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Sundowning - Carers UK Forum

Sundowning

For issues specific to caring for someone with dementia.
Hi I need advice, my Dad was in hospital for 5 days last week , he lives with my Mum who has Vascular dementia bad.
The night he went in she managed the night alone but the second night was found wandering so I stayed with her till Dad came home.
I was shocked how much she wandered at night , mood change, even more confused etc.
Dad has Vascular Parkinson’s so sleeps downstairs in a hospital, he can’t walk or move himself much at all and he obviously wouldn’t be able to keep an eye on Mum at night. Since he came home Monday evening I have had 1 careline call saying Dad had asked me to go over as Mum agitated which I did. Although she didn’t go out I worry about them and wonder where I stand with night time care for them ie do social do it?
At present she only has 2 x calls a day 30 min breakfast, 15 min lunch.. Dad has 4 x, I have been fighting to get her bedtime call and put in her night wear as she sleeps in her clothes. The care agency has literally only just swapped her calls around in order to help her wash and dress which is pointless if no one changes her into her P.Js as she can’t do it herself.. I feel like I am fighting a losing battle and they expect me to do absolutely everything for her. I already bath her once a week and go over daily to them to do shopping, washing, put Dad in wheelchair, everything they need I do order conveens, pads, sort the bills basically run their household as well as mine! Surly there must be more help available.. I have to work and sort my son out too as widowed.
Hi Ruth,
it sounds like your parent's both need an updated Needs Assessment as their care needs have increased. This is the best way to get the visits increased. You will need to state that you are not prepared to do certain tasks.

I honestly doubt you will secure night visits, a lot of authorities have ceased to fund them. Once someone needs care at night, often residential care is the next step. The only other thing to explore is live in care, but this is costly.


Melly1
Hi Ruth.

For the benefit of others ... and me ... SUNDOWNING :

( In a pub quiz , I would have let the team down ! )

https://www.alzheimers.org.uk/about-dem ... sundowning
Sundowning

Sometimes a person with dementia will behave in ways that are difficult to understand more often in the late afternoon or early evening.

This is known as " Sundowning ".


VERY USEFUL LINK ... SECTION FOR CARERS RECOMMENDED :

A snippet :
For example, people may become more agitated, aggressive or confused. This is often referred to as ‘sundowning’. This pattern may continue for several months and often happens in the middle and later stages of dementia.

Sundowning may be caused by:

disturbance to the 24-hour ‘body clock’ that tells our bodies when to sleep, caused by the physical changes to the brain.

loss of routine at a previously busy time of day.

too little or disturbed sleep.

too little or too much light.

prescribed medication wearing off.

medications that worsen confusion and agitation.

lots of noise.

other conditions such as sight or hearing loss.

Sometimes you might think of the person’s behaviour as ‘sundowning’ and not realise that they’re actually trying to meet a need. For example, the person may be trying to communicate rather than behaving a certain way just because it’s late afternoon. Always consider what other reasons there may be for a person’s behaviour.
Needs and Carer assessments ?

Both through your own LA :

https://www.nhs.uk/conditions/social-ca ... ssessment/

https://www.carersuk.org/help-and-advic ... assessment


Both come with the usual health warning ... waiting times ... a real post code lottery out there.

So , don't delay !

As Melly mentioned ... night care ... through an LA ? ... like finding a full set of teeth in a hen !

If really needed , be prepared to pay !

Residential care ?

If ever on the menu , plenty of AGE UK factsheets ... covering everything from A - Z available.

Just let me know , and I will post links ... starting with the basic considerations.
Good advice already given. Also consider getting their GP on board too.

Does your mam have any capacity left? Hopefully it wont come to this but if they cant cope you may have some difficult decisions to make.
There are some key words to use too and one of them is safety. If mams dementia is advanced she could be classed as being in danger if left alone. This bumps you up to emergency status.

x
Thanks guys, basically what I thought.. That were both reviewed couple of weeks ago and I asked for extra care for Mum although I didn’t realise what she was like at night till I stayed!
Mum doesn’t have capacity and get the impression from LA that they are more than happy to do nothing as I do so much.. my daughter even phoned informing them how I was having to go and put her into PJs at night and social worker said it wasn’t on as I do so much already but her supervisor refused to put that call in yet saying see how she gets on with getting dressed in morning with carers... SHE WILL ALREADY BE DRESSED IN THE MORNING AS NO ONE IS GOING TO UNDRESS HER AT BEDTIME!! Think I may have to withdraw my help so someone actually listens to me and helps.
Hi Ruth,

Your role needs to change from that of hands on carer to that of Care Manager, arranging and supervising what carers do. It will take a bit of time, but it worked for me, and many others.

Let's start by looking at dad's situation first. He should NEVER have been sent home to this situation.
How can a wheelchair user be left in charge of someone with dementia when he can't care for himself?!.

To help us find the best solution, can I ask how old dad is, what is the matter with him, is he OK mentally, and why he went into hospital?.

Do they own their house? Have over £46,000 between them? (The cut off point for Social Services help).


Are they claiming exemption from Council Tax as mum has dementia (severe mental impairment)?

Are both of them claiming Attendance Allowance at the highest rate?

Forum members know only too well that what should happen and what actually happens can be very different!

Have you seen recent formal written Needs Assessments for both parents?
Have you asked Social Services to do a Carers Assessment for you?
Do you have Power of Attorney?
Are you an only child?
(These are really important questions, not being nosey!)

WRITE BY RECORDED DELIVERY, OR EMAIL Social Services and say that the situation is very URGENT. Give them a cut off date, say 1st July, when you will be withdrawing all care because you are a widow, you work, and have a child to care for. Do NOT allow the Lifeline call centre to ring you after a certain time at night, tell them to call the ambulance or Social Services.
Reading between the lines ... and looking ahead ... another link which may enter the frame :

https://www.carersuk.org/forum/support- ... read-35998

No surprise here ... CHC / NHS continuing Healthcare.
My Dad is 84 years old and has Vascular Parkinson’s so actually can’t get into a wheelchair unless I put him in it with rotunda..otherwise he is just sat in his recliner or bed. They own their own house but don’t have over £30 grand savings but Dad gets a good pension so contributes £1,800 every 4 weeks for his care. I have had a carers assessment and they know I have health condition, I have 5 siblings.. none of them help and 3 of them were discovered stealing over £40 grand of my parents money over 2 year period.. this went to safeguarding.. my daughter and myself have LPA for Dad both financial and health, Mum has solicitor having deputyship for her as has no capacity. I really can’t believe that someone with the level of Mums dementia can only be getting 45 min care a day (2 calls!) probably because dad has 4 x they think it’s fine but his needs are completely different. Care agency is know going to help push for extra calls/time but they have been useless not noting decline in her care folder etc which all would give evidence of her desperate need, had meeting with the care manager to raise my concerns about their lack of professionalism and care and hopefully things will improve but not holding my breath!
Does mum have over £23,000 IN HER OWN RIGHT?
Was dad assessed jointly, or individually?

If dad has an excellent pension and savings, in his name alone, then it would be more beneficial for his financial assessment to be a JOINT assessment.

If mum has no pension and under £23,000 in savings, then it is more beneficial for her financial assessment to be done individually, not jointly.

It is NOT the choice of the LA how they do these, jointly or individually, it's the right of the client. They may have "forgotten" to tell you this!

If she comes under the £23,000 threshold, then tell Social Services that you CANNOT cope with her any more, that they need to be looking at residential care unless they increase her care package drastically. If they know that they are going to have to pay for residential, they will then increase her care package as residential will be more expensive.

Have you asked the GP if there is any medication to help mum?