DISARMING DEMENTIA...... the Brian Hennell way.

The Hennell Household before dementia.

Life had been very full, bringing up three sons with loads of interests and feeling the full effect of being parents as chauffeurs, caterers, entertainers, advisors, nurses, seamstresses for fancy dress, mentors, financiers, parent /teacher attendees, committee members of judo groups, scout troops and sea cadet units.... won’t go on for I’m sure you know the scene. Suffice to say that our love of theatre, dancing, writing, reading, music and much else including travelling had to be fitted in around two full-time jobs and children’s needs. With hindsight, as most parents must feel, we don’t know how we did it but there is much proof that we did... and with a modicum of success too ! We managed, often on a shoe-string, to see most of the world with or without our sons, whilst satisfying our wanderlust and curiosity for what makes others tick.

It was in 1992, after a road crash had caused me to take early retirement from my job with the government , that our sons started making their own way in life, and, almost by accident, empty bedrooms started to be filled with students, teachers and professionals from other countries whilst they studied English. Our three Visitors’ Books pay tribute to the bonds which were formed and many still make contact regularly. Often the dining table would represent many different nationalities amongst the 502 students from 42 different counties which were hosted from 1992 until 2009. Didn’t we laugh together, about but never at, misconceptions .... but that is another story with examples enough to fill a book. I’ll simply indulge myself by recounting one tale when dinner had been enjoyed with two Arabs, a Latvian, a Frenchman, a Belgian, a Spaniard and four English. June wrote on a large piece of paper ‘ Hello, my name is June, I live with my husband and three sons and I am from England’. The paper was passed around the table with each nationality writing the equivalent information about themselves in their language. Squealing with delight, last in line, the beautiful Latvian TV presenter in her 30s, declared that she could write her name in Arabic from what had been written and she did. Looking at the paper, the Arabs fell off their chairs laughing for you can’t do that ! Deconstructing their words in Arabic and creating another word had produced a VERY rude word indeed !

Diverting a little....

• can you imagine the adjustments needed for those students from a nationality where traditions demand that girls walk on one side of the road and the boys on the other ?
• consider that, in some European countries, going out for an evening meant leaving home at 11pm and returning next day for breakfast. We had a curfew of 11pm !
• now imagine life around our dining table, sharing bathrooms or, more diverse, attending pop concerts and dancing in the aisles with us. A very different life.

Back to the dinner referred to above...next day the students were still laughing and told their class Tutor about the episode. This took our reputation for being ‘special hosts’ to new heights and was a favourite story for repetition at every available opportunity.

We loved our life and I made a reasonable job of being a house-husband. Everyone seemed happy, June with her challenging job and the students benefitting from our ‘ one size does not fit all’ approach. What we didn’t do probably isn’t worth trying to recall. We seemed to have so much energy then. We even had to ask our last student to leave us in order to move in 2009, but that is another story. He had been with us for eighteen months and suggested moving to Gloucestershire with us and finding another school ! We were flattered but we needed time to adjust to our new life.... but more about that later.

It was in the mid 1990s that I started getting bad tempered about mislaying things and forgetting simple every day stuff. I had really slowed down but isn’t that normal after retirement, early or not ?

I knew that I was becoming hard to live with but couldn’t see a way back. June was still working hard and loved her job with central government but needed to do so much more in the house because I didn’t seem able to organise myself like I used to. She would come home from work and find that I hadn’t done what she had asked..... and didn’t know that it wasn’t because I couldn’t be bothered but because I had forgotten. I hated it. Always having had a tendency to be lazy, to put things off until I was in the mood, it looked as though this was what was happening and I didn’t know one way or another.

One day our good friend commented ‘ Brian, June didn’t deserve that tirade’. I told him to mind his own business because if I wanted his comments I would ask for them. That made me feel lousy afterwards but I was struggling enough trying to understand what, if anything, was happening to me without others noticing it. I couldn’t understand.

One day I got so fed up with trying to get some advice from June whilst she stayed non-committal about using super-glue, that I told her I might as well move out because we had nothing left in our marriage. I didn’t mean that but I just needed to be told what to do. Of course she couldn’t win because if she had been wrong I would have blamed her. She told me that she didn’t know and I didn’t want to hear that she was as confused as me. My confusion was making me irascible and unreasonable.

Was it old age ? If so, heaven help me. I was only in my 60s, too old to be senile.

One example of difficulty came when we were going to visit friends in Colombia in 2004. We wanted to learn to dance the salsa, having mastered all other dances in our years together. I couldn’t do it ! To my surprise June could do it and I couldn’t yet I had always been the best dancer. I felt awful,a failure. It was a huge shock.

Lots of little things went wrong but it wasn’t until 24.11.05 that June made a first diary entry which read ‘ What have I genuinely done wrong today ? Instead of the kind, fun loving and considerate man I once knew, Brian seems to have a split personality. When he is nice he is very nice, when he is not he is horrid.

In September 2007 we discovered a research programme being carried out by Bristol University into the effectiveness of Omega 3 on memory loss. June got me a place and, although I was given a placebo which disappointed us, the written report was helpful. It showed that there were problems with my verbal recognition memory and visual memory but there was no serious advice to seek further help and we drifted through 2008 enjoying our students and both a Mediterranean cruise and one from Genoa to Fort Lauderdale.

But we did continue to make diary entries which are the only way that I am able to recall what happened next !

The time came to get help and together we kept a note of all the issues which worried us. We both signed each page that we agreed them so that I couldn’t disbelieve them in the future. June suggested it but I didn’t mind because I trusted her implicitly and if she said I had done or said something then I knew I had. She was and is the most honest, caring and trustworthy person you could ever find. We’ve always been a good team.

We sought help in 2008.

We made an appointment with our GP in the Summer of 2008 and sent him a copy of the list , hoping that real detail would save us getting embarrassed or getting the facts wrong. After all, we already felt emotional and confused so how could we expect to get facts right without having them written down ? He gave me some simple tests which I just couldn’t do. Of course I didn’t know what day of the week it was, which month or which year. These things don’t matter when you have retired and June always knew, so why did I have to ? I felt stupid but June squeezed my hand and it all seemed better. I did feel pleased knowing that he would refer me for tests with consultants and eventually, having exhausted everything else, especially the possibility of physical or mental repercussions from the crash in 1990, I saw a wonderful Consultant Psychogeriatrician. After lots of questioning he made a cautious probable diagnosis of Frontal Temporal Dementia. This is all a haze and I can only remember it because it is written in all the presentations which June and I give at training events and conferences. He prescribed Citalopram and I recall walking out of the consultation holding the prescription and thinking ‘ I don’t care what I’ve got as long as something can be done to help me ‘ ‘ June is happy and at least I haven’t got a brain tumour and our marriage isn’t heading for divorce !’

The worst thing was telling our sons. We composed an email to tell them all at once and they were angry with us. Somehow we were supposed to have told them before but we couldn’t because we didn’t know. The telephone lines between them were red hot and the consensus was that we needed to sell up and move closer to the two who lived with their families in Gloucestershire . They even composed an imaginary rota so that someone could be with us all our waking hours if we lived near them. We quickly said that we hoped that wouldn’t be necessary for a very long time. The shock for them was awful.... worse than for us because all we felt was relief. I had been fearing the worse and seemed to have been balancing on a knife-edge of frustration and aggression for ages.

Now I had a way forward because the specialist said that he had had success treating this type of dementia with Memantine and, although NICE had not approved it yet, he would like to trial it for me.I was the recipient of his experience and self confidence and I shall be forever in his debt. I wish I could meet him again to show him how right he was and to thank him again.

I started to get my confidence back. I felt more relaxed and, once the medication clicked in, I felt grounded again. Life was worth living. I managed to visualise where I had put my specs so that I could find them again. My confidence in myself returned and I became nicer to live with. Everyone could see the difference. Friends understood and supported us, maintaining the long friendships we had shared. We made lots of adjustments and they worked.

We down-sized and moved to live near our children and grand-children. This wasn’t easy because we had been in our previous home for nearly thirty years. Agonising decisions had to be made about what to get rid of and I found this heart wrenching.I wanted to keep everything.

I was not happy about telling DVLA about the dementia in case they stopped me driving. I love it and still think that I am a capable driver. DVLA review my licence annually.

Life went on and we adjusted to living in our home by a beautiful canal in rural Gloucestershire. Our 12 year old Grand-daughter did lots of internet research and learned about how to deal with dementia. She gave me lots of hugs and encouragement. She is fantastic.

We connected with NHS Glos, Glos.C.C, Carers’ Glos and lots of charities and Social Interest Companies helping those with dementia. We became volunteers for lots and cooperated writing dementia training material and delivering it.

Living well with dementia, concentrating on what we could do and doing it as much as possible, it came as a shock when I started to experience urinary problems. A spell in hospital for minor surgery on the prostate put those right. Imagine my shock when six weeks later I was told that I had prostate cancer. How could I ? I had no pain nor discomfort . By now my memory span was seconds so I never worried specifically about this second diagnosis. Deterioration in my feel good factor did worry me though and it was June who was able to link this to Hormone Therapy which was needed to block testosterone from feeding the tumour for six months before radiotherapy could be started. I felt lousy, exhausted, very tearful and started imagining all manner of weird and wonderful aspects in my daily life. We got through thirty five days of consecutive visits to Cheltenham for radical radiotherapy and I was as surprised to be going on day 35 as I was on day 1. I still didn’t know the way on the last day any more than I did on the first. I do remember that the staff were very kind to me and never called just ‘ Brian Hennell ‘ but called ‘ Brian and June Hennell’ so that June could come with me and act as my memory. We took them cakes and cards at the end of the course and wrote lots of thank yous to them.

I felt exhausted, my tummy was upset but all this was to be expected. We survived ! But next I was to start visiting some very bad, dark places. It was like I imagine hell to be, frightening. Relearning that my Mother had died many years ago left me devastated and was something I couldn’t handle. I kept re-living what a bad son I might have been. Did she die wanting ? Did I do my best ? However much June told me about the good job I did for my Mother after my Father died, it didn’t matter. I started confusing June with other people. I couldn’t sort out why I was here with her having an affair behind the back of the Mother of my sons whom I knew I loved more than life itself. I kept apologising to my sons for the affair I was having with June and however much they told me she was their Mother and all was well, I couldn’t believe it. The house we lived in made me think I was on holiday in our caravan in Wales and I kept expecting to go home. Regularly I worried in case June hadn’t told my office where I was and that I might lose my job. I didn’t believe her when she said that I hadn’t worked since a bad road crash in 1990. What road crash ? What early retirement ? I didn’t know that the year was 2012.

My feel good factor was at an all time low and I felt that my head was going to explode. At no time did I feel comfortable. I kept meeting my Father on the canal bank when I walked Jack and I would end up walking in Somerset 45 years before and getting in an awful muddle.

June made the connection between my serious deterioration and the Hormone Therapy I was taking after a Urologist addressing our support group referred to the impact of HT on those without memory problems which was known to be much, much worse for those with. Learning from the Oncologist that I needed HT for another two years caused us horror. Very soon after I had a very bad spell of hallucinations and we decided to stop the HT contrary to the advice of the Oncologist. We explained that I had lost ALL my quality of life and that living my last years in a care home on anti psychotics but with the cancer comtrolled was not our chosen route. We were told that it would take 2 – 6 months for it to work out of my system and they were right.

After 6 months my feel good factor started to return. I can now truly say that I feel pretty good. I feel grounded, calm most of the time and secure. I’ve stopped hallucinating that I have met an old friend on the canal path and gone to his place for coffee. I love my daily walks with my dog and haven’t got lost for many weeks. That gives me confidence in my own ability.

Two weeks ago I said to June ‘ Aren’t we lucky ‘. She smiled and asked what I meant. I said ‘ Look out of the window. There is blue sky and sunshine. We have this lovely home, we have each other and no worries ‘ I really meant that and if that seems a silly thing for someone with dementia and cancer to say, then so be it. We go to see shows and movies. We love music and socialising with friends, both those with dementia and not. I do sometimes recognise that someone with dementia is worse than me with their condition. I am grateful for that but sorry for them. I am really grateful when people are gentle and kind with me. I don’t take kindly to aggression or unfairness. I like to take my time, disliking hurrying at all costs. Life pleases me, all little bits like animals and flowers and beautiful scenes. I cannot imagine tiring of travelling but these days we contain ourselves mainly to the UK. I always love time spent in London as we travel by train which I enjoy. An active social life has been important to me for the last fifty years and I cannot imagine becoming disinterested in having new experiences, meeting new folks or attending conferences and training events where we can help others to understand more about dementia. I am reading an historical novel whose author pleases me with his use of vocabulary and detail. Yes, I have to re-read paragraphs but I manage to salvage the plot through the use of the author’s engaging prose.

I love animal programmes on TV and re-runs of old comedies but I now cannot cope with convoluted plots in the detective series which I used to enjoy. Thank goodness for Countryfile, Blue Planet, David Attenborough, the Eden Channel and Mamma Mia which I have seen and sung through about eight times. I’ve even watched Dirty Dancing six times and love it each time. More recently I loved the movies Best Exotic Marigold Hotel and Quartet. I’m now looking forward to seeing Les Miserables.
I’ve been told that my particular dementia, Frontal Temporal Dementia, is only experienced by about 4% of those with dementia. ’Well’, said I on hearing that. ‘ If I’ve got to have dementia I wouldn’t want anything too common, would I ? ‘

We often tell those attending our talks that we’ve never been a particularly fashionable couple but that it was good to be on trend for just one day when our dementia diagnosis was given on 4 February 2009 ... the day that the National Dementia Strategy was announced.

Now that we are not treating my cancer, my dementia drugs are working their miracles.

When the Hormone Therapy was being taken I had no life, no calm, no security just unhappiness and a doubt whether I would see tomorrow in the hell surrounding me, let alone have a life. We can go forward for as long as we are able contributing to as many publications, dementia training sessions and conferences as we can fit in. As part of Dementia Living Link at Worcester University’s Association of Dementia Studies, we help to deliver dementia events and spread the word that creating dementia friendly communities is not about throwing funds at the problem but listening to the needs and advice of those who know ! If 10% of people are carers, what percentage of their customer base does that represent? Improving the lot for those who need just a little extra understanding and support can improve the lot for everyone.

Thanks to the good help of Carers Gloucestershire, June can get the support she needs .

Via The Alzheimers’ Society Good2Go Group I can meet with others with dementia without challenge and in a supportive environment.

Put together, how lucky am I ? How many men married for 44 years but having been with their partner for 46 years can truly say that they have everything they need ? Dementia or not, I’m lucky and appreciate that fact every da