An Interview with Paul Hitchmough
Today we talk to the fascinating, funny, intelligent, and extremely talented musician Paul Hitchmough who for the last 7 years has been living with early onset dementia. While living with this condition Paul has recorded extensively, written about Alzheimer’s and dementia, and toured the country giving talks about his experience. Paul Hitchmough is 66 yrs of age and living with Dementia (early onset). He says he lives in Liverpool and is a musician in the singer/songwriter genre. He plays guitar/drums/piano and still sometimes plays with bands and solos now and then. Most of Paul’s music is about Dementia and uses it to help raise funding for Thred community interest company which he set up a year ago.
Through Thred CIC and other local organisations, Paul uses his musical talents to bridge the gap across the diverse dementia community, collaborating with others to reduce the stigma of dementia and open up opportunities to live well with a diagnosis.
With his fellow peer, Tommy Dunne, Paul is integral to providing post-diagnostic support sessions at their local mental health NHS Trust, for those diagnosed along the dementia pathway.
Paul’s contribution to local peer groups and national organisations has won many awards for their work in the Alzheimer’s community, and he says it gives us a voice to make the public aware of this terrible disease.
NSG: Hi Paul, how are you doing? How is the new year treating you so far?
PH: The new year is a little more welcoming as it was a disaster last year, so new hope with the vaccine, and let’s hope all the musos in Liverpool will get back on the road and start playing again, they have all been hit hard over the last 12 months. I have missed going out and doing my public speaking all over the UK, but have had time to reflect and been busy with the BBC documentary about dementia which will be shown next spring/summer on BBC 1.
NSG: So your story really resonated with me personally and I found it really interesting and inspiring. Can I ask you when you first started to have symptoms related to Dementia?
PH: I started having symptoms back in 2013. It was a strange year with me doing strange things at work that were becoming noticeable. Just small things like non recognition of staff, getting mixed up with the daily routine, on one occasion, I posted £3.500 in cash into a post box and then walked to the bank and presented the letters there!!! That was the tipping point for me [although we got the money back, that’s another story] with the headaches and all this going on, I went to the doctors and got a referral to the Walton centre which deals with that field, the final diagnosis after 4 months of tests and scans was early onset dementia.
NSG: How long did it take to get your diagnosis and how did you feel about it?
PH: Well, it was terrifying being told by the consultant at my house, I thought this is it, I have just been hand a death sentence, the average length of time for dementia [alzheimers] is seven years from diagnosis to death, my mind was racing, how do I tell my kids, my family, my friends, I decided not too and just retired from work at 62 yrs of age, I had savings so lived off them for a few years until the money run out, I had a little mortgage left on my house but had to sell my car as they took my licence away at diagnosis and I have not driven a car since. The 4 horsemen really had a laugh with me, no job, maybe no house, no income, and no car, all in a short space of time!! Well, it has taken 4 months from being in a well paid job to absolute zero, I was at an all time low, in the pub every day, in denial as most people first do at the point of diagnosis, then the shock of it all hits you, every time I forgot something it panicked me and attributed it all to dementia, the anxiety was prominent, have I arranged my future duties, power of attorney, my will, documents, and last wishes, this was all too much, the pub was a better option, I became detached from society, never answered the phone, didn’t wish to communicate or barely talk to anyone, started selling some of my musical instruments to feed the alcohol, my beloved Les Paul went, then my drums then my yammy keys, that really hurt me in the future as i realised what I had done. dementia is unique as it affects every person differently throughout diagnosis but there are core issues with the disease that always remain the same.
Paul Hitchmough
NSG: The first songs I heard of yours were ‘The Answer’ and ‘Same Man’. I was honestly blown away and if I’m honest I cried a little, your songs are very deep and honest and you have a beautiful vocal, How long have you been writing and playing?
PH: My sons found out about my dementia after a while just by chance, they knew something was wrong as my partner Paula did, but it was a phone call from Mossley hill hospital which Joel [my youngest son answered] at my house which let the cat out of the bag, I was tracked down that evening to a local pub, and then had to tell them the truth, it wasn’t a good experience, very emotional, but, cathartic in a way as it was the first time I had talked about it. I have always played the drums in bands around Liverpool in the seventies. My own band was a blind eye, we did Wishbone Ash covers mostly as I loved the twin guitar sound and how the harmony all worked with twin lead breaks which was very melodic. I decided from that damascene experience with my sons, to get help, and I went to Mossley hill hospital to get that help which helped me immensely going forward, so I wrote a song called Same Man in 2014 as a fundraiser for the Alzheimer’s society which raised almost £2000 and it had around 7.500 hits on youtube, so I was an overnight sensation lol, only joking. I taught myself guitar and piano to a reasonable degree and enjoyed recording my stuff at Crosstown Studio with Jon Lawton, the experienced producer/arranger/engineer, and muso, what a find this place was.
NSG: Watching your videos I see you work with a lot of other musicians on your songs and projects, you seem like a people person, is it important to you to work with a diverse group of people to create your music?
PH: It is a fact that when [PLWD] abbreviation for ‘people living with dementia’ get diagnosed, as one part of the diseased brain shuts down, there seems to be another part opening for creativity, and I think that’s what happened to me with a massive rush of music coming back to me, coupled with a desire to get back to it and get into recording which I had never done before, so that was the catalyst to get started and also, more importantly, gave me the reasons to focus on the days ahead and work on songs which I had not done for quite a while. I am from the Speke area of Liverpool, and there are so many fantastic musicians around me as friends and players who encouraged and helped me to play live as well as write and enjoy my musical renaissance. [ i won’t mention the two famous ones who lived by me when I was younger, they are well documented lol] I seem to just drop straight back into it all as though I never left, and am currently working on four musical projects and a BBC documentary film which will be on the BBC1 next year, so I am completely focused on it all, and it gives me the impetus to get out of bed in the morning and to forge ahead which is what I need to keep the old grey matter active.
NSG: When we spoke a few days ago you mentioned about times when you’d been stigmatized because of your Alzheimer’s, would you be willing to tell us more about this? Also, how do you think we start to change this type of stigma in society?
PH: There have been many times I have tasted stigma, it’s not very pleasant. I have actually written a ten page mini-thesis on it I use in my awareness talks. The definition of stigmatization is appalling. I encountered it the first time in a supermarket, a dear old friend of mine was walking towards me but just before I could say hello, he turned off down another aisle and quickly disappeared, I was left standing there, confused, hurt, it’s a cold, cold feeling being ignored because they know I have dementia so they wish to avoid me, I became a monster to them and it’s all because the public are not very aware of the fact we are still the same person as I always was, and always will be, hence I wrote the same man song on the back of that experience, that’s why I am an advocate of awareness and speak about stigma a lot in my public talks.
Paul Hitchmough
NSG: You do a lot of charity work for Dementia and Alzheimer’s charities as well as setting up your own not for profit organisation, Thred CIC, being heavily involved in awareness training for the public and giving talks to post diagnostic patients and students at Liverpool John Moores University amongst other places, how did you become so heavily involved and how can anyone reading who wants to get involved?
PH: I attended a post diagnostic group at Mossley hill Hospital after my diagnosis, it is designed over 7 weekly hour long sessions to get you organised about living well/power of attorney/diet/medical help all that stuff, it’s done with PowerPoint/videos/discussions, etc. Anyway, this bloke got up and did the second half of the last session, he had us all laughing, right away from the doom and the gloom, I thought to myself I wish I had a doctor like him, so informative and funny, anyway, it turned out he had dementia and was asked to speak at different places about his experiences. I got talking afterward, we had lots in common, same age, same diagnosis [there are over a hundred variations] same tastes in music, we went for a pint and we got drunk and had a great afternoon in the pub and he invited me on board and taught me a lot about public speaking and the rest is history as they say. We have been all over the UK speaking and doing a few songs and we bring a different take on dementia in a light hearted fun way which really goes down well. We are both currently designing and leading a new programme of post diagnostic talks with Southport Hospital and continuing our stuff with Mossley Hill Hospital also but it’s on zoom so we do lose the personal touch. I would urge anyone who is diagnosed to always go to these meetings and join in and indeed volunteer to be involved in any way they wish or can, it’s very satisfying and all details are on our little Twitter show every Wednesday evening at 8 pm, so please listen in, also we have done stuff lately with the new dementia radio station online.
NSG: I read that you and your friend Tommy Dunne wrote a play that was showcased at The Everyman theatre for two nights? What was it called and what was it about?
PH: A few years ago, we were [and still are] in a dementia group started by m.h.h. [moss hill hosp] and they got a commission to do something artistic to present to the Everyman Theatre to perform whatever we came up within the small Theatre, it was for [PLWD] to come up with something, so because I played guitar, it was a natural thing deemed by everybody that I could write a play???? lol WTF! How that transpired I will never know, so Tommy jogged in and we had a 90-minute play about dementia written two days later, had a ball writing it based on all other group members’ personal experiences. We decided to call it a day in the life of Stern Hall [ a fictitious home for dementia] it included a deluded psychiatrist/a psychopathic matron/a bent ex-copper/ a shoplifter on the run, it would take too long to explain the plot. Anyway, the first reading we were in tears laughing as we gave the parts out, it was totally irreverent and fun, but then………….the laughter got worse as everyone who had a part couldn’t remember what they had just said, it was chaos, but one of the funniest days of my life. Anyway, it was censored heavily by the powers that be and we went ahead and did it to a great reception so it was all worthwhile in the end, but very nerve racking.
NSG: The pandemic has really changed the world hasn’t it, do you think the live music scene will be changed forever, and do you have any fears for the future of live music as a musician?
PH: This covid has changed our music scene dramatically, the heart and soul has been ripped out of Liverpool particularly as we are a city of art and culture and indeed music, I have many friends who are professionals really struggling, not doing the thing they love and were born for is killing them, they all have bills to pay and mouths to feed so just imagine if the rules stay the same [as they must I suppose] the musicians may be lost forever. What is a pub without music, it’s our cities heritage, Mathew st is one of the biggest attractions in the world for tourists, the bands in the pubs are brilliant musos, the standard of the buskers is amazing, and they’re all gone!!! what if they pack in and get a steady job, the creativity and diversity will be lost forever, the vibrancy and cultural heritage has gone forever, it hurts me, I was once part of those magical days…
NSG: You’re appearing in a two episode BBC documentary in the spring about you and your music with several other PLWDs, ‘People living with dementia’ aren’t you? How did that come about? Care to tell us a little bit about it if you’re aloud?
PH: I am involved with a dementia group called Deep. It’s a great organisation for [PLWD] as they have over a hundred dementia groups under their wing all over the UK. I have been to several gatherings over the years, it’s all very down to earth and fun, I play some music and we have a seminar and a social. I met Paul and Zoe Myles a while back as they are award winning independent filmmakers I have worked with before, they had a commission to do a documentary about [PLWD] so he got in touch with myself and Tommy Dunne and 4 others all living with dementia to do the film. When lockdown kicked in it got harder but we all were given small cameras to film it with that sends the film straight back to the London studio for editing, so it’s still rolling on until June. We have learned how to film and do interviews and angles and all that basic fun stuff so it’s been very educational for the future for Tommy and myself. There should be a lot of my music featured and I am begging the producers to let me do all the incidental music so I hope that works out, that will be exciting.
Paul Hitchmough
NSG: Will you be performing any live shows once the pandemic is over?
PH: yes I will be doing some stuff live, we never give in do we. I have friends with pubs in Garston and Speke and Lark Lane, so I have got some old recording equipment I have never used as yet so I plan to make some backing tapes [if I can figure it out] and do a little sixties night, something easy. maybe a quiet Wednesday night somewhere would be enough, I won’t accept payment but will pass the bucket around for a donation to support local services led by people living with dementia I know a lot of my friends are struggling so it wouldn’t be fair to do them out of wages so that’s the way I feel about it, a few pints will do.
NSG: If you had the opportunity to cook for three famous people from history who would they be and why?
PH: I would love to entertain Christopher Hitchens for his fearless and witty journalism and debates, I don’t think he ever lost one, but certainly we lost a depth of common sense humanity, and irony when he died. The second would be Claude Debussy the French composer, how did he get such beautiful melodies and tones into his music, phenomenal phrasing and delightful etudes just melt me. I visited his grave in Paris two yrs ago in a little graveyard by the Eiffel Tower. The third one would be Henry the 8th, just to tell him he was a lying bastard and he never did compose Greensleeves lol!!!!!
NSG: Could I ask you if you have any advice for people or the friends and family of someone who may have been recently diagnosed with a form of dementia?
PH: If there is anyone reading this who has a recent diagnosis of dementia, please, please don’t worry, it only makes things worse. Liverpool is an innovative hub for information and caring, there is lots of help out there. it’s a brave new world you are entering, never give up on yourself, join clubs, do music, keep occupied to keep your brain from deteriorating, look at me, I am still here !!!!!! Also, the last word, keep your body as fit as possible, I am a great believer in walking every day of my life, at least four miles, I mention this as the greatest help to my well being. I talk about Hippocrates in my speeches about stigma, he is the Grecian father of medicine who banished the stigma of his mentally affected patients 2500 yrs ago, they were thrown outside the city gates, he bought them back in and supported them. one of his famous quotes about his healing is [walking is thy medicine, medicine is thy walking], a mantra I am happy with every day of my life. And so to finish, thank you to NSG magazine, and all the staff for giving me this chance, love to all my muso friends in Liverpool, Spain, Argentina, and Thailand. love to my partner Paula and my two sons and partners for supporting me, and finally, deep/paul and Zoe/ and all my walking partners who I have bored with tales of gigging, and lastly, my beautiful 5 little grandies whom I love and adore.
I am still the same man ……………… and always will be, peace and love.
Lastly, come join us on Twitter to talk, We have carried out 40 one hour tweeter sessions over the past 40 weeks. We do the Twitter chat every Wednesday from 20:00 – 21:00 and since the start, we’ve had 2,127 followers on our @thredCiC account. Tommy has 9,910 followers on his TommyTommytee18 account. People can join the chats on Wednesdays on #DementiainLiverpool #thredCiC
Tommy Dunne BEM
Tommy Dunne was awarded the British Empire Medal (BEM) in June 2016 for his work for People living with dementia.
Tommy is also a co-founder and director of our transport health research economy/education dementia Community interest Company thredCiC. Which is a not for profit company working to improve the lives of people living with dementia.
Tommy like myself firmly believes that music is underused in the carer of people living with dementia and their carers.
For more information on Paul and Dementia click on any of the links below highlighted in pink.
Twitter Links
ThredCiC Wednesday Twitter chat
Websites
Paul Hitchmough: Living with Alzheimer’s is a website full of all of Paul’s music and videos.
Thred CIC (community interest company): no borders, not barriers – putting people living with dementia and their carers in the lead, ensuring their voices and opinion are heard. Providing inspiration and campaigning for better understanding and support for people with dementia and their carers
DEEP: DEEP stands for the Dementia Engagement and Empowerment Project – it is the UK network of dementia voices. DEEP consists of around 100 groups of people with dementia – groups that want to change things.
M4D Radio: m4d radio is part of the Music for Dementia campaign to make music available to everyone living with dementia. Their ambition is to make music freely available and a part of everyone’s care plan, the station is available 24 hours a day, 7 days a week filled with nostalgia music for people living with dementia totally free.
