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Profile

Andrew Johnson

Running 5 Marathons in 7 weeks

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Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

My story

[p][b][u]UPDATE[/u][/b][/p][p]With the world wide pandemic that is COVID19 my 5 marathon challenge in 7 weeks has unfortunately been postponed. However the marathons have been rescheduled and I will be completing them all still as follows:-[/p][p]Sunday 24th May - marathon in Brantham as two of the rescheduled marathons clash so completing one at home.[/p][p]Sunday 6th September - Edinburgh marathon[/p][p]Sunday 11th October - Manchester marathon[/p][p]Sunday 25th October - Newport marathon[/p][p]Sunday 9th May 2021 - Halstead marathon (this one was not rescheduled for later in the year it was just cancelled)[/p][p]please still donate if possible and if you can, come along and socially distance support me or come and do a few laps with me in Brantham on Sunday 24th May I will be running from 8am doing loops of factory lane.[/p][p]After applying and failing for a place through the ballot for the London Marathon for the 5th year in a row I decided to try and look to do something a bit different and a bit more challenging. [/p][p] As many of you will know my Mum was diagnosed with young onset Dementia at the age of 48 some 12 years ago. At the time in the local area we kept hearing that Mum was the youngest person they had seen that had been diagnosed. We found that their wasn’t really any support for younger people with dementia or indeed for their families.[/p][p] People’s perception of dementia is generally people of old age who start to lose their marbles. There was already support for older people through age concern and Alzheimer’s etc. but we found that this wasn’t suitable for mum. We found that from the outside mum did not look any different and as such people that didn’t know mum had been diagnosed were naive to the fact that she was ill.[/p][p] I would like to share our families experience of living with young onset dementia to highlight the gap in support that their currently is as well as completing a challenge to raise funds. [/p][p] To begin with after the initial diagnosis not much changed. Mum stopped working and stayed at home but was well enough to live a normal everyday life. We went with mum to an initial 6 week course for people newly diagnosed with Dementia to try and find out some more information. This was helpful in the fact that it helped us to understand the disease and possibly what to expect in the future. [/p][p] Over time we started to see changes in mums personality as well as forgetfulness starting to creep in. Between me and my 2 sisters we would try and pop in every lunch time just to check that mum was ok and was eating properly. After an incident where mum forgot she had put the oven on we decided as a family that it was no longer safe for mum to be at home on her own. Dad then gave up work and became her full time career. My Dad really struggled for a long time to come to terms with the fact that the love of his life that he had been married to for 30 years could no longer look after herself. For Sure I feel that their isn’t enough support for the partners of people diagnosed with young onset dementia. Other than the council coming in and putting in an additional hand rail on the stairs there was no support for my dad in the transition of becoming a full time career, he was just left to get on with it. [/p][p] Mum began to slow down with her walking and one of the things we found the hardest was the personality changes. She occasionally became aggressive for no reason, which was the hardest thing to see as our Mum was the nicest, kindest person in the world who would do anything for anyone. [/p][p] What we found throughout mum’s dementia was that big events had a large detrimental effect to the illness. During the night mum got up to go to the toilet and forgot where the toilet was and fell down the stairs. She fractured her back and spent 6 weeks in hospital recovering. That’s the thing with Dementia however careful you are, people are so much more likely to suffer some sort of harm as a result of the illness. [/p][p] We did find one activity which my mum loved which was singing for the brain. This was specifically for people with dementia. My mum along with my Auntie would go along and they would have lots of fun singing songs. We found that mum’s love of music would really shine throughout her illness and was something which she loved. People with the diagnosis of young onset dementia need to continue to live their lives as they are young people and to have certain activities to do and something to look forward to is really important. Again I don’t think there is currently enough in place here. [/p][p] Unfortunately in April 2015 my mum’s dad passed away at the age of 92. This massive event really had a drastic change in my mum’s illness. Her speech started to slow down and not make as much sense anymore, she wasn’t eating as well and her personality continued to change and we found that she became more and more childlike. We made the most difficult decision that my dad could no longer provide the care that my mum needed and as such my mum went into a care home specifically for people with dementia. [/p][p] Again this big change had a big impact on everyone. My dad was now living alone and really struggling to come to terms with mum’s progressive journey through dementia. Me and my sisters would regularly visit mum in the care home with our children and my dad would go a good 6 times a week. Mum was now getting the care she needed however it was so difficult to see her progressively get worse. I personally found it so hard going to visit as although it was my mum in physical appearance it wasn’t my mum in every other aspect. She began to forget her grandchildren’s names which was heart-breaking as she absolutely adored every single one of them and got so much joy out of the children visiting her in the care home. As did all of the residents, as I mentioned before mum became quite childlike and we found that all of the residents of the care home loved our children’s visits and I definitely think they got enjoyment out of it. [/p][p] Around 18 months after being in the care home mum had a fall during the night and broke her Hip. This required a Hip replacement and a lengthy stay in Hospital. Again a big event had a huge impact on my mum. She never managed to walk again after this fall. She no longer spoke in sentences and only spoke the odd word here and there. For a family to see their wife, mum, nannie in this way was truly heart-breaking. My Children started to find it increasingly difficult to go and visit the care home as nannie no longer interacted with them. [/p][p] Mum was now fully dependent on the carers to wash, dress, feed and take to the toilet. Mum began to lose weight as she wasn’t eating as much and she began to grind her teeth. Little things like not being able to stop her from doing it caused problems as she eventually lost some teeth due to the excessive grinding. [/p][p] In the next 12 months we had 3-4 visits to hospital as the care home had noticed that she was becoming vacant and occasionally had a droop to her face. They found that mum was having mini absences akin to small strokes. Each visit to hospital became more and more painful for the family as we knew we were slowly losing our mum. Following another stay in hospital the end of life care plan was written up which is when people have less than a year to live, unfortunately that same evening when mum returned to the care home she passed away in her sleep in August 2018. [/p][p] Mum was 58 when she passed away so still classed as having young dementia. At times it felt like I had been grieving for mum for several years and her passing was just the final chapter. I wish especially in the early days that there was more information around about living with dementia and also various different classes for both dementia patients and their families to do and enjoy. [/p][p] Having been rejected by the London marathon ballot I started to look for alternatives and I stumbled upon the charity young dementia uk. This is still a very small charity however it is the dedicated national charity for younger people with dementia and their families. They are committed to helping those affected by this challenging condition, to adapt to their changed lives as well as possible by providing information, support and opportunities to connect with others. This charity is exactly what is missing on a widespread scale and truly hits home around the experiences we have had as a family. [/p][p] As such I have decided to set myself a bit of a crazy challenge. I will be aiming to complete 5 marathons in 7 weeks raising money for the charity. If you are a marathon runner you will understand exactly how much of a toll 1 marathon takes on you and if you have seen me about after completing a marathon you know I can’t normally walk properly for a few days after so to complete 5 in 7 weeks is going to be a huge physical and mental challenge for me. [/p][p] I will be doing the following races:-[/p][p] Manchester Marathon 5th April 2020[/p][p]Newport Marathon 19th April 2020[/p][p]Milton Keynes Marathon 3rd May 2020[/p][p]Halstead Marathon 10th May 2020[/p][p]Edinburgh Marathon 24th May 2020[/p][p] [/p][p] I want to raise as much as physically possible so if you can donate and share my story in the hope that other families might benefit from the support that we never had that would be amazing.[/p][p] [/p][p] [url=http://www.youngdementiauk.org/]www.youngdementiauk.org[/url] [/p][p][br][/p][p][br][/p][p][br][/p][p][br][/p][p][br][/p][p] [/p]
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Share Andrew's story

Event

Personal Challenge Date

25 Oct 2020

Supporters

May 27, 2020

Andy M

£15.00 plus £3.75 Gift Aid

May 27, 2020

Leeann Bullock

Good luck my lovely! Xxx

£10.00 plus £2.50 Gift Aid

May 27, 2020

Anonymous

Good luck love Ange

£30.00 plus £7.50 Gift Aid

May 27, 2020

Clare

Massive achievement for a brilliant cause. Such a sad, cruel disease.

£15.00 plus £3.75 Gift Aid

May 24, 2020

Jackie Hyams

Just keep doing what your doing Andrew, every penny will help make a difference. Your Lovely Mum would have been so proud of you, as are the rest of your family and friends too!

£15.00 plus £3.75 Gift Aid

May 24, 2020

Rose Leech

Go Andy - amazing challenge for an amazing charity - well done

£20.00

May 24, 2020

Andy M

£15.00 plus £3.75 Gift Aid

May 24, 2020

Terry, Ashlee and Sienna

Well done today Andy!!

£20.00 plus £5.00 Gift Aid

May 24, 2020

Christine Hough

Good luck Andy

£20.00 plus £5.00 Gift Aid

May 24, 2020

Anonymous

Good on you Andy. Lovely thing to do in memory of your dear mum. Take good care of your body Marshall & Kim xx

£30.00 plus £7.50 Gift Aid