Telephone Diagnosis Appointment - What to do?

[worriedson77]

Hi Everyone, I've been off this forum for a while, no particular reason other than trying to cope with the pandemic and the like but I got a call today and wanted to canvass opinion really. A year ago pretty much to the day I became suddenly aware that Mum (Now 75) was suffering from severe short term memory loss and masive changes in personality. A long story and obviously not uncommon or unique followed but we managed somehow to quickly arrange dr visits and started at the memory clinic getting the initial assessment in as lockdown 1 took place. Clearly the pandemic delayed follow up stuff and apart from a sort of welfare call there hasnt been anything other than a sort of plan to arrange a brain scan once lockdown finished - there were issues but the scan would help to confirm exactly what we were looking at. This was arranged and was met with steadfast refusal as it has come "out of the blue" and the connection between what has been discussed has long been forgotten, any issues are put down to the lockdown rather than anything else and in respect of memory of any events of the past 12 months are gone and others that do come into conversation are somewhat skewed from reality. Anyhow the call today was the memory clinic wanting to make a diagnosis call in around a weeks time, i had already got it on my mind to plan for vaccinations etc but was not expecting this because I thought we were at an empasse stage needing the scan and i had kind of come to terms with this in that at present Mum is "OK" in that shes not agitated or stressed and I actiually think its a legitimate concern that shes got of having to go into a hospital at this point in time so was willing to wait it out. Anyway, now we can get a formal diagnosis I think its useful even if its just so she can be offered support and treatment but I am not sure it will be of benefit or retained information to her.

So my question is (After my lengthy preamble) should I get the diagnosis myself for information or should I make my mum take the call herself with me lurking (Which I don't think she would permit)? She has had a few scam type calls recently and essentially with what happened with the scan letter and no memory of the past 12 months, I genuinely think that she wouldn't accept the diagnosis nor would she remember it so my dilemma is whether to force the issue to get her to attend the call in the first place which I know would also upset her or whether to effectively shield her from the news which she will not remember anyway and if she could remember would not accept? Genuinely not sure what the best approach would be but would welcome input.

 

[MartinWL]

I have some experience here. My father had a telephone diagnosis and I was lurking. If was a travesty of diagnosis. It is quite impossible to do it by telephone and z PWD can easily pullnyhd wool over the eyes of the caller, which is exactly what happened. Later we had a nurse pay a visit in person, the result was quite different and the testing more objective. In addition he had the brain scan.

I can see why you might want to wait before having a scan in a hospital. Could a memory nurse come to you? At least that part of the test could be done at your home.it was in my dad's case. I would refuse categorically to allow a diagnosis to be made by telephone, it is just not adequate. PWD frequently understate their memory loss and the caller has to accept their word on that. You would not be able to take part in the call I do not think.

 

[canary]

We have had lots of telephone appointments during the lockdowns. I put the phone onto speakerphone so that I can hear the conversation and can also speak to the doctor myself without him feeling that I have taken over. Right at the beginning of the call I say something to OH like "Is it OK to put it onto speakerphone so that we can both hear and speak to the doctor?" so the doctor knows what I have done too. OH always agrees, but he is now much more compliant and I doubt whether he would have agreed at the beginning. Do you think that your Mum would agree to this?

 

[Sarasa]

I think if you can put the phone on speaker phone as @canary says that is the best solution. That way you'll know exactly what has been said and can act on it. You can also decide by the way your mother takes the news how you will talk to her about it if you need. to.
My mother was in complete denial that she had problems that were probably dementia related. She has vascular dementia, so her at the time (2018) her memory was pretty good, it was just her logic circuits had fried. As this was pre-covid my brother and I had several attempts to get her to the memory clinic, but she refused to go. She did agree to a brain scan, but that appeared to just show 'normal aging'. We were at an impasse until mum had a meltdown in the doctor's surgery and accused them of various things while throwing her medication around. That lead to a psychiatrist visiting her at home when neither of us could be there. After he'd chatted to her the psychiatrist spoke to my brother on the phone, with his phone on speaker, to confirm mum had probable vascular dementia. All the while my brother could hear my mum in the background firmly denying that was the case.
We never mentioned the visit to mum again, but the confirmation of what we had suspected, and the danger my mother was putting herself in on a daily basis, was enough for us to decide to move her to a care home.

 

[Weasell]

I think there are some things I don’t understand in your post.
Why would they give you the diagnosis ? Surely data protection regulations will prevent this or have you discussed your power of attorney with them ?

If your mum has only done the initial tests, and had no scan , how confident can they be at a definitive answer, or is the phone call really further tests?

I am in a suspicious weasel mood today. Are they hoping she is in her best hostess mood and then they can tell you to come back to them in a year as all seems well?
The backlog of work they must have must be huge, it would be quite a good idea from their point of view?

I listened to mum mother recently tell healthcare professionals she does all her own food shopping ( what pandemic) and that I visited every couple of months !
I found it amusing, but it isn’t amusing when you are trying to get a diagnosis.

 

[MartinWL]

As @Weasell says, hostess or host mode can easily prevail over the telephone and may prevent an accurate diagnosis. The speakerphone solution is ok for a limited range of physical ailments, but absolutely unsuitable for dementia diagnosis.

 

[worriedson77]

I think there are some things I don’t understand in your post.
Why would they give you the diagnosis ? Surely data protection regulations will prevent this or have you discussed your power of attorney with them ?

If your mum has only done the initial tests, and had no scan , how confident can they be at a definitive answer, or is the phone call really further tests?

I am in a suspicious weasel mood today. Are they hoping she is in her best hostess mood and then they can tell you to come back to them in a year as all seems well?
The backlog of work they must have must be huge, it would be quite a good idea from their point of view?

I listened to mum mother recently tell healthcare professionals she does all her own food shopping ( what pandemic) and that I visited every couple of months !
I found it amusing, but it isn’t amusing when you are trying to get a diagnosis.

Hi Weasell, sorry my revisiting the board and trying to keep my post not war and peace like I've probably missed out some key components so apologies for that. As a sort of recap, my mum had a major change in January last year that involved the police, accusations and she was out of characteristically furious sometimes verging on delerium and so forth that prompted a bit of a more urgent sort of approach as it was such a change that I had to try and rule out other acute causes so I managed to get in touch with her drs and then her to agree in the drs that they were OK to have dealings and discuss matters with me. The Dr conducted their tests and referred her to the memory clinic and the memory clinic (We attended together) conducted the assessment where she had to do loads of tests etc, intially hostess mode seemed to be working but all of a sudden in the testing she started to fail badly and didnt know where she was, the day and the test questions were pretty much blanks. The nurse said to me seperately that she was certain at this point that there was a broad dementia diagnosis but wanted a brain scan to determine the type of dementia essentially because at that point there had been such a decline in cognitive ability that they wanted to see if there was any underlying cause and at that point it was a case of sort of seeing if the rapid decline was going to continue because if it did, then I, and I think they also had serious concerns about her welfare as she lived alone (It has probably been fairly consistent since the initial decline if that makes sense).

At the meeting the nurse asked my mum if she wanted me to be the main contact and she said yes and since then they have called me twice, firstly probably around November time to see how things were (Just speaking to me) and seeing if they could rearrange the brain scan, I do have a POA in place but theyve called based on the permission that mum gave. They were actually meant to write to me with the scan appointment but they in error wrote to my mum instead and she reacted badly and had no idea why the appointment was being made, I'm not entirely sure (The story changes a fair bit!) if she called them and kicked off but I think she may have done so they have now contacted me to book in a diagnosis in the absence of the scan, I think if she did contact them that they would have a clear view of how she was in the absence of a scan.

Talking to them the other day which was them calling me again in booking the appointment, they said that they would be calling me on my mobile as that was my mums choice so I asked if she needed to be there, they responded saying it depends on how her recall is (Its not good!) and I genuinely was unsure as to the best course of action because ultimately whilst its not going to change anything massivey for her, it would allow me to continue the background work in ensuring that she is supported in the right way. My dilemma is that its her diagnosis but as i mentioned she now has a distrust of telephone calls due to several scam attempts being made so I was just sort of seeking counsel to see if I should put her through the trouble and stress of doing the call with her or just sort of acting like a bit of a shield that I would have to be in any event because she genuinely won't remember any diagnosis or would not accept it if they managed to do it in a way that she did remember! Sorry if it doesn't make a lot of sense, it feels like a case of being between a rock and a hard place and wanted to see what people thought as genuinely i see problems with both options.

 

[canary]

Thanks for filling in that background @worriedson77
In view of that , and as your mum has given permission for them to talk to you, I would just take the call yourself and not involve your mum. You can always tell her stuff later if you think it would benefit her.

 

[Weasell]

wow!
One of the reasons I come on this forum is to hear tales like yours.
On days when I am feeling downhearted or a host of other negative emotions my respect for what other people go through makes me feel better!

As time goes on with mum I use more and more ‘love lies’ and always try and tell her what she needs to know and can accept.

I agree completely with @canary .

You sound so organised I am sure you have done it already, but getting call blocker on mums phone has been a godsend.
I can be worth making a note of the three numbers on the back of any credit cards and then scratching them off.

 

[MartinWL]

I agree with @canary too, the best thing is for you to manage everything and tell your mum what she needs to know, there's no point in burdening her with things with which she can't cope.

 

[worriedson77]

Thanks for all of your help with this @Weasell, @Sarasa @MartinWL and of course @canary , when I reflect on all of this stuff and the help I've had from you and others before I think its fair to say that its quite a humbling experience and I can't convey how grateful I am that you take time out to help. I have to say that you have helped so much, being completely honest this bit im finding hard because its hard to know what's for the best or not so to speak. I think either way its hard because again without trying to come of as being in denial, I'd much prefer that none of this was happening at all and possibly thats why I'm torn because right now mum is sort of oblivious to the harsh reality of whats happening in the world and her being content is less stressful for me but I can't help revisiting the fact that she's still entitled to know but deep down know she won't retain the information which in itself is really sad. ☹

 

[Starting on a journey]

@worriedson77. My mum refused to go to her diagnosis appointment so they saw me instead. It was quite weird at the hospital, they asked me to leave contact details etc but didn’t ask mums permission to contact me ...it was if her rights had vanished.
Anyway I went to the appointment which was not nice at all. I guess there’s no easy way to tell you about Alzheimer’s. They did say go and look at care homes as mum will need one soon. They made a big show of demanding that I tell them I had told her of the diagnosis before giving memantine. I did tell her in front of my adult children but quickly followed it with “ put your jacket on as we need shopping” ..never referred to again. This was July 2019 and mum is still at home, settled and happy.
Basically don’t worry your mum with it and put your speaker on hands free so that you can take any notes. Good luck

 

[worriedson77]

Thanks @Starting on a journey for your help (And other contributors too of course). I thought I would just post a quick update as I think for my own well being its valuable to stay in touch on here which I realise after lapsing the regularity of contributing of late. The call itself was fine, they talked to me independently of Mum altogether and as I mentioned I think that the interactions that they had had previously made them aware of the futlility of poviding Mum with a diagnosis. I was told mum has a diagnosis of dementia but unspecified because essentially they havent been able to carry out a brain scan. They advised that they could start medication of donzepil (Not sure of spelling) just in case its Alzheimers rather than Vascular Dementia and asked for a heart reading (Which I managed to get using the vaccine appointment that we attended as an excuse to take this) this hasn't started yet though. They wrote to Mum regarding a follow up appointment from our chat and she apparently went off at them (In all fairness they called me straight away to let me know) so they have arranged to communicate entirely via me, in itself this is fine but obviously a burden of responsibility and no matter how rational the approach I can't help feeling a tad guilty in being the custodian of information relating to something so personal to Mum. Very much feels like being stuck between a rock and a hard place. Anyway, we have a diagnosis of sorts and a plan, now its working ot how I can implement the plan without causing Mum distress.

 

[Sarasa]

I'm glad you've managed to get a diagnosis @worriedson77. I found it very strange to have a diagnosis that I couldn't share with my mother as she would vehemently deny that she had any thing wrong with her. Glad the clinic will now be talking to you rather than trying to worry your mother.
Hope your mum starts on the donepezil and that it makes some difference.

 

[Anna328]

Hi Everyone, I've been off this forum for a while, no particular reason other than trying to cope with the pandemic and the like but I got a call today and wanted to canvass opinion really. A year ago pretty much to the day I became suddenly aware that Mum (Now 75) was suffering from severe short term memory loss and masive changes in personality. A long story and obviously not uncommon or unique followed but we managed somehow to quickly arrange dr visits and started at the memory clinic getting the initial assessment in as lockdown 1 took place. Clearly the pandemic delayed follow up stuff and apart from a sort of welfare call there hasnt been anything other than a sort of plan to arrange a brain scan once lockdown finished - there were issues but the scan would help to confirm exactly what we were looking at. This was arranged and was met with steadfast refusal as it has come "out of the blue" and the connection between what has been discussed has long been forgotten, any issues are put down to the lockdown rather than anything else and in respect of memory of any events of the past 12 months are gone and others that do come into conversation are somewhat skewed from reality. Anyhow the call today was the memory clinic wanting to make a diagnosis call in around a weeks time, i had already got it on my mind to plan for vaccinations etc but was not expecting this because I thought we were at an empasse stage needing the scan and i had kind of come to terms with this in that at present Mum is "OK" in that shes not agitated or stressed and I actiually think its a legitimate concern that shes got of having to go into a hospital at this point in time so was willing to wait it out. Anyway, now we can get a formal diagnosis I think its useful even if its just so she can be offered support and treatment but I am not sure it will be of benefit or retained information to her.

So my question is (After my lengthy preamble) should I get the diagnosis myself for information or should I make my mum take the call herself with me lurking (Which I don't think she would permit)? She has had a few scam type calls recently and essentially with what happened with the scan letter and no memory of the past 12 months, I genuinely think that she wouldn't accept the diagnosis nor would she remember it so my dilemma is whether to force the issue to get her to attend the call in the first place which I know would also upset her or whether to effectively shield her from the news which she will not remember anyway and if she could remember would not accept? Genuinely not sure what the best approach would be but would welcome input.

Hi!
My Mum had an assessment over the phone. I was allowed to be included in the phone call as some of the assessment was written and some of it was oral. i have to say it was essential that i was there for it to be truthful and fair for my Mum. She would have not be able to complete it on her own due to loss of hearing and anxiety.
Mum was ready for a diagnosis and readily accepted it. it helped her to understand why she had been experiencing the anxiety, lapses in memory and inability to carry out tasks. IWe were both happy with assessment over the phone, obviously it would have been better in person but we are where we are with covid and it was important for us to get some help.
I wish you all the very best.