Greetings and questions

[Aliblahblah]

My name is Alison - this is my first time on this forum, so Hello!

My Dad was recently diagnosed with dementia as well as a chronic subdural haematoma, which is bleeds on his brain.

We are still in the process of getting the right help from the NHS but things are finally, all be it very slowly, moving along.

At the moment the signs my Dad is showing are as follows:
Confusion
Trouble concentrating
Shuffling, rather than walking
A tendancy to switch off
Not hearing properly
Has trouble retaining details but still very good at maths, but he was always extremely good at maths.
He can remember things that have been of a great interest to him in life for years but day to day words and names of things he is not so good at.
He has become obsessive with checking the prices of goods.
He has started to eat very quickly, even shovelling sweets into his mouth in shops then denying he has done this. Just this week he stole a magazine but denyed doing it.
He is quite often confused by day to day conversations but won't admit this.
He has always been a very private person and is starting to lose those inhibitions.

My Mom is struggling to cope with him already, and finds herself getting very angry - and although that is understandable I am aware this is really not helping things.

I really would like to find out any advice for her, for my Dad and how the rest of the family can help and would appreciate any useful suggestions/shared experiences/advice.

Thank you all very much.
Alison

[hollycat]

Hi Alison and welcome to TP.

Sorry that you have had to find us, but now you have, the place we started off was the factsheets on the main site. I have put a link to them below. They are all a nice quick read, nothing too heavy and are a wonderful resource.

http://www.alzheimers.org.uk/factsheets

Absolutely ADORE your site name, very good choice !

Regards

[Aliblahblah]

Thanks so much Hollycat. I will check the factsheets and send them to my mom.
Thanks for the compliment re the name

[jaymor]

Hi Alison,
My husband has just started to obtain 'things' that don't belong to him. He will take sugar packets out of his pocket when we return from the garden centre where he has had his tea and cake. I never see him pick them up. He has come home from the day care centre with pencils, a marker for a white board and would you believe, a dish cloth. He has a lovely collection of pencils from Argos, lovely bright blue and some quite dull ones from Ikea. I mentioned this to his CPN and she said it was something they will do. She had seen a lady a week ago who had done her shopping and paid for it only to find her husband had a bag of scampi tucked under his arm. She was very worried what would have happened had he been caught. Nothing said our CPN the disease is understood. Glad someone understands it and we wont have shoplifting added to our problems.
Jay x

[Aliblahblah]

Thank you for your reply and the humour injected into it - we did have to joke that we should give my Dad a shopping list as he's so stealth at taking things - honestly I think a dark/twisted humour is the only way to get through something that appears to be so darn cruel.
Good to know he won't get into trouble for it.
I am wondering if there is any sort of ID he can carry in case he is on his own and does something -he won't know to tell them he has dementia?

[Hbick]

Hi Alison
My dad has also just been diagnosed. The thing about your post that struck a chord was you said your mum was finding it difficult to cope already and was getting angry. That is what's happening with my mum. I understand her getting frustrated and even angry. What I am finding really hard is that she is getting angry with my dad and seems to be blaming him for his illness, as though he has done it on purpose! She keeps making really bitter comments to him/about him relating to the fact he can't help her around the house/do the garden or drive her around anymore. It might be his illness, but as far as she is concerned it's all about her at the moment!
Btw I think the thing about the ID so people will know the score if incidents happen in shops etc is brilliant. My dad can't get out on his own anymore, but great for those that are.

[jaymor]

Hi Aliblahblah,

I carry a card that says I am a carer with details on of who I care for and who to contact should something happen to me. My husband carrys a card saying he has dementia and has telephone numbers on it for people to contact should he have a problem. I have a label type thingy on my key ring too that says I am a carer and hopefully this will make someone look in my purse and find my card with details on. All these were given to me by the Carers Association. Once a month I attend a carers meeting and we have also been supplied with a key to allow my husband to use dissabled toilets though the one and only time we tried to use it it would not work. Google Carers Association and take a look what information they have. They may well have meetings that you can attend.
Jay xx

[FifiMo]

Hiya Aliblahblah, love your name!

I wondered if the information in the attached thread might be of use to you and your mum. It explains things from the perspective of someone who has memory problems and gives advice on how to tweak the way you communicate with this person so that it makes it easier for them to understand things. http://forum.alzheimers.org.uk/showt...emory-Impaired

If your dad shops at the same store regularly you could perhaps have a chat with the manager and explain that your dad has dementia and challenges associated with this. You could leave your number so they could contact you if he's having a particularly bad day. If the store is forward thinking then they might have someone help your dad with his shopping and accompany him round the store. This would perhaps be a better approach than having your dad stopped for suspected shoplifting and the shock and stress that that might bring to him. Until they establish he has dementia, he would potentially be treated in the same way as any other shoplifter.

Fiona

[jackw]

I too recognise the angry Mum situation. My Mum & Dad have always had a fairly argumentative relationship but I can see now how much it distresses and confuses my Dad (the one with Alzheimer's) when Mum disagrees with or criticises everything he says or does. But she gets really upset and annoyed when I try to suggest to her that he needs more gentle handling and I do see her point: she's the one who is having to deal with him all day every day.

This is no solution, I know, just an acknowledgement that carers are only human and have their own needs and personalities.

[rajahh]

well I have experience from both sides. My father used to get very angry with my mother and it always upset me. In the end he did take on board fully that it was not her fault, and he did care for her after that. But it was alwways easy for me I just loved her , end of story.

However now it is my husband, and I think some of it is that I am scared of being totally responsible for the house, for shopping, for organising, for medication for everything, and I am angry, and resentful. I try to talk myself out of this anger, but it lies there and raises its ugly head at the slightest thing.

I hate playing " make believe" and although I do try not to correct him it really is almost impossible. I do not think y husband is ever aware that I am angry or resentful but I know that I do have these emotions.

It is very very hard when you are the 24/7 carer.

Jeannette

[Butter]

I think everything Jeannette says makes the point that I would make - observing a couple coping with dementia is TOTALLY different from being of a couple coping with dementia.
I too speak with all too much experience.

[Aliblahblah]

Thank you all so much foryour valuable advice and information. Lots for me to look into and check out. It's very interesting (and heartbreaking) to read your stories and experiences. I feel a bit like a fish flailing about out of water trying to work out what to do. It is almost of comfort to know that my mom's reactions to my dad are quite human. I was finding myself getting angry that she too was blaming my dad. It's such a mean disease in all it's forms. I wish you all the best of luck. Xx

[jenniferpa]

I think sometimes that that is the strength of the forum: explaining that what you are experiencing is, if not common, not unheard of. I'm not a subscriber to the "misery loves company" POV, but there is a definite advantage to knowing that other people have seen what you are seeing.

[Aliblahblah]

It's very true - I wouldn't wish all this on anyone - but sitting thinking why me? Or why my Dad - or it is so unfair - isn't going to change a thing.....but there is a little comfort in knowing other people have been through or are going through the same things - in a world where community seems to be failing it's kindof nice to know you are not alone and people are out there.

[jellytots]

Hi Alison, unfortunately I can't offer any useful advice on the shoplifting front so glad to see others have supported you there! But what struck me about your post is that it sounds like your Dad has a relatively rare form of dementia called fronto-temporal dementia (FTD), and I wondered if that was the diagnosis you had been given or whether it had been missed. I know someone did direct you to the factsheets and this one is all about FTD - it talks about things like loss of inhibitions, a change in the type of food preferred as well as eating habits etc. I hope you don't mind me mentioning this and you may already know it all! But it can be important to get the 'right' diagnosis when it comes to dementia.

(It wont let me link the factsheet as I don't have enough posts apparently, but it is there!)