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I was born in the village of Kensworth, Beds. On passing my 11plus exam I attended Luton Grammar School between 1947 & 1952.
On leaving school I started work as an apprentice at AC Sphinx, soon to become AC Delco & finally Delco Products.
I qualified as as toolmaker before leaving to do my National Service with the REME from 1958 until 1960.
I was soon attached to The Army Education Corp & taught mathematics to to the regular soldiers who needed academic qualifications to gain promotion through the ranks.
On leaving the army I returned to Delco Products where I ended my career in 1993 as a Design Engineer in the Methods Department, designing special purpose machines.
Mavis was born in the town of Dunstable, Beds. She went to Northfields School where she became head girl.
On leaving school she also started work at AC Sphinx as a secretary.
That is where we met, so AC Sphinx not only gave me employment for life but also a wife for life.
I have been married to Mavis, the love of life, for over sixty one years.
She has been the love of my life from when we first met & still is to this day.
Mavis is the most gentle, caring, loving person you could ever wish to meet.
Thankfully that has not changed even with the burden she now bears.
Now “The Carer” needs care, because on 1st April 2018 sadly, Mavis was diagnosed with Alzheimer’s Disease.
So, from that date I have assumed that care role, although I had been gradually doing more for Mavis for maybe five to ten years, as I saw signs of what was to come.
It has been the most difficult few years of my life as I have fought to understand & deal with a “new” Mavis, but also the most rewarding as I see what love can do when medical science has no answer.
Initially, we had great support. My GP quickly arranged for Mavis to be assessed & we were soon in the hands of The Memory Clinic. He also checked if we had Lasting Power of Attorney. This we did have & I would recommend everyone to do this. It is so important as a relative of mine spent a fortune on court fees when her Mother died without one.
On completion of the process we were linked to Carers in Bedfordshire who have been my saviours throughout. They have guided me through the complexities of the support system that exists, if you know how to find it, from Attendance Allowance, Council Tax Discount & Blue Badge Application. They know how.
However just as valuable has been the moral support provided by a weekly phone call from someone that understands what I am dealing with. My Befriender has phoned me every week & offered me comfort & has been a link to the dedicated specialists at the charity who have then given me valuable guidance throughout. This regular source of conversation is also so important because dementia erodes that part of your relationship.
However sad to say after that initial support, apart from Carers in Bedfordshire, I have had until recently very little support.
From the first involvement with The Memory Clinic until September 2022 Mavis has had no Mental health care. A period of about 4 ½ years.
Initially we were supported by our GP but that help ground to a sudden halt when Covid19 arrived. I spent a small fortune on phone calls at 8.00 AM trying & failing to see a doctor.
When I really had to get medical help my only route was via the 111 system. That has been my only access to care until recently & I recommend that route.
We became invisible.
Of course the A & E system still operated & when in January 2021 Mavis fell in the kitchen & dislocated her hip they did take her to hospital, 4 hours after her fall.
The accident happened at about 6.00 PM & Mavis was taken to hospital about 10.00PM.
At 3.00 AM the following morning I had the most disturbing phone call of my life. A doctor rang me to say that Mavis was going to surgery to have her hip reset & that he had issued a Do Not Resuscitate Order. I questioned this & was told I had no say in the matter as it was “a medical decision” based on the fact that Mavis had Alzheimer’s. I later discovered that the Government had issued guidance under Covid19 regulations that patients with mental health problems should not be resuscitated. Thankfully Mavis recovered & came home 4 days later & has managed to continue walking but with less confidence.
One thing I have been so pleased about is the fact that Mavis was not in a Care Home when Covid19 struck. If she had been I am sure she would not still be alive.
Watching Mavis fade has been a very painful process but the fact that she still knows me is a great comfort.
The biggest problem I have had to deal with has been her obsession with going to the toilet, night & day, at frequent intervals. She, thankfully is not incontinent, it is just a habit. This has got gradually worse over the last 18 months starting from the day that she was discharged from hospital after her fall. Peaking when Mavis was visiting the toilet 50 or 60 times in a night.
For that 18 months I had only about 4 hours sleep from about 11.00PM to 3.00AM. I lost 1 ½ stone in weight & reached breaking point.
I sought advice from where ever I could but could find nobody with an answer.
Finally I went to my GP’s surgery & I told the receptionist that my wife & I were staying seated there until I had a face to face appointment. She believed me & we both saw our GP.
Since then things have improved a lot as the doctor got Social Services involved & I now have vouchers to get a sitter to give me respite each week. AgeUk now provide me with a carer who allows me to rest or go out on my own to walk or catch up with tasks & what is more she does a lot of housework for me. She is an absolute Angel.
However the attempt by the doctor failed to get any mental health care but that was solved by my friends at Carers in Bedfordshire who referred me to DISS ( Dementia Intensive Support Service) who stepped in & now Mavis is on Memantine as well as Donepezil & the toilet obsession has eased. I am now sleeping better & of course so is Mavis, & I have gained 4 ½ pounds in weight.
I asked my doctor if he knew of DISS & he said he did. I wonder why he did not refer me.
After all my effort in seeking help it was painful to be told by a DISS team member that it would have been better if Mavis been prescribed the Memantine a couple of years earlier.
I believe that the health system failed both Mavis & myself, as it has thousands of others, with its single minded involvement with Covid19. Also people with dementia are unfairly treated financially by the system that means many of us will lose all we own because dementia is not considered to be an illness but is a social need. Try living with someone with dementia to find out if it is an illness or not. I am in constant contact with my MP to press for change. Any change will be too late for me but maybe not for others in the future.
However, we are now visible again.
From the very beginning I decided to be quite open with all my family & friends about the diagnosis. This has meant that everyone has been very supportive.
This meant that our sons & their families have been constantly supporting us both over the years. During Covid19 I had Skype calls daily so that we did not feel abandoned, that was extraordinary considering that they had family life & workloads of their own to consider. When I expressed my gratitude I was told “It’s payback time Dad”.
I decided that our social life should continue as much as possible.
Mavis & I had played bowls for the last twenty years & the bowls club has been the centre of life outside of home. Although Mavis can no longer play bowls I take her with me whenever I am playing. She recognises familiar faces & feels at ease. It is her happy place.
Mavis has sung all her life. She has a fine soprano voice & has won many competitions over the years & sung at The Royal Albert Hall with the Band of The Irish Guards. She also appeared, with The Dunstable Girls Choir, on the Carroll Levis Discoveries TV show. She was a member of The Dunstable Girls Choir & then The Chiltern Singers for over 70 years. Music has been her life & still is. I use that love of music to relax her & revive some memories on a daily basis. We listen to both YouTube & Spotify & on the sound of the very first note Mavis knows every word of any song she ever heard. It never fails to amaze me how she can do that. Thankfully I have managed to copy two reel to reel cassette tracks of Mavis singing solo with the choir onto my computer as a mp3 file. They were on an old tape recorder & forgotten for years. So we can also listen to her singing when at her peak in the mid sixties. One track is I Give My Heart & the other is The Nun’s Chorus. [Click the links to listen to these through YouTube].
Mavis has sung many different songs over her 70 years with the choir, mostly from the musicals, frequently by Andrew Lloyd Webber. Also many pieces were from the hand of John Rutter & we now find his compositions, such as The Clare Benediction, The Lord Bless You & Keep You, Look at the World & For the Beauty of the Earth of great comfort.
Although not so mobile since her fall Mavis is still able to walk up to a mile & we try to walk as often as possible. I now know my local area so much better than I did before.
Life has changed beyond imagination.
I have learnt to cook, I have made new friends, some by phone & some as in the case of Carol, my Carer from AgeUk in person. My older friends have become closer as their natural instinct to care shows & our love for each other is stronger than ever before. We tell each other every day that we love each other, sometimes more than once. I sometimes get cross & feel immediately guilty because I know that she can not help doing what made me cross. But when I say sorry, Mavis just smiles & says that it doesn’t matter because she knows I love her.
We will never take each other for granted as perhaps we once did. Although life has changed so much, when we snuggle up in bed at night & I cradle my beautiful wife in my arms, just for a short while, life is as it has been for the last 61 years. It is important to count our blessings, things could be worse. I still have my wife & that inner beauty is still there, she thanks me daily for helping her & that is all I need.
We will never take each other for granted as perhaps we once did.
Although life has changed so much, when we snuggle up in bed at night & I cradle my beautiful wife in my arms, just for a short while, life is as it has been for the last 61 years.
It is important to count our blessings, things could be worse. I still have my wife & that inner beauty is still there, she thanks me daily for helping her & that is all I need.
I hope that my story can help someone in some small way.
When on 16th September 1961 we were married at Whipsnade, Mavis’s Father was too ill to be there at the church. So after the church ceremony we went, complete with Bridesmaids, to the hospital & walked the length of the ward to see him.
A few weeks later he passed away but he had asked me, on that day, to promise to look after his little girl. Of course I promised him that I would.
61 years later I am still looking after his little girl & all I need to honour that promise is to live longer than her.
Time for another cuddle.
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