Friends, Family & Carers Forum

[Ezzmayj]

Hi everyone,

Our Mum was diagnosed with Bipolar/PTSD around 15 yrs ago now. In the past 3 years her memory and cognitive functioning has deteriorited so badly that this is impacting her quality of life far more than the depression/anxiety that has debiliated her for so long.

Mum has had a psychiatrist for the past ~5 years who is mostly only interested in treatments to go on a script,  Mum is on different types of anti-anxiety, antidepression and sedative meds and has had many rounds of ECT which we had to force her doc to stop because she became delusional (the doctor wanted to continue even though she thought she was in a different city/decade and worked at the hospital shes a patient in).

After expressing our serious unhappiness with Mum's treatment she finally got put into a Depression group and we have got her seeing her previous psychologist behind her psychiatrists back.  Mum also has had MRI scans, SPECT scans and neuropsychological assessments- all clearing her of dementia but also not giving a reason for this rapid deterioriation.  It's difficult not to think 15yrs of meds and ECT has an impact....

The problem now is Mum's memory is so bad that she cant remember to go to the appointments, she is constantly confused about what day/year/month it is.  She has missed her group sessions two weeks in a row as well as several appts with her psychiatrist and despite our best efforts as a family to manage these apppointments we cant be there to take her to every one.  Even calling her 20min before last week failed.

We bought a big clock that has the day, date and time on it but she always forgets to look at it and gets herself into a very bad state trying to figure out appointments and ends up with scores of post-it notes that make no sense, becomes anxious and cant sort it out.

This morning she called me and my sister, one after the other, to ask about an appointment thats not until next week and when I asked if she'd checked the calendar clock she said she thought that it was probably wrong because it didnt "match" her paper calendar. Where do we go from there???

She admitted that she has been feeling depressed this week and when I asked why she didnt tell us she said "I thought it would go away" and I said to her that she knows thats not how it works and her reply was "Shell be right".  She won't be right- it hasnt been right for a very long time. 

It's extremely frustrating for Mum to have that attitude (even though we are well aware that the illness is talking heretoo)  and she doesnt seem to have any comprehension whatsoever about how painfully and drastically this is impacting the lives of her children - probably because she has so many dark thoughts swirling around her head that she cant process and there isnt room to think about anyone else. 

It's heartbreaking to see a once vibrant and intelligent mother turn into a dazed shell with no emotions, no opinions, no motivation to better her quality of life.  Most of the time it seems she doesnt acknowledge/appreciate that we go out of our way to help her with treatment and life in general and seems to think that our lives are all hunky dory.  It's very difficult not to become resentful in this situation as I'm sure many of you can understand being carers. 

A good example is on Christmas night.  Mum rarely drinks any more than one glass at a time but on Christmas day she had more than a few and called my sister and I at around 9pm hysterically crying because "christmas wasnt the same as it used to be with you girls around" and that she was sad that she hadnt seen us.  She did see us - she just forgot about it.  We all had breakfast together and then for the first time in several years my sister and I werent there for lunch - I got to spend my first christmas with my partner of 3.5 yrs, and my sister took a much-needed trip down to the coast with her friends after our family breaky.  It felt like Mum's illness took the joy in these precious moments away from us and made us feel like we didn't deserve them.

We have given so much of our teenage/adult lives/hearts to our parents illness (Mum and Dad were separated 20yrs ago, Dad got leukaemia 15 yrs ago, and died 3 yrs ago) and when situations come up where Mum says she wants us to "stand on our own 2 feet" I want to stomp my feet and scream.

We are absolutely at a loss as to what we can do now - and are desperately seeking advice on what sort of treatment we can seek to help Mum manage her memory/brain issues.  It has worn our family so thin and it seems this has overtaken the urgency of psychiatric treatment because whatever treatment or help she gets is forgotten within minutes.

I am very grateful for any advice and even just to get this out in words!

[NikNik]

Hi @Ezzmayj
I'm so sorry to read about the predicament you're in. You're right, it's heart breaking, exhausting and everything in between.

Unfortunately I can't diagnose your mother or give advice on treatment. It sounds like a very complex illness.

But to reduce reliance on you and your sister, have you investigated what community supports are available that will go to her. Community care team? Community nurse?
It's different for different areas - but to just have someone who can check on her, and your mum not having to worry about remembering to go anywhere.

While it might not solve all the issues around appointments, it might take a little pressure off you?

Besides her forgetfulness with appointments, is she able to live in her home independently (ie: is she remembering to do the shopping and feeding herself?)?

[ivana]

Hi @Ezzmayj,

Sorry that things arn't getting better for your mum.

Would you have a copy of the Spect scan and would you be able to read what it said?

You might know this already,but its important that patient's get a copy themselves because sometimes there can be results on these types of tests but the treating doctor might declare them as being insignificant.

Was there any offer/mention of your mum attending a Memory Clinic or appointments with a Occupational therapist as some hospitals offer these to people with memory issues? 

[Ezzmayj]

Hi guys,

Thanks for replying!

Unfortunately I dont have the SPECT results - only the neuropsych assessment.

I know all of the tests said there was no signs of dementia and the psychiatrist concluded that her memory issues were a symptom of the depression.  But I just dont believe that.  Theyre far too severe and dont increase or decrease when Mums more or less depressed.

I will definitely look into the memory clinic - thanks for the tip!

Dr has recommended Mum  get another neuropsych assessment soon, which is $1200 a pop....

[ivana]

Get a copy of the Spect scan from the place that did it to read for yourself.

To my awareness,if you are in Sydney,you can get Neuropsychological testing on medicare at Prince of Wales hospital if she sees a Neuropsychiatrist there and the Neuropsychiatrist decides to arange it.

Has your mum ever had any other illnesses such as Hypothyroidism or any physical symptoms?