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Dementia & Alzheimer's
What should I do - if anything?
Lollylovesbones · 08/05/2016 20:46
I visit my parents about once a month for a few hours - they are both in their mid 80s and physically very healthy. My mother has always been opinionated
-difficult-- but on the last few occasions I have felt that something was not right. She has developed some extreme and unpleasant islamaphobic views (this is out of character) and even when my DS told her that what she was saying was hateful, she just kept going. Other examples are today she was extremely loud and aggressive about the neighbour's children playing in their garden (normal, rather nice sound of children playing) and another neighbour revving his car - annoying but it only lasted for about 2 mins. When she left the room, I asked my father if she was ok - he described her as having developed a persecution complex and said that she kept losing things but refused to discuss it. He said he was finding her very difficult to live with as he had to watch everything he said.
I am not sure what to do - one minute she is spouting hate and the next minute we are having a perfectly rationale and intelligent conversation.
CMOTDibbler · 08/05/2016 20:57
Its very difficult, but this change in personality can be due to dementia removing inhibitions. Can you encourage your dad to visit their GP to talk about your mum, and then they may find a reason to call her in to assess her.
fusspot66 · 08/05/2016 21:04
She needs to see her GP. My gran was convinced that her neighbours were slamming doors day and night. She had a brain tumour 
Lollylovesbones · 08/05/2016 21:15
If DF won't go to the GP, should I?
This may seem a stupid question but what would a diagnosis of dementia achieve? It would be her worst nightmare. About a year ago, she announced to DD and I that she had been investigating Dignitas - we were rather taken aback as it was completely out of the blue - she said she would rather die than go into a home.
CMOTDibbler · 08/05/2016 21:31
It achieves an explanation for behaviour (when my previously lovely mum started saying the rudest things about people dad could give them his little card about her dementia rather than avoiding taking her anywhere), gets support for them, some forms can have their progression slowed with drugs, and also will exclude other causes for behaviour change. Your dad is more likely imo to be able to keep them both at home with the proper support in place than avoiding the D word
Lollylovesbones · 08/05/2016 21:43
Thanks - I will try and get my DF to go to their GP
Scottishthreeberry16 · 08/05/2016 21:45
I think it's better to have an idea of what's in store than not.
It may be due to dementia but I think you need to keep a close eye on if it seems to be worsening. You may want to discuss next steps with your dad as he sees her the most and perhaps broach the subject of what options are available/he would prefer if the condition worsened. Drugs can delay memory loss.
There is loads of info about dementia. Facebook has a Dementia Awareness group; the Alzheimer's Society have talk forums where you can ask questions so you might want to join those for more information. They may have more helpful advice on how to monitor and what to do next.
Does she seem confused about things? Has anyone else noticed a change (eg. Her friends? Social networks?) There's different types of dementia and they can have different symptoms. Aggression is not unusual.
If your mum steadfastly refuses to go to the doctor, there are other people who can do a Mental Capacity test.
Scottishthreeberry16 · 08/05/2016 21:51
And 'a care home' is a long way off right now. Once diagnosed, contact social services for a needs assessment (you could this even if she doesn't have dementia). If she's eligible for support, they will help put a care plan in place (your parents may have to pay depending on their income). Your dad will need some support if he's going to be her carer and he will be offered a carer's needs assessment too. He should do this really as if his own health or wellbeing suffers on account of caring for your mum, he will need support.
Lollylovesbones · 08/05/2016 22:05
Does she seem confused about things?
This is what I am finding difficult - apart from the aggressive behaviour, she generally seems ok. I don't think I see them often enough to judge. As for social networks, she and DF do everything together - she doesn't really have any close friends that she sees without him and he would cover up any difficulties. The only other thing I can think of is at Xmas she seemed to have forgotten how to make a meringue - DC and I commented on it at the time - a bizarre example but she is a really experienced cook.
Scottishthreeberry16 · 08/05/2016 22:25
I think I'd be concerned if I were you .. if not only cause you point other things in your opening post (erratic angry outbursts; increasing intolerance that's out of character; losing things). Does she feel that something's changed, do you know? Does she know she's forgotten or lost things? You say they're very healthy. Is she on any medication at all that could warrant a review visit to the GP?
I would want to get her checked out if it were my mum. It sounds like something's changed. It may be a UTI and that's easily checked and treated.
mrsmalcolmreynolds · 09/05/2016 14:10
Hi OP. Just wanted to say I am in a similar situation to what you may be facing (albeit further down the track). My DM was diagnosed with Alzheimer's just before Christmas having struggled with a variety of unusual symptoms for some time. I had been worried for a while that there might be an underlying degenerative condition and desperately hoped it wouldn't be the case, because (like your DM) losing the capacity to look after herself is my DM's worst nightmare - she has said she would rather die and she is perfectly reasoned about it.
As it happened, DM reacted quite well to the initial diagnosis - she was actually relieved to find out what the matter was, and glad that the problems she had been having had an identifiable cause. It also meant that the authorities (NHS and SS) swung into action so quite a lot of practical help has been available - getting better lighting in the house, extra stair rails, helping to source a cleaner etc. I live nearly 3 hours drive away, have two small DC, work 80% and have a three hour daily commute so having some practical support on the ground has been a huge help.
You may find therefore that at least initially, a diagnosis would help because then you're in the system and can use it to help you and your DParents.
The next part (which I think is now beginning for us) is when the initial relief of knowing what the problem wears off. DM is now starting to worry more and more about progression of the illness and has mentioned Dignitas. It is really hard.
Lollylovesbones · 09/05/2016 15:13
Sorry to hear your in a similar place Mrsmalcom but thank you for your post.
Part of the problem is that her symptoms are so vague and you would have to know her to realise that her rants are out of character (even allowing for the fact that she has always been difficult) and not just those of a nasty, miserable old woman. I have never been present when she has lost something but another family member told me today that he'd watched her throw something in the bin, subsequently look for it and then become quite aggressive when he said she'd thrown in away, denying that she had even when presented with the evidence. Up until yesterday my DF had never given any indication that he had concerns and I don't think he would have said anything if I hadn't asked.
DM is now starting to worry more and more about progression of the illness and has mentioned Dignitas
How sad for you both 
. I am wondering whether DM's conversation about Dignitas is an indication that she has had worries about herself for sometime.
mrsmalcolmreynolds · 09/05/2016 22:27
Hi Lolly, thanks for the . It is difficult even trying to work out whether there's a problem, and/or what it is - bit of a cruel joke by the world really!
It sounds like something is going on with your DM - it might be worth keeping a log of things that concern you or others, so that even if she doesn't go to the GP now you have something to refer back to. Based on my experience it can be difficult to keep track of whether things are improving /degenerating/on an even keel.
Scottishthreeberry16 · 09/05/2016 22:56
I think some kinds of dementia (eg Lewy Bodys) present as more erratic than a slow discernible decline so it makes it more difficult to identify.
Lollylovesbones · 09/05/2016 23:11
Thanks scottish - this is all a steep learning curve - I didn't really understand that there were different types of dementia and many of the symptoms seem relatively subtle.
Mrsmalcom - I think your suggestion to keep a log is a good idea.
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