u/Hour_orchid_1231

My mum has had several strokes, relatively minor but it's affected her frontal lobe and she has a diagnosis of neuro vascular disease with cognitive impairment.

I understand that this is a progressive disease and she is very likely to develop vascular dementia.

I also understand that although the MRI scans show the physical picture this doesn't tell you everything, how people are doing practically is an essential part of the process of diagnosing. So there's the clinical assessment.

Just in the last couple of months my mum has gotten significantly worse in her mental health. She does have a history of mental ill health including psychiatric hospitalisation. So this could just be a combination of the cognitive impairment and a psychiatric illness.

I'm wondering if it would make sense for her to have another assessment re dementia.

What troubles me is that she has, for as long as I can remember, been terrified of getting dementia. She was the sister in charge of a nursing home for over a decade and witnessed people suffering terribly with it. She's frequently said she'd rather be dead than live with dementia. I worry about the psychological impact on her if she did get this diagnosis.

Afaik with Alzheimer's it's possible to take medication which slows the progress and can address some of the symptoms. But with vascular dementia there's nothing.
(There's blood thinners as a preventative of any further strokes, she is already taking one)

What I'm wondering is, are there benefits to being diagnosed?

We are in England, UK in case that's relevant.

Around 20 years ago my aunt worked as a nurse in charge of an NHS hospital. She sometimes mentioned agency staff coming in to cover shifts when the regular nurses were off sick. It usually made her job slightly harder, as the agency staff were not as familiar with the department and the hospital in general. But it was clearly better than being short staffed.

Recently my mum was in hospital, and the staffing levels were shocking. They had a big whiteboard up in the corridor with boxes to fill in, how many nurses should be on + how many were on, same for healthcare assistants. You could see why they were struggling, quite often they'd have 6 nurses on when they should've had 10.

My mum had an terrible time there, it's a miracle she got well enough to go home.

Now that the stress of that is behind us I am wondering what happened with cover for when people have to call in sick. Can NHS wards no longer get the gaps filled by booking agency nurses?

I remember a friend telling me he had his PIP payments paused because he was in hospital.

Is it the same with attendance allowance?

How does it work - does it take effect immediately they're admitted or is it after a certain period, like a week, or a month?

Is the claim reassessed when they're discharged from hospital or does it restart?

What sort of proof do they need?

Who does the notifying?

My mum was diagnosed with epilepsy yesterday.

She's 76 years old. She has had four seizures over a seven year period.
So, one in 2019, then 14 months later, then 4 years later, then 2 years later.

She's currently in the main hospital in our city, rushed here by ambulance after she had a seizure while I was sitting with her. That was 48 hours ago.

In the accident and emergency department the doctor said they wouldn't be in a rush to start her on any new medication, but then 12 hours later a nurse came to administer Lamotrigene.

This is quite a big change and I'm scared of what this new medication is going to mean.

The seizures she's had came on after massively stressful situations, and they've also been during very hot weather. I am thinking of a million things we could do to reduce the risk of any further seizures. But regardless of these ideas, the Doctor said we'd have to take it to the Court of Protection if we family members don't want her to go on this medication.

I guess I just don't have a clue about what's ahead and I'm feeling very lost and scared.

Are there better medication and management options?

Are those realistic, if the doctors say this is the last word on it?

Looking at ways to reassure my mum about her future.

She's expressed strong feelings about some treatments in the past. I'm not 100% sure where she is up to nowadays. Last year she was in resus and when the ICU doctor came to talk to her about consent to potential treatments her answers were different to what she said in the past. Example, she used to emphatically not want a peg tube but last year she said she would consent to that if need be. She didn't need to go to ICU thankfully.

She's recently made me LPA for health and welfare. For the specific point on whether the LPA would make any decisions about lifesaving treatments she chose no.

I'm not sure I'd be able to advocate on her behalf effectively if this came up again and she didn't have capacity. As i understand it the way she's filled out the LPA forms means I wouldn't be asked to. I do think she might feel less anxious overall if she had some kind of living will or advance directive set up.

I have a couple of questions about this:

1. Where would she go to set up an advance directive?
   I am supporting her with making appointments, so I expect I'd need to help with this. She can't use the internet which is a major barrier.

2. Can she make an advance directive now, or is it too late? She has had several minor strokes and has a diagnosis of cognitive impairment. She was able to do the LPA and also make a will since that diagnosis, they were both done with solicitors and the will included a testamentary capacity assessment. Is there something similar for an advance directive?

In England, UK.

My mum recently completed LPA documents for health and welfare making me sole attorney should she lose capacity. (She also made the finance LPA for me to be sole attorney starting right away regardless of capacity.)

One of her relatives recently went into a nursing home. This has reactivated her concerns about what will happen to her in future.

Afaik it should be possible for her to have the same level of care she'd get in a nursing home from live in carers if this is what she wants.

I'm trying to reassure her that as long as I know what her wishes are I'll be able to make those decisions when the time comes.

Is there something like a living will or an advance directive she can do which lays out her wishes, that might give her some peace of mind?

I've a million other questions about how to carry out the LPA duties effectively but this is the most pressing matter.