Visual hallucinations, peripheral cyanosis, shortness of breath ...Help!!

[Zakinthos]

My mum, who is visually impaired due to macular degeneration, is 91 now and deteriorating gradually. She is on pills for high blood pressure and recently had two falls. It turns out she has not been taking her pills reliably (found backlog of packets) and blood pressure had shot up.. She also has atrial fibrillation. We went to the gp to find out if there was a cause for her falls and also shortness of breath. She has started having loads of visual hallucinations which i am not sure are related to her MD or Peripheral cyanosis which Gp noticed (lips had bluish tinge). Gp diagnosed (another) urine infection but said her chest was clear. Gave course of antibiotics but said to take her to the hospital for a chest x ray if still short of breath in a few days. What is x ray likely to show if 'her chest is clear' ? I am going away on boxing day for a few days and don't know whether to take her before I go. Local hospitals are full of norovirus at the moment so I am reluctant to take her unless urgent. I have just got her to agree to a carer coming in while I am away to make sure she takes her pills and do anything else she wants doing. No real dementia yet but short term memory problems. Also, she tells me she has had a bath when I ask but I am sure she is not bathing now as she is starting to smell. Another problem that I am not sure how to tackle. I am (only!) 49 and have two kids and dh to look after plus work too so feel very stressed at present.
Any advice, comments much appreciated !
Many thanks.

[Zakinthos]

Bump !!

[CMOTDibbler]

The hallucinations could be due to a number of things - but I'd think she needs assessing by a specialist to determine just what is going on with that.

My dad gets very short of breath and blueish - he's had chest xrays to check for infection/copd/tumour/heart enlargement, but nothing specific found. Just his heart and lungs aren't efficient enough now.

Maybe see how she goes taking the abs and all her tablets till aftewr Christmas?

[Zakinthos]

Thanks CMOT. She seems fine in herself, as in not feeling ill. Tried to phone me at 1.40 in the morning yesterday as she couldn't find the remote control to turn the telly off (she found it in her handbag in the morning). Luckily I slept through the phone ringing and it went to ansaphone! She finally realised she could pull the plug out to turn it off. Her visual hallucinations are very frequent now but she does realise they are not real (I think!). The good thing is that she had a bath this morning as she phoned me to tell me not to pop round while she was in the bath. And I checked the bath was wet when I did go round!
Think I will see how she is after Christmas as she is not feeling poorly and I don't want her to catch anything in the hospital. Plus her lips and nails didn't seem blue at all today. Hopefully now she is taking her pills regularly, her breathing will improve. Legs seem less swollen today too.
Many thanks. Just need to offload sometimes!

[CMOTDibbler]

Have you heard of Charles Bonnet syndrome - its hallucinations caused by the brain 'filling in' areas of visual loss. Could be a possibility.

Good on sleeping through the phone, and that shes had a bath - hopefully she's on the up.

Have you looked into getting her tablets put into blister packs? Boots do this for free, and means you can see at a glance if they've been taken, and only one blister to open per tablet time if shes on lots of tablets. Its made a lot of difference to my mum - and to dad in keeping her on track

[gingeroots]

It does sound as though she needs a full assesment ,our local hospital has a special dept which only deals with elderly and they look at all the conditions they have .

Maybe as a start press GP for referral to a cardiac dept ?
You mention her legs being swollen and I wonder if she is on diuertics ,or not taking them properly ?

Blister packs have been a real life saver for my mother .
They are like this www.medicineblisterpacks.co.uk/free_sample.php and I would recommend Lloyds or Day Lewis as the packs seem a bit less fiddly than some .

My mum is is 92 - with AF ,congestive heart failure ,macular degeneration ,gout ,very arthritic hands ( so little sensation in finger tips ) and some other issuses . So not dissimilar .
I have to cut her blister pack up into seperate strips for each day as she would open the wrong blisters and get in a muddle when faced with the whole weeks pack .

She opens the blister with a little veg knife over a dark brown sort of shallow bowl as the colour contrast helps her see the tablets better and the edge of the bowl stops them going on the floor .

Good luck ,it's a lot to cope with for you .

[Zakinthos]

Thanks guys. I am picking up the blister packs tomorrow. I still think she will need a carer to check daily that she has taken them though. She seems to be deteriorating. Today she told me that 'there were 'weirdos' in the house' - turned out to be her hallucinations which seem to be constant at the moment. I did think it could be Charles Bonnet syndrome but now not sure if it is the start of dementia. She is on water tablets (benzofluorozide or something) and takes them first thing in the morning regularly. But I will be able to monitor things much better once I have the blister packs. It is her shortness of breath that is worrying me at the moment. She is not feeling ill, chest is clear but she is finding it difficult to eat as she is getting so short of breath. I think her heart is slowly failing but not sure what can be done about it. I phoned the emergency social care line today - they think I should get her seen by a doctor again but are also going to get a social worker to call me tomorrow to discuss care needs. Thanks Ginger - I will see if GP thinks referral to cardiac dept is necessary - has your Mum got memory problems and shortness of breath as well? I think things would be much easier if her memory wasn't so bad.
Going to phone GP's first thing tomorrow as they are open for appts in the am. I'm just hoping they don't decide she needs to be admitted to hospital as I would have to stay then and wouldn't be able to go away as planned on Boxing Day. Which sounds selfish, but I was really looking forward to having a break from things. Oh well, will just have to see how things go tomorrow.
Thanks for all the advice.

[gingeroots]

With the blister packs I think the GP has to do the prescriptions first and that they take a few days to sort out .But maybe your chemist can sort them out for you ?

I think it's quite hard to get medication right for elderly people who have lots of different things going on .
And they need the medications reviewing ,not to be just left on whatever they were prescribed 2 years ago .

No way of knowing whether my mum's health is anything like your mums but she definitely gets breathless when her heart's not working well .She had her diuretics more than doubled a couple of years ago ,but that was only because she broke her neck of femur and ended up in hospital .
Otherwise I expect she'd still be gasping away .
As it is she is breathless at the moment and saying some very strange things .
I need to get her to GP after Christmas .

Your mums hallucinations definitely need investigating ,I'm surprised her GP wasn't more concerned and that he didn't get blood tests done .

I imagine they'd be reluctant to admit just before Christmas .

I do feel for you ,it's hard at any time but Christmas makes it even more complicated .

[Zakinthos]

Thanks Ginger. After her 2 falls I asked gp to prescribe blister packs which she did and I picked them up yesterday. She can't read the days on them though but it will make it easier for carer and me to give her her pills and see if she has tried to open them herself (which I don't think she is capable of doing at the moment). Her gp did a home visit yesterday and prescribed a stronger antibiotic (thinks urine infection might be causing extra hallucinations), extra diuretics as her legs and hands are more swollen then normal and an inhaler plus spacer. The inhaler definitely seems to help her with breathing so that's good. I've just taken her back home after spending the day with us. She was ok but just finding it difficult to eat much. She says the roof of her mouth and gums are sore when she eats. Not sure what that is - visit to dentist needed I think.
Hallucinations were funny today - she had us in stitches and was laughing herself. She does know that they are not real I think but they are so crystal clear to her that she can't help commenting on them! She has told me to stop worrying and to go and enjoy my holiday. So that's what I will try to do!
Thanks for the support - much appreciated.

[gingeroots]

Zakinthos that's good that the GP has been round and is taking some action .

My mum can't read her blister pack days either . I cut them up and leave one day at a time out ,so she only has 3 cells to open . The first cell has 7 tablets so she knows that its the morning dose . The other two have only 2 so she can distinguish by amount IYSWIM .

Although I've found tablets she's dropped on floor sometimes .

She's getting very frail ,I don't know how much longer she'll cope .
I can't explain what she's like - she's very difficult . Barely tolerates my help - checks everything that she thinks I've done after I've gone . Often injuring herself in process and creating great confusion for herself which then ( in her mind ) justifies her checking .
Her anxiety /paranoia /interference goes into the stratsophere when outside agencies are involved .

[Zakinthos]

Back from our few days away. Dm had another fall but carer and neighbours managed to get her up and she was not hurt. Carer has been fantastic- has made loads of useful recommendations to help mum. I have also made a referral to OT service to get them to assess her needs. She seems a bit better than before I went away and inhaler seems to help. Still lots of hallucinations though. Social services have also done a referral to the visual impairment service to request a home visit so I feel things are happening.
Need to get urine sample now as gp wants it checked - she can't do this herself now. Any bright ideas anyone on how to get a sample?
Many thanks and I must admit my mum seems to be accepting extra help very well and is very grateful. It must be hard for you Ginger when your mum doesn't want to accept your help. I am starting to just do things for my mum without asking her now and she doesn't complain. Before I used to ask her if I should do this or do that and she always said no.
Happy new year anyway to everyone!

[funnyperson]

Thinking of you and wishing you and your mum a better year. I have a lot of respect for people who help look after their elderly parents.

[gingeroots]

Zakinthos so glad the carer is good and that things are being arranged .

Would one of these www.amazon.co.uk/s/?ie=UTF8&keywords=portable%20bidet&index=aps&hvadid=8295054249&hvpos=1t1&hvnetw=g&hvrand=19558904751414182032&hvqmt=e&ref=pd_sl_4kdhc62qcl_e&tag=mumsnet&ascsubtag=mnforum-21 help with collecting a wee sample ?

I do just go ahead and do things for mum ,because she says no if I ask her .
But she doesn't like it ,and I dont either .

I wish she and I were working together as a team helping her stay independent .
But it's not like that .

I shouldn't be irritated by it ,she doesn't want to accept the limitations of her age and health . Who can blame her ,and sometimes of course I can see that it's that attitude that has kept her going .

But it's very hard .

[Zakinthos]

Thanks Funny person, and thanks Ginger - portable bidet looks a fantastic solution!! Never knew they existed. You learn new things every day! Going to order one now.
It sounds hard for you Ginger, at least my mum is grateful (most of the time). You said your mum was breathless and saying strange things before Xmas - hope that has resolved.

[gingeroots]

Glad the bidet thing looks as though it might help .

My mum's heart isn't good - that causes the breathlesness .
She's not very well at present - she has a cold and cough so generally is below par .
She needs to drink more fluids and eat more healthily ,but she finds it hard .

She's clearly muddled and trying very hard to cover up gaps in her understanding .It must be horrible for her .

[gingeroots]

But the problem is that I don't like her .
Certainly feel no affection .

And these last few years caring for her have opened my eyes to her personality and the very detrimental effect it had on me and my siblings .

But she's old and frail and ,I imagine ,frightened .
And no doubt can sense my hypocrisy .
So I'll just have to keep going and trying to be kind .

[gingeroots]

Apologies for hijacking .
Feeling low .

[funnyperson]

Oh Ginger I think its a myth to imagine we all get on really well with our parents all the time.
After all most of our lives we spend creating a home and life and family which is deliberately independent of them.
Sometimes though I wonder if it is a bit like having toddlers- perhaps this phase of really being very frail/mentally frail doesnt last long and will pass.

[gingeroots]

Oh don't worry FP I'm not imagining everyone having lovely relationships with their parents .

I'm sure my situation is a great deal easier than many have ,my mother isn't nasty to me or hostile .

[funnyperson]

My mother isn't nasty or hostile either. She is in fact very very sweet and mild. Mostly she has been a very remarkable influence for good.
Only trouble is she can't stop giving me the benefit of her experience. Its me thats nasty to resent it really because she never means to criticise, she just knows she does it better always. So sometimes I have this little streak that needs me to leave her to cope with her troubles so I can make my own home a home. Its a good thing really otherwise we would be too cloying and clingy.

[funnyperson]

Oh dear I've gone all defensive and personal. I can't cope. I've got noro virus or similar..........

[gingeroots]

Oh funnyperson I do so hope that you haven't got norovirus ,or even something similar .
Though I wouldn't be surprised if your immune system was depleted after the last couple of months you've had .
You don't sound defensive and personal - I don't understand you saying that ?

Hope you feel better soon .

[garden]

Zakinthos, just reading your posts- my mother got ill around a year and a half ago with similar symptoms and moved to a home dec 2011 ; great you have got the carers sorted- we eventually moved to three visits a day which helped a lot. If you think she might need full time care soon, start looking into options- many homes only take certain conditions, (and then you may need to go on a waiting list ) eg visual impairment/ dementia so not much choice really if you want somewhere near. It is so time consuming especially if you have a family yourself, visiting the homes and making the right decision- so even if you think a home might be a possibility in the next year, might be worth considering.