I will carry on giv­ing my­self to the cause Tony was so pas­sion­ate about

Tony is re­leased from the tor­ment of de­men­tia but to make him truly free I wanted a Viking cer­e­mony in Orkney

The Irish Times - Tuesday - Health - - Front Page - Steph Booth

Ihave made my first trip alone, in con­trast to sim­ply trav­el­ling alone. When I was writ­ing my doc­tor­ate I trav­elled widely through the Czech Repub­lic and Poland. I was con­fi­dent and happy to be on my own. Now is very dif­fer­ent. Then I was go­ing home to my hus­band. Each day I was away he was at the end of the tele­phone want­ing to know how I was and how my re­search was go­ing.

Trav­el­ling to Orkney to scat­ter Tony’s ashes and to try and learn how to eat and sleep again, I no longer have that same level of con­fi­dence. Per­haps this is nat­u­ral af­ter the loss of Tony, but I feel I have the word “Widow” stamped through me like Black­pool rock. There for every­one to see. I am shaky and do not know how to set­tle into this new re­al­ity – the black rings and bags un­der my eyes tes­ti­mony to my mis­ery. I find it dif­fi­cult to look peo­ple in the eye. I am afraid of find­ing sym­pa­thy there. I need pri­vacy to cry. Orkney is some­where I have al­ways wanted to visit. A land of myths and le­gends and an­cient peo­ple. Tony was usu­ally happy to go along with my travel sug­ges­tions, but on this one he was adamant. There was ab­so­lutely no way on this earth he was ever go­ing to Orkney.

I tried point­ing out, to no avail, that we had been to Copen­hagen for a long week­end – and that was even fur­ther north. Al­legedly, that was dif­fer­ent. No mat­ter how cold, Copen­hagen is still a so­phis­ti­cated me­trop­o­lis, not a wind-blasted rock in the North Sea.

When Tony and I were in Copen­hagen we took a train jour­ney north to the Old Viking cap­i­tal, Roskilde. There was, of course, a Viking mu­seum. As mu­se­ums go it was fine, if you like that sort of thing. And Tony did. My feel­ing is, if you have seen one Viking long boat then you have es­sen­tially seen them all. I du­ti­fully trailed around al­low­ing my­self to be ed­u­cated. As we were com­ing to the end of the ex­hi­bi­tions I no­ticed some­thing that made my heart sink to my boots. Oh no, no, please no.

I im­me­di­ately en­gaged Tony in earnest con­ver­sa­tion about how far the Vik­ings had trav­elled. Why, they even made it to Dublin. Per­haps, he was right and his Ir­ish fore­fa­thers were de­scended from Vik­ings? My sud­den an­i­ma­tion on the sub­ject made Tony im­me­di­ately sus­pi­cious. What was I try­ing to hide? Then he spot­ted it. A dress­ing up box full of Viking out­fits. It was ir­re­sistible. Sur­pris­ing a group of chil­dren and their even more sur­prised par­ents, he grabbed a cloak, sword, shield and Viking hel­met. He wanted me to pho­to­graph him. My face shone like a beacon with em­bar­rass­ment. I fig­ured the sooner I took the pic­ture the sooner I could drag him away. But no. One lit­tle boy was brave enough to start a sword fight with Tony. Soon oth­ers were join­ing in and there was a mass Viking brawl in the play area. At the risk of caus­ing tears and tantrums – and that was just Tony – I man­aged to re­move him from the melee and es­cort him from the build­ing.

Truly free

I had for­got­ten, or was more likely trau­ma­tised by, this story un­til I was think­ing about what to do with Tony’s ashes. When he died, so many peo­ple said to me he was free from his tor­ment. That was true, but he was still pinned to the earth. I wanted him to be truly free. Orkney and Vik­ings were the so­lu­tion.

When I knew the wind would be in the right di­rec­tion to blow Tony to Nor­way, I crossed the cause­way to the Brough of Bir­say, climbed the hill and walked to the north­ern-most point. Tony is now free to roam, to cause may­hem and re­main a good, strong spirit. So, what now for me? I have a book to write, a gar­den to tend and grand­chil­dren to en­joy. I look for­ward to the time when my aching loss be­comes less raw – more of a gen­tle, lov­ing re­mem­brance. I also promised Tony I would con­tinue to cam­paign on the is­sue of de­men­tia.

I re­main an­gry and frus­trated by how lit­tle progress has been made in the years of Tony’s ill­ness. I am riled by sto­ries in the me­dia about how such and such a thing will pre­vent de­men­tia. It is fake news dressed up as pseudo-sci­ence. If we do not un­der­stand what causes de­men­tia how can we know what will pre­vent it?

Aware­ness-rais­ing as a phe­nom­e­non has been suc­cess­ful. More peo­ple know about the con­di­tion and can put a name to it. That is fine as far as it goes. But must we con­tinue with the log­i­cally and mo­rally ques­tion­able as­sump­tion peo­ple with de­men­tia are “dif­fer­ent” which such schemes im­ply? Recog­nis­ing some­one has de­men­tia is not the same as un­der­stand­ing the needs of that per­son and help­ing them to func­tion within a given so­cial frame­work.

We should not shy away from a rad­i­cal re­think of de­men­tia pol­icy – at ev­ery level – gov­ern­men­tal, eco­nomic, re­search, so­cial pol­icy, ur­ban plan­ning, home de­sign and build­ing, robotics, the role of the health ser­vice and any­thing and ev­ery­thing that would drive for­ward the goal of ul­ti­mately achiev­ing nor­mal­i­sa­tion. We should not be afraid to turn cur­rent think­ing on its head and recog­nise that it is not de­liv­er­ing.

I be­lieve we should be mov­ing away from fo­cus­ing solely on the holy grail of cause

Tony is now free to roam, to cause may­hem and re­main a good, strong spirit

and treat­ment. While this con­tin­ues with the con­se­quent tar­get­ing of money into drug re­search, those who are suf­fer­ing now must go on strug­gling with in­ad­e­quate and fail­ing sys­tems. Re­search, pol­icy and prac­tice must be more per­son-cen­tred, not just biomed­i­cal and re­duc­tion­ist. The shift has to be di­verse, imag­i­na­tive and sus­tain­able – equal in im­por­tance to drug re­search, not just as an add on.

From my own ex­pe­ri­ence of car­ing for Tony, I know a per­son-cen­tred ap­proach would feed into, and pro­vide cru­cial in­for­ma­tion for med­i­cal re­search.

I have banged on about this for years now, but the knowl­edge and ex­pe­ri­ence of the carer, wider fam­ily and friends can­not be dis­missed as anec­do­tal. Not if we are se­ri­ous about un­der­stand­ing this com­plex con­di­tion.

Pa­tro­n­is­ing

A per­son-based ap­proach would also move us away from the cur­rent phar­ma­ceu­ti­cal driven hege­mony that dish­ing out pills is the an­swer to ev­ery­thing – when it is clearly not. I am far from cer­tain how the tablets given to Tony helped him, if at all.

Es­sen­tially, they were a placebo for me. Al­low­ing me to be­lieve, “some­thing was be­ing done”. Pa­tro­n­is­ing me in a way I came to re­alise was the norm when deal­ing with car­ers.

For all his faults (and there were a few) Tony never com­pro­mised on his prin­ci­ples – the fight for equal­ity and so­cial jus­tice. De­men­tia was his last cause, both per­sonal and po­lit­i­cal. One of his favourite quotes from Shake­speare was, “To thine own self be true.”

So, yes I will gar­den and quilt and in­dulge my grand­chil­dren, but I will also carry on giv­ing my­self to the cause Tony was so pas­sion­ate about.

Liv­ing with de­men­tia.

I am still here.

PHO­TO­GRAPH: GETTY

Tony Booth’s ashes were scat­tered in a Viking cer­e­mony on the Orkney Is­lands.

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