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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.

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

grin

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

Finances:

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 .

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