mum newly diagnosed.

[pottydotty]

hi, just found out my mum has early dementia, not sure which type yet i will have to wait to see her at the week end to find out. both her and my dad are terified about the future etc,

where do you start as there is so much info to take in. any tips id be greatful for.

thankyou for reading this. x

 

[hollycat]

Hi pottydotty and welcome to TP

I am sorry to hear your news. It is initially quite difficult to come to terms with. It is only 3 months since my mothers diagnosis.

HOWEVER, you have made a brilliant start by finding TP.

My hubby and I have found the WHOLE alzheimers site fantastic, for example:

1. Talking point

2. Leaflets to read

You really are amongst some lovely and very experienced people.

Things we have done since the diagnostic include coming on here, doing a lasting power of attourney, visit by occupational health therapist, downloaded ALL the leaflets on this site and read them all, started mum on tablets, moved in with mum to care for her and applied for attendance allowance with a view to obtaining carers allowance.

This is by no means a definitive list as we have also read a lot of information away from this site about CARING and generally looking after ourselves.

I hope this will help you from a practical point of view.

From a supportive point of view, this place is all we need for the moment.
Regards hollycat

 

[grove]

Hello Dotty , So sorry to read about your Mum its all ways a Nasty Shock to have to be Diagnosed with Dementia BUT good on the Dr's etc for making a "Early Diagnoes " as Treatment can then start at once etc . You do not say if your Parent 's went to the Memory Clinic where most People go to be Diagnosed ( my Dad has Mild / Moderate Dementia & did a Simple Test at the G P 's ( Mum went with him as Dad did not do well on his own at the G P 's before ) Dad was diagnosed at the M Clinic the G P made a Appt for him ) Sorry getting away from your questions ! ! See below please :

* The Best thing i did was to get in Contact with "Our " Local Altz Branch we have a Family Support Worker very helpful & Social Activities for Parents to take part in

* Click on "Top of the page " Under Altz S Fact Sheets ......... they have a A- Z & have a Special 1 for people like your Parent's ( sorry for get what its called ! ) You can Print the Sheet Out They are very useful

* Do you live in the same Town / Area as your Parent's ? , would help & do you have a Carer 's Resource in your Mum 's Town ? they are Fab at helping the whole family !

Sorry not much Advice ( am only a Extra Carer & Mum likes to do all the Caring ) Positive Vibes for the Week End & what ever type of Dementia your Mum has you all ways have a lot of Support & Friendship on T Point !

Big Welcome to T Point & hope you find it as helpful as i do ! ( keep on Posting & you will all ways have good Advice on T P ! )

Take Care

Love & Hugs Love Grove x x

 

[Hollyxo1]

Hi pottydotty.
I was 18 when i found out my mum was diagnosed with Early Onset Fronto termperal dementia 21/2 years ago. She was only 57. At first I was devastated and didnt know who to turn to. I know i always had my dad, but he was so stressed and down trying to deal with mum's everchanging behaviour. We looked after mum at home for 2 years before we could not handle her behaviour anymore. In the first year i didn't feel like talking to anyone, i found it really hard to express my feelings and thought the whole situation was unfair. I stumbled across TP and found it so incredibly helpful. Although i couldnt talk to people in person about my mum, the people on this forum are amazing and gave me great support and advice in the beginning!

Mum is now in a dementia ward in a nursing home, which was horrible having to place her there, but we know she is getting 24/7 care there. It is a horrible disease and im so sorry you have to deal with it. Nobody deserves it. But you will find great support on here.

Hope you are well
x
Holly

 

[FifiMo]

PottyDotty,

Welcome to Talking Point although it is always sad that people have to come and find us here. I thought you might like to take a look at this thread as it might help you and your dad understand ways in which you can help your mum by changing the way in which you communicate with her. By understanding for example how people with dementia perceive things and how perhaps they can no longer deal with long rambling discussions and be able to extract the bits that are meaningful, it can mean that they can be helped to continue to function in a more independent fashion for longer periods of time. http://forum.alzheimers.org.uk/showthread.php?30801-Compassionate-Communication-with-the-Memory-Impaired&highlight=communication%20memory%20impaired

Another thing that you might find very useful is for you and your dad to start keeping a diary. Make a note of all the little incidents that happen and what time of day they happened and how long episodes lasted. This can become a useful tool for you to take to any visits with a GP or a Consultant as it gives them day to day insight of what is happening and also how things may have deteriorated over a period of time.

You don't say what challenges your mum faces right now but the emphasis should be on reassuring her, telling her that the family will be there to support her, that she can still do all the things she used to do. There are some practical things that can help - eg get her used to using post-its as memory prompts around the house, maybe install a white board where messages can be left or notes made of things she has to remember, get hold of some wrist bands that you can write your or your dad's mobile number on so if she gets confused and lost if she is out and about then someone can phone you immediately.

If you let us know what kind of challenges your mum is facing right now then i'm sure you'll get a whole host of suggestions from the people on here on how you can help her.

Fiona

 

[EssexGirl]

Keep a Diary

Having spent the last 9 years helping my partner look after his dad who had dementia, I would advise keep a diary of your contact with 'official-dom'.
As dad owned his own home and had some small savings we had to fund his care (we needed carers in 4 times a day for the last 2 yrs, costing approx £900 per month) and this involved numerous meetings with Social Workers, Occupational Therapists, hospitals etc etc. They can be seriously poor at responding to queries, putting into place promised arrangements etc and it can be hard trying to think back for details and dates when you have so much else to think about. I would however like to praise our carers they treated dad with such care - despite the cost to us they work for basically a mimium wage!
Definitely get an LPA (Lasting Power of Attorney) done, they're not cheap but well worth it. Gives you official control of things when they can no longer do it for themselves.
Make sure you get regular respite for yourselves - you and your mum will need that break, you must have some time to take a breath and just be you.
Good luck.

 

[pottydotty]

Thank you all so much for your replys i really appreciate your advice and support.

mum was diagnosed at the memory clinic, she had a brain scan also, she gets confused, forgets things, repeats herself and upset. sadly i live 2 hours away and cant move to be closer at the moment. so all of the care is on my dad. i try and support as much as can on the phone and travel to see them monthly but feel torn as its not enough.

i will look through all the leflets etc and find out what help is available in there area.

i hope you are all ok and once again thank you x

 

[Meercat]

Sometimes, those who are further away from the situation can see things sooner and set things into motion to help sort it. I live a plane ride from my M and yet I set up the initial doctor appointment, memory clinic, day care, and power of attorney. Often the immediate carer has so much on their plate it is difficult to organise meetings or collate information for appointments - you can be a big support for your dad doing this.


Don't worry about been far away - you are being an enormous support - going on this forum will help you to make the best decisions to support your Dad with your Mum.

Best wishes
Meercat

 

[Water drinker]

My biggest tip is to set up as many routines as you can NOW whilst you still can. Think ahead by reading the threads on here as to the problems people have had and put things in place befoe they happen as trying to teach new things, no matter how simple, is impossible. Change has very much seen dad take turns for the worse so we got them over and done with early in preparation,

 

[London53]

hi, just found out my mum has early dementia, not sure which type yet i will have to wait to see her at the week end to find out. both her and my dad are terified about the future etc,

where do you start as there is so much info to take in. any tips id be greatful for.

thankyou for reading this. x

Sorry this a bit late as a reply, but I only occasionally look at the threads. For what it's worth, one major mistake I made in the early days of my mother's dementia was to make any changes in routine or in any part of her life, really. An example - I bought her a new teasmade, when she should still have been able to cope with it - and had I bought the same model, she'd have been fine. As it was, she had to re-learn a couple of basics - knob in different place, handle of teapot felt different - and it threw her completely. Also, my son moved her kitchen kettle, as he felt it was dangerous where it was - another mistake. We soon learnt to buy the same slippers, leave the diary in exactly the same place and so on. It helped for quite a while until she really deteriorated.

 

[clueless]

clueless.

​

hi, just found out my mum has early dementia, not sure which type yet i will have to wait to see her at the week end to find out. both her and my dad are terified about the future etc,

where do you start as there is so much info to take in. any tips id be greatful for.

thankyou for reading this. x

found out about my mum having Alzheimers just before christmas. The biggest problem for me and my family is coming to terms with what is happening. but at least we know there are people out there who are going through the same thing. YOUR NOT ALONE OUT THERE!

 

[Lorraineg]

hi, just found out my mum has early dementia, not sure which type yet i will have to wait to see her at the week end to find out. both her and my dad are terified about the future etc,

where do you start as there is so much info to take in. any tips id be greatful for.

thankyou for reading this. x

Hi my mum was diagnosed a year ago with alzheimer after years of trying to get the doctors to diagnosis her. She constantly says people are taking her picture and says the doctor keeps telling her she as cancer which is untrue. I have printed out things like you have not got cancer of any form and nobody is taking your photo, IT seems to help her and reduces her stress. Also when I take her out on the bus I let her know that we are getting of the bus at the next stop, at the beginning I had trouble getting her off the bus but since I have started telling her before we come to the stop she is fine. Nobody medical seems to help, we visit the doctor every six weeks on his request but because I will not let her take anti sycotic tablets, the specialist do not come anymore hope you get on better.

 

[comane]

Sorry this a bit late as a reply, but I only occasionally look at the threads. For what it's worth, one major mistake I made in the early days of my mother's dementia was to make any changes in routine or in any part of her life, really. An example - I bought her a new teasmade, when she should still have been able to cope with it - and had I bought the same model, she'd have been fine. As it was, she had to re-learn a couple of basics - knob in different place, handle of teapot felt different - and it threw her completely. Also, my son moved her kitchen kettle, as he felt it was dangerous where it was - another mistake. We soon learnt to buy the same slippers, leave the diary in exactly the same place and so on. It helped for quite a while until she really deteriorated.

I strongly agree with the above. At all stages such memory as remains can be used to the full and there is no possibility of teaching anything new. It has been suggested that I move to a smaller house but that would be a great mistake. This is my wife's comfort zone. She knows her away around the house and when she wanders out to visit our neighbours she can find her way back if they are not there and they can bring her back or ring me to tell me where she is. She goes out to look for imaginary children that she is convinced she is responsible for but always comes back in a short time only to go out looking again in the recreation ground. Until a few weeks ago she would make tea all day long but in the last few weeks she is getting more confused about where things are in the kitchen but can still boil the kettle and fills cups with hot water as she cannot find or recognise the tea bags. I believe the most important thing one can do for Alzheimer's sufferers is to keep them happy and adjust to each downward step as it occurs. The memory is gone and she thinks she is a young girl and that I am her father but underneath she is still the wife I have been with for the last 54 years.