Liv­ing and danc­ing with de­men­tia

RE­PORTER DAVID MEDCALF FOUND HIM­SELF SINGING ALONG WITH SOME OLD FAVOURITES AT THE CHRIST­MAS SES­SION OF ‘MU­SI­CAL MEM­O­RIES’ IN GREY­STONES, RUN BY WICK­LOW DE­MEN­TIA SUP­PORT. HE ALSO SPOKE TO SOME OF THOSE PRESENT.

Bray People - - INTERVIEW -

IT is one of the most un­likely Christ­mas rave- ups of the sea­son. The ‘ Mu­si­cal Mem­o­ries’ ses­sion at the hall be­side St Pa­trick’s on Church Road in Grey­stones has been a fea­ture of the lo­cal so­cial scene for the past four years.

Those who come to en­joy the mu­sic each Fri­day file into the big room af­ter the early morn­ing bad­minton play­ers leave the court. The net and the shut­tle-cocks make way for a group who have de­men­tia in com­mon.

Some are di­ag­nosed with Alzheimer’s dis­ease or some other form of de­gen­er­a­tive brain con­di­tion. Oth­ers are the car­ers who en­sure that the first men­tioned may con­tinue to live in their own homes rather than re­side in hos­pi­tals or nurs­ing homes.

Also present are the vol­un­teers who make Wick­low De­men­tia Sup­port a source of joy to those who are touched by the or­gan­i­sa­tion.

This is a so­cial oc­ca­sion and the fact that some of those present may have dif­fi­cul­ties with re­call­ing names or keep­ing track of cur­rent events is ir­rel­e­vant.

Peo­ple take part in or­der to en­joy them­selves and every­one ap­pears to have a smile on their face.

Though the hall is bright and clean, the set-up ap­pears at first glance to be a tri­fle for­mal, with ta­bles laid out in horse­shoe for­ma­tion. This could per­haps be a busi­ness meet­ing or maybe a sem­i­nar but in fact it is noth­ing of the kind.

In­stead of min­utes and re­ports, there are plate-loads of bis­cuits to hand and the Burco is com­ing cheer­fully to the boil.

A shadow, a stigma, hov­ers around the word de­men­tia, leav­ing your re­porter in some trep­i­da­tion as to what he might find here. He need not have wor­ried. The chat­ter as every­one waits for the for­mal­i­ties to be­gin is noth­ing out of the or­di­nary.

The weather. shop­ping. fam­ily. prop­erty prices. di­vorce. The only slightly glum note is struck by a woman who con­fides that she has been barred from driv­ing be­cause of the de­men­tia. She fully re­alises why the car has gone from her life but she still re­sents the loss of in­de­pen­dence. So it has come about that Fri­days in the hall have be­come very im­por­tant: ‘It is great to have this to come to,’ the lady muses. ‘I love meet­ing with peo­ple.’

The man be­side her is of sim­i­lar mind: ‘I come here ev­ery Fri­day and en­joy ev­ery minute. It’s the friend­ship – every­one talks to every­one.’

And while they are still fit to get out and about, Wick­low De­men­tia Sup­port means that there is no rea­son why they can­not con­tinue to have a so­cial life. To­day, every­one is all set to be en­ter­tained by singer, guitarist and some­time song­writer Ray Cran­ley. He has donned a very Christ­massy red shirt to mark the sea­son, with his gui­tar is all tuned up and ready to play to a fa­mil­iar au­di­ence.

‘I know all the old songs, be­cause I am old my­self,’ is Ray’s twin­kle-eyed claim, and it is no idle boast, as he has been play­ing to old folk for at least 46 years. He ap­pre­ci­ates the re­ac­tion his songs trig­ger at the ‘Mu­si­cal Mem­o­ries’ ses­sions: ‘It is fan­tas­tic to see the faces light­ing up’. But

spon­ta­neous ap­plause when the Nip­pers march to the top of the room – it is a very touch­ing mo­ment. A dozen chil­dren from the Grey­stones Montes­sori pre-school which meets else­where in the same build­ing, they are im­pos­si­bly cute and guar­an­teed to raise the spir­its of any gran­dad or grand­mother. Led by their teach­ers Emma Soth­ern on ukulele and Kelly McDon­ald, the kids take every­one through a spir­ited ren­di­tion of ‘ Twin­kle Twin­kle’.

Af­ter they take their bow, Ray strikes up a lively ‘Walk­ing in a Win­ter Won­der­land’ and the party is truly un­der way as the danc­ing soon be­gins. The women are first up but the men, with bash­ful boy­ish grins, are soon coaxed into join­ing them by the in­de­fati­ga­ble Mary Darcy. Though much else may fade, fa­mil­iar mu­sic and well-trod­den dance steps are all but im­pos­si­ble to for­get.

In the kitchen, over the wash­ing up, your re­porter has a word with some of the vol­un­teers about their ex­pe­ri­ence of AlzPals and the way in which it pro­motes a one-to-one friend­ship. Patte O’Reilly, a na­tive New Yorker, re­calls that she was as­signed to a woman who would never re­mem­ber her name from week to week. Yet Patte was still recog­nised as fa­mil­iar and the two women would go for a walk through Avoca vil­lage, stop­ping at the Handweaver­s café for tea and chat. Yes, hav­ing de­men­tia does not kill the de­sire for con­ver­sa­tion.

Mike Fisher, who is the main or­gan­iser of the ses­sions at St Pa­trick’s, re­calls how he was paired up with a man who en­joyed the out­door life: ‘So we would go to En­niskerry for walks. He was fif­teen years younger than me and he used to walk the legs off me, while he was well enough.’ While he was well enough. Each pa­tient’s ex­pe­ri­ence of de­men­tia is dif­fer­ent but there is no es­cap­ing the fact that the graph ul­ti­mately leads down.

Re­tired nurse Jenny Lewis is the DJ on the days when Ray Cran­ley is not in at­ten­dance, self-pro­claimed benev­o­lent dic­ta­tor of the turn-ta­ble. She has been one of the AlzPals since 2012 and she speaks with clear af­fec­tion of each of her suc­ces­sion of pals. There was the woman she vis­ited once a week in her Bray home where they played coun­try ’western mu­sic at high vol­ume in the front room. Then there was a woman who could not speak be­yond the odd word or half sen­tence but who still en­joyed trips to Cor­nelscourt or chap­ters from Jane Austen au­dio-books.

‘She had the most lov­ing smile and she was happy. Vol­un­teer­ing is so ful­fill­ing and every­one should do it. Mu­sic is the one thing you can use – I have seen it more than once. There are de­men­tia drugs but they don’t work very well.’

Wick­low De­men­tia Sup­port is ad­dress­ing a con­di­tion which touches al­most ev­ery fam­ily at some time or other. Ac­cord­ing to Mike Fisher’s fig­ures, there are 1,600 known cases in the county, with per­haps 55,000 na­tion­wide. Many of these are in full time care but the or­gan­i­sa­tion’s mis­sion state­ment is a dec­la­ra­tion of hu­mane in­tent: ‘ to sup­port peo­ple with de­men­tia and their fam­ily car­ers so the per­son with de­men­tia can stay at home for as long as pos­si­ble.’

The Grey­stones gath­er­ing is not the only reg­u­lar on the WDS pro­gramme, though the for­mat in St Pa­trick’s is a lit­tle dif­fer­ent to the oth­ers. The so­cial groups who meet on Mon­days at St Peter’s par­ish cen­tre in Bray or at the Do­mini­can in Wick­low on Wed­nes­days pre­fer to play games in­stead of lis­ten­ing to mu­sic.

Maritta Mur­phy from the group in Wick­low Town reck­ons she has at least ten reg­u­lars and she stresses that they are not con­tent to stay in all the time: ‘We went to the Bord Gáis The­atre for ‘War Horse’ and the Chi­nese restau­rant in Wick­low is a reg­u­lar haunt.’ The no­tion of head­ing out, be­ing seen, ex­plor­ing the world be­yond the strict con­fines of home is one which ap­peals to Maritta: ‘As a so­ci­ety we un­der­es­ti­mate what peo­ple with de­men­tia can do. I have seen how peo­ple with de­men­tia are all too of­ten left with­out so­cial in­ter­ac­tion or with­out fun.’

Trained vol­un­teers ready call­ing once a week, ready for a chat and a slice of cake, are of­ten the ones who in­ject the miss­ing fun, while also light­en­ing the load of car­ers who are oth­er­wise on duty 24/7. WDS runs carer sup­port groups in Newtownmou­ntkennedy and Bray which meet once a month to share ex­pe­ri­ences and ex­per­tise.

And, in ad­di­tion to AlzPals, the or­gan­i­sa­tion has a pro­gramme called ‘Meet and Eat’ un­der de­vel­op­ment, an­other of their sim­ple but bril­liant ini­tia­tives. The idea is that trained vol­un­teers visit peo­ple with de­men­tia in their own home once a week to cook and share a meal. Al­ter­na­tively styled a so­cial eat­ing pro­gramme, ‘Meet and Eat’ has ex­tended MDS’s pres­ence from its es­tab­lished heart­land in the north-east of the county along the coast to Ark­low.

At her of­fice in a busi­ness park on the out­skirts of Bray, Wick­low De­men­tia Sup­port founder Jenny O’Reilly sits sur­rounded by the posters and para­pher­na­lia gen­er­ated by the end­less cy­cle of fundrais­ing. The race nights, craft fairs, tea par­ties and bag packs all play their part, not only bring­ing in the cash, but also in rais­ing aware­ness of the is­sue and the ser­vice which tack­les the is­sue. Fur­ther funds come from the health ser­vice, from Pobal and from Wick­low County Coun­cil.

De­men­tia is ex­pe­ri­enced in ev­ery cor­ner of Ire­land, so she ap­pears al­most sur­prised that the rate of ex­pan­sion of the or­gan­i­sa­tion has been steady rather than spec­tac­u­lar: ‘We were es­tab­lished in 2010 and we are still very small,’ she muses, re­call­ing that it all started at a pub­lic meet­ing in a pub in Del­gany. Those present, with Jackie O’Toole to the fore, iden­ti­fied the lack of sup­port to fam­i­lies liv­ing with de­men­tia. The logic of this di­ag­no­sis led on nat­u­rally to the cur­rent pro­gramme of events and the AlzPals – the coun­try’s first de­men­tia be­friend­ing ser­vice.

Any­one wish­ing to vol­un­teer, the num­ber to call is 089-428 6928.

ABOVE: Tony Keat­ing, Sharena Ab­dul­lah and Ail­ish Solon. TOP: Mike Fisher, Jenny Lewis, Ray Cran­ley, Mary D’Arcy, Cather­ine Han­ney, some of the Wick­low De­men­tia Sup­port Team.

Ray Cran­ley leads the sin­ga­long and danc­ing.

Tom and He­lena Moore danc­ing.

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