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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 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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