Mums confusion

I wonder if she has an infection - particularly a uti? Can you get a sample tested? I know some pharmacies were offering that as a service pre lockdown.

And, what were the actual results of the brain scan. Did your mum get a follow up appointment with a specialist?

I am so sorry to hear what’s happening to your mum. I’m no expert but I did have a similar situation with my mum and it did turn out to be the beginning of Alzheimer’s. She kept saying odd things that you knew could not possibly be true. She also struggled to use the phone and remember things. She was aware something wasn’t right and kept saying she was losing her marbles. I think it’s quite hard at the start of the illness to diagnose it effectively. I would be persistent with the GP and explain about the fantasies.

Best place for advice and support is the Alzheimers Society's web site Talking Point. They also have an advice line which is operating normally and are THE experts iro all types of Dementia. I'll come back in a minute with the contact numbers.etc.

Thank you ladies. I have no experience of this so it’s really strange, she always been the matriarch a very strong person. We’re both finding it difficult. I’ll see if I can get a water test, somehow,everything’s so difficult with lockdown ! There was no follow up with the brain scan, the dr read through it, and just said there was nothing to worry about.

Dementia Connect support line 0333 150 3456

Alzheimers.org.uk

My MIL was like this , she had Vascular Dementia, she went downhill quite quickly but probably due to small TIAs one day she would be a whole lot worse than she was even an hour before.
But it took a long time to get the tests done to confirm the results, by the time we knew what the problem was, she was so bad that she had to go into a care home.
She didn’t worsen mentally once she was in the home, but she died 4 weeks ago.

She needs to be checked, particularly for a urine infection. It is exraordinary what this can do to an old person. Even after it is treated there can be some brain disturbance. When my mum was in hospital she became very disorientated and had fantasies. We thought it was being in hospital, but she had a urine infection.

Thank you granny.
Oopsadaisy .how long did it take your mil to go downhill ? This rings a bell, as it does seem to come and go.

You can order testing strips from Amazon on a next day delivery.
They are easy to interpret.
If there is a positive reading for blood/protein a doctor will prescribe antibiotics over the phone.

Thank you Missfoodlove. Think I’ll try that it’ll be a lot easier.

Funny enough I’ve just had a call from mums drs surgery to say I’ll be receiving a call in the next couple of days from the Dr regarding mums memory problems. I’ll ask see if she can have an assessment, also I think she could do with social services visiting, do I ask the Dr about that ? I’m still working part time and look after Dgd so can’t visit everyday even though she keeps telling me I should !
Just been reading about vascular dementia. Sounds very likely as she has balance problems too.

If you are getting a call from the gp, I would ask for a urine test what ever the diagnosis.

As others have said, after the phone and assuming it confirms your fears, do ring the Alzheimer's Society. They have lots of resources on line, fact sheets etc but if you ring up you will be able to talk to a trained Dementia Support Worker and arrange to keep in contact.

In Leicestershire there are Carer's courses being run on Zoom. I imagine other areas are doing the same.

Again, as others have said, Talking Point, on the Alzheimer's website, is an active forum with, mostly, Carer's interacting. I know lots of people on gn recommend it.

Vascular dementia has a sort of stepped progress. People stay on the same level for a period and then have a big drop.

Alzheimers has a much more gradual decline.

Katy as Kitty has said it’s a stepped process, they have a blip then it stays like that for a while, then another one which adds onto the first blip, it takes a while to get the Dr. To get the tests organised, then with the odd UTI as well thrown in, we didn’t know what was going on.
all in all it took around 2 years from the first fall, which we think might have been caused by a TIA, several falls later and lots of hospital appointments and scans she was diagnosed. TBH by then it didn’t matter what the diagnosis was as she was very difficult, wouldn’t let anyone help her and was using the whole house as a toilet.
However a friends DH was diagnosed with the same thing around 3 years ago and hasn’t had another ‘attack’ since and although is a bit forgetful and even more OCD than he was before , he hasn’t deteriorated at all.

Thank you again. Mum fell last year and broke her hip and spent 3 month in hospital and rehabilitation we don’t know what caused the fall, but she has a fluctuating bp problem so could have been that.
It was the rehabilitation unit that recommended having the brain scan as they had seen changes in her. The dr said their were lesions on her brain scan but that could be just old age. I’ll get in touch with the organisations mentioned and then see what the Dr says.

I suggest you call the Admiral Nurse Dementia Helpline.
They are specialist Dementia nurses who offer information, support and advice. They are open seven days a week but very busy. If you don’t get through you can leave a message and they will call you back usually within a couple of hours.
tel: 0800 888 6678 or email [email protected]

For anyone with early signs of dementia the lockdown has not been good. None socialising is one of the worst thing for elderly people's Mental Health it affects us more than smoking 40 cigarettes a day or drinking more than the recommended amount of alcohol. Your mother needs to get referred to the Memory clinic where they will do a full assessment. The doctors so very often do not have a clue about dementia. Alzheimers Society is excellent as is your Carers link and Carers UK. Have you got a Dementia Alliance Group in your area? Memory Cafe? or Carers Group? all excellent support. This should not be ignored as early support can help with the decline. Good luck

A urine test is easy to leave at GPs. At our surgery you fill in the label yourself and leave on counter. Ask for whatever help you can get now, if nothing else, if you have to battle for support such as carers or getting a diagnosis (and it is a long recurring battle to get appropriate and increasing help if it is dementia), at least you can say 'yes, we've already done/tried that' so you can try to move things along as quickly as possible. In the meantime, I'd try to remove your Mum's sources of worry whenever possible with her agreement - try a picture phone for her main contacts or get a phone where frequent numbers are stored as a pushbutton '1', '2' or '3'. If she has difficulty working out the time get her a day clock as they are really clear to see as well. Medication can cause low blood pressure and cause falls so it would be worth asking doc to check for that too. Monitor her food stocks quietly to see if she is eating properly and ask about programmes she watches to find out if she is still watching TV. Is she still reading or listening to the radio? Changes in behaviour like this can be good indicator of problems. If you have a local carers centre, they give excellent advice if you have any questions about support available and will help you to step back and look after yourself too. Don't underestimate the lack of mental stimulation during lockdown - try to encourage Mum to phone friends or write letters or get into the garden, if she has one, for a chat with neighbours - as loneliness can trigger rapid deterioration in physical and mental health. Very best wishes.

My partner's mother, same age had a UTI at the beginning of the year. She went totally bonkers! His brother who is her carer, struggled with her, she stayed in bed, refused to wash, eat, talked rubbish. We spoke on the phone & she definitely wasn't on this planet! Thankfully after a couple of months & medication she's fine & has no recollection of this event. A simple pee infection caused all this!

My Mum had Vascular Dementia and it started with 'odd' changes. She would accuse her neighbour of coming in and taking her food, the Gardener was stealing her things from the garage and many many other strange things that I used to make allowances for . I reported the garden theft to the Police and an officer suggested it may be her brain declining. Talking Point through the Alzheimer's Society was invaluable. After diagnosis it was very sad to watch her decline. She did however have very bad episodes which were the result of UTI's. I would definitely get some testing done, speak to GP - they do have a duty of care and get some input from social care - this will take a while. I do wish you well and don't give up

Flakes this resonates so much. The police have been called twice over the last 3 weeks two different things won’t say what in case of being recognised.
I think it’s me that needs to get my head around it first !

If she is becoming ‘at risk’ then her change in behaviour could be considered an emergency.....

Just a thought, do you have power of attorney? It needs to be completed on paper and witnessed before she is assessed as lacking capacity, otherwise it would have to go to the court of protection. We had this issue with mum and it meant she couldn't sign to move into safer accommodation, and neither could I sign for her. It was a nightmare when she was so at risk.

I'm not an expert but I was a carer for nearly 7 years for my Mum who had alzheimer's and in her case the disease seemed to come on quite gradually. As others have said, it sounds more like a UTI. My mother-in-law was seeing a dog in her flat when she had a bad UTI and she didn't have alzheimer's!