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Memory clinic

(73 Posts)
WynkenBlynkenandNod Wed 02-Jan-13 19:54:05

Taking Mum to the Memory Clinic on Friday then will have to go and be all happy for DD's birthday in the afternoon.

I think the chances of her not having Dementia are pretty slim. Earlier she seemed very lucid but then rang here, asked to speak to DD to ask her if she'd given her a cheque for Christmas. Then got confused when I said it hadn't been cashed as there was another cheque on her last statement for the same amount. She knew she was going to give DD some money on Friday but couldn't get her head round the fact she could just write another cheque rather than getting the Christmas one back. I rang back about somethng and she's already forgotten about the Christmas cheque.And I need her NI number for the Attendence Allowance form, not much chance of that one !

She hit the roof when the letter came through from the Memory Clinic but my Brother and the Tracker Nurse handled her much better than me with the prove there's no problem approach. However at the end of the Tracker Nurse appt she asked quietly 'so what happens if I do have Dementia?'

The irony is she then seemed to forget about the appointment until I reminded her yesterday! We're calling it 'The Assessment', not sure if she does know what she's being assessed for. I'll be very glad when it is Saturday and it's all over.

digerd Wed 02-Jan-13 20:14:57

How old is your mother? I assume she is widowed?

WynkenBlynkenandNod Wed 02-Jan-13 20:34:57

She's 73 and has been separated from my Dad for nearly 20 years .

Beamur Wed 02-Jan-13 20:39:22

My Mum has recently been assessed at the Memory Clinic local to us - whilst you may well be attending elsewhere, I was struck by how careful and sensitive they use language. Dementia wasn't mentioned for some time, several visits before the concept was even touched on.
My Mum does have vascular dementia but is still working, living alone etc, but horribly forgetful. It's a scary thing to be diagnosed with and all the harder with a memory problem as you can't really retain properly what is being said to you.

WynkenBlynkenandNod Wed 02-Jan-13 21:28:49

Sorry your Mum has been through it Beamur. I suspect my Mum might well have Vascular Dementia now I've read up on it. A few months ago she was complaining about 'weakness' and I didn't think much of it at the time. Her memory issues have meant the cellulitis in her legs came back after a bad bout in the summer and were even worse this time. The District nurses have seen how confused she gets, hence the referral.

Encouraging to hear it's handled sensitively. I'm a very much need to know what I'm dealing with to stay in control person so have had a look at the questionnaires they use. A lovely friend was able to help out with that so at least I'll go in knowing what to expect. I'm just not looking forward to the being cheerful in the afternoon bit, DD's at a new school so I don't know the parents of the girls she's having and know I'm not going to be in the right frame of mind for being sociable.

Beamur Wed 02-Jan-13 23:06:39

My Mum has been having memory problems for quite a long time due to chemo, so she is more used to the idea that her memory is defective - but she was in denial for some time!
I'm not sure my Mum wants to know too much really, she knows she has a memory problem and that the doctors are trying to help slow the decline of it as much as they can, she doesn't seem too troubled by the situation but I don't know if that's because she doesn't seem to be able to think through the consequences of things generally any more. She is very much in the moment. Good luck for Friday.

I have no experience of this personally so forgive me if I'm not right with the terminology or sound insensitive.

I was listening to a radio article yesterday and they were talking about contented dementia. It was a real eye opener for me and made a lot of sense. Essentially, rather than keep challenging the 'mistakes' that the person has made, you deflect questions or tilt your answers to something that makes sense to the old part of their memory that they can still access.

One person called in to say that for example his father had forgotten that his mother was no longer alive. The first couple of times they reminded him and the grief hit him as if he was hearing it for the first time. After that, they decided to tell him that she was visiting family or away for work, both plausible if she were still alive. Telling him the truth benefitted no one.

If you Google contented dementia there's more.

I wish you well on what sounds like a difficult journey thanks

WynkenBlynkenandNod Fri 04-Jan-13 07:55:34

Your poor Mum sounds like she's been through the mill Beamur and you too sad

Marriednotdead, that's very helpful. I had fleetingly read about about not challenging them and have been trying to do this, it does help. Now I know the name I'll read up on it.

I had a serious of phone calls from Mum whilst on my mobile yesterday. When I rang her back she said Social Services had called and were coming to do an assessment. So jumped in shower and shot off only to find a lady in a nurse type uniform which threw me. It was the OT for an assessment. Mum kept saying one minute they tell you Friday then turn up on Thursday. The OT had explained on phone what she was going to do but she hadn't got it. She asked about outside agencies and I mentioned she is going to the Memory clinic. Then a bit later she said to Mum, 'so you're having trouble with your memory ', I nearly died on the spot. OT quickly got the situation and started saying how they like to screen people very early for memory problems as have drugs that can help it progressing if caught early enough. I noticed that end of assessment when making a time to come back she made sure I could be there, said she felt I should, she could clearly see the issues.

Part of me is worried that they won't find anything because then we'll be stuck in the situation where there's clearly a problem that is increasingly starting to interfere with her daily living and we'll be stuck with no outside support if she's clear on the memory clinic assessment. But then if there is a problem she has Dementia, a no win situation and I'm going to really struggle with the whole party thing this afternoon either way.

gingeroots Fri 04-Jan-13 08:54:58

Oh Wynken ,thinking of you today .

You'll cope this afternoon ,it will be easier than you're expecting .
Can you pretend to yourself that you're someone else ?
If that makes sense ?
Just pretend .

I think it's most likely it's your mum and the assessment you're most dreading .
Just put one foot in front of the other ,keep going and it'll work out .
Don't think too far ahead .

WynkenBlynkenandNod Fri 04-Jan-13 13:10:32

Thank you Gingeroots. I've told DH not to be nice to me but factual! DS having meltdown as his sister doing something and he isn't but Dah taking him off in his lunch break to get something with Christmas money.

Assessment done, the nurse was lovely. It was really hard as she was asking for my opinions and I didn't want to say what I thought but was able to skirt round it to a large extent and she was getting what I meant without me saying plus would look at me for confirmation when Mum couldn't see. I got one questionnaire so was able to write stuff and hand it back. She was praised for what she did well, came out knackered, kicking herself about not naming more animals, saying medical profession make you worse than you are.

She clearly has Dementia of some type but is fairly unaware as handled very well. They are getting Memory Advisory Service to come out end of Feb as she's fed up with assessments at the moment (OT yesterday), want her to consider taking medication, Aricept I think it is. She'll see the consultant but might be referred for brain scan first. I initially refused Carer's assessment but decided it would probably be a good idea to have it.

She also wants Mum to get a Power of Attorney in place (subtext was sooner rather than later). Mum was very muddled about what that was, kept thinking it was Will related. Got her home and had to rush off to DD. She's cross about having a brain scan and said she's not going. I'll work on that in due course, she'll forget for a bit soon anyway. She does keep getting cross with me though which is a little hard to take as not feeling well and dosed up on Lemsip but I'll survive.

Think she'll be Ok at home for a bit as hates going out. Reablement is coming to an end soon so will need to speak to Social Services re continuing care. She is desperate to get rid of carers but that can't happen. I need her to sign he Attendence Allowance form, she can't find her NI number so will need to talk to them about that. Plus I have an awful feeling somewhere along the line she has got rid of her alarm, can't get to the bottom of where the hell it is.

Sorry, that's quite long, it's my 'To Do' list!

Beamur Fri 04-Jan-13 13:34:26

Glad you managed to get there. I've found new reserves of patience I never knew existed with my Mum!
I've read a bit of the 'contented dementia' book, which was a useful way to understand a bit more about how dementia affects people - I try not to bring Mums attention to what she has missed/got wrong as it just frustrates her to realise what she is forgetting.
It sounds like your Mum Wynken has enough of a problem for it to be picked up by the specialists, one way of persuading her re scans etc, perhaps is to play up the more that the doctors know, the better they can help. My Mum has slightly martyr-ish tendencies about illness and tends not to seek help or advice when unwell, which has probably meant her blood pressure problem could have been addressed sooner. I think she appreciates that in future she needs to speak up about these issues as they don't tend to get better on their own, and now she is being properly medicated is actually feeling much better.
Hope you enjoyed the party!

Theas18 Fri 04-Jan-13 13:44:34

Have a hug from me . Get as much support as your mum will let you and do it early on. My parents go to " the autumn centre" and it's been a lifeline for the last couple of years (dad has vascular dementia)

BackforGood Fri 04-Jan-13 14:02:47

I have often thought, that an adult's version of the Early Support Family File would be so useful for folk like your Mum, who are getting support from different people, and sometimes get mixed up about who is there to do what.
They are designed for families who have a child with special needs, but the same principles apply. You don't want to keep repeating yourself, re-giving the same history, you want the professionals to know they should contact you (as your Mum's daughter) before any decisions are made, you want the professionals to know who esle is involved, you want all the information you might need (like the NI number) together in one place, you want some other emergency number for people to be able to use if they can't contact you, you want to be able to have all the appointments recorded, etc.,etc.
I think if my Dad were still alive when these were first designed, I'd have downloaded one and adapted it for his needs.

whataboutbob Fri 04-Jan-13 19:36:39

Hi Wyken just wanted to send my support, my dad was diagnosed with Alzheimers about 18 months ago but really i have been noticing at first subtle, then increasingly intrusive changes, for about 6 years. I have been through the phase of rushing around like a headless chicken feeling i had to address every issue and am now accepting i have to prioritise and can't address every problem as soon as it arises.
My Dad also does not want to know too much and so I have taken his lead and do not mention Alzheimers, but he is happy to admit he has "a not very good memory". Getting the diagnosis and his GP onside has been really useful because it has enabled me to get POwer of Attorney, deal with various problems such as fines for non payment of bills (so far all dropped when I send a medical report).
No one prepares you for your parents' vulnerability and decline. Maybe that's a flaw in our culture but realistically there are many in our position. My advice at this stage is to get health services involved, not to try and get everything right and take time out when you need to.

WynkenBlynkenandNod Sat 05-Jan-13 08:10:18

You're all lovely smile So sorry for all of you going through it. The party was lovely in the end. One couldn't come so just two plus DD. sat outside with one of the Mum's whilst they were Ringoing, she's really nice. Then back to our house for pizza. Really lovely girls, no edge to them and DD is really really happy, which lightens the load as she was bullied in her last school. One of the girls made me feel gutted. She lives in what some people call a rough area. She came out stinking of smoke bless her. We were talking and she hasn't been away for 4 years and that was with a friend. It's her birthday soon she really wants to go to a particular place but doesn't think her Mum will let her. Think that's down to money, my heart broke for her a few times and me and the other Mum are plotting together to make sure she can get out and about at the weekends a bit as we don't think she gets to go anywhere. I looked at her and thought she's got her whole life ahead of her and that a small helping hand could make such a difference to her. Her Dad's in prison, what a burden to carry for a child when everyone locally knows. She doesn't know it but she has become my personal mission to make sure she does as well as school as she can to give her as many choices as possible. The other two were telling her with her brother winding her up to ignore, walk away and be the bigger person. She is equally supportive of the and a lovely teen dynamic is merging, the side of teenagers which is delightful, enthusiasm, compassion and passion that makes you feel confident for the future. It was a case of sitting there and observing the cycle of life in action yesterday.

The point of my ramblings was that it all was put into perspective. DD is amazingly happy which after what she has been through is just brilliant. I've known for a long time that Mum had Dementia so now the professionals are in board which will make life easier. I'm not going to become her carer, I'm her advocate to make sure she needs the care she needs. I know she wants to stay at home for as long possible and the plus side of her not being able to walk is she'll be able to do that. If the time comes she needs to gointi a home then I shall make sure it is the best available .

Love the idea of doing some kind of book thing, repeating history has been getting a lot for her. Very noticeable yesterday how fluent she was about early life but much vaguer about more recent events. I'll ring a solicitor next week about Power of Attorney and my Brother will suggest to her about having a Third Party Mandate on her account immediately. I think with the Brain scan she'll be more amenable after she's had a break from all the questions and there's a waiting list anyway. That 's if the consultant decides to send her but I bet they do. I've got the a copy of the care pathway on my bedside table so will know at any point what is suppose to be happening, huge help.

WynkenBlynkenandNod Sat 05-Jan-13 08:19:31

Need to let my cousin and Aunt know. Mum is not from UK but is estranged from my Aunt, following argument after their other sister died. Ironically I'm now pretty sure that sister had Dementia. Think subtle personality changes from Mum exacerbated the tensions that were already there. This is one email I'll do in English as my German isn't good enough to say the situation exactly. My cousin's DD has excellent English so she can translate.

gingeroots Sat 05-Jan-13 09:54:32

What a lovely person you are wynken .

That's so sad about the girl with her dad in prison ,I hope you'll be able to help her - I imagine her just being part of such a nice group of girls must already be a huge plus .

Your approach to your mum's situation sounds spot on .

whataboutbob Mon 07-Jan-13 17:50:38

Well done Wynken you sound really strong and sorted.
Just me putting in my 2 pennies' worth- you really don't need a solicitor to get P of A. Save yourself a £100 or so and DIY it. You ring the office of the public guardian , they send you the form free of charge, book an appointment with your mum's GP, they fill in the medical bit. Your mum will need to sign (the bit I stressed about but in the end Dad signed OK) and you fill in your bit. There are a few catches: it's very important mum fills in BEFORE or on the same day as the doc (not after) otherwise it's invalidated. Read the accompanying notes carefully at least once before starting the filling in process. You need to also give details of a moderator who is happy to be informed of this and could raise objections. I chose my cousin who's my Dad's nephew, a GP and was pushing me to do it so obviously he raised no objections. You can also add another attorney for instance if other relatives want to take it on with you. I am sole attorney as my brother suffers from crippling mental illness.
Post again if you have any queries and be prepared for it to take a few months beofre you get the POA approved. Good luck

pippop1 Mon 07-Jan-13 18:08:07

DH did the power of attorney forms for his Mum and didn't use a solicitor. It all seemed to work out well. Organisations can be a little difficult about accepting them but we usually sort it out in the end.

We are about to get her post diverted to us as occasionally important letters are not shown to us so things "happen" or don't happen. For this you need to show the Post Office a current POA plus lots of ID, and pay the PO of course.

It's proved to be a v useful document so far. There are two kinds, the Health and Welfare one and the Financial one. Both are a good idea.

WynkenBlynkenandNod Mon 07-Jan-13 21:31:06

I don't feel happy sorting out the POA and I know Mum will want to see a solicitor. She wants to do it between me and my brother. He lives abroad, is this going to cause massive hassle ?

I've been doing loads of shopping for Mum recently and she is going to have to write a couple of large checks. Just realised that I shall have to keep records so there's no accusation of deprivation of sodding assets.

Mum has been very good ironically since Friday. She's now decided she absolutely wants a brain scan as wants to know how much damage been done. So she's accepted there is a problem which is a massive step. I think that the liklihood is she's got vascular dementia on balance. You don't get to have high cholesterol and Blood pressure for years and refuse meds with no damage really do you .

Tomorrow's job is speaking to Attendence Allowance people about the fact she's lost her NI number, OT back on Wednesday, need to chase surgery for surgical stockings and speak to SS about continuing care at the end of Reablement, sort a blood test, find some ready meals she likes. I'm hoping that once all this in place I can step back a bit.

pippop1 Tue 08-Jan-13 11:33:44

As long as the lawyer knows that your DB lives in another country he can sort it out appropriately. I imagine that you'd need it structured so that if he wasn't contactable you could make any decisions on your own.

I would also guess that the solicitor might suggest that your DM does a will, if she hasn't got one.

WynkenBlynkenandNod Tue 08-Jan-13 16:34:13

Thanks Pippop, that's helpful. Will solicitors ever do home visits ?

Social services just rang re the carers assessmnt referral from Memory Clinic. I have basically just said that I can not be her Carer, I can do stuff for another month or so but long term given the other various health conditions in my immediate family plus work that I can't do it.

So instead of a Carers Assessment for me she's getting Mum's social worker to call me today or tomorrow morning. I feel like a complete bitch but I not in a position to care for someone with Dementia, it's always me she's nasty to at the moment. I'll do everything in my power to make sure she gets the best care possible but I've read of so many Carers going under and I need to be here and well for my children.

whataboutbob Tue 08-Jan-13 16:46:53

That sounds absolutely fair enough Wynken and from my experience I suspect health and social care people prefer relatives who are upfront about what they can and can't do, to those who say they'll do everything then find they can't cope, get hyperstressed and difficult in their interactions with professionals. I've had 6 months of counselling to help me cope and begin to say to no to Dad and various other people.

Also it sounds like a solicitor could indeed be a good idea if there are other legal issues to be considered. Good luck

WynkenBlynkenandNod Tue 08-Jan-13 17:15:08

Thanks whataboutbob. I'm glad the counselling has been helpful for you. I'm a bit twitchy as friend who is a CPN said I'll probably have problems saying I'm not her carer. Then text from friend who is a practice nurse said 'hope you get her a good package of care sorted with out you taking it on' . Thy aren't inspiring me with confidence right now....

ThePlEWhoLovedMe Tue 08-Jan-13 18:41:34

Evening Wynken

Please dont feel guilty about not wanting/being able to be a carer for your mum - it is very common. You are legal entitled to a carers assessment - make sure you have this done - although you are highly unlikely to receive a service because of it - they do need to take your health and mental health into account. Did you have the renablement package via a hospital admission? This should have been followed up with a review after 4/5 weeks anyway. Before the meeting with SS think about exactly what you are able and prepared to do for mum - they will try to pin you down to know what you will offer. (Will it be cleaning once a week/food shopping - or are you unable to offer any help?) if you can not offer anything in an on going way - please make that clear.

The button you spoke about - i am assuming it is a life line button? You can get a replacement one through your SW - though you might be charged.

Does mum have Mental capacity ? If she has MC and refuses to have carers SS will not go against her wishes - mum (is she has MC) is entitled to make 'unwise' decisions.

Have a look at this FACS criteria On page 2 and 3 it sets out what criteria your mum would have reach to make her eligible for a service. You didn't say much about your mums needs so I don't know if she would meet this.
Finally do you have information on how much a care package would cost your mum?

Sorry for repeating anything you already knew and good luck with your mum.

I am a social worker providing care packages and renablement - good luck with your mum.

BasicallySFB Tue 08-Jan-13 18:49:54

Evening. I don't want to out out myself with too much detail - but have spent the past year getting diagnosis and support for my Nan (huge safeguarding and risk issues - SS not willing to take responsibility - MH unable to do anything as SS issue - SS saying it's MH....) anyway - have been through the mill with it! BUT now have fantastic care package (but costly, for someone with £800/month total income - care costing £440 - we pay whole amount ...) and she's very stable.

If you need anything feel free to PM - just not keen want to give anymore detail on board of that's ok smile

WynkenBlynkenandNod Tue 08-Jan-13 19:39:36

Thank you ThePie. The Memory Clinic did a referral for a Carer's assessment for me. When she first said I refused as was trying to explain although I have been doing a lot it isn't sustainable and I've only been able to do it with time off work. She said it was in my interest to do it so I agreed, hence the call tonight.

I said to lady on phone today that I have a family and work plus in my immediate family her we're dealing with T1 diabetes, depression, dyspraxia, gallstones and fibroids plus also have daily contact with FIL who is 86 living on own abroad with Parkinson's and diabetes. That I've done a lot but can't continue . So she said no point in doing Carer's assessment if can't continue being a carer and that Mum's SW will ring me when she's looked into a few things.

Mum started Reablement 5 December for 6 weeks. It was because she got cellulitis in her legs in the summer, was given strict maintenance instructions but couldn't follow them and the got bad again. Ir became obvious to me she couldn't cope with the medical regime and posters on here encouraged me to contact SS which I did and was surprised how quickly they started. We're waiting for the surgery to bring surgical stockings which will need someone to put them on apparently so she is going to need to continue having help because of her legs.

We've now got the added complication of the Dementia issue to contend with on top of her legs. We were told that at the end of Reablement a financial assessment will be made. I've no idea how much a care package would be or what she needs but she's clearly going to get worse. I think I can sort the Aid alarm and find out if she is still paying, she says not.

She does have MC but thankfulky is agreeing to have carers to help with her legs. She does know there is something wrong with her memory having been in denial for years. Today she managed to work her new washing machine, time the cycle but couldn't remember during the course of conversation what time the OT coming tomorrow, why OT coming , despite writing it down. I rang Attendence Allowance people to advise she can't find her NI number and I can send that in without.

BasicallySFB, I'll PM you if that's ok, thanks.

BasicallySFB Tue 08-Jan-13 19:57:54

No problem. Sounds like you have a huge amount on.

Carer's assess - worth doing to solidify YOUR needs - it's less about what you can do an more about what they can do to help you (if you see what I mean?)

WynkenBlynkenandNod Tue 08-Jan-13 20:14:49

I need an all expenses trip to Barbados I think grin I'll mention assessment again tomorrow as woman on the phone wasn't going to do it.

BasicallySFB Tue 08-Jan-13 20:21:51


ThePlEWhoLovedMe Tue 08-Jan-13 21:38:10


If mum has savings above 23,250 she will be have to pay for the whole CP. If 0 savings the cost of the CP will be covered. If in between these amounts there is a sliding scale of a % she will have to pay towards the cost (very minimal) - mum (or you on her behalf) will need to fill out a financial assessment form. The most we provide is usually 4 calls per day (with two carers each visit) - for bed bound people who need to be hoisted - this can cost 400 per week.

hth and good luck - let us know how you get on

BasicallySFB Tue 08-Jan-13 21:41:55

My nan has no savings at all (and substantial debts) - still has to pay £440 a month despite only having £800-odd income sad

BasicallySFB Tue 08-Jan-13 21:43:07

Thank for that link BTW - very useful PIE

ThePlEWhoLovedMe Tue 08-Jan-13 22:12:25

SFB I would love to know why - seems really unusual - what area ?

BasicallySFB Tue 08-Jan-13 23:19:23

Would rather not out myself but South of London- we were told it's assessed on mo thy income not savings and that it's not 'our proble if she's got debts', and I quote - the debts are a whole other story and being sorted now.

But did seem odd half her income goes on care package - doesn't leave much. Luckily no mortgage!

BasicallySFB Tue 08-Jan-13 23:20:07

FFA! Problem not proble! And monthly. Obv!

WynkenBlynkenandNod Wed 09-Jan-13 07:19:11

I don't think Mum has any savings except for some out of date £20 notes in the cupboard I need to change for her. This is all hugely helpful, thanks so much.

SFB, does she pay council tax any more ? I thought I'd read with a dementia diagnosis you're exempt, but could have made that up. I've woke. Up this morning knowing I'm right to refuse to be her carer. I basically have been for a couple of years now if I think about it properly and it has really really affected my health. I'm not feeling at all well at the moment. i've got flipping memory problems this week but I know it's stress. DH's blood sugar fine this morning so hopefully that's stabilising again as all this threw it right out and he was on the brink of fitting the other morning which hasn't happened for about 7 years.

I will take her to medical appointments and do her finances (if she let's me but she'll have to at some point) does that sound reasonable ?

pippop1 Wed 09-Jan-13 13:37:11

If you have a "severe mental impairment" and live alone then you don't play council tax. We got this exemption for my MiL recently. We also got it backdated to the date of the dementia diagnosis (a year or so).

It was sad that we couldn't tell her as she'd either not understand or be v upset. She has had carers going in for a couple of years but no one told us about this exemption which was rather annoying. I happened to read about it on the Alzehimers charity's website. It's nothing to do with amount of savings, value of house or anything else.

WynkenBlynkenandNod Wed 09-Jan-13 16:41:09

Lots going on today. OT came with raised toilet seat plus advice re leg lifter. She also helped fill in the Attendence Allowance form which was a huge help. Explained our home circumstances and she totally agreed I can't do much beyond medical appts and finances and was shocked to hear I'm working. Once she heard she said to Mum it's important I get back to work. She said I could ring her any time and that she knows Mum's social worker and it's if e to say she could ring her. She felt Mum needed a care package. Was able to help her with a bit of advice about someone referred to her with Dyspraxia, nice to be useful !

Rang and left message with Tracker Nurse to see if she can find out what's happening with the support stockings as that's what Mum will accept Carers for as knows she won't be able to do thm herself - though hoping she will be able to despite being told firmly by Tracker Nurse she won't and will need the Carers.

Found the Solicitor who did Mum's will way back in the 90's. He is lovely and prepared to travel down to do a POA. Mum doesn't want him for 4 weeks but will work on that. Social Worker then rang having spoken to Mum. She told me Mum doesn't want Carers after Reablement stops on Sunday. And that the Carers say she often won't let them wash and cream her leg. That she'd asked if Mum had over 23.5k and Mum said she had. I said that was probably as she thought she meant the house as with a care home assessment and that Mum is waiting for the Surgical stockings . She said help was finishing Sunday but we could ring in future if problems . I said I am very concerned, she needs the stockings and when left to on devices the condition of legs deteriorated and she's now facing dx of Dementia and asked for a meeting with her and Mum at Mum's . She agreed to this next Wed as long as I had sorted stockings out. I suggested she rang the OT as she knows Mum's condition and she said she would.

She explained how the financial assessment worked ie amount contributed will be the same if she needed one or four visits a day but if amount was less than max she needs to contribute then she pays the lower amount. She did say would Mum be ok with no visits from Monday on so I said I guess she'll have to be. At first she very definitely wanted Mum off the books. Will see her Wednesday hopefully.

Rang Mum who was very surprised and cross to hear Carers say she refused Care. When pushed she said it could be the one who smelt who she wanted out of the house. I said you can't stop the Carers because of the stockings and she said SW didn't mention them. Didn't realise she'd said she be self funding and thought when she said 23.5k that was including the house. Mum said she definitely wants me present at meetings. Found the bathroom light cord had snapped which Mum says carer did but didn't too her. Can't be sure that Mum didn't do it and forgot.

So nothing tomorrow and cleaner is going in which is good. Friday it's blood tests and off to look at Waitrose ready meals as she doesn't like Wiltshire Farm foods or the hot meals . Tracker Nurse to ring re stockings and will update her re Menory clinic as surgery not yet had a letter. Feeling slightly more hopeful I might get back to work fairly soon as desperate for my life back now.

WynkenBlynkenandNod Wed 09-Jan-13 16:54:41

Oh and she does have a phone, the unit is now in her bedroom. Tested it and still works, they are sending a wrist band.

FreckledLeopard Wed 09-Jan-13 17:07:24

My mother has vascular dementia -her memory has become significantly worse over the last twelve months.

We sorted out a Power of Attorney, but it's not yet registered, since at the moment I'm able to take over most of the paperwork anyway (she now sends me all 'important' letters etc to deal with, as she is no longer able).

Forgive me if I'm wrong, but I thought that Aricept was only prescribed in early stage Alzheimers? My mother has been to memory clinic, GP etc, but there's no treatment at all for vascular dementia unfortunately. Hers was caused by long-term high blood pressure (which was treated) and a series of mini-strokes (TIAs), which is exactly what happened to my grandmother too (and, if genetics play a part, will likely happen to me in forty years).

I'm struggling a lot with trying to be patient with my mother, when she's asked the same thing ten times. It's a horrible disease.

WynkenBlynkenandNod Wed 09-Jan-13 17:19:47

Sorry about your Mum FreckedLeopard, it is a horrible disease. Mum isn't definitely going onto Aricept. That's what the Nurse initially said, consider taking Aricept and see Consultant after goung through the assessment .When I said about Mum's balance and muscle weakness (i know it can be significant so brought it up) she obviously started thinking Vascular and said the Consultant would probably want a brain scan.

I think she's most likely got Vascular rather than Alzheimer's and if that's the case then I don't think they will give Aricept as I'm pretty sure it's used for Mild/Moderate Alzheimer's. It just got mentioned to start with before the Nurse considered the vascular aspect. She's a prime candidate for Vascular having declined to take anything for her Cholesterol and BP for years.

BasicallySFB Wed 09-Jan-13 17:38:05

Just checking in - sounds hectic!

If your mum refuses carer's, you'll need to go down route of assessing mental capacity - if SW doesn't do this then memory clinic consultant will hopefully - it's what we had to do for my nan, once we had her assessed by cons it was much easier to get SW to implement care package.

WynkenBlynkenandNod Wed 09-Jan-13 18:25:34

Thanks SFB. I was thinking we might have to do that but desperately need to get her to sign the POA forms first. She doesn't want to do this until she's had the Brain scan. But it's not 100% she'll get one and I really think the solicitor comes ASAP. My brother is hopefully ringing in a minute , I'll try to get him to talk to her.

What on earth do people do without the Internet for support ? I guess they muddle on until crisis point.

BasicallySFB Wed 09-Jan-13 18:50:17

Yep POA crucial - BUT if that fails you can apply for a Court Appointed guardianship order - basically similar, as we've had it explained, and an independent person checks accounts etc - but you +/- brother make the day to day decisions. We're just at the start of that process now. You'll also need GP or similar to witness POA.

It's a minefield. Very hard.

WynkenBlynkenandNod Thu 10-Jan-13 09:58:59

I'm between the Devil and the Deep blue sea. I need to argue with SS she doesn't have capacity, that I've been her Carer for two years (which I have if I think about it, it just creeps up. DD keeps saying stop being Nana's carer, it's too much, stresses you out then you get cross with us).

But on the other hand we need her to have capacity for POA. Sodding marvellous. The way forward is the surgical stockings, she'll accept carers for that as she thinks that means her legs will be well enough to go on holiday. So I'll get a pair, any pair there for the Wednedsay meeting with SW and try to persuade her to send carers in once daily to put them on. That will buy me time, I then need to get POA in place , get all the stuff done with the memory clinic in place then push for transfer to the MHT as the OT said yesterday.

Was going to follow up conversation with SW with an email but don't want to raise too many doubts about capacity right now. I just want one day where I'm not dealing with this, just one. The SW seems to think if she's just being diagnosed then it will be years before serious problems arise but this has been going on a long time. She's been superb at covering up but the last couple of months she is at the stage when outside health professionals can spot it. We wrote a letter about 2 years ago to her GP regarding this then another in the summer. By that time I'd persuaded her to put on her records that GP can speak to me so action started. Looking back there have been subtle changes for at least 6 or 7 years now.

WynkenBlynkenandNod Thu 10-Jan-13 10:53:30

Oh crap, I can't stop crying which is not like me at all. My brother won't ring. Mum rang, did I order life line pendant . Yes I asked them yesterday to send a wrist band , you were next to me and agreed you wanted one, they said it would come today which it has.

gingeroots Thu 10-Jan-13 18:27:27

Didn't want to read and run .

Sounds awfully hard Wynken , you so need a day off to recharge your batteries .

Just thinking about your mum's "mental capacity " . I'm sure it must be common for this to fluctuate in people so just wondering if you couldn't stress that to SS ,she has some good days when you could get POA but that these are getting less and less ,can't be relied on ? If that makes sense ?

Sending you strength vibes and hugs .

BasicallySFB Thu 10-Jan-13 19:30:21

Oh what a very very difficult day sad I really feel for you. It DOES get easier - practically if not emotionally at first. Here if you need anything smile

WynkenBlynkenandNod Sat 12-Jan-13 08:54:44

Thank you both. Feeling better today. Quite a hard day yesterday but progress. Blood tests done. Going Monday for surgical stocking measurement - they hadn't turned up as she was meant to go to be measured but forgot. Has taken meds twice on one day this week.

Thursday's episode turns out to be PMT but I scared myself a bit so am more determined to get this sorted. Spoke to my brother who said don't bother with Solicitor for POA, print them off, take her to GO to get signed. Also reminded her of a savings account she has forgotten about and got o the bottom of savings. Discussed care homes, she would not want to go to a private one. My neighbours son works in our local one so will speak to them at some point. Aiming still to keep at home for as long as possible as that's what she wants.

Just done a Long email to her SW before our meeting on Wed. Explained Mum's side of the conversation ie she thought she meant savings including the house, that she was upset to hear Carers say she won't let thm help as she has had to ask them to cream legs. Care book shows day after day saying legs were washed and creamed so took photos of that in case book vanishes on Sunday when Reblment stops.

Explained is a new diagnosis but very long standing and I have had to do lots the last 18 months and not been able to work since before Christmas but do need to return. Listed immediate family health issues. Stated I am withdrawing from her Care part from taking to med appts plus helping her with her money . that on Thursday I could not stop crying nd am worried that I am heading towards Carer breakdown and DH is struggling (not sleeping, blood sugar haywire) due to stress.

Said with Mum's diagnosis she is a vulnerable Adult and will need safeguarding. Gave examples of Meds, leaving cooker on (yesterday though she remembered and asked me to check) and putting packaging in cooker that should have been removed. That ultimately I think she'll need transferring to Mental Health Team once Memory Clinic finished assessments but needs care now . That she will accept Carers for daily visit to put her stockings on so for now that is probably the way forward. So managed to get in I'm withdrawing care, Carer Breakdown, Vulnerable Adult and Safeguarding in one letter.

Am off for coffee with DH whilst DS at a club this morning and we're going to try to have a good weekend, get DS's homework done so one less thing to do in the week . House is hoovered , washing up to date, food in fridge, school /Cubs admin done, rubbish out, so far more on top of things. Aim now is to get me back to work .

BasicallySFB Sat 12-Jan-13 09:47:08

That sounds great and very productive! Print a copy of email showing it was sent if that makes sense?

You're doing an amazing job holding it all together - and absolutely right to do what you need do your whole family including yourself - going back to being a Daughter not a Carer is really important and helped my Mum (an me!) no end.

Have a lovely relaxed weekend smile

WynkenBlynkenandNod Sat 12-Jan-13 12:02:53

I've had a standard auto response for the email but will print it off, good idea. I'm going to get a diary just for Mum stuff and put bits in there.

It's very encouraging that you have been able to go back to being a daughter, gives me hope. Reckon I'm 4-6 weeks away from that but can hold it together till then.

Just had a lovely couple of hours with Brunch, the papers and a cuppa in a care by the sea on this very rainy day, feel human again.

BasicallySFB Sat 12-Jan-13 14:19:53

Sounds blissful :-) It DOES come back - the hard bit comes first, but hol on to the thought of easier times to come!

pippop1 Sat 12-Jan-13 14:28:29

Alongside the diary may I suggest you purchase a radio controlled clock which shows the date, day (as a name e.g. Monday) and time so that she can look at the right day in the diary. We got one for my MiL from Amazon.

WynkenBlynkenandNod Sat 12-Jan-13 15:29:23

Great idea about the clock, just ordered, thank you. It's good to hear it does come back, I can sort of see the light at the end of the tunnel now. We're going away over Easter to see family in Germany (mum's estranged sister ironically ) so at least I know there's something to look forward to. Plus I have booked tickets to Chelsea Flower Show this year having wanted to go for many many years. Plus it won't be long till the spring bulbs are up which always makes things feel better, our first Primrose is out smile

Thanks again for all the support, it is invaluable.

WynkenBlynkenandNod Mon 14-Jan-13 14:28:44

Todays issue of the day was the surgery rang to say I shouldn't have been told to take her in to be measured. The pharmacy dies it but first thing. Rang pharmacy who said I can do it as soon as she gets up in the morning a d doesn't she usually go to the other pharmacy - yes but surgery told me to ring you. Rang surgery to ask if they could issue prescription for me to pick up tomorrow am after I have measured legs.

Phone went again, Age Concern ' your mother asked me not to rung you but I thought I should . The power has gone off to her alarm and the battery is low and she won't plug it in' . I said not to worry, we're doing POA and she said 'Thank God,' so clear,y had had a right to do. asked if she was still paying as said she isn't, they didn't know but don't cut them off if they don't pay.

Rang Mum, no answer. Went to Wilko's to buy files etc we'd agreed I'd get so could go round. Looked at step and thought what on earth is all the dirt then realised new handrails are up. Solves mystery of why she had written down Monday 12pm. Another job, they need painting. Mum let me in and I could see straight away she'd wet herself. She said she got wet whilst supervising workman. With the rail. She asked me to lock already locked back door. Not got dressed this morning again.

Postman bought bill from BT and appointment but she had no idea what it was and that they keep ringing her, is 'I'll think about it' the same as 'yes go agead' . Reassured her it's not a d rang to sort . It's just the Upgrade to Infinity no extra cost so OK. Sorted alarm. Was totally unplugged. Just having cuppa then need to go in 5 mins and get DD who is gutted as cracked her iPad screen this morning having saved really hard.

Was sobbing on landing whilst hoovering, again, very unlike me, am starting to worry myself a bit. Dad sent me some lovely flowers which nearly made me cry all over again, but they are lovely. On the plus side I've not been very hungry and may finally lose a pound or two. Am clinging onto the fact it will all get better soon and I'm going away for Easter. Bit concerned GP might not actually sign a POA at the moment. Sorry to whinge.

FreckledLeopard Mon 14-Jan-13 15:12:51

Wynken - what type of PoA are you doing? Legal/financial affairs, or the care one? Sorry as I've skimmed thread, so forgive me if you've already answered this, but why does GP need to sign POA? We did the legal/financial one (it's signed etc, but haven't yet registered it, though may need to sooner than I'd thought) without need for GP.

Dementia is horrible, horrible, horrible. My mother texted me to say she had a call from the people that she lets our gite in France with, about me taking over (I'd emailed them and sent my mother a letter to sign to say I will be dealing with it) - but she couldn't remember what they'd said or what she'd told them sad

WynkenBlynkenandNod Mon 14-Jan-13 15:48:43

We need both I guess but it's the financial one that is the most urgent. I still haven't read all the stuff on it, I thought a GP had to sign it ? Really must crack on with reading it.

I'm really sorry about your Mum FL. That's exactly what would happen with my Mum except she can't text. It is a bastard disease to be sure, hard to imagine until you we soone in the throes of it sad

FreckledLeopard Mon 14-Jan-13 16:30:58

The worst part for me is that I just feel like I need a mum still - I need someone to rely on! I'm 30, only child and my dad died when I was seventeen. Split up from 'D'H last year. It would just be nice to have my mum as she was.

GP doesn't need to sign POA for financial affairs - basically you need someone to act as attorney (which I assume would be you?), a 'replacement attorney' if desired (i.e. who replaces you if you were to get run over by lorry) and an independent witness to sign it who has known your mum for over two years (my cousin signed ours). If you don't have a replacement attorney, then I think you need two witnesses.

WynkenBlynkenandNod Mon 14-Jan-13 16:39:38

Oh Freckled, I am so sorry, that must be very difficult for you. It's so hard to accept they've changed. Have you got good friends around you ? I know they are in no way a replacement for your Mum.

I am gong to be joint attorney with my brother. My friend can witness, DH can be a person to be notified, GP can be a certificate provider. We're out of people then as she has no friends and I estranged from her sister nd family. I'll read it all tomorrow, hopefully it will all make sense. I think the GP will have to sign to register it and we really need to crack on with that.

FreckledLeopard Mon 14-Jan-13 17:06:04

Ah, ok, I understand now! GP can be certificate provider.

I watched my grandmother (mum's mum) go through vascular dementia - she died year before last at 96. But she was a good 12 years older than my mother is when she started to go downhill (mid-to-late-80s). It just sucks that my mother has dementia at 73. And she really has gone downhill over the last year too. Ugh.

Hugs (())

WynkenBlynkenandNod Mon 14-Jan-13 17:28:48

Glad you understand it, maybe I will too by end of tomorrow.

My Mum is a similar age, 74. Remembered she mentioned that her Grandfather has some kind of Dementia. My Aunt died age 66 but definitely had undiagnosed Dementia. She died of Hear Attack so liklihood is Vascular Dementia. My brother said he had a DNA test and Alzheimer's came up, so I'm feeling pretty much screwed on that front.

Guess we'd better try to live outrageously whilst we can then !

BasicallySFB Mon 14-Jan-13 17:39:50

Just dropping by - sounds like a continuing challenging time for you both.

Thoughts abs hopes for a restful evening x

Sympathies to all.

My mum has Levy Body Dementia - hopefully the scan will be able to tell what sort your mum has. The interesting part with Levy Body, is that it is found in clusters in some families. There is a sort of sliding scale with Levy Body dementia on one side, Alzheimers in the middle, and Parkinson on the other end. Very often in families with this type of dementia, you often find people with Alzheimers and Parkinson too. New research wants to call it Diabetes III, because there are links between sugar in the diet, heavy potato rich diet, and dementia. My mother also had high blood pressure. With Levy Body, there is also a certain aspect of auditory and visual hallucinations. They tend to like lights a bit dimmed, so as not to see clearly what is "lurking" in the corners. But also some parkinson-like bodily ailments. Problems raising up from sitting, hips being stiff, etc, not walking straight etc.

She had the diagnosis June 2010. By January 2011 she was so ill that I had to take her for sectioning, in order for her to get a 6 week in house geriatric mental health assessment at the local psychiatric hospital. She went straight to a care home after about 8 weeks.

It was a rough ride that started back in 2008 when we got suspicious, and it took two years for us to get doctors to listen and get her for assessment. We dont have POA, she was too advanced for that. But I do have authority on her bank account.

From a practical perspective, like you I have a folder for her. I keep all her receipts and bank-statements there, and a spreadsheet documenting all expenditure.

I think what you are beginning to realize that by the time she has had her assessment, she is already so unwell with it, that you can barely keep up with new developments. It is no longer just being forgetful, it is her view on what is happening, and her ability to cope in her home, incontinence. Not knowing if she has eaten or not, losing track of date and time, and waking early like 4 am and wanting to go to the shops, etc. This is the biggest danger if she is living alone at home. You might need to consider sheltered housing sooner than you think...

whataboutbob Mon 14-Jan-13 19:19:17

Hi Wynken. re POA it's true you don't need the GP to sign, but apart from your mother and yourself there has to be a 3rd party who signs (they call it a certificate donor). The office of the public guardian says that can be someone your mum has known for a period of time (I guess that could even mean a trusted neighbour) OR a professional eg GP/ social worker/ solicitor. The form does require quite a bit of preparation and concentration to do it right (I went off to the library and just read and prepared for a good 2 hours) so if you are very stressed (quite understandably given the circumstances) maybe it would be better to just get a solicitor to do the paperwork.
Have just done my Dad's tax returns, told him the sum he needed to pay HMRC and had him screaming at me down the phone he won't pay. A little as if I'd made the whole thing up out of sheer malice. I am just relieved i have POA as my next step is to go to his bank and get them to allow me to sign cheques. Then I need to contact HMRC and explain the situation, and eventually write the cheque. If I didn't have POA none of this would be possible and eventually I'd have to go to the court of protection to get all these situations sorted (much more expensive and time consuming).
Good luck.

whataboutbob Mon 14-Jan-13 19:34:12

Sorry just read your above messages which show in fact you have great grasp of POA! I'm a few hours behind the plot.
These posts show dementia really sucks and some people have a tough hand to play. Thinking of you all. Somehow we'll get through this.

WynkenBlynkenandNod Tue 15-Jan-13 18:44:51

I think what this thread shows is there are a fair few of us dealing with this sodding disease and the very many issues that arise from it. Should we think about starting a Dementia Support thread (is there already one) or is that too depressing ? I know there are other forums but most of us are all in the same boat of juggling children round parents needs.

Quint, I'm sorry what you have been through with your Mum. I remember some of your threads. Think you are right, she is quite unwell. I didn't knowmuch about Levy Body Dementia, interesting stuff. My immediate plan is to get carers reinstated so there's someone in daily, am looking for alternative company for hot meals as she hated the other. Get scans one, see Specialist thn review where we're at. We'll be properly in the system then.

Whataboutbob, next year I would probably try to keep your Dad out of the tax and pay on line. I know as an Attorney you have to keep them as involved as possible and simplify things So they can do it by themselves for as long as possible , but there comes a time when it isn't in his best interest due to the stress and anxiety it causes and you must not feel guilty about just doing it.

Better day in Wynkenland today. Am now in possession of surgical stockings. She was lucid and we had a laugh plus discussed POA. Alarm company rang me re unpaid bill so paid that. Think I scared the living daylights out of my brother with talk of care homes etc. He hasn't seen her for 4 years and it must be incredibly daunting to come back not knowing what to expect. He admitted to DH he's quite nervous about ringing her so emailed to say she is still Mum, just ring her and act normal, send an Ocado delivery as she needs a food shop and buy her an Orchid with a dripper as she's less likely to kill it ! Rang local home to find out fees. Social Worker tomorrow to get Carers reinstated to put on stockings, she'll accept them for doing that.

WynkenBlynkenandNod Wed 16-Jan-13 18:26:11

Social Worker came today, is organising care package smile. Spoke to her outside and she said she will be transferred from Reablement to Long Term Care team but might be transferred onto Mental Health Team once seen Consultant at the Memory Team. She said it should start getting easier for me once all in place and acknowledged I had a lot on my plate.

Looks like you are getting somewhere, one (or 5 as it may be) steps at the time!

The key is to not say "no" to any help, but cling to it, or simply stall. If they offer A and you dont think she is quite there yet, say "Yes, please, lets have A in 2 months, taking it slow to ensure mum adjusts...."

There is always a lot on the plate for us, the sandwich generation. <sigh>

I am still recovering from Christmas, and feel mentally unable to cope. Having visited mum so much in the care home, and had her home for visits, have been challenging. Not least because of all the questions from DS1 who remembers a loving and caring grandma. And the reluctance from DS2, who my mum does not remember at all, poor wee boy.

The upshot is, I cant bring myself to phone her. She is so far gone that phone conversations are a real struggle. She does not know what the phone is, what she should do with it. WIll chat a bit, and then put the phone down, and I will hear her potter, go to the loo, look in on her doll, which she thinks is alive and that she in fact thinks is my ds2 (which is why she cant acknowledge that my ds2 is actually alive when she sees him).

My point is, be glad and treasure all the lucid moments. When your mum gets to the point where my mum is now, you can look back at them fondly. And take pictures when you and her are together and you do something. If you can, make a point of taking her out for a walk, a coffee, or to the park. Ensure the time you have with her is valuable. Not just chores. The time you have now is your time do enjoy your mum, like you would enjoy a newborn, in a sense. You know this time wont come back, you know it is short lived. The difference is, with a baby or a child you have years and years ahead of you with enjoyment and milestones, but with an elderly parents, they are stolen moments.

To go through this when you are in your thirties (well, I am nearly 41 now) when you have small children to look after is really tough. I am glad you are able to access real help.

BasicallySFB Fri 18-Jan-13 06:36:37

Excellent advice from pure there - all good thoughts to you both that it settles down soon. Being on the other side now - with package in place a day centre arranged (albeit for my Nan not Mum, but Mum has physical limitations herself) - it does get easier practically. I'm not sure emotionally it will just now, but my mantra is 'You are doing the best you can, right here, right now'.

CabbageLeaves Fri 18-Jan-13 06:53:46

Can I join in...

Mum in early stages of dementia. She refuses memory clinic. She couldn't live alone and my Dad acts as her career. POA has just been put in place.

I worry about the future, what if something happens to my dad, how will I cope with full time work and caring for mum if it comes to it. I also miss her. I watched The Notebook last week and howled myself to sleep

BasicallySFB Fri 18-Jan-13 13:12:34

Thought to you - that sounds very hard sad

WynkenBlynkenandNod Fri 18-Jan-13 19:08:28

Thanks Quint, that is excellent advice . I kind of logically know that but it is hard when in the middle of sorting things. It's good to hear SFB saying the practical side gets easier so I can try to deal with the other bit. You're a couple of years younger than me Quint. I just thank my lucky stars that my youngest is 9 now and is wanting to be more independent. This has been going on for a long time now though really, it's just no one faced up to it.

I think Quint if you can't face phoning her then don't. If she doesn't really get the whole phone thing then you're doing it because it feels like what you have to do. But one thing I am learning fast is you have to protect you as it will do no one any good if you go under. Give yourself permission to take a bit of time out until you feel better.

CabbageLeaves, hello and sorry to 'meet' you under these circumstances, it sucks doesn't it. Would your Dad agree to having a Carers Assessment for himself ? You won't need to care for your Mum if anything happens to him, there is support, the trick seems to be accessing it and I think you can kind of get the wheels in motion now. If I were you I'd write a letter to your Mum's GP to voice your concerns. It might not make a difference now but it's something that will be there in the future if needed. SS can arrange carers to come in up to times a day. Is your Dad claiming Attendence Allowance for your Mum and will she accept anyone into the house eg a cleaner ?

SS rang today. They have sorted care package for Mum's stockings to be put on, is 9.30 ok as they rang her and she didn't seem to be sure. I said I'm sure she'll be delighted as doesn't like getting up early. Called Mum, yes that's fine so rang them back to confirm. It's starting next Thursday. Mum rang me to ask why she's having carers when the stockings haven't arrived, the ones sitting on her desk next to her. Yesterday she had a window cleaner turn up that she sorted herself and I think oh she's fine, it's all a big mistake though i know it's not. Then I get pulled up sharply the next day. Guess I am at the denial stage then .

Googled the care agency who are coming and they seem pretty experienced in dementia care. Think the SW got them rather than another more local agency might well be as she was thinking ahead to the MHT involvement that will be coming at some point. I'm hoping that way there will be a reasonable amount of continuity of care. DH knackered next to me as heavy day at work, he took DC's sledging in lunch break and shovelled snow this morning which was a waste of time as another load came ! DD just fallen down the stairs so soaking in the bath. She cooked tea and it looked like a rice bomb had gone off and she left the unused chicken on the side which is in the dog. Well think it was the dog but could have been one of the four cats. Not sure how I ended up with so many animals, that was never quite the plan hmm

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