Struggling towards accurate diagnosis - Urgent advice would be welcomed?

[Dave W]

Gordon Bennett, here we go again ...

Stuck at work wrestling with hideous schedule, but a quick posting for any comments anyone may have.

After a week of a CPN visiting (as I've been unable to visit, I have only Mum's version) which she'd accepted at first, Mum is now kicking up a stink about being talked to like she's stupid, told to make someone go with her when she's goes shopping and so on. Apparently there is also now a bill building up (from Social Services? - one of Mum's neighbours is checking facts and will phone me this evening.) And last time I could speak to her, she was waiting for her GP to phone her back so she could moan at him about it all. She seems pretty lucid at present - although I think she may be inventing a CPN smelling of drink as a means of trying to justify stopping them coming - but the scenario seems to be getting her down pretty seriously.

Against a backdrop of no real diagnosis (anywhere from short term memory loss plus depression to possible dementia following small strokes), how do I play this one? (Having done three weeks work in a week last where I'd spent 9 days with Num to and fro from GP to referal Pyschiatric Doctor for memory test, I'm exhausted and 100 miles away.)

Dave

 

[Dave W]

Wise words, anyone?

Well, a week where Mum seemed much calmer, coherent (although I could't visit last weekend given choas on tubes and disruption on railway line from here to London on top). Neighbours reporting the same and we've all been optimistic that initial doctor's diagnosis of some memory loss and overlying depression may well have proved to be right.

Social Services are making half hourly visits each day (and tablets are being taken properly) but I have to persuade Mum to sign up for this to continue, and to pay for it (she has too much saved to be eligible for benefits). Also plucking up courage to try to find an opportunity to discuss Power of Attorney with her, although it's not going to be easy.

And then ... Thursday morning I got made redundant. Bang. Out of the blue. My own financial situation is extremely delicate - ok if I'm earning (to repay old debts through long pay cut through company sticky patch, expensive split up with former patner and more), desperate if I'm not. So the job hunt is in ful swing already - mercifully I have helpful local connections in the business community, and I shall be leaning on them as hard as possible to help.

This morning I've missed a call from the local Home Care Team in my Mum's area, and can't get through on the number that called me (it's a mobile). They didn't leave a message.

Any wise words to stop me spinning off into anxiety overdrive would be very welcome.

 

[Jude]

Hi Dave,

Sounds like you're really having a fun time right now!

I often wonder why there seems to be a conspiracy to kick us up the jacksie when the going is really tough. Just when you thought it was safe to go back in the water............ etc.

Hang in there! The only way is up now. Just keep on thinking 'better job just around the corner.' Mum's fine for now.

Positive programming required and it will all get sorted.

Jude

 

[Sheila]

Oh boy Dave, right can'o'worms then!? Well, sadly if your Mum has money, they will take it if she needs help. Sorry, not what you want to hear, but it is the truth. They did the same to my Mum, thats how I know. If your Mum needs daily/several times a day back up, then, it has to be really, doesn't it? Thats how I handled it anyhow. Then, when Mum needed 24/7 I moved her in with us, but gradually used what ever services I needed to cope. OK, she had to pay for them, but if she had gone into a home it would have been the same. It's a sad fact, but if they (the AD sufferer) have it, the powers that be will take it, till they get down to a set amount. Check this out as it changes at least anually or about that, so I can't tell you quite what to expect. It's more if they are at home, once they go into a "home" it will be much less. It's the pound of flesh scenario. Sorry to be cynical (and I expect I can't even spell it!) but that's the way the system works. I think it stinks personally. They pay all their lives, then get ill, "oh it's ONLY dementia, that doesn't count, hit 'em with the bill!! " Grrrrrr!!
Sorry to hear about your job, you must be feeling really .."fed up".....!! Do hope you find something else soon. Don't let 'em grind you down, your worth much more than that!

One suggestion I would make, is to get the POA in place ASAP, if you leave it too late, it will be a nightmare and you may not get it if the diagnoses changes suddenly to dementia. We only just got it all sorted. If you don't it is so much harder. Also, if you do get a diagnoses, think about putting in for attendance allowance, it's not means tested as far as I know, and could off set a little of what your Mum will have to pay out. At the moment, I believe it is between £55 and £60 a week.

I do hope things sort themselves out a bit for you soon, this nowhere land must be a total nightmare. Thinking of you, love She. XX

 

[Jude]

Dear Dave,

Sheila's right about the urgency of the PO. You do need to get that sorted out pronto. Losing your job right now might actually be a short time bonus in a weird way, because it will give you some much needed time to get things in order.

Jude

 

[Dave W]

Thanks Again

Well the phone call turned out to be a new care worker who wanted to make sure she was heading for the right road, so that was one panic over.

Mum has filled in the form for them to visit 30 mins per day and understands there will be a bill (about £200 a month, but she can afford it from my knowlede of her affairs at present). I've checked the form over, and she's filled in what needs to be accurately. I've also filled the details for them to copy correspondence about charges to me.

And she's agreed that Power of Attorney to let me help her with the finances will be a good idea. So off to get the right form, and speak to a good friend who's a solicitor. While the iron is hot, will go back next weekend (me and my partner are due in that direction for a 50th birthday, so we can visit together - she knows him and is very fond of him - he's a very calm fella, which seems to be a soothing influence), so I will use his example to impress on her that an EPA would also be a good idea to fill out (but not yet register), as he has one in place lest anything happen to/with his own mother.

From your own experience, would it be wise or foolish to speak to her GP about any of this? - I don't want to run into the nightmare scenario of him saying she's not fit to sign one, other or both.

And if there are other things I should be looking into and briefing myself on, now would be a good time to mention them - at least I have some free days to scour the web and the library.

Apart from having lost her cheque book again, she seemed much brighter today - as she has done on the phone all week. She's had her hair done, dressed herself up, obviously been eating better and taking care of the garden too. And she seems fond of the care workers too, which is bonus, I guess.

Will dedicate this evening to polishing the CV (I play in a charity with 11 other local business people - they all want copies pronto, as finding me a good job is their self-appointed mission), and trying to unwind. So ... time to retreat to the patio, admire the lobelia and the lavendar, and sip the peppermint tea.

Sheila and Jude, if you were here right now I'd make you both a cup with pleasure and gratitude. Glad to know there are still plenty of good folk out there.

Dave

 

[Sheila]

Hi Dave, without knowing your Mum's GP, it's hard to say how to play it. Usually it is seen as OK as long as the person is of sound enough mind still to know what they are doing. But it is a very dodgy area, thats why it is so important to get these things set up. I have already done one, so has my husband. We hope never to need them, but should it happen, there is no question as to us knowing what we were doing.
As you don't have a diagnoses yet, all you can do is make tentative plans to ensure here well being should the need arise, it is probably too early to do more than chat to her gently about what she would like to happen should she ever be unable to cope alone. Again, as I don't know your situation or how you and your Mum usually speak about things, it would not be appropriate to advise. All I can say is that years before my Mum was ill, she said she would live with me when she got old. I acted on that. Good luck, She. XX

 

[Dave W]

From your own experience ... ?

Did you use a solicitor to set up EPAs, or take the DIY approach? Frankly, I'm trying to save time and also avoid a bill - I have some redundancy pay coming, but not a huge amount - but don't want to do anything daft. (I'm pretty bright, so it's unlikely, but this is a pretty anxious time one way and another!)

We've already spoken to the extent that she's ruled out moving in with us here - we're 90 miles from anyone else she knows, she doesn't know the area, would struggle with stairs and very gadget ridden house, and shops are miles away. I think we'd both prefer it if she can remain in the neghbourhood she's been in for 40 years. Beyond that, I've not yet ventured, although the degree of increased perkiness might make that one more possible at the moment. Fingers crossed, she stays calm and settled this week - she's a whole lot better than when I was down before.

Dave

 

[Jude]

Dear Dave,

I did a DIY job on this. I think I originally picked up the POA documents from the Cits Advice, filled them in and had my parents sign them. After that I sent them off to the COP and then had to advise every close relative of my intention to take on POA. Sorry I can't recall how much the document registration was but it took about 5 weeks or so in total.

Best wishes,

Jude

 

[Dave W]

Thanks Jude - anyone have experience of General Power of Attorney set up?

Given I can corner a pet solicitor during the week, I think it's time for the same route.

Although what you've done was an Enduring Power of Attorney. I want to get a General one set up first, as that means I can take care of her accounts for her while leaving her free to act - I can intervene if need be.

Any experience, anyone?

 

[carol]

I think if anyone is losing mental capacity, then you should set in place (but not necessarily register) an enduring power of attorney. It only takes a small stroke, or a downward spiral and you could have lost the opportunity of setting up an enduring power of attorney. I was told by a member of the Alzheimer Society 7 years ago when my m in law was first diagnosed if I hadn't already done so, to arrange an enduring power of attorney. The solicitor spoke with my m in law on her own, to make sure that she understood what was being done. It is only the last couple of years that it has been registered, and I think we paid £220 for registration.

Carolx

 

[Splat88]

We had an Enduring Power of Attorney set up for my mother in law a few months ago, we used a solicitor because we wanted to make sure it was all okay, as she has a fair amount of money. The solicitor insisted on a written report from the consultant at the clinic, and as you have said, you can use an EPA before it has to be registered with the Court of Protection. Mary is able to understand her financial situation when reminded, and the solicitor went to great lengths to make sure she knew exactly what was happening. He also advised us not to register the EPA until we felt Mary's mental capacity was so impaired she could not grasp her situaiotn.

One word of advice, when registering with the banks, be careful. Some were okay with low grade dementia, other preferred to put convenience as a reason, or they would insist it was registered.

 

[Dave W]

Thanks Carol/Splat

Copies of both forms now sitting by my side, and off to see local CAB in the morning for any guidance they can offer.

May well - given currently kicking heels - suggest to Mum that I pop down during the week and that we visit her solicitor while I'm there.

 

[Dave W]

A small victory?

With calming influence of partner and a good neighbour to assist, Mum more than happy to sign both General and Enduring PoAs yesterday. Have collected all financial info so I can monitor her accounts, rather than a neighour she is falling out with. Have set up her friends & family with BT more logically, and am going to help her cancel a few pointless direct debits (pet insurance and so on) that she's paying a fortune for (that way she can afford to pay for Social Services without going overdrawn and needing to transfer money from other accounts).

Spoke to both mainand legal and welfare helplines here yesterday, and grateful for their advice, although readers/forum users experience as to way forward from here would be helpful. I'd like to be able to deal with banks etc. on her behalf while leaving her able to act for time being (although when she manages to get a replacement cheque and building society pass books - having mislaid the lot - I'll be hanging on the latter for 'safe keeping').

Another whole day lost for job hunting, though.

 

[Sheila]

Hi Dave, the general POA should allow you to do what you ask, that is what my husband and his sister have with their Mum at present. Should she become mentally incapacitated, it would then be registered and become an EPA. This is what was requested on the form in the beginning, that they would be able to act for her in an enduring capacity. Check with your CAB to make sure you have it all set out correctly if I were you. Love She. XX

 

[Dave W]

Now what

Was just making plans to see a friend who's a solicitor who's been through this with her own grandmother when ... Mum rings. Can't find purse (coins and keys), thinks people have been through the house (which she's not recognising as her own again today). In the middle of all this I'm trying to arrange a job interview. Should I phone her GP, or leave the Care Worker to visit as usual this morning (due shortly)?