Category Archives: legal and finance

A Podcast recorded for Financial Advisors…….

A while back me and playmate George were asked to record a podcast aimed at financial advisors with our wonderful enabler Philly Hare. We spoke of everything from the financial hardships caused by the diagnosis itself to planning for the future, which was difficult for both of us. Philly filled in with statistics and explanations……it’s a good podcast for anyone in our situation to listen to, not just those in the financial world……have a listen by clicking the link….

https://techlink.podbean.com/e/techlink-in-conversation-episode-24-vulnerability-series-%E2%80%93-cognitive-impairment/

Plan for Tomorrow, Live for Today……..

Last week I received a copy of “My Future Care”, sent by the lovely Zoe Harris, founder and CEO of My Care Matters.

“Mycarematters is a social enterprise with a mission to improve the experience of care in any care setting. We enable the whole person to be taken into account by all those caring for and interacting with them.”

I’m sure I must have met Zoe in person on our various travels around the country, but our main connection is through Twitter…

Many people, when diagnosed, like to forget about the future, some like to bury their heads in the sand and pretend it will take care of itself. Well, undoubtedly it will, be will what happens, be what YOU want to happen? Have you spoken to those closest to you about future care, about death? It happens to us all!

Well me and my daughters have, but last Sunday me and Sarah went through The handbook page by page and even we found it helpful to clarify some points, to highlight some detail we hadn’t gone through. I knew I’d had recent up to date conversation with one of them but can never remember if I’ve spoken to both, so this helped with that too.

Sarah is an nurse in Oncology so has these types of conversations with patients all the time, but for many families, they may have never spoken about anything like this so need direction, need guidance.

For those that have never had those conversations, or maybe don’t know where to start, it felt like a gentle process. A simple, straightforward, tour of everything we needed to talk about. And if you were worried about the sheer volume of information, there was a useful ‘colour coding’ to highlight what you should read if nothing else at the bottom of the Index…

There were, as I said, things in there that made me think. For example in the funeral details bit, Sarah asked where is my address book? I could also tell Sarah that I didn’t want a funeral as such and instead want a ‘straight to cremation’ with a celebration gathering once they’d received my ashes, so I could ‘be’ there 😂🤣….The image of both my parents disappearing through the curtains for cremation having stayed with me and not what I want my daughters to remember.  I also want the celebration it to start at 11.55……a special time which many will understand the relevance of….or maybe just something on line at 11.55 so my daughters don’t have the hassle of organising anything🤔…mmm more thought needed me thinks…

But before we got to that conversation, we were taken through all the maize of forms that exists and which should be completed – the Will, Advanced Care Plans, Lasting Power of Attorney, Letter of Wishes and the other myriad of ‘stuff’…but it didn’t seem overwhelming. All the forms are a minefield if you have to discover them yourself, but here they were all present, in a logical order. We did think some bits started to get confusing until we realised, it was because we’d already gone through the process, we didn’t need to plan…

Yes, I was lucky, we’d had all these conversations. Many others can use them as guidance, for information and for useful reference.

The biggest advantage I can see is that it gets people talking. My daughter had to help me as I can’t write consistently legible so no one would have been able to read it! But even if you wrote it yourself and handed it to those closest to read, as a starting point, it would be invaluable.

Sarah said afterwards:

I found the handbook very easy to follow, in a logical order and covered everything. We, as a family, have done most of the advanced planning, however, the funeral planning was especially useful for us to revisit and discuss.People in the earlier stages of planning should find this to be exceptionally informative and a prompt for useful guidance and discussion”

We plan the birth of our children in any way possible, so why not our death?

Once you’ve had these discussions, you can carry on living your life in the full knowledge that what happens in the future will be a lot smoother than if you hadn’t plucked up the courage and TALKED ..…..

 But as the message on the front of the handbook says:

Plan for Tomorrow, Live for Today”

Yes, the handbooks do cost, they aren’t free. But Carematters is a not for profit organisation and it has cost them to print so, like anything it does cost to produce. And yes I got it free, so would I have bought it if I hadn’t. Well, if I’d was at the start of or confused by the maize of processes, yes I would buy it. The content is invaluable and what price can you put on peace of mind?

More information of the handbook on their blog web site:

https://mycarematters.wordpress.com/author/zoeharris13/

Or on their normal web site:

https://mycarematters.org/

 

MRS Awards Lunch….

I woke up last Friday having completely forgotten that a General Election had taken place the day before – an advantage of dementia, you might say! Obviously, I voted on the day but it meant I didn’t have the anxiety of others of worrying about the result. So a total bonus when I woke up oblivious to all the overnight drama😂

Anyway, back to what I was up to………I was travelling back down to London for the third time in a week😳. This time at the invitation of Lisa Edgar, Director of The Big Window Consulting company.

I’d done a double act with Lisa some time ago at the Market Research Society Annual Conference around the need for financial companies to understand how they can help people with dementia and it had gone down a storm. It had led to us being nominated for an award at the annual conference awards lunch under the category “Best Overall Contribution to Conference”, which was a nice surprise.
Anyway, the awards lunch was Friday.

Lisa had kindly booked me a first class ticket from Doncaster so I was meeting her on the train.

The sheep, looked very content in the sunshine on the banks of the Humber

Lisa waved to me as I looked for my seat and the man soon came along with a cuppa tea – perfect! We caught up on all that had been going on in our lives.
Lisa told me all about the people who’ll be there today and who’ll she’ll introduce me to. She’s very interested in researching the ageing population and the issues that lay ahead around the funding of care homes, so you can imagine how quickly the journey went by.

Once the second cuppa arrived we both got down to concentrating on the paperwork in front of us or in my case, my ipad

Shortly after the initial conference Lisa filmed us talking at her house. You can see the film we made of the interview on her web site

http://www.the-big-window.com/thebigmovies.html

We arrived in London and met Lisa’s friend who’d I’d met before….apparently😳 and took a taxi together to the amazing venue at St Pauls – The Patenoster Chop House

The square around was amazing – I could have just sat there all day.

I’d messed up the timings of the awards so had booked the wrong time train home🙄– I’d forgotten how ‘London lunches’ meant champagne reception and 3 course meal😂 so had to leave before the winners were announced, but I managed to get a piccie of the 3 of us enjoying alfresco champagne, just a pity I don’t drink as it was wasted on me😂

Me, Lesley Sopp (Chief of Market Research at Financial Conduct Authority) and Lisa Edgar

The food was wonderful and the venue staff were the most helpful lot and pointed me in the right direction for the tube and were just so helpful from the moment we arrived– BIG brownie point for them.

The room was full and the meal arrived and was delicious.

We chatted and put the world to rights and I had a lovely time but before long it was time for me to leave before everyone tucked into their pud.

Oh and by the way…….WE WON!!!!🎉🎉🎉 Very nice way to spend a day….

 

Filming with Lisa Edgar….

Yesterday saw me heading off to Huddersfield station as I was due to meet Lisa Edgar there. I’d done a double act with Lisa down in London back in March of this year.
She’d asked if she could interview me on stage about financial services and how they hindered or could help people with dementia. The interview had gone down so well at this very different event that we were now finalists for the MRS annual conference awards at a forthcoming lunch down in London. Our talk was in the Best Overall Contribution to Conference category which was very flattering. Even if we don’t win it will be a nice different experience again. So I went over there to film the same interview.

Anyway back to yesterday. It was a gorgeous day but still very cold for May in the East of the country, so still have my winter coat on!I only had one change at Hull though, so a straight forward journey.

It’s the first time in a while that I’ve gone passed the Humber bridge as we’ve been busy writing but it was looking lovely in todays sunshine.

I don’t think I’ve ever been to this part of West Yorkshire, so another new experience

Lisa met me at Huddersfield station and took me to her lovely house that doubles as an office for her company. We went through the most stunning scenery and she lives in a place to die for in Hepworth near Holmfirth where the TV programme Last of the Summer Wine was filmed.

Michelle, Compliance & Operations manager, also arrived. Michelle had sorted and sent all my travel tickets, so it was nice to meet her. AND Basil the dog put in an appearance before being taken off for the morning!


I found out why the company is called BIG Window – named after the big window in the barn.

Tony Coldwell, the film man, arrived, who is a friend of Lisa’s,joined us after a cuppa. He’s a very renowned camera man and has just finished filming with David Tennant and today he has me and Lisa😂……..he was the camerman on the TV drama, Mr Selfridge and filmed us on the same camera!! He judges Baftas etc and here he was filming us – magic. He was a lovely smiley man…….

We recorded the interview 3 times from different angles and each time different words came into our heads which was hilarious – nothing like continuity…….😊

Lisa asked me how Banks and Financial companies could help people with dementia and we spoke of my dislike of the phone and ‘new and improved’ web sites, which cause confusion and my ideas of what solutions could be put in place.

Before we knew it, we’d finished and our time was up and Lisa took us all to the pub for lunch, which was all of 20 yards from her house. The people were soooo nice and I had a lovely day.
The view from the house was amazing.


Lisa is the Founder of the BIG window company – more details can be found at:
http://www.the-big-window.com/

PIP reconsideration declined………

You may remember, back in July, how I was told that my PIP payments had been stopped. I then went through the ‘reconsideration’ process…….well yesterday I got the dreaded letter which stated that my request for reconsideration had been declined….

I used to get the payment, in fact I think I received it for 18 months. Now, considering I have a terminal, progressive debilitating condition, I’m not going to get better. In fact, I now have further challenges as those close to me know all too well. So I’ve deteriorated, yet am no longer entitled to the PIP payment – something doesn’t feel logical here………

From the comments that were included in the letter, I now realise that people living on their own are penalised.
Here’s some snippets of their wisdom….:

“You said you have difficulty planning and following journeys. I decided you can plan and follow the route of a journey unaided”

Well, apparently all the aids I use don’t count…..

“You live alone. You are able to use applications and alarms on your phone to remind you of daily activities”

Sooooo, I shouldn’t live alone, I should have someone living with me to do things for me? And I certainly shouldn’t be able to use technology…….

“You are able to plan and follow journeys using various modes of transport. You are able to give talks for the Alzheimers society”

They really don’t like the fact that I’ve worked out ways to enable me to continue to travel which means I’m not isolated but apparently I should stay at home and not see anyone and I certainly should not give talks………..how sad they want me to be…….

“I decided….you can manage medication…unaided…..”

So once again, the 2 alarms I have permanently set to remind me otherwise medication gets forgotten, don’t count…the box by my kettle and box on the stairs go against me too…………They’d prefer me to forget……..

“…..you are not at risk of self neglect or malnourishment…”

So I have to be in crisis to be entitled…..?

We have to find ways to cope as there’s no one living with us to do things for us. So no matter what methods we use to remain independent, they go against us when claiming such benefit. We shouldn’t be allowed to live on our own, is what they’re really saying….

They’ve been told to save money and save money they will at the expense of those who are trying their hardest to survive…….

I need to move in with one of my daughters, allow them to do everything for me, then I might qualify….possibly…..

Going on my experience of this whole process, the only conclusion I can make is that they need to change the name – Personal Independent payment – It’s certainly not a payment to help you remain independent, in fact it’s a payment for people who aren’t independent……people who live alone could never meet their criteria……….we can never win simply because we live alone and have to find ways to manage – we only fit into their world when we can no longer manage alone – I can’t beat the system as I want to live alone and refuse to be the person they want me to be…….

So……..I give in, I can’t fight them and be put down any more – something I don’t do very often, but they‘ve won……a sad day……..

Legacy event at Normandy Hall

Yesterday I was near Scunthorpe at Normanby Hall for a Legacy event.

Aimee Maguet, Legacy and Recognition Giving Officer, had emailed me a while ago asking if I’d talk about my story and being part of the Research Network at the Alzheimers society.
I noticed that the lovely Trevor Jarvis was also speaking so would be there with his wife. I hadn’t seen Trevor and Anne for a while so was looking forward to a catch up. Trevor was diagnosed years ago and it’s always so nice to see how he’s doing.

Aimee kindly aged to pick me up in the village and we drove over the Humber Bridge looking as wonderful as ever in the sunshine. Even the murky waters looked a picture on this sunny day.

image

Normandy Hall is a lovely place – a council run place that seems to have everything for visitors. The grounds looked lovely and were full of spring flowers and wild life at this early time in the morning before all the visitors started to arrive.

image

Inside was very grand and the room looked spectacular

image

I busied myself taking photos while Aimee got her stuff sorted.The grounds outside looked so nice in the early morning sun but it was very cold……..

It’s always nice to see these sorts of places before the crowds arrive…

image

 

image

It was such a nice bunch of speakers.

image

Each had their own special moment. It was so nice to see Trevor and Anne again. The lunch was lovely and the conversation and company was very animated and struck by the content of the morning.

I always mention the good and bad days and how the bad days are like a fog descending on the brain.
Someone came up to me afterwards to say that she hadn’t heard anyone mention about the ‘fog’ we can experience before – but after hearing me talk she now understood what her husband was talking about when he was describing the ‘fog’ he could see……..and thanked me for that light bulb moment in understanding more about her husband. Moments like that make all the effort worthwhile………

 

Legacy event at the Hepworth Gallery.

Another event that happened in August……..

The day started off really well as it was actually sunny! Aimee Maguet (Legacy & Recognition Officer for the Alzheimers Society) had kindly agreed to pick me up so no problems finding the venue.

We got there before the gallery opened to the public so were able to see behind the scenes which was different. Gallerys are very strange places without public – as though they’re awaiting their audience – which indeed they are. Henry showed us to the room which had the wonderful view below. I can sit and look at water all day long so was more than happy to type away while Aimee set up everything and look out of the window.

image

The taps in the ladies deserve a mention………..took me a while to work out how to get water out of the tap………I must have inadvertently ‘waved’ in front of it and hey presto water cometh – ha! It did have a sign saying ‘wave on’ but I’d just been looking at the view of water out of the window so I had a different ‘wave’ concept in my mind!!

Last week I went to a similar event in York so I’d know what to expect. The wonderful Barbara Woodward-Carlton did the speech about the research network so I was able to see the ‘experts’ handling of the situation. As always Barbara was wonderful. By the by, a man sat next to me and immediately asked if I was Wendy……..he then pulled out the 2 page spread that had been in the local paper the week before – how bizarre…..
Trevor also spoke at the event in York – he has lived with dementia for the last 14years and is still able to speak at events and it’s always so nice to see him. I’m always telling Trevor that he gives me hope that I’ll still be able to shout from the rooftops in 10 years time….it’s always so nice to see his lovely wife Anne as well.

image
The event last week was held at the Kings Manor in York above – another hidden gem in the centre of York.

So back to today at the Hepworth Gallery….Julie Lu arrived. She is organising the local Memory Walks at York and Leeds to name a couple so was all ‘Risk assessed’ out. This time of year is ‘headless chicken’ time for them as the series of walks kicks off in September. I’m helping at Leeds on Sat 5th September and York on Sunday 4th October. Check out here how to take part or volunteer.

https://www.memorywalk.org.uk

I was able to have a wonder round the gallery – what a wonderful place and well worth a visit if you’re in the Wakefield area. There’s also the Yorkshire Sculpture Park on the door step as well.

Once everyone had arrived Aimee opened proceedings.

image

The wonderful Trevor then did a brilliant speech which had everyone animated. It was then my turn to talk about my experience of taking part in research and my role as a Research Network Volunteer.
I could now add that I’m taking part in the IDEAL trial – as I’ve just signed up for that – this trial is looking at ways of living better with dementia.I spoke about the fab time I have being involved in the research network and how the best thing is seeing and hearing the passion of the researchers. I’m writing this some weeks later so detail has disappeared and my notes were a tad sparse!
Kind donations via wills make up a large percentage of the monies raised by the Alzheimers society so I was happy to help.
I had to leave early as I had something else on in the afternoon. The journey home was another challenge as I went right instead of left out of the building ……so confusion reigned until I got back on track…..and ended up going past the gallery again as I retraced my steps……ha!

Hepworth Gallery - well worth a vist
Hepworth Gallery – well worth a vist

 

Challenge of raising funds

Bit of a mad week this week…….When this blog is published I’ll have hopefully just arrived at the 2 day Research Network Conference for the Alzheimer’s Society being held in Manchester. I’m very excited at the prospect of meeting new friends and old. The agenda looks fascinating. The rest of the week is just as busy……..at least my brain won’t be bored!

Last week I met Aimée Maguet (Legacy and Recognition Giving Officer  for the North) for a coffee in York. I’d been asked to speak at the legacy event held at the Hepworth Gallery in Wakefield on August 5th. Aimee is responsible for promoting the awareness of leaving a gift to the Alzheimer’s Society in your will. When she said she covered the north I thought she meant north Yorkshire but she actually covers the whole of the country in the north! She told me more about the work she does.

I’ll be going to a similar event on July 30th in York to see what happens before it’s my turn:)

I hadn’t realised that gifts through wills amounts to 20% of funds raised for the society so it’s a really important side of fund raising which I hadn’t thought of before.

The web site is full of really useful information for anyone who is interested:

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200250

Another new discovery for me this week was the existence of the Alzheimer’s Society weekly lottery – another way of raising funds – £1 a week – you’d only have to give up a bar of choccie to afford that………..more info at:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2897

image

 

 

Lasting Power of Attorney

The Martin Lewis Money Show on Friday 23rd January advocated the need for everyone to take out a Lasting Power of Attorney. He’s 42 and he’s got one. None knows what is round the corner. I did mine myself – it does seem overwhelming when you get the form but if you work through it in small chunks it is as straight forward as any official form can be. There’s lots of help online. You can do one through a solicitor but it will obviously cost you a fee in addition to the £110 to register but it’s a small price to pay for peace of mind. Whatever it costs you it is nowhere near the cost to loved ones of unravelling finances if you can no longer look after your own affairs. Unless you’ve a Power of Attorney already, loved ones need to apply through court, which can be long and costly.

There are 2 types of Lasting Power of Attorney – one for health and the other for finance. I’ve done both so my daughters know exactly what I want to happen when I no longer have capacity. Some people put off having one because they think others have control over what happens immediately – this isn’t the case. It comes into its own only once you lose the capacity to make decisions. It is also a great opportunity to talk to loved ones about your wishes for the future – a difficult conversation but well worth having while you’re well.

You can only set up a Lasting Power of Attorney when you have mental capacity. Once you’ve lost capacity, it’s too late.

The Alzheimer’s society has an excellent section on its web site:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=154

but if you need further evidence that it’s not just for those with dementia then you can read about it from Martin Lewis on the link below

http://www.moneysavingexpert.com/family/power-of-attorney?utm_source=MSE_Newsletter&utm_medium=Email&utm_term=04-Jun-13&utm_campaign=family&utm_content=43

image

Early diagnosis and new beginnings

31st July 2014 – the day I sat in the consultant’s room and received the official diagnosis. It wasn’t a surprise as we’d frequently spoken about the outcome in those terms. However, there’s always this slight hope in the back of your mind that they’d made a mistake and have now found the real cause of your symptoms. It wasn’t to be.

Some people may not want to know they have dementia – I was actually relieved to have a diagnosis. It meant I could finally bring a closure to all the uncertainty, to all the ‘what ifs’ , ‘buts’ and ‘maybes’. It enables you to look at life from a new perspective and to plan and take up challenges that might otherwise never have crossed your path. For example, talented researchers may be on the brink of a new breakthrough.  An early diagnosis has given me the opportunity to go on medication which may give me long enough to benefit from such discoveries.

It has also given me the opportunity to sit down and talk honestly and openly with my daughters and plan my future, which in turn has relieved them from having to make those difficult emotional decisions around my care and future treatment.  If more people had the same early diagnosis they too could plan their own future care and enjoy life while they still had the mental capacity to do so. It must be so difficult for loved ones to feel they’re making the ‘right’ decision if no discussions have taken place.

After the recent announcement that GP’s would get £50 for each patient diagnosed with dementia, my initial reaction was ‘any publicity is good publicity’ but I also wondered how many GP’s would find this an insult and yet another target to meet. Surely the vast majority of GP’s don’t need an incentive to diagnose…………I think one of the major hurdles to overcome is getting people to go the the GP in the first place and not being afraid to admit they may need help. After all there is still a stigma attached to the diagnosis of dementia for some people.

One Saturday a couple of weeks ago we sat down together and went through the difficult task of completing the Lasting Powers of Attorney. We were all drained at the end but at least we now have everything on paper. Receiving the diagnosis was just as difficult for them as it was for me but we’ve supported and protected each other through this. Needless to say they’re not just my rock, they’re my mountains and I wouldn’t be in the state I am today if it wasn’t for their love and support – it might also have something to do with me making a pretty mean Afternoon Tea as well…………….:)

A well deserved afternoon tea
A well deserved afternoon tea