Help wording a note for Dad to show the Psychiatrist

[Mathsdebator]

My Mum had a psychotic episode a year and a half ago and had been under the crisis team / been seen by a psychologist and a psychiatrist since

She's had excellent care but things aren't improving. We've noticed some real cognitive changes but the Psych just seems keen on dosing her up. She's on high strength antidepressants etc and he's mentioned Lithium as a next step.

He almost sectioned her last year as she'd stopped eating and is down to 6 stone from 10.

She's 75, had MH problems all of her adult life - mainly depression and anxiety

We're concerned that she's got dementia and dad has raised this but the Psychiatrist just keeps saying he thinks it's depression and upping her meds.

Mum has an appointment on Friday. Dad will be going but says he can't raise stuff whilst Mam is there. I want to make a list so he can hand it over. Would that be ok?

Dad isn't coping well - and I work full time. Our concerns include:

1. She doesnt walk, she shuffles.Something I've noticed in people with dementia
2. She can't hold a conversation. Literally forgets what she's saying mid sentence
3. Forgot Dad's birthday - handed over cards family had given her the day before but had no recollection of it on the day. Asked where the cards had come from and why he had cards.
4. Doesn't eat at all unless food is given to her. Then eats very little. Is literally never hungry.
5. Has started to shake.
6. Can't remember where anything is in their small apartment. Couldn't find pans yesterday.
7. Has no interest in anything and no opinion on anything
8. Would wear the same outfit every day if not told to change.
9. Insists on wearing clothes that are too big, even though she has lots that fits.

10. Stares into space for hours
11. Can't follow a TV programme - not even soap opera she's been watching for years

She's 75 and was fit and active until a year and a half ago.

I'm sorry that you are going through this. My mum had dementia and shared many of these symptoms.

I think your list is very clear - including the last sentence. That's important.

I'd print your list out as it is and send it along, though personally I would put the shuffling lower down the list, as it seems to me less significant than the other items.

Best of luck with the appointment. Hope you and your dad can be heard. . .

I'm sorry about the deterioration in your mum's health. A couple of things jumped out at me - she shuffles when she walks and has started to shake. You could ask the psychiatrist if she needs evaluating for Parkinson's, which has cognitive effects as well.

Thank you. She's always struggled and we have a difficult relationship. O can't be there and Dad just keeps telling the doctors she's not getting better but won't go into detail.

The Doctor just keeps saying he wants to gwt on top of her depression and that he's not worried about cognitive decline but we very much are.

I've no idea how much the drugs are masking - he's upped them every time she's seen him.and is ow on max dose which is worrying as he said some of them are quite dangerous with regards to blood pressure etc.

Re the shuffling. Leave it on the top of the list. Shuffling was one of the early symptoms displayed by my FIL before being confirmed as having dementia (as noted at an assessment, not us!) The medic will probably spot it anyway but leave it on your list just in case. Sorry you're joining this particular club.

@Mathsdebator this is almost identical to my Dad (including the always been difficult, solidarity).

We had to move him into a nursing home because he also has diabetes so not eating and forgetting medication was more immediately life threatening than starving himself to death.

We still have no diagnosis and I’m thinking of sharing a list to help the medics. I’m so sorry you and your Dad are going through this but I do think your idea to provide a list is a good one.

God, she's drilled it into us over the years that she'd never forgive us for putting us in a home. There's been a lot of guilt - which is why I feel awful admitting it but I'm quite hardened to it all.

My Dad is really struggling though.

Thanks - this hasn't crossed my mind before. I have a cousin on Mam's side who has recently been diagnosed with something similar to Parkinsons.

Personally I would phone the CMHT and relay your concerns to the secretaries. They can add a note to your mum's file and pass it on to the consultant ahead of the consultation. This avoids your dad having to pass over a note in front of your mum!

It is very hard to do the putting them in a home (and I am not yet forgiven a year on) but I chose to be ‘bad cop’ and I know it was the right thing and we were able to choose a nice home that in time he will appreciate.

I’m not sure what stage things are at for your Dad (and to be very clear - I do NOT suggest or expect you to do any more yourself.) We reached the stage where the family supporting my dad were all breaking under the strain of propping up ‘independent living’.

I hope some form of help is accepted for your Dad’s sake - do they have a cleaner, a gardener, have they had any carers to give your Dad help and a break?

I definitely should / could have done this - the appointment is today though so hoping the note will suffice this time.

Her Crisis nurse used to ring me (and it was her that suggested cognitive decline months ago and pointed out her shuffle - they only go once every six months now though since she's been linked with the Psychologist and Psychiatrist.

No big advice but best wishes for today. Don’t be afraid to ask why they don’t think dementia is a possibility. Medication induced Parkinsonism may also be in the mix.

Dad's been and dropped the note in with the receptionist so hopefully the Dr will have chance to look at it before their appointment.

Dad was quite reluctant - said it was all very bleak. I said it's honest - she's not getting the right support without the honesty!

A quick update and a question in case anyone is more clued up than me.

Mam has had a brain scan 10 days ago (one where dye was injected into her first, she was scanned 3 hours later) and blood tests on the back of my letter to the Psych.

Dad was told results would take a month. He's had a voicemail today with an appointment at the same place for Tuesday.

We're assuming that this means they've found something - would that be a sensible assumption based on the speed and her symptoms?

Not being emotional- more pragmatic in that I've offered to go to the appointment. Dad thinks it's not necessary but I will definitely go if thoughts are probable negative news.

I’m afraid I wouldn’t offer - I would tell your Dad that you are going to be there to support them. It’s possible that it’s negative, or maybe they just had a cancellation. Either way, he is going to need help to take in what is said. BYW it’s usually fine to record the appointment so that you can remember things later - some health staff will be reluctant to be filmed but audio recording is usually fine, but just ask.

I’d go, if it’s good news, it’s good for you to be there. If it’s bad, it’s a second set of ears to take everything in.

Back to update. Mam got a dementia diagnosis today. No indication of type or stage, they've given her an appointment for next week. They initially said the scan showed some shrinkage but they weren't overly concerned and continued to just treat the depression.

She had a memory test yesterday in preparation for her psych appointment today and they said the poor results, plus their observation of her shuffle and the scan meant they were diagnosing.

I'm waffling. Reading lots and making a list of questions for next week. Thanks again everyone for the original advice. Just goes to show that sometimes family (even those with weird dynamics) know best

@Mathsdebator thanks for updating, I agree that family often know the person best and sometimes you feel like no one is listening - and the wheels turn so very slowly.

I hope you and your Dad are doing okay and things are relatively stable.

We eventually got a diagnosis too, Parkinson’s and Lewy Bodies. Many resources are helpful to research, Dementia UK and Age UK and NHS and NICE guidelines. But the wonderful people on this board on mumsnet have been my best resource for truthful experience, advice and solidarity. Do start threads with any big questions you need answering - and consider dropping into the Cockroach Cafe if you need to vent.

So did my mum. We held off until carers couldn't cope any more, by which time her quality of life was dismal and she said she didn't feel alive 😥

The home we 'put her in' was fantastic, she picked up really noticeably and it was clear she'd have been far better off there from the beginning of her illness.

She died there - peacefully, in comfort and surrounded by kindness.

Thank you. I've taken the day off to go to their appointment. The news was very much delivered in a matter of fact manner and they were sent away to try to to take it in so I've no idea of where we're at. I have questions about what 'type' of dementia, what stage etc.

@Mathsdebator just want to give you a little solidarity response. At some point you might get a bit more information in a letter but it’s frustrating to not get a diagnosis that you can then research. Or that is more meaningful for your parents.

I am an analyst and I need to plan - I find it hardest when I feel like I’m solving yesterday’s problem because I didn’t have enough information. Have your parents given any indication of how they feel - and whether it might change their minds about getting a little paid help in?