Possibly some progress at last!

Went to a meeting of NHS Trust workers about local mental health services. Not many non-nhs peeps came so the docs and admin got embarrassed by lots of questions and 'service user' stories from those of us who had turned up.
(What a joke! They talked and talked about 'breaking down the stigma attached to mental illness', but insist on calling patients and outpatients 'service users' LOL)
Got names, email addys and leaflets. I now have a 24 hr carer's helpline to call, too.

There was also a presentation on a new dementia care unit opened two weeks ago attached to Colchester hospital. They offer lots of things to outpatients, like art & craft, music, gardening, exercise, therapy, etc. But you have to be in the system. You can't self-refer.

This means mum would have to already be under the care of a psychiatrist specialising in dementia. -Which is what I have asked the GP for several times, since July 2010, with no result. I'll chase this, but as I said at the meeting, any mention of the D word will leave her utterly devastated. The last thing we need is a letter coming to her with anything like 'dementia care specialist' written on it.... need to tread carefully.

Did meet one psychoanalyst last year who was insistent that he would tell her she had vascular dementia, that she had a right to be told, regardless of how I think she'll take it, and that it wasn't that bad. WTF?????
I asked if he would put support in place before breaking this news to her. No, he explained, that wasn't what they did there. They don't do support. You need to look to charities for that, really. Bastard.

Didn't take her back to another appointment with him. Got her moved to a lovely female doc, so gentle with her, she loved going. But after the memory testing and final analysis, these appointments came to an end. There does seem to have been a system of 'diagnose, tick a box, then show them the door', which they say this new unit is meant to change....

No progress, but at least my head has stopped spinning...

I'm now a little clearer about things.....

With thanks to your emails, messages of support, & a trawl through the NHS website. Here's the situation:

There are drugs that can help Altzeimer's, but not Vascular Dementia. Mum does not have Altzeimer's. Least, no one has mentioned it. Some doctors do prescribe the drugs for Vasc. Dem. but if they do, it's against NICE guidelines. This is why, if we went private with a clinical psychologist, we wouldn't get NHS help with the cost of any drugs that were prescribed.

BUT, it is very unusual for mum to get Vasc. Dem. at 68. This is usually far too young to get it with no other underlying conditions. It is possible to have Vasc. Dem and Altzeimer's together. So maybe this is a possibility?

As to the efficacy of the drugs I have received conflicting reports, at the one end of the scale saying that they work only for 6 - 8 months (which is also what the neurologist said, actually) to other reports from people who have relatives who've been on them for years, in one case, 8 years.

For our next step, I think I need to write to the neurologist for clarification of the diagnosis, and to stress that if she thinks the drugs could be of use then we really need to get them as soon as possible. Maybe her caseload is so great she cannot keep tabs on what's happening on individual cases, and maybe she doesn't realise that there is a 10 month waiting list for this next step that she's sent mum on? I'll cc. the GP too, and if I don't hear back in 15 days, I'll write to our MP.

Phew.

OK not an interesting or uplifting blog post. Sorry. But thanks all, for helping me sort my head out. If I can just get some of it down as a to-do-list, it helps me cope. It stops me feeling so absolutely helpless.

Mum had a low day today. It's harder when she is down. I just want to make her smile.....

Ghost stories and shadows

I am nervous about typing this in case it tempts fate, but mum has had a few good days.

Even on good days, there will be moments when I am reminded that all is not well. Just as I am relaxed around her, something will happen or be said that makes me sit up.

Today, she talked about my aunt, who had had a flat next to hers in the 1960's. It was part of an old terrace townhouse, Victorian, or earlier. They both tell a tale of how it was haunted, how they would hear footsteps in the empty flat above, and how, after they had scattered flour over the floor up there, they went back and found two sets of footprints leading out of a cupboard and into the opposite wall. Side by side, an adult's and a child's.

"Oh yes, " I said, joining in the telling, "and now it's a hotel, isn't it? I know it. Near Star Hill. In Rochester. That's right." She has told me this bit herself many times, but today she remarks,
"Is it? A hotel? Well I never!"
We sipped our tea, sitting outside a little cafe, people watching.
Then she asked -and this was the moment-
"But.... if it's a hotel now, where does Pat live?"
Neither of them have lived there since the early 1960s, but in that moment, mum lost 50 years.

I've been given a name for it now, this thing. It's vascular dementia. I've found an online forum full of people going through it either themselves, or caring for someone who is. I haven't browsed it very much, it's too upsetting for now as everyone seems to be in advanced stages. It's like looking into our future and it's so scary. She will go downhill in large steps, in sudden deteriorations. I lie awake worrying and crying about when? and how much deterioration comes next? and how long do we have? how long before she's just a ghost of my mum?

I posted a question about whether I should tell her what it is. The "D" word.
As I had suspected, they advised not to, not if it would cause more upset.
So for mum it is "memory problems", a side effect of the TIA and the resulting epilepsy.
After all, the time I saw her crying over this was the time she asked me, "I'm not losing my mind, am I? I'm not, am I?"

No mum, don't worry. You'll be fine. You'll be fine. I'm determined that she'll think she's fine.