Friends, Family & Carers Forum

[Daughter74]

Hi,

Im new to this group. Im seeking help, support, knowledge.

My Mum was admitted to a mental health unit 4 months ago, with depression and possibly other problems. They trialled different medication for 3 months, she seemed to get worse. She was then told to get ECT treatment (x12).

Every time I see her she is worse than the time before. She cannot talk at all, only can copy and repeat what you say to her. She is just walking around aimlessly. It is very distressing to see my mum like this. The doctors are baffled, they cant work out what is wrong with her and why she is acting this way.

They are going to try one more round of ECT with her then if she dosnt get any better they will deem that she has dementia. Has anyone been through anything like this with a loved one? Is there anything I can do to help this situation my mum is in?

I feel very helpless.

[Outlanderali]

Hi @Daughter74

Welcome to the forums, and thank you for your post.

I am so sorry to hear about your mother, it sounds like a really distressing situation for you to be in, to see your mother like she is.

You have come to the right place to get support from others who may have experienced similar things that you are currently going through.

Have you had any support from a carers support program? @Alessandra1992 may be able to give you some advice on how to get access to some support for yourself while you support your mother.

Welcome again!

Outlanderali

[Appleblossom]

Dear @Daughter74I have 2 different things to share.  Not an opinion .. your circumstances are unique to you and your mum.

My mother had ECT in the 60s and even though it was a lot more haphazard treatment than ECT today ... she said she was glad she had it as it shook her out of her depression.

I actually had periods in my life where I wondered about aimlessly and not able to be very coherent.

The best thing for me was to dig in and discover what it was like to have my own home.

If I think about the best attitudes for me then ...  would have been be gentle and calm and not to react with too much shock ... but we are what we are and in close relationships its not always a matter of self-control.

Those periods were in my 40s ... since then I have gradually come good .. but it was very gradual... took about 10 years.

Sometimes it can be a good idea for her to take up a hobby that she used to love ... eg knitting anything ... in which she has old habits and skills that may come to the fore and give her more confidence.

[Ezzmayj]

Hello Daughter74.

My Mum is in a somewhat similar situation and I totally understand what you mean when you say it's distressing.  Sometimes my sister and I get so upset about it we cant even answer her calls somedays.

Mum had about 20 treatments last year (after several past rounds of ECT) and it messed her up so bad she thought it was 20 years ago and that the hospital was her workplace (she was a nurse).  We had to put our foot down and say no more to the doctor who insisted that ECT was the way forward (he's a cretinous, egotisitical, borderline negligent pr^ck).  Her memory and cognitive functioning had been slowly deterioritating over the past few years but that tipped her way over the edge.

Is your Mum having ultra brief ECT? Mum was originally having right unilateral ECT which destroyed her brain, but the ultra brief seemed to be less invasive.  After ECT was done Mum had a series of neuropsychological tests to see if she had dementia and it was determined she did not.  The docs decided that her memory issues were a symptom of the depression - but tbh with the amount of meds Mum has been on for 15 years (it's outrageous) it's difficult to believe that hasnt been a contributing factor.

I wanted to ask for you to elaborate on what you meant by "deem" she has dementia?

Now Mum's having TMS treatment and while it hasnt been 100% effective it's definitely been less disastrous than the ECT.

So there are a couple of things you could do to help your Mum:

1- Ask what type of ECT shes having and do a bit of research

2- Ask if there is an option for TMS

3- Ask if she can have a neuropsychological assessment (one of these was $1200 mind you).

4- Ask for a list of what medications your Mum is on

5- Dont be afraid to ask for a second opinion once your Mum is out of hospital.

Hope this information can be helpful and I'd be grateful to  hear more about your journey, and if it helps you share more of mine.

[ivana]

Has your Mum had an MRI or blood tests for things like Hypothyroidism?

[Daughter74]

Thank you for your help and information. It sounds similar situation to my mum.
I'm not sure what type of ECT my mum has been having. They don't tell us anything. Can you tell me what is TMS?
My mum is not well enough to tell me anything, I'll have to ask the dr for the information. I really appreciate your help.
Thank you.

[Daughter74]

I'm not sure? I know she's had 2 x MRIs.
And she does have a thyroid problem.

[Ezzmayj]

No problems, it has taken us years to learn how to, and the need to, ask questions.  You could try asking to speak to the Nurse Unit Manager in her ward to get the lowdown on the treatment- doctors are notoriously hard to pin down.

Either way it is 100% your right to ask for this information and usually theyll be more than glad to share it!  Especially at this time when your Mum isnt at her best.  Don't let a cranky looking nurse tell you shes too busy - sometimes they need a reminder of how hard it is for family memmbers to understand the complexities of mental illness.

TMS - I don't know an indepth amount about TMS but it's a relatively new form of treatment that uses magnets instead of electricity to stimualte the brain.  You can read more here:  https://en.wikipedia.org/wiki/Transcranial_magnetic_stimulation. Depending on where your Mum is (Im in Sydney) she may be able to find a clinic that offers it, although of course I dont know her situation so it may not be suitable but worht looking into!

We went years before we felt confident enough to question Mum's treatment - it's such a minefield navigating the mental health system, doctors egos, and then of course interfering in a loved ones medical treatment can be precarious!  But by the sounds of it its totally appropriate for you to step in and find out as much as you can about your Mum's treatment and also about community support.   I wish we'd done so much earlier.

How long has she been sick for?  Do you have a support network around you?  Was she having cognitive functioning issues before the ECT at all?

[Daughter74]

She's been sick for 3 years, but in hospital 5 months. I have my family as support.
Yes she had problems with her speech that's why I originally took her to the dr. / and neurologist. (Before she was admitted to hospital at the Central Coast)

[ivana]

Hi Daughter74,

I hope your holding up alright.

Is your mum currently taking any thyroid medication?

Is there a reason why the doctor/s don't thing the Psychiatric and Cognitive symptoms are due to her thyroid condition as as you probably already know they can cause these types of symptoms?

Regarding possible Dementia-a person can still have Dementia even if their MRI is normal and also even  if their Neuropsychological testing is reported as normal because the reporting of Neuropsychological tests can differ according to who the Neuropsychologist was who did the testing.

PET scans (using FDG) can show if a person has Dementia when they have had a normal MRI result but its not very easy to get a brain PET scan ordered in Australia and you would really have to be persistant and demand or "beg" it of the doctor.

Do you know if there is a Neuropsychiatrist in the hospital where your mom is at as it seems that would be of more help to her than a "normal psychiatrist" as often Psychiatrists can get tunnel vision and only diagnose with the DSM and forget all the other "physical" illnesses that can also cause Psychiatric symptoms?

If you dont mind the question,are you able to elaborate on what your mothers speech symptoms are?

Does she also have any movement/motor symptoms or anything else?

http://www.ncbi.nlm.nih.gov/pubmed/21152840

http://www.hindawi.com/journals/jtr/2012/590648/