Just starting out on this difficult journey...

[lilaclady]

Hi,this is my first post after lurking around for a few days - i must say I take my hat off to you all as carers and sufferers - this disease is the most cruel and sad disease.

My mum who is 76 has just been diagnosed with Vascular Dementia - she is currently living alone 40 mins away from me. She has always been a very unsociable person and so has no friends only a neighbour that visits a couple of times a week. The house is clean and tidy but the slightest problem throws her into a panic. She has lost weight and is down to 7 stone after being 8 1/2 all her adult life - she doesn't have any interest in food and lives on salads and eggs as far as I can tell.

She refuses to have ready meals as she is apparently perfectly capable of cooking but chooses not to!

She is obsessed with saving money - although she is comfortable - but the house feels cold and the cupboards are bare

When we went to the doctor she lied about her symptoms and got angry when me and my brother when we corrected her - one of the main things she suffers from is visual hallucinations where she believes that usually my brother has been in the house and moved / hidden things from her.

I quess my main question for today is what do I do next ? She is refusing to have social services round and refusing any medication for the hallucinations, She is not eating properly and also won't stop driving!

I am not able to go to her every day and to be honest if I did it would make little difference - if I do go she has no conversation at all and we end up watching tv!!

She seems depressed and can be nasty- as if she thinks I am trying to catch her out all the time.

It feels as if we are waiting for something major to happen to give us a reason to get more help ?

 

[jorgieporgie]

Hi Lilaclady and welcome to TP.
My Mum also suffers from VD and started out the same as your Mum. I had to move her in with me two years ago and she really deteriorated quite fast. I would suggest that you have her back to the GP's. You said that she has been diagnosed, was that with GP or memory clinic. You never know how fast they can deteriorate and you may need social service involved with her living alone at sometime, best to get something in place now. There are plenty of people who will help and support you on TP.
Take care and keep posting.

 

[lori107]

I feel for you

Hi, we had much the same with fil. He was adamant he could look after himself even though he was also virtually blind and had alzheimers. We took him to the memory clinic but he refused to accept the diagnosis and take aricept. He couldn't cook (although he told everyone he could), he was eating raw food out of the freezer. Mouldy food in the bread bin a carer had put there which he had promptly forgotten about. He couldn't carry on and then when he fell and broke his hip that was the last straw. He went into a care home and has been there ever since. Yes, he blames us all the time and 'we are so wicked in not letting him go home' but there was no other option. He is safe, warm, well fed and we are just going to have to accept the guilt. We couldn't have him moving in with us (absolutely no room) and I couldn't cope. We are doing what is in his best interest, even though he can't see it.

 

[MollyD]

Hi lilaclady (lovely username ).

It's a horrible disease isn't it?

I agree that contacting your Mum's GP might be your best solid starting point. Medications can help ease some symptoms like paranoia and hallucinations. Hopefully, he/she will have an informed, sympathetic and intuitive awareness of what your mum, you and your brother are experiencing.

It might be an idea to keep a record of your mum's behaviours and make a list of your concerns. Someone suggested this to me. I keep a diary and then jot my observations. It helps me keep a clearer mind when I get the opportunity to speak to someone 'in the know'. It can be terribly had to recall all the stuff I want to voice, in the midst of any mayhem, without keeping a record.

Hope you keep posting if you need to.

 

[sunshine13]

We had much the same issues with my father. He was always awkward (to say the least) but became so much worse after vascular dementia kicked in. Have you tried phoning her GP surgery and asking if a nurse could call. I did so, stressed how upset and worried I was for my dad's welfare (although I was also worried about mine). The fact that the nurse was not me and was in uniform meant that my dad took some notice of her - for a while at least. At the very least the nurse should be able to suggest things you can do, services you can access etc. You may have to pay for those services though, but your mum may be entitled to a Carer's Allowance.

The telly watching thing sounds very familiar too. I think that is typical of many people who have dementia. I am a volunteer befriender with the Alzheimer's Society and often the person I visit just wants to watch telly. I think it's probably because it's undemanding for them i.e. doesn't ask anything of them, other than to be passive. Not very helpful to you I know, but knowing why may help. Would your mum accept you reading a book or busying yourself with something else while she telly watches? If so, that might be a way of visiting without getting too frustrated at the lack of chat. Depression can also be part of dementia - again telly watching is easier than communication in that case.

Having said all that, this is a rubbish illness and I think anyone faced with dealing with it in any capacity can only do what we can do on any day. Every person who has it is different; everyone's relationship with their family is different. It's a very, very steep learning curve. Please keep using Talking Point. There are some amazing people here and I would have collapsed into a heap many times while my parents were ill without their unconditional help and support.

The other thing I would say is please take her car keys off her, maybe when she doesn't notice. I know that raises all sorts of issues about personal freedom and human rights, but, if she's not fit to drive, then she shouldn't be. We did that. There were lots of arguments and in the end my brother actually took my dad's car away. He was a danger to himself and others, so we had no choice.
The main thing though is to keep using Talking Point. Both my parents had dementia. My mum was sectioned with all the horror that entails and I used it many times, especially in the wee small hours when all seems so awful and immediately after visits when I just wanted to scream in the corner.

Good luck and remember you can only do what you can do and this will change from day to day, depending on how your mum is, how you are and what else is going on in your life. xx

 

[Quilty]

Agree about the car. To avoid a fight i would disconnect the battery and then put her off about fixing it.
Welcome and keep posting. My mum refused all help but got fat living on cake and biscuits. It often takes a crisis before anything changes. Is she safe using the cooker? Any gas or electric heaters? Remove the fuse. Gas cooker needs a fitter to put in an isolation valve.

 

[lilaclady]

A few weeks on and nothing has really changed with mum - the power of attorney forms are chugging along and the DVLA are contacting her consultant to see whether he agrees that she should continue driving. She is now aware that she has dementia as she has told a couple of people but still refuses any treatment / help, and is adamant that she doesn't need any!!

The hallucinations are still happening - today she told me that my nan who passed away over 10 years ago was down stairs last night - and forgot to turn the tv off! We had the usual conversation about my brother had been in the house hiding the key and could I ask him where he had put it! I had to say that he hasn't been round and she said
well i suppose you will blame that on me going loopy !!

Which i have never said - I feel like so many subjects are off limits as when she says something that isn't true I don't want to correct her but equally I find it hard to agree with whatever it is she is saying

I still don't think she is eating much but she refuses to get on the scales - on the plus side the house is tidy and she is clean - she has been gardening which is nice - we went to the garden centre today but she wouldn't buy anything because she is living on £3 - £4 a week!! Due to having no money when in fact she is quite comfortable!

So no questions really - just wanted to get it out there - wish this wasn't happening to my poor mum!

 

[Munchkin]

You need support!

People with dementia very often think that they can cope. My mum still thinks that she can look after herself. She lives with me, and does everything!! In reality, she does nothing! I think that you need to seek support. I moved mum in with me and my partner 4 1/2 years ago. She wasn't too bad at first. However, over the past 6 months she has deteriorated. She is incontinent during the night, cannot remember going out (once she is back home and has her slippers on) and tells me my dad is in the lounge (he died in 2011). The one thing I would say is this... Either get Social Services involved (in her own home), or get her moved into a residential home. Her weight loss is a big issue! I did not think how moving my mum in would affect MY life - I only thought about whether or not she would settle (I moved her 125 miles). However, she settled easily, and now it is me and my partner who are suffering. If we go out, we have to say that we are going with friends, otherwise she wants to come. We cannot go away for the weekend without pre-arranging it with a carer weeks in advance, and in addition, we are so tired of all the daft conversations. Like your mum, mine is obsessed with her bank books, so I have to watch what I spend on care. My mum is 87 very soon and other than dementia, very physically fit. I am 60 this year and very aware that life is passing me by..... There is no longer any 'quality time' with mum..... it's a sad situation for all of us.... decisions, decisions!