Help!! Mum is 88, I am 68 and she only wants me!!

[MrsAverage]

Hello Joan

There may be a clue in that it gets worse after tea, google 'sundowning'

Also it might be worth having a deeper discussion just checking which 'home' she is wanting to go to. My Mum was happily settled in a residential home for 2-3 years. Now dementia is setting in and she forgets that she doesnt live in her flat anymore. Sometimes she describes her house before the flat and sometimes her childhood home. In her mind they are getting blurred into one.

I was chatting to a neighbour just the other day whose husband had dementia for 19 (!) years and I asked her how she responded to him. She said never disasgree with them as that gets them agitated, and the best repsonse was just "oh" in various tones such as "oh really "oh dear" "oh how nice""oh how sad" or often just "oh"

It's sad and distressing but I do think the distressed and argumentative phase passes in time. I've no experience sedatives or medicinal help, sorry

Kr
MrsA

[MrsAverage]

Joan. This sounds so like her
https://www.dementiauk.org/understandin ... undowning/

[bowlingbun]

Is it right to give some sort of medication to ease the distress?
After years of battling with Social Services it was really affecting me, so my GP has given me something to help me.
What's the difference?
Mum's "wellbeing" should be the priority for all concerned, and as she would feel better if she wasn't distressed, surely that would be in her best interests?

[Pet66]

Hi Joan
In my humble opinion, its better for patients to have some medication to help with distress, and all that goes with it, than carry on having awful times. The mildest prescription will be advised, and it will be much better for all concerned, mainly your mum, but for you to feel better too, because she does.

[Joan_1501]

Thank you Pet, bowling bun and Mrs average for your understanding and kind advice..

Mum still has lots of insight and knows her home address. I think this makes it worse somehow. I am going to Google sundowning and also the site you told me about Mrs Average.

The CPN is due to visit mum on the 11th March so fingers crossed that she will be able to do something for mum.

I am in the process of starting preparing her bungalow for sale as she is self funding. She would be horrified if she knew!

Also going to try going down the continuing health care route , although when I hear of how poorly your husband is Pet and the struggles you are having I'm not holding put much hope. But I do have to try.

I will keep you in the loop 're the outcome of the CPN visit.

Thank you all again for your support.

Joan xx

[bowlingbun]

Joan, if you are going down the CHC route, be sure to keep a daily diary of how mum is, treatment she needs, etc. which you can then use as evidence. It you have an assessment now, even if mum doesn't qualify at the moment, then any subsequent assessment will highlight any "deterioration" which is significant for CHC.

Emptying out my mum's house was one of the hardest jobs ever, so many memories as they'd lived in the same house for 50 years. I found it was easier in short bursts. After a couple of hours I had run out of determination, so be kind to yourself.

Maybe invest in a few "Really Useful Boxes" to put papers in that you need to keep to go through later. They are also good for fabrics and books, vermin proof and waterproof so can go safely in a garage, and they stack well. I used these boxes for my business, and emptied a few to use at mum's.

[Pet66]

Joan, if you can download the CHC decision support tool 2018, it will give you an idea on what is required. Then you will be able to disagree if you feel the powers that be are ' downgrading' which is what they try to do!
Yes BB is completely right in advising you make notes of all behaviour and health issues. You are allowed to read your mums records, whether staff like it or not. Also,you need to bang on to staff to record every incident, because they can become complacent.

[Chris From The Gulag]

CHC ?

Main thread :

https://www.carersuk.org/forum/support- ... here-35998

Everything you need ... and more ... under one thread.

Starting from scratch ?

Professor Luke Clements's video ... highly recommended.

[Joan_1501]

Hi Bowling Bun and Pet.

Yes, I am packing things up in short spurts as you suggest. But still leaving some ornaments on display so that when I do come to show potential buyers around it will look like a home and not just a shell.

And yes I am keeping a diary like you suggest. I must say the sister in charge is really helpful and says that she will support me all the way on applying for CHC. So that's good.

I'm also in the process of applying for mum's medical records as well as her hospital records . Like you say even if mum doesn't qualify for CHC initially I will have plenty of evidence for a future application.

I've even got a copy of the DST (printer getting really hot from all the copies!!!!!) and a copy of the "how to get the NHS to pay for care". Acquired the latter from Alzheimer's UK along with other leaflets/booklets. You make it I probably have it!!!! Just need to print something out on sundowning.

So have plenty of reading material!!!

Big hugs to you all.

Finally, how is your husband Per?
Joan x

[Joan_1501]

Well, I am here again to update on mum. She has now been away from home for six months, five of those in the nursing home and whilst a few weeks ago I thought she was settling my last three or four visits have been as bad as when she first went in!!

Mum is VERY vocal and demanding to go home, saying that I have placed her in an institution and that any other daughter would be pleased to look after their mother etc. etc.

Any outsider listening to her would wonder why she is there and sometimes I start to doubt myself, thinking should I let her return home. But then my "other head" tells me that if I did this then I would be back to the daily visits, blood everywhere from her messing about with her leg wound, laundering daily, sitting with her feeling resentful that I can't do things with my husband, and worrying all the time if she is ok when I'm not there. Her phoning me in the night etc. etc. No I can't do it! !! But I do still feel guilty and yes mum is right She is living in an institution and would be happier in her own homw. But I came to it all. Well I could but at the expense of my own life and that of my husband.

Anyway rant over. Feel better for typing all this.
Hugs to you all.
Joan x