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Hello, I’m me! Living well with dementia 

Hello, I’m me! Living well with dementia
Chapter:
Hello, I’m me! Living well with dementia
Author(s):

Brian Hennell

DOI:
10.1093/med/9780199644957.003.0030
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Brian Hennell was born in London in June 1938 to Marie, a talented tailoress and Frederick Hennell, a specialist toolmaker. Military requirements for Frederick’s job relocated the family to the Somerset Levels in 1942 where Brian grew up as an only child. This rural upbringing was to prove definitive in Brian’s life, for he became more at home with ‘wild’ animals and nature than other children.

Poor health in his early years gave rise to only average educational results, but a great love of the countryside developed, as did social skills in meeting with others, especially in ballroom dancing lessons from the age of 11. He became an avid reader and, as an adult, enjoyed competing with colleagues to be the first to complete the Daily Telegraph crossword. During National Service his previously spectator-only interest in sport became participative. His first marriage ended in divorce in 1968, when he married June and had three children between 1968 and 1971.

Brian’s career with the Civil Service was brought to an end following a serious car accident in 1990 when he lost the confidence to return to work. Instead he became a house husband and June took over the role of primary earner. Brian received appropriate medical help to come to terms with the crash and he succeeded in ceasing Prozac around 1995.

In their leisure time June loved to cook, paint, write, and explore creative opportunities, which Brian got swept along with very willingly. Grandchildren shared their time and brought great joy. Fond of travelling, June and Brian visited most of the world and had a wide network of friends throughout. Their home was dubbed ‘International House’ due to the high number of nonUK visitors in the form of students and others who visited. More than 500 new friends from 42 countries stayed at their home from 1992 until 2009. So, it was a very varied and interesting life that filled Brian’s time.

It was early in 2005 that Brian seemed to be changing, developing feelings of lesser wellbeing than he had had before. Mood swings and irrationality were noticed. At times he was irascible, unreasonable, and unkind, but not so frequently that it became a major issue for them. It was tolerable.

June’s diary entry for 24 November 2005 read:

What have I genuinely done wrong today? According to Brian everything is wrong and I am push, push, push yet all I asked him to do before I left for work was to shop at the supermarket. Instead he chose to do six other things which put pressure on us both and made him cross because he didn’t do the shopping. I’m fed up with being a verbal punch bag. Brian is the only person I know who can make the word ‘dear’ sound like a Sergeant Major’s criticism. What is happening to us? Instead of the kind, fun loving and considerate man I knew, Brian seems to have a split personality … When he is nice he is very nice but when he is not he is horrid. Can this be the normal ageing process for a man? If so, heaven help us.

Sensing that her presence was needed at home now if they were to have any quality retirement years together, June retired at the age of 61 in 2006. Her concerns grew—slowly, but it was a very confusing situation. Was it her fault? What was she doing wrong? Was this old age irascibility? Was their marriage truly at an end as Brian occasionally said?

Life went on. Brian would lose his spectacles three times in a morning, and his bad temper caused by mislaying such things was becoming more frequent. He also forgot things, but he was oblivious of the impact on June. A good friend occasionally commented, but he bit his head off, telling him to mind his own business.

June suspected that the decline in Brian’s feel-good factor was linked to his failing memory. She read in September 2007 that local university research was being carried out into the effectiveness of omega 3 on memory loss.

Brian got a place on that study and went through psychometric testing every month for four months whilst taking either omega 3 or a placebo daily. After four months, both felt that there was no improvement and in due course we learned that he had taken a placebo, not the active treatment. What was to prove fundamental, however, was the written report he received at the end of February 2008. The report showed that:

  • at initial assessment Brian’s immediate, delayed, and verbal recognition memory were well below expected limits for his age

  • his verbal recognition memory had deteriorated over the 4 months, and

  • his visual memory had declined and now fell below expectations for his age.

There was no real steer for them to take the results forward and the report was definitely not alarmist. The summer of 2008 was busy yet good for them with lots of visitors and interesting activities. However, Brian’s problems seemed to be worsening, so they started to keep diary entries of concerns.

Examples

1. Super glue

On 1 August, despite a really good day, everything changed in the early evening. As a result of June being unable to say ‘yes, that is right’ prior to Brian adding super glue to a project, he flared up saying, ‘You don’t trust my opinions. If we are together in five years, I’d be surprised. We might as well call it a day now as we’ve got nothing left in our marriage.’

The evening was full of Brian making accusations interspersed with bouts of hurtful silence. The only way out of the situation was for June to apologize, which she did.

Brian’s reaction had been unfair, mean, and totally out of proportion. Had June said ‘yes, this is right’ when she didn’t know whether it was or not, he would have blamed her if it had turned out wrongly. She was being truthful, but Brian saw it as unsupportive. With hindsight she should have agreed with him to keep the peace and manage the consequences.

Two days later, Brian could not remember the incident and said that he couldn’t believe he had said such hurtful things and was sorry. Clearly he had been frustrated about the placement of the super glue and, in seeking an end to the confusion, he lashed out verbally.

2. Renewing car tax

Brian told June that he didn’t know what a log book for a car looked like, yet he had owned cars for 45 years and had often dealt with log books. He became upset over the inability to tax the car six weeks in advance, even though it was unnecessary to be so premature.

This was such a surprise to June because she had always joked that Brian was born in the driving seat of a car! But it was clear that he had confused needs with timing. Afterwards he said that he found detail too much, even though historically he had dealt with many such issues. He couldn’t remember June renewing the previous year’s car tax by mobile phone from Inverness dockside, although it was a unique occasion. He couldn’t even remember being in Inverness, yet they had taken a Wedding Anniversary cruise down the Caledonian Canal.

3. Forgotten telephone call

One evening, June suggested that Brian phone the dog-sitter to arrange cover for the next day. He went off to do so whilst June cooked dinner for guests.

The next day at breakfast June asked whether cover was OK. Brian said that he hadn’t called the sitter. Their guests were able to say that Brian did make the call because last evening during dinner he had told them it was OK. Brian accepted this but had absolutely no recollection of making the call. The sitter confirmed that she was expecting the dog. This incident was surprising because all his life Brian had been a stickler for detail.

4. Difference between a credit card and a debit card

Approaching the airport car park, June checked with Brian which card he planned to insert into the machine to match up with their booking. Brian replied, ‘A debit card’. She replied ‘Well done, that’s right’.

Minutes later Brian inserted a credit card which incurred an additional charge of £51. Explaining the difference, June made sure that Brian understood the usage of each card.

The next day, June asked Brian to give her a debit card. He handed her a credit card. It was as though the previous day’s conversation had not occurred. Brian had always been financially astute, but now confusion seemed to have taken over.

5. Tiles in bathroom

Discussions took place regarding refurbishing the family bathroom. Sons and bathroom fitters all advised against tiling over existing tiles, so June and Brian agreed with the tiler that he would remove all the tiles at extra cost and make good the walls before retiling.

On the morning that the tiling was going to start, Brian said to June ‘I hope he doesn’t tile over the existing tiles’. Brian had totally forgotten the exhaustive discussions the previous day.

6. Directions

Their youngest son described the route: ‘Take next right, right again, and right again’.

Seconds later, Brian said, ‘I have to take the next three lefts, don’t I?’ It was as though Brian’s brain swapped choices for the wrong alternative. This happened very regularly. Another example was shopping in a supermarket, where he would choose the opposite, e.g. buying just onions when they had lots of onions but no other vegetables.

Only by recording these instances could June and Brian evaluate what was happening to them. It had been easy to dismiss them in the beginning, but they began to impact so significantly that their children started to notice too.

The final deciding factor came when, planning to visit friends in Colombia, the home of salsa, they enrolled for classes to learn the dance. Both had enjoyed many years dancing together, especially the cha cha cha, the jive, the quick step, and other ballroom dances, but had never tried the salsa. Brian, an ex silver medallist, couldn’t learn the steps which June found easy. This was incredible and a shock to both of them.

They couldn’t go on this way and, having run out of self-help options, realized that the time had come to involve their GP.

Having booked an appointment with their GP in August 2008 they sent him a letter setting out:

  • their concerns with actual examples of Brian’s behaviour

  • the results of the omega 3 research, and

  • a request that he take every reasonable step to assist them.

Appreciating the detailed information, the GP executed simple tests on Brian which he failed miserably. Taking their concerns seriously, he:

  • arranged blood tests which resulted in him recommending regular vitamin B12 injections just in case they might help, and

  • made a specialist referral to check Brian’s complete physical health in case the road crash in 1990 could have had residual effects.

By late September 2008, a consultant old age physician was able to report, following a thorough examination, that in his opinion there was no underlying medical reason for Brian’s deteriorating condition and that he would benefit from referral to a memory clinic and the help of a consultant psychogeriatrician. He also ordered a CT head scan which showed nothing abnormal.

An initial assessment by a memory service followed a month later, but real progress was made at the beginning of February 2009 when Brian was seen by the consultant psychogeriatrician. It turned out to be somewhat of a coincidence that the NHS National Dementia Strategy was released the same day.

Again, June and Brian sent in advance of the meeting a list of instances.

June’s diary reflects that this was a massive turning point for them and that the specialist was wonderful. After a three-hour consultation he gave:

  • a cautious probable diagnosis of frontotemporal dementia

  • a prescription for Citalopram

  • practical help such as advising about an Enduring Power of Attorney, considering their home arrangements, and whether downsizing to live nearer family may be wise

  • advice about DVLA notification.

June and Brian walked out of the hospital on cloud nine, moving from:

  • doubting their own judgement

  • feeling vulnerable and fearing the worse

  • balancing on a knife-edge of aggression and frustration, and

  • afraid of each other’s feelings

to feeling:

  • relief that a healthcare professional had taken them seriously

  • relaxed with one another in total honesty and so happy!

  • grateful that the diagnosis was not more serious

  • as though a weight had been lifted from their shoulders

  • thankful that they were given such fine specialist consultancy

  • neither naïve nor complacent but confident that they could meet challenges head on.

Thanks to receiving a diagnosis, they could evaluate how to go forward. Having a diagnosis is really important for many reasons. It stops you worrying that something even more serious, like a brain tumour, is causing the problem. Also it is reassuring that there is a medical reason for the difficulty, and that divorce is not the way out. It provides some light at the end of the tunnel.

Brian found the diagnosis helpful because it helped explain some of the strange feelings he had been experiencing, a sense of uneasiness that something serious was going wrong. These were not things he had been able to talk about before, as he would have said he felt ‘fine’.

Examples of changes in Brian:

  • One day soon after diagnosis, Brian took the sole decision to prepare a salad to go with dinner, preparing eleven salad items from scratch. After dinner he laid the table for breakfast. He hadn’t even thought of making such decisions for a long time.

  • The next day, asked to do a small task immediately, he replied ‘yes, no problem’. The week before he would have bitten June’s head off!

The psychogeriatrician’s early diagnosis gave Brian the tools to put the quality back into their lives. Neither could believe that two tablets of Citalopram could effect such a dramatic change in his feeling of wellbeing. Moreover, of course, it wasn’t the effect of the medication that was felt immediately, it was the euphoria that they could see a way forward. Life was worth living again.

Next steps for them included:

  • selling their large home of 26 years and downsizing to live near their two sons and their families in Gloucestershire, at their request, so that they would be on hand to provide help and support

  • making Enduring Powers of Attorney

  • informing the Driver and Vehicle Licensing Agency (DVLA) of Brian’s difficulties and receiving permission from them to keep driving for another year.

The consultant met with them again in March 2009 and advised remaining on Citalopram for the rest of Brian’s life. He also ordered a SPECT and MRI scan and repeat psychometric testing.

In June 2009, Memantine (Ebixa) was prescribed and by the next month they were able to agree that this was very successful. Brian was relaxed. He started to find his own solutions to problems—and it worked. For example, he managed to visualize where he had put his glasses and lost them less often.

June and Brian have spoken publicly about their gratitude for having met that particular psychogeriatrician and to the National Health Service for giving them back their lives:

Not every day is wonderful and there certainly are some difficult times—but we are going forward, taking risks and living life to the full. There is still confusion and the need to make adjustments, to be flexible and to learn.

Of the future, we both agree that this is an unknown quantity. We work closely as volunteers with the NHS and many other organisations. Both of us have given and received positive help from support groups. We believe that:

  • each of us must, as far as we are able, take responsibility for our own whole health and wellbeing and that of those close to us. This means eating and drinking wisely, taking exercise, and looking after our teeth, eyes, feet, and other things which are so important to us.

  • as individuals in possession of a diagnosis it is important for us to help ourselves by recording important, individual, and timely facts so that they may be passed on to professionals and used as signposts for cost-efficient individual care plans. An example is the Living Well Handbook which has been developed by NHS Gloucestershire. (available at 〈http://www.nhsglos.nhs.uk/your-services/older-peoples-services/dementia/〉)

  • every pound spent on managing dementia must be made to matter and, if authorities are to treat those with dementia and carers as individuals, a ‘one size fits all ’ brand must be buried once and for all. That means listening to and involving everyone in planning whilst it is still possible. What is needed is help at the right time when it is needed, be it respite, support at home, residential, or palliative care.

  • adopting a ‘can do’ attitude, socializing and supporting others and not being afraid to take risks, may maintain and improve feelings of wellbeing for as long as possible. Most things one does in life come with a risk, and living with dementia brings new ones. When empathy is short, we need to be patient and seek greater understanding through effective communication.

  • carers must be listened to and supported, for they hold the key to cost-efficient and loving care for the ones they hold dear. Failure to consult carers can waste time and resources and causes sheer frustration on occasions when medical intervention is necessary. Providing breaks must never be forgotten, for an ailing battery will eventually cease to function.

‘Nothing ventured, nothing gained’ was a favourite phrase of our mothers all those years ago. It is a philosophy worth remembering now when living with dementia. New memories cannot be made and the cumulative effect of joy experienced by those with a short-term memory is denied to those living with dementia. On the other hand, similarly, upsets are quickly forgotten, which is indeed a blessing.