Memory clinic

[WynkenBlynkenandNod]

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]

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

[WynkenBlynkenandNod]

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

[Beamur]

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]

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]

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.

[marriednotdead]

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

[WynkenBlynkenandNod]

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

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]

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]

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]

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]

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]

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]

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]

You're all lovely 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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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 :)