Hello my name is Pam, I am concerned about my 83 year old mum.

[PammieA]

Thank you Canary for your explanation.
I didn't realise there were so many different types.
What happens if no changes are seen on the brain scan?
I know my mum's confusion and changed behaviour is not her.
This forum is so supportive and helpful, I'm so glad I have found it.

 

[PammieA]

Please can someone explain what 'sundowning means'
And is lack of night sleep common in all types of dementia?

My mum has not been diagnosed as yet, waiting for a CT brain scan.
Over the last month she has had two different antipsychotic medications, both increased, (initially given for delusions and hallucinations), but her sleep has changed dramatically - she is now only having approximately 3-4 hours of intermittent sleep between 11pm & 6pm.

Is this sundowning?
Any advice/information?

 

[Sarasa]

Sundowning refers to confusion that a lot of people with dementia have in the late afternoon early evening. Someone can seem fairly OK most of the day and then suddenly their behaviour changes. There is a more detailed explanation below.

Sundowning and dementia

Sometimes a person with dementia will behave in ways that are difficult to understand in the late afternoon or early evening. This is known as 'Sundowning'.

www.alzheimers.org.uk

I don't know a lot about changes to sleep patterns, but I'm sure someone that does will be along shortly.

 

[Rayreadynow]

Please can someone explain what 'sundowning means'
And is lack of night sleep common in all types of dementia?

My mum has not been diagnosed as yet, waiting for a CT brain scan.
Over the last month she has had two different antipsychotic medications, both increased, (initially given for delusions and hallucinations), but her sleep has changed dramatically - she is now only having approximately 3-4 hours of intermittent sleep between 11pm & 6pm.

Is this sundowning?
Any advice/information?

I would seek advice in trying to help your mum get help with sleeping as a starting point. I have read elsewhere the reluctance of using antipsychotics?

 

[canary]

her sleep has changed dramatically - she is now only having approximately 3-4 hours of intermittent sleep between 11pm & 6pm.

Not sleeping at night is a common problem with all types of dementia and is very difficult to treat.

Sometimes it can be due to things like anxiety or troubling hallucinations keeping them awake and treating these things can allow them to sleep

Quite often, though, it is due to a breakdown in the normal body cycles so that the person either gets day/night reversal or develops a fractured sleep pattern and divides their sleep between day and night

Unfortunately, if this is the reason for the lack of sleeping, then things like sedatives, antipsychotics and sleeping tablets dont work, because the problem is not insomnia

 

[PammieA]

Thanks so much for all your information and advice. It is helpful to understand the terminology.
Thanks Sarasa for the link.

 

[Jaded'n'faded]

It sounds like your mum is finally on the road to diagnosis. But I think you may have some problems with your (step) dad going forwards. I think you're right that he has been covering up your mum's symptoms and behaviours for a good while now, maybe unintentionally or out of loyalty. He could be in denial himself or maybe just wants to save you from worrying. But it's concerning he thinks she will be better soon and also that he won't allow you to go to the GP appointment and you say he wouldn't accept any help.

it's this situation that will cause you the most frustration once your mum is diagnosed! He will need help with your mum and he'll also need proper breaks from looking after her. His attitude is perfectly understandable (and very common in that age group) and he is probably very scared about what's happening and how he will cope. But he holds a lot of the 'keys' at the moment so try to stay onside with him. You might also want to write to the GP and point out that both your mum and dad will minimise the issues and deny there's a problem or that they need help, because if they say that, it's very hard to force help onto them.

Good luck...

 

[PammieA]

Thank you Jaded 'n' faded, yes it's definitely frustrating, but I am trying to keep him onside. Luckily a CPN and a support worker from the local mental health team became involved very quickly due to Mum's 'imposter' delusions.
Dad has accepted a weekly visit from them and I have their contact details, I've been able to talk to the CPN regularly, but Dad has asked her not to tell me what's going on, as he doesn't want me worrying (she said she needs to respect his wishes, as he's her nok - I do live 300 miles away, I also travel to Bahrain frequently as my husband lives & works there.
I do think Dad is trying to protect me, he has promised to keep me updated, and let me know if he needs me to go to their home.
But I am finding it difficult, especially as Dad is reluctant to tell me what's going on, or have conversations about necessary plans (finances, wills - neither have one😕 and lasting power of attorney)

Mum has a date for her brain scan 15th March, so hopefully it will give us a diagnosis.
I am certain Mum has Dementia, the CPN has said she thinks it is Frontal Lobe, but neither of us has mentioned this to Mum or Dad.

I am so pleased I found this forum and grateful for any advice. Reading individual posts about the challenges and every day experiences of living with this cruel disease, has given me an insight as to what might happen to Mum in the future.
I have also purchased Wendy Mitchell's 3 books following the information I read on this forum. Thank you all for your honesty and daily posts.

 

[PammieA]

I'm not sure if I'm supposed to post here, this is where I started the first post back on 17th January.

An update:
Today my mum was diagnosed with Vascular Dementia. This has been a quick diagnosis compared to how long some have waited/still waiting.
Although I had expected a diagnosis of a type of dementia, it is still a shock, and the start of a challenging, emotional journey.

I have been reading posts on here daily, gaining more insight into how this disease affects the PWD and their close family & friends.
But today it has become real for me too.

We were given the diagnosis this morning, then left with no other information.
Mum has a CPN and a support worker ( from the mental health team) who will remain involved (not exactly sure what they will be doing)

I have read posts about benefits available for PWD, like reduced community tax, attendance allowance.
How do you apply for these?
Are these only available for low income people?
Are there any other things I need to do, to support my mum & stepdad?

Any other advice or information will be greatly appreciated.
Thanks, Pam

 

[canary]

Thank you for your update @PammieA
Yes, your thread is a good place to post this as it is a reminder of the situation you are updating

Its always overwhelming when you first get the diagnosis, even when you are expecting it and no, we didnt get anything after diagnosis either, except for a handful of leaflets. At least you are here which I have found to be the best source of advice and support

I have read posts about benefits available for PWD, like reduced community tax, attendance allowance.
How do you apply for these?
Are these only available for low income people?
Are there any other things I need to do, to support my mum & stepdad?

If there is no POA, get your parents to organise these as soon as. Ditto with wills.

The gateway benefit is Attendance Allowance, which is not means tested. I think you can down load the forms from the internet. If there are enough symptoms to get a diagnosis, there will be enough to claim for AA. Make sure you fill it in as if it were the worst day.

Once you have that you can then apply for Council Tax disregard (not discount - make sure its the right one) which is also not means tested.

There are also other benefits if you are on a low income

 

[SMvJ]

Please can anyone tell me the actual process of assessments (tests, appointments) and diagnosis. And an average time.
I accept it is dependent on area and individuals.
My mum has another appointment with the GP next week, as mum's confusion is worsening. But she passed the basic 'memory test' with her GP last week.
What is the next steps, if the GP refers her on? Or will he not refer her, wait a certain length of time?

Hallo Pammie, I am in South Africa and took my mom to a specialist a few months ago. He did a short test with her. He asked her to draw a watch and to show the time as two o clock. My mom, who according to me at the time was only a little confused, could not do it. He then asked her basic math questions like 100 -8=? Then the answer minus 10 and again she struggled. He gave her five random words to remember like shoe, rose, chair, wall, table repeated it a few times and after a while asked her to repeat the words, and she could not do it. All these were major eye openers for me in how well my mum kept the dementia hidden from us all. I see my mom every day. She is my best friend, my confidant and even I did not realise she has dementia.

My opinion, take your mom to a specialist not a GP. One gets very good medication these days and the sooner you get your mom on it, if she has dementia, the better. Good luck

 

[PammieA]

Thank you @canary for your helpful advice.
We had no leaflets given at all, which ifeel we should have. Mum and Step dad needed some written information to understanding a little of what they were told. I think they are in complete denial.

The LPOA and Wills, I have tried to discuss and encourage, but no progress - so concerned. Especially as my mum does all the banking & bills, step dad has no clue of the outgoings!
I'm so pleased I found this forum, great support.

 

[Banjomansmate]

Tell your parents that you are getting your LPAs done now and what a good thing they are to have in place, after all, anybody can have an accident that might leave them in hospital with someone needing to pay bills, buy things etc. Get the forms all completed and show them how simple it is.
The other option is to point out how much more it will cost them if they are not in place and they have an accident, then it has to be done through the Court of Protection who charge for all the work done.
Do they have any friends who you could get on board to say that they have them done and what a good thing they are?

 

[silkiest]

Hallo Pammie, I am in South Africa and took my mom to a specialist a few months ago. He did a short test with her. He asked her to draw a watch and to show the time as two o clock. My mom, who according to me at the time was only a little confused, could not do it. He then asked her basic math questions like 100 -8=? Then the answer minus 10 and again she struggled. He gave her five random words to remember like shoe, rose, chair, wall, table repeated it a few times and after a while asked her to repeat the words, and she could not do it. All these were major eye openers for me in how well my mum kept the dementia hidden from us all. I see my mom every day. She is my best friend, my confidant and even I did not realise she has dementia.

My opinion, take your mom to a specialist not a GP. One gets very good medication these days and the sooner you get your mom on it, if she has dementia, the better. Good luck

Hi SMvJ, unfortunately there is no medication that will help treat vascular dementia. This kind of dementia can be difficult to deal with as there can be times where there is a sudden steep deterioration with plateaus in between, unlike with alzheimer's where there tends to be a steady deterioration

 

[PammieA]

Tell your parents that you are getting your LPAs done now and what a good thing they are to have in place, after all, anybody can have an accident that might leave them in hospital with someone needing to pay bills, buy things etc. Get the forms all completed and show them how simple it is.
The other option is to point out how much more it will cost them if they are not in place and they have an accident, then it has to be done through the Court of Protection who charge for all the work done.
Do they have any friends who you could get on board to say that they have them done and what a good thing they are?

Yes I have tried that with both the WILL and LPA, as we have recently done ours, because of this current situation - making no difference! I will keep trying.
I'll try with appropriate friends too.

I'm considered asking the CPN if she can bring these things up with them. They respect and trust her.

 

[PammieA]

Hi SMvJ, unfortunately there is no medication that will help treat vascular dementia. This kind of dementia can be difficult to deal with as there can be times where there is a sudden steep deterioration with plateaus in between, unlike with alzheimer's where there tends to be a steady deterioration

This is tough to know, but it's better to know what might be coming.
Any insight is welcomed.
Thanks.

 

[Jaded'n'faded]

Yes I have tried that with both the WILL and LPA, as we have recently done ours, because of this current situation - making no difference! I will keep trying.
I'll try with appropriate friends too.

I'm considered asking the CPN if she can bring these things up with them. They respect and trust her.

Good plan. You might also tell them that if you don't do it (LPA) and something happens to one of them, 'some interfering busybody from Social Services'* will take over and you/they will have no say in things.

Not exactly true but not that far from the truth either! And it's the kind of thing that can work well with people of your parents' generation.

How's your dad taking the diagnosis? Has he talked to you about it? Maybe it will stop him being in denial quite as much and accept he's going to need help with your mum going forwards. I hope so!

* Apologies to anyone who works for social services...

 

[PammieA]

That's a great idea I'll try that. I have been attempting to talk to the both today l, but no real luck.
My stepdad is tired and seems to have no energy (he's 86). Mum is not sleeping well, getting up 4-5 times and not returning to bed quickly.
I have talked to them both about the diagnosis, but I don't think they fully accept what it is. Not sure if it's denial or ignorance.
I heard him tell 2 relatives today that' "the Dr said she had a stroke a few years ago (that was from scan results, but there was no awareness of mum having a stroke), this is causing the confusion, but it's mild and she'll be okay."
Luckily he passed the phone to me and I told them loudly that mum has been diagnosed with Vascular Dementia, which will not go, it will get worse

Mum & step dad are talking mostly about my mum's hysterectomy she will have on 2nd May, we got that date yesterday.
She desperately needs it, has been waiting 3 years. Her womb is hanging out now (sorry to be graffic), it's so debilitating for her.
I am very aware that her dementia will probably worsen following this surgery.

I hope the diagnosis will register, especially for step dad as he's going to need support.

Thanks so much for you advice and concern.

 

[Banjomansmate]

Well, now you have the perfect reason for Mum to do her LPA if she is going into hospital and will be on restricted movement for several months after the operation. She will definitely not be able to be up and out for a good few weeks.

 

[PammieA]

I totally agree, but if mum or step dad don't want to even discuss LPA, what do you do.
They both have capacity to make their own choices.