Extreme Knitting Redhead: Where there's a Will & What Lizzie Did Next

Sunday, November 8, 2015

Where there's a Will & What Lizzie Did Next

Wills

No, I'm not talking about Wills & Kate or Will.I.am but about the legal document setting out your wishes after death!

There's no easy way to talk about making a Will as it's something people often put off until it's too late. It's something to do when you're older isn't it. Or is it? Well I think it's really important to make one and then update it at regular intervals but that's not the reason I'm writing this. What I'd like to stress is how important it is for Charities for whom gifts in Wills, often referred to as "legacies", are a vitally important source of income.

I'm not going to go into any great detail as I am not qualified but I have learned a few things recently that have made me think so I thought I'd share them on here.

In our case we made our Wills when my mum came to live with us because we wanted to make sure that she would be OK if anything happened to us. Mum also completed what was then known as an 'Enduring Power of Attorney'** which meant that we could take care of her financial matters if she became unable to do so herself. Thank goodness she did as it made everything so much easier when she was unable to make decisions for herself.

**This has now been replaced with something called a Lasting Power of Attorney which is available in 2 types: Property and Affairs & Health and Welfare.

At the ARUK Supporter's Day last week we learned that Gifts in Wills fund approximately 1/3 of their research and are vital in their fight against dementia. Last year this amounted to over £5.6m from Gifts ranging from £50 to £713,000. They produce a booklet entitled 'A Guide to making or amending your Will' which is a valuable guide on what to consider when making your Will.

As I have made provision for a donation to ARUK in my own Will they asked if I would mind speaking to someone to explain my reasons for doing this etc. I was asked my reasons for supporting my chosen charities, what influenced my decisions, what did I think were barriers to people leaving legacies etc.

As we chatted I mentioned that although many people make regular donations to their chosen charities, sometimes monthly payments, whilst they're alive they might not have thought that when they die this valuable contribution will not continue, so perhaps they should consider leaving a legacy in their Will.

What Lizzie Did Next

I've lost count of how many times Lizzie Glennon has made an appearance on my blog but it's always a joy yo meet her and chat about her research. She has that rare ability to explain things in a way that I can understand and believe me I have had many Scientists speak to me in terms which I could not fathom!

I was delighted to meet up with her again at the ARUK Supporters' Day and even more excited to learn that she will soon be taking up a new role, again funded by ARUK, so I asked her to tell me a bit more about it so I could share it here. Her new job title will be Alzheimer's Research UK Fellow and in order to get approval for this she had to present her case to ARUK via their Grant Scheme.

In her words:

"My new project focuses on how some of the gene linked to Alzheimer’s disease might affect the development and progression of the disease. I’m going to be investigating a gene called BIN1. We know BIN1 is involved in how molecules get from the outside to the inside of cells, and how they are moved around the cell once they are inside, but we don’t know how this is relevant to Alzheimer’s yet. One of the things which happens early in Alzheimer’s is the protein tau (which late in Alzheimer’s forms the pathological tangle we see in the brain) moves from one part of brain cells (the axon), to the other end of brain cells (the dendrites). Brain cells with tau in the dendrites start to die, and lose function. I have found the BIN1 interacts with tau, so I am investigating whether BIN1 is involved in the abnormal location of tau in early Alzheimer’s disease, and then testing some currently approved drug which may act on BIN1 to see whether I can prevent any abnormal changes."

BIN1 = Bridging Integrator 1

Exciting stuff hey?!

What I love most about Lizzie is her enthusiasm which is infectious and will hopefully encourage other young Scientists to consider a career path in dementia research (which takes me right back to 2012 when ARUK launched their 'Defeating Dementia' report which stated that we need to get more young people involved in dementia research!).

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Mum's Story

In 1997 my mother, then aged 81, had a series of minor strokes. Shortly after that we started to notice behavioural changes notably memory loss and confusion over everyday items. We thought it was just old age finally catching up with her. Then she started wandering and had violent mood swings. Although she already lived with us it became obvious that she couldn't be left alone for long and so I left my job to care for her. The next few years saw a gradual decline into the blackness that is 'vascular dementia'. My normally placid mum became violent and aggressive. She had psychotic incidents where she would see imaginary people (children hiding in her wardrobe, Russians sitting on the stairs, women stealing her clothes) and she would shout at them and sometimes throw things too. She was so convincing that we used to go and check that there wasn't anyone there! When my sister died mum did not know who Judy was or that she was her daughter. There came a point when I suddenly realised she no longer knew that I was her daughter and this was a terrible time for me. In the last 2 years that she lived with us, life for us all became almost unbearable as she needed 24 hour care - she couldn't be left alone at all because she would either wander off or hurt herself, she never slept for more than 30 minutes at a time during the night, she became incontinent and incapable of doing anything for herself. Finally my husband and I realised that we could no longer provide her with the care that she needed and she went to live in a special care home where the team did a splendid job caring for her in the last few months of her life. There she lived a zombified existence unaware of who she was, what she was or where she was. It was heartbreaking. She died in March 2005, the day after her 89th birthday.

Thank you for taking the time to read mum's story and I hope you'll dig deep and sponsor me using the link below to help find a way of beating this destructive disease.