to make me nervous as I'm not familiar with the location, the parking arrangements, etc. I am very lucky in that I never have to see my GP so I'm not even familiar with the protocol for going to the doctors myself. Obviously I have to conceal all those anxieties from my GA as I want her to feel as relaxed as possible, so already it's a lot. Then on top of that I worry about how convincing I'll be when I have to tell my love lies, and whether she'll catch me out.

I am just the world's worst liar and it's always so obvious to people when I'm trying to hide something and I crumble and blab very easily! I'm always very unsure which truths she will be able to handle, and so trying to determine which things it would be best for her to know, and which things it's better to conceal is a minefield. It feels almost impossible to get right so after everything I say I almost feel like I'm braced waiting for the reaction to see if I have got it wrong and how bad the fall out will be. She can get very nasty very suddenly, and i find it very hard to stay calm and collected when she's in b*tch mode and insults and accusations are being fired at me machine gun style. I feel I'm constantly caught between the devil and the deep blue sea.

When it's just the two of us I just agree with everything my GA says however ridiculous it is just to keep the peace and keep her happy, because there is nothing to be gained by trying to correct her and I get blamed for EVERYTHING if anything does not go the way she wants. She's vicious with her insults. The GP obviously won't know that's what going on if I agree with her in the consultancy room and I obviously don't want him taking inaccurate information down otherwise that will defeat the whole point of going to see him. If I don't agree with her though, it will be very distressing and confusing (and aggravating) for her, and she'll get very upset with me and think I'm making things up or trying to get her written off as crazy for my own personal gain. That is how it went when we did a care review a month or two ago. Fortunately the care coordinator stuck up for me on that occasion, and she had all the notes from the carers' visits, so she knew I was telling the truth and my GA was talking rubbish, but the GP won't have all that evidence, and he doesn't know me from Adam.

I fear me 'telling tales on her' during the consultation could break her trust in me, which could be terrible, especially if after all that we don't get any further because hides it all so well and the Dr thinks she's fine! I'm only able to do as much as I can because i have put in ever such a lot of work in gaining her trust by holding my tongue and going along with her delusions. Urgh! It's just too much for my nerves and brain to handle, even just the thought of it! I'm honestly dreading it!

 

[Natalie J]

I think that contacting your GAs GP in the way that you did was exactly the right thing to do - emailing them with your concerns before an appointment so that they are not relying in what your GA tells them. Hospital health workers cant refer to the memory clinic and most of them, despite being "dementia trained", have very little experience of it.

Yes, Im afraid you are almost certainly going to have to use a "love lie" to get her to the scan and go to the memory clinic. Use whatever excuse you think she would accept

Thank you @canary for saying I did the right thing with the email. I really appreciate that. I know she would go absolutely ape if she knew I'd done that, and feel utterly betrayed, so I do still feel really guilty even though I did for her benefit, hoping it will be for the best. I'm just scared it will all blow up when we get in there and she'll see me as the enemy and no longer trustworthy after this, especially if the GP tells her I contacted him, which I have no idea whether he will do or not. I'm just a bundle of nerves!

 

[canary]

I know she would go absolutely ape if she knew I'd done that, and feel utterly betrayed, so I do still feel really guilty even though I did for her benefit, hoping it will be for the best

I think it is pretty standard for people with dementia to reach the stage (often quite early in the disease) where they are unable to understand the reality of their own condition and will deny that anything is wrong. My OH does not believe that he can no longer do things and I have had him accusing me of taking him over, treating him like a child, preventing him from doing things and telling him what to do. I know that he too would be very angry if he knew that I always write a letter to the doctor before any appointment explaining what is actually going on.

Nevertheless, it is important (and in his own best interest) for the doctor to know the truth and this outweighs what OH wants, so Im willing to take the chance that he will find out (it hasnt happened yet).