My Mum

[mumoftwins]

Hi, I am new to the site. I am currently having diiculties with my mum, waiting on a diadnosis for what we think may be Picks Disease, (fronto lobal dementia), I am finding it very hard to deal with her I am am an only child with no support network, I need some coping strategies:

[sue38]

Hi and welcome to Talking Point (TP). I'm sorry to hear about your mum and hope we can be your support network

A couple of factsheets that might help:

What is FTD (including Pick's Disease)?

Unusual Behaviour

Can you tell us more about the things you are struggling to deal with? I can't promise we'll have the answers, but we will understand.

[Mo_N]

Hi mumoftwins,

Welcome to TP. I'm sorry you have had to find us but it is a great place to get information, advice & support. I don't know how I managed before I found it.

I don't have any experience of Pick's Disease - my mum has Mixed Dementia ( Alzheimer's & Vascular) but I'm sure there will be someone along soon that does know about it.

In the meantime there is a fact sheet on the Alzheimer's main site

http://www.alzheimers.org.uk/site/sc...documentID=167

& there is a website for a support group which may be of interest

http://www.pdsg.org.uk

Really hope your mum gets a firm diagnosis soon.
Mo
x

[mumoftwins]

Hi Sue and Mo,
Thanks for getting back to me, I will read all the info as I want to learn as much as I can. The trouble is my mum doesn't think there is anything wrong with her, but I had to contact the GP as I have noticed massive changes in her in the last 2 years. She still lives alone (since my father died 6 yrs ago), drives etc and has some friends. I started to notice her struggling with her vocabulary a couple of years ago, now she cannot find the right words at all, she has become very flirtatious (not having sex) but going in pubs (in the day) and taking men back home in her car who she doesn't know, and she doesn't realise this is wrong, some of the men are only late 40 to 50 she is 69. She has no interest in anything other than herself, she cannot hold or join in a conversation anymore and is constantly repeating herself. She has also started to spit in the street and she is such a glamourous attractive woman. Her GP referred her to the Mental Health team who now want to do a scan and we now have a physciatrist, I just feel guilty as I have shouted at her a lot before I actually reaslised something was seriously wrong
Sarah x x

[Mo_N]

Hi again Sarah,

Guilt is something everyone on here is familiar with for one reason or another
I'm afraid it goes with the territory when someone close has any form of dementia & you will often see posts referring to "the guilt monster".

I'm sure that most people will have shouted, snapped or screamed at their loved one at some time so try not to feel bad about anything in the past. You probably remember it must more than your mum by the way.

Knowing why the behaviour is happening helps but doesn't always make it easier to cope with. Accept as much help from the professionals as you can.

Your mum is lucky to have a daughter that cares for her so much.

Keep posting on here with any questions or worries there's always someone about whatever the day or time. If it all gets too much just get on here to let off steam - it really helps to get it off your chest knowing people understand your situation.

Mo
x

[SWMBO1950]

Hi Sarah and welcome

Mo is so right about the guilt - most of us have it for one reason or another. I have gone through my life thinking things are my fault - when they are not

Keep posting as there is much support and information to be found here.

Very Best Wishes

Hi again Sarah,

Guilt is something everyone on here is familiar with for one reason or another
I'm afraid it goes with the territory when someone close has any form of dementia & you will often see posts referring to "the guilt monster".

I'm sure that most people will have shouted, snapped or screamed at their loved one at some time so try not to feel bad about anything in the past. You probably remember it must more than your mum by the way.

Knowing why the behaviour is happening helps but doesn't always make it easier to cope with. Accept as much help from the professionals as you can.

Your mum is lucky to have a daughter that cares for her so much.

Keep posting on here with any questions or worries there's always someone about whatever the day or time. If it all gets too much just get on here to let off steam - it really helps to get it off your chest knowing people understand your situation.

Mo
x

[Isabella41]

Hi Sarah
I really feel for your suituation. I am also an only child so I understand in some small way what's its like to have a mother with dementia and also have no family support.

My mum is also convinced that there is nothing wrong with her but I could write a book with all her issues and the dramas over the past few years. Like your mum, my mum is totally centered on herself. She seems to have lost any ability to empathise with anyone. I don't know if this is a new development for your mum. In my mum's case she has always had a selfish nature and its just gotten much worse as the dementia has taken hold.

Please don't feel guilty for shouting at your mum. I'm sure I am not alone in saying that an awful lot of people loose their composure with their relatives when constantly faced with challenging behaviour.

I have had great support from TP and also my local Carer's Association. I have a number that I can contact the support worker at any time (reasonable hours of course). Its been so good to just be able to ring someone up who knows what I am going through. She has offered me so much help in practical ways too such as getting me an emergency appointment with Citizen's Advice to sort out problems with mum's benefits. I don't know if such a service exists in your area but it may be worth your while looking around to see if it does.

I would also contact the team responsible for elderly care in your area. They are called different things in different areas. Its good to get as many professionals on board as you can so that a picture of your mum's problems can be gained from different angles.

My Dad died very suddenly 5 years ago and since then I've been run ragged and up until very recently I danced mum's tune. I am slowly learning that for the sake of my own sanity that I have to step back and pace myself better. When there is only you there is no one to rely on when you want a break so as I've been told by the wonderful people on TP you need to be kind to yourself and protect yourself first. I ended up in hospital recently and although I can't prove it scientifically I do feel that all the stresses of being mum's only carer contributed to this.

Isabella

[mumoftwins]

thank you everyone for your support and kind words, will post soon when hopefully we have a diagnosis x

[anneporter2000]

thank you everyone for your support and kind words, will post soon when hopefully we have a diagnosis x

Hi, my mum died from vascular dementia two weeks ago. I feel extremely guilty because I reacted strongly to her shouting at me. We shouted a lot when I was a young teenager and i thought she was just doing it again. I wish I had realised much sooner what was causing it. And also got some advice. My advice is to treat her as you would anyone with a physical illness, remember how she loved you, shout and swear when you are alone if it helps, leave the room if possible or take a lot of deep breaths, but please treat her kindly all the time or you will be like me with this guilt when your mum dies.