Memory clinic fall-out

[barkingmac]

I recently attended a memory clinic with my mum, who is in her mid-70s and has been showing signs of memory loss and confusion for a couple of years now. We were unable to complete the appointment, partly because the doctor we were due to see was off work with Covid, and partly because my mum became very distressed during the assessment (she is adamant that there is nothing wrong with her) and insisted on leaving before the end. Before we left, I was told that the clinic would send a letter to my mum's GP to update them on the appointment and was asked whether I thought it would be a good idea for a copy of the letter to be sent to my mum. I said that, if possible, it would be best not to send it directly to her and (I thought) it was agreed that the letter would be sent to me instead so that I could prepare her before she saw it. Unfortunately, she received the letter through the post today. It describes all of the concerns I discussed with the clinic during the appointment as well as the results of the tests she did complete.

Understandably, she is now extremely upset and angry with me and feels that I have betrayed her. She no longer wants to talk to me or see me. We are supposed to return to the clinic shortly to see the doctor we should have seen last time, but she says there is no way she is going back there.

What can I do? We don't have a diagnosis, I don't know how to access any support and I just don't know what I'm supposed to do next.

Any advice would be much appreciated.

Yes, important point re meds also, as perhaps they have contributed someway to the 8y we have had up to now.

So hard OP. In my experience she may rage at you now but eventually accept it. She may also forget if you hide the letter. In the short term I'd suggest working with GP /clinic to get assessment completed (blame it on GP if necessary) and go for 'mild memory issues' or some such fiction.

No two people with dementia are the same, and a diagnosis doesn't have to mean that a person can't live well and enjoy many happy years.

I know many people who have been living with a dementia diagnosis for over a decade and are still happily in their own homes with varying levels of support.

It's a shame that your mum is feeling betrayed. Fear of change and especially fear of being put in a home and losing control can be a barrier to getting the right support in place.

Hopefully with time you may be able to reassure your mum that a diagnosis is a tool that can help her access what she needs to live the rest of her life in the best way possible.

It's worth getting in touch with The Alzheimer's Society for advice. They will have information about what support you and your mum can access in the local area.

All I can think reading this is that when it's our own turn to need assessments & support -- don't be afraid. Embrace the assessments.
As much as anyone can form resolutions about the future, plan to be constructive in how to manage our likely physical/mental decline.

Is something we can do for our future selves.

@Polyanthus2 sorry to hear that your relative is not happy in a home. That's certainly a stage that you don't want to prolong.

When my Mum was first put on meds, it plateaued the symptoms while she still had a good quality of life. By the time she was end stage in a care home, she was refusing meds and most basic care. Thankfully that didn't last for too long as she gave up the will to live 😢

As a PP said, it really is the cruellest disease and I'm sorry for everyone who is living through this with their loved ones.

OP, this may be the first of many dramas. It is her disease talking at this point, not your mum. I tried to split the two things out when it became hard with my mum's word and behaviours. Try and think of her 10 years ago as a contrast and that woman is still in there, scared and confused. Look after yourself and perhaps look in to whether you have dementia carers groups that can support you.