Dementia again

[speedy gonzalez]

Yes hopefully that'll be the case. Reckon it's still worth mentioning to the gp though.
Mr Speedy also ended being his aunt's Deprivation of Liberties best interests person. It's an awful sounding description but when she was more mobile she tried to escape from the care home a few times.Not because she didn't like it there but she told us that when she tried the doors that led to the outside the alarms went off and all the care staff came running and she enjoyed seeing them do that!

[Mountain Goat]

Oh bless her.

We didn't use the healthcare one either (though there was a point when I threatened it). We got my dad (with my mum it happened too quickly to get either and that wasn't fun) to sign both the financial and the healthcare ones but, on the advice at the time of my solicitor, we only got the former processed through the court and held the latter back to send off if we needed to. Medical decisions are always going to be discussed with the family/next of kin and it's unlikely that you'll want to go against medical advice in the normal run of things. We did need to wield some power over social care but that wasn't a typical situation, and having it in my back pocket was enough to make them capitulate. (it was also a short term strategy as they were going to get overruled by more sensible corners of social care anyway, just not quickly enough).

However, I wasn't aware that it's more difficult to get the social one approved. That might have changed over time, it might be different for an aunt than for a parent, or it might be that my solicitor was unaware. But if it is more difficult for you at the moment then having it in your back pocket obviously won't carry that power.

I definitely agree that it's something you only need to bring out under particular, unusual circumstances though, and in most cases it won't get used.

[Texaco Shirley]

Apologies, this will be a bit rambly but I think a sort of diary might be helpful (for me, I’m not expecting anyone else to find it useful).

The GP phoned on Monday to say bloods were back and showed slightly high cholesterol but he didn’t think that was relevant. There was some protein present so he needs to do a urine test to rule out myeloma before doing the referral. (She tried to give a urine sample last week while we were waiting for the blood test appointment but after struggling with the little pot for some reason decided to fill it with tap water.)

She has an appointment for 9.50 this morning to go in and give a urine sample, they will provide a more practical receptacle. I phoned last night to tell her and it was a very odd call. She seemed convinced her brother (died 20 years ago) had been there and possibly one of his old colleagues but then had moments when she realised he was dead but thought it happened last year. (Her other brother died about 18 months ago which might be part of the timing confusion). She also seemed to think I’d been there watching football with her except she kept talking about me in the third person and then said it couldn’t have been as I was at school. In the end I started talking about the appointment and she suddenly snapped out of it and was entirely coherent apart from forgetting a couple of words. I left it saying she needed to leave just before 9 this morning and I’d phone to remind her.

This morning I phoned at 8.15 (in case she wasn’t up to give her time to get ready) and she was slightly out of breath having just got back, mystified as to why the doctors’ wasn’t open. She must have left before 7. She has no idea what time she did leave, basically she saw it was light and assumed she was going to be late. I suppose it’s positive that she actually remembered the appointment. I queried whether she’d thought to check the clock before she left but I get the impression she thinks time is something that happens to other people.

She said she’ll phone later to let me know what happens but I’m not holding my breath.

[Topcat]

Oh that sounds so very hard, I'm sorry.

[Cerise]

Oof, mate. That sounds really tough. Talk/splurge as much as you need.

[Derek Nimmo]

I'm so so sorry Tex. Can the surgery offer any resources to help, do they do home visits for example?

[Figaro]

That sounds really difficult, Tex. Do you think she’s safe at home?

[Texaco Shirley]

Thanks all.

I think she is safe at home if only because she’s lived there so long that everything (turning off gas, locking the door etc) is a totally ingrained habit. A few months ago moving her nearer us seemed like a no brainer but now I think an unfamiliar environment could be disastrous.

I don’t know whether the surgery do anything but she’s being referred to the memory clinic which is part of a specialist mental health trust and I think (hope) they might offer more in the way of support.

[Edith Bacon]

This all sounds so hard, Tex. I hope you get some good support close to your mum.

[emma_p]

S's dad came to the same conclusion about moving, so they're stuck in a huge detached house with a massive garden for now. They do have someone to do the cleaning who also looks after his mum once a week so his dad gets a little break from caring. We're lucky that S's dad is amazingly fit and healthy (for an 84 year old!) and endlessly patient but I do worry about him/them a lot.

Thinking of you Tex, it's tough. If you ever need someone local to go and check in with her, I don't think I'm too far away.

[Texaco Shirley]

Thanks emma, that’s very kind.

[Princess Morripov]

I’m sorry Tex, that all sounds very difficult. Has she got any neighbours you could ask to knock on and check on her every so often? It might be worth asking the doctor about community home visits if they are possible at all?

[Duophonic]

It sounds extremely difficult I'd echo Pov's suggestion, is there anyone local who can check on her?

[Figaro]

I’m sure the GP would be happy to visit her at home if she needs it, but it might also be worth looking into things like a personal alarm of some sort so she could press a button if she needed help or if she fell. They aren’t perfect but they do make a difference. It’s good that she’s still remembering to lock her doors etc. If you feel she is not safe then you can phone social care who would be able to do an assessment and organise things like an OT to come in and see whether there’s anything that she may benefit from to help her at home. One thing which can be common in people who are confused is unfortunately a tendency to wander the streets, particularly late at night or very early in the morning. Negotiating all of the different sorts of support etc can be really complicated sometimes.

[Texaco Shirley]

She’s physically healthy but confused about time so the wandering the streets at odd times is more of an immediate concern than e.g. falling. I need to find out what the memory clinic assessment involves. Their website suggests they assess you in your home but the GP thought they would do a brain scan which presumably needs to be in the clinic.

[Jupiter]

I'm sorry, that sounds very tough. My mum started to wander but it was further down the road when the dementia was really taking over.

[Mountain Goat]

I'm sorry Tex, it is all extremely familiar and awful.

It does sound like social care need to be involved in some capacity now as Fig says and I wish I could properly remember all the bloody details as it is true that navigating this is really complicated (and also can vary by area, so even if I could remember it might not help). But there is likely to be plenty of at home help available. The wandering is a tough thing to manage though, as is time confusion. It might be useful to look at ways to ensure she eats, as one thing that often happens when people get confused about time is that they miss mealtimes, and of course not eating properly then exacerbates their confusion as they're hungry too. Home visits ( social care should be able to organise) are useful for this sort of thing.

I agree that for now she is better off not moving, the familiarity will ground her and help her cope better.

Do you know when the memory clinic assessment is yet?

[Figaro]

They usually see someone in the first instance to make some assessments, either at home or in their clinic, and then organise a set of blood tests and usually a brain scan as well. These are mostly done to rule out causes besides dementia, but often the brain scan can also help to identify what sort of dementia it is. They would also do a series of memory tests. Depending on the results of these, sometimes medication can be prescribed (these can't reverse what's happened but can to a certain extent slow progress somewhat). Depending on various results, and depending on the clinic and the local setup, they will usually put you in touch with sources of support going forward, and will either keep her under followup or discharge her back to the care of her GP - again which of these it is depends on all sorts of things. In my area they don't tend to visit at home unless someone is too physically unwell or confused to be able to leave the house, but in some areas it's more usual. It is really useful to assess someone at home and see how they seem to be doing in their home environment, but equally it obviously takes a lot longer, so in my area they limit those appointments to those who couldn't be seen otherwise. In some areas they have it set up as a one stop clinic where you have your scan and bloods on the same day as your clinic appointment, and others book those after seeing you for the first time and you get separate appointments to return for those. It's a bit hard to be sure of the exact setup as it does vary so much from area to area.

It might be worth giving social care a ring, they are usually pretty helpful, if very overworked, so given that it may be a little while before they would be able to assess her anyway, it may be worth getting that process started. You don't want to wait until it all becomes an emergency - unfortunately this is often how it goes. They very rarely say there is nothing they can do, and especially with her not having any family nearby, I do think she sounds like she would be consider a vulnerable adult who they would want to know about.

[Texaco Shirley]

Not yet. The GP said he needs to do the urine test and rule out myeloma (and presumably anything like a UTI which could be contributing) before he does the referral.

The time confusion is really tricky. As even if she looks at a clock I don’t think she trusts it so if it disagrees with what she expects she ignores it. I am also wondering at the moment if she is unable to make sense of the clock we got her. It’s a dementia one which shows day, date and time of day (e.g. Monday morning) as well as the time but it’s digital rather than analogue and I’m starting to wonder if it’s just incomprehensible numbers.

[Texaco Shirley]

Thanks Fig, that’s helpful. It’s the West London NHS Trust if anyone is familiar with it.

The GP did a memory test which she failed fairly badly, it was worse than I expected but some of it might be being put on the spot. I know she knows she lives in London but she couldn’t answer the question “what city are we in?”