Come to a stand still

[bluebell8329]

#1
Hi

GP referred my mam in October to the Memory Protection Service, someone came to the house to do a written/verbal test which she failed. She's had a CT head and been reviewed by the Neurosurgeon who found a benign meningioma and stated it was not causing her memory problems. We've had visits from OT who have put things in place for her such as an Alexa for her to video call us on, give her alerts to remember to lock the door etc. However, we have had no formal diagnosis I've spoken to the Memory Protection Service today who said she was not under their care and to try the Older Adult Community Treatment Team who I have just spoken to, and they suggested that I try the GP surgery as the Neurosurgeon would have written to the GP outlining any diagnosis and forms of treatment if any. Waiting for the GP to get in touch some time this week....

So, as it stands, I've hit a brick wall, can't believe how long it is taking. Part of me thinks do the OT's know what the diagnosis is as they are providing her with support and aids, would they do this without a diagnosis?

I am so sorry you are going through this.

Can I ask if you're in the UK as I haven't heard of a Memory Protection Service? As far as I know, in the UK it is normally referred to as Memory Clinic that's why I'm asking.

In my experience (UK), it is the memory clinic who gives the diagnosis and the first medication before discharging to the GP (which is basically the end of any engagement!).

If I was you, I would be putting in a complaint to the Memory Protection Service as to why they are not helping you get a diagnosis or even know what's going on. This is a time when you need clear and precise communications, not fobbing off to another team who may or may not be able to help.

Hopefully someone more knowledgeable will be able to help soon.

I'm sorry too, OP. I'm not a medic, but I've had two close elderly relatives (both now dead) who had dementia, one of whom also had a series of strokes. I know it can be a nightmare trying to find a way through the confusion, especially when the person treated is 'old'.

I would just say that you'll need to be careful to make sure that your mum's meningioma is properly considered i.e. whether there is any treatment that can reasonably be offered. My experience is that once an elderly person with memory issues gets into the 'system' almost everybody there will assume that every one of their problems is caused by dementia, and basically write them off. This is particularly the case in nursing homes. Although my family is persistent we found it was virtually impossible to get a nursing home to keep an eye out for neurological symptoms in my relative who was having strokes.

See if the GP will tell you how advice can be given about the meningioma. If it were me I'd also want to know why it's been said that the meningioma cannot be the cause of the memory issues.

Very best of luck to you and your mum

Thanks for the replies. We’re in the North East which is covered by the Memory Protection Service. I think you’re right, a complaint may be the way to go.

She’s only 66 so not really elderly but she’s had the CT and an MRI which has confirmed the meningioma is benign and because of its location it’s not causing the memory problems. It was just an incidental finding.

it’s just so frustrating not having the diagnosis as there’s so much we can’t access without it.

With my Mum's diagnosis, I was emailed a letter the Memory Clinic (down south!) sent to her GP. I was given an email of the Memory Clinic nurse (possibly because I'd already had cause to complain about the service) so I asked her and she emailed it to me.

I did find it hurt badly even though I already knew. But also helps as I both have a reason in my mind for her behaviour so I don't feel so embarrassed by her (awful of me I know), but as you said I can tell people who need to know about her condition what her condition is.

I have LPA for an elderly relative, for several years I couldn't get an actual diagnosis and when I did they just said it was "atypical dementia" several years on last year it changed to Alzheimers. I think sometimes they just don't know but they should at least acknowledge the symptoms.

It is hard and it nearly broke me, the relief when we finally got her into a care home was fantastic. I still have to get involved but I know she is safe, fed and warm. Good luck.

@bluebell8329 - are things going okay for you?

My understanding is that a benign meningioma should be regularly monitored by MRIs - I think a fairly typical protocol is 6 months after first found to see if any changes, then 12 months, then 2 years, then 5 years... assuming it is slow growing. Called a watch and wait protocol.

Your Mum's in her 60s - she hopefully has many happy years ahead of her!

Warmest wishes