We will be for­ever haunted by the last weeks of our fa­ther’s life

Dad was taken to an acute psy­chi­atric unit be­cause he had de­men­tia and died six weeks later

The Irish Times - Tuesday - Health - - Health | Dementia - Michelle McDon­agh

On Fri­day, Oc­to­ber 27th, 2017, my Dad, Séa­mus McDon­agh, was taken off in the back of a squad car, the first and only time in his 72 years he found him­self in such an ig­no­min­ious po­si­tion.

His des­ti­na­tion? The acute psy­chi­atric unit at Gal­way Univer­sity Hospi­tal. An­other first for a man with no his­tory of men­tal ill­ness. His crime? De­men­tia. The stress and trauma of be­ing taken by the gar­daí to a strange place where he was locked in by strangers and re­moved from all that was fa­mil­iar to him was enough to push a vul­ner­a­ble de­men­tia pa­tient over the edge. Dad walked in to that unit fit and ag­ile for his age.

Less then six dread­ful weeks later, he was rushed home in an am­bu­lance, barely mak­ing it on time to die in his own home.

Dad’s story is par­tic­u­larly har­row­ing, but he is not alone. All over Ire­land, de­men­tia pa­tients are be­ing in­ap­pro­pri­ately ad­mit­ted to acute psy­chi­atric units and shunted into nurs­ing homes against their will due to the ap­palling lack of ser­vices to keep peo­ple in their own homes and com­mu­ni­ties.

Our poor fa­ther spent the last weeks of his life in an acute men­tal health fa­cil­ity sur­rounded by peo­ple he thought were try­ing to kill him. Such was his level of dis­tress that he gave up eat­ing and drink­ing and re­fused all med­i­ca­tion.

I signed the in­vol­un­tary ad­mis­sion form to have my fa­ther “com­mit­ted” to the psy­chi­atric unit, and the guilt of that will haunt me for­ever, de­spite the as­sur­ances of his med­i­cal team that there was sim­ply no other safe op­tion for Dad that day.

At that stage, there was barely a trace left of the real Séa­mus McDon­agh. The jolly, eter­nally young-at-heart Dad who was full of fun and mis­chief, and who never tired of telling my­self and my sib­lings how much he loved us.

No mem­o­ries

In the four years lead­ing to his death, Dad had been slowly, painfully slip­ping away from us and it was be­com­ing harder for us to re­mem­ber the per­son he used to be. De­men­tia had slowly sucked the life out of him, leav­ing only a husk of anger and con­fu­sion.

When his grand­chil­dren asked why Grandad was al­ways so cross, we had to ex­plain that Grandad’s brain was bro­ken and he couldn’t help it. Sadly, they have no mem­o­ries of the many hours he spent rock­ing them as ba­bies, singing to them, rolling around on the floor with them, push­ing them proudly in their prams, and telling them over and over how beau­ti­ful they were and how much he loved them.

Lit­tle by lit­tle, Dad was stripped of ev­ery bit of dig­nity and in­de­pen­dence he had – his abil­ity to com­mu­ni­cate, to man­age his fi­nances, to drive, to play golf, to make a cup of tea, to use the re­mote con­trol.

In her in­tro­duc­tion to the Na­tional De­men­tia Strat­egy pub­lished in De­cem­ber 2014, Kath­leen Lynch, then min­is­ter for pri­mary care, so­cial care (dis­abil­ties/ older peo­ple) and men­tal health, stated that a key mes­sage of the strat­egy was that “with the right sup­ports, a per­son with de­men­tia can live well, of­ten for quite a long time”.

Sadly, for our Dad, like the vast ma­jor­ity

Séa­mus McDon­agh with his grand­daugh­ters Lucy (right) and Kiana (left). Left: Sea­mus on his grand­daugh­ter Lucy’s com­mu­nion Day in May 2016 with his daugh­ter Michelle of peo­ple with de­men­tia in Ire­land, the “right sup­ports” do not ex­ist. The hard­est part of Dad’s ill­ness for us as a fam­ily was the lack of sup­port to help care for him at home.

Wi­d­owed at the age of 57, he lived in his own home in Knock­nacarra, Co Gal­way, with my brother and. at a later stage, my brother’s new wife. He was di­ag­nosed with vas­cu­lar de­men­tia in 2013. The de­te­ri­o­ra­tion in his con­di­tion was slow at the start, but in the last cou­ple of years, it be­gan to speed up.

It didn’t help that I lived in Cork and my sis­ter lived in Dublin with our young fam­i­lies, in con­stant dread of the phone calls from our brother telling us of Dad’s lat­est cri­sis.

As Dad spent long hours alone at home while my brother was at work, we had ap­plied for home help hours, which af­ter a de­lay of over a year, was re­fused. I rang a lo­cal city coun­cil­lor who hap­pened to know Dad from the golf club and lo and be­hold, a week later, we got a let­ter telling us Dad had been granted nine hours home help a week.

Dad was be­ing looked af­ter by the Later Life Psy­chi­a­try Team at Univer­sity Hospi­tal Gal­way, led by con­sul­tant psy­chi­a­trist Dr Karena Mee­han. While she and her team al­ways went over and above in car­ing for Dad with very lim­ited re­sources, at the end of the day we felt very much alone and iso­lated in bat­tling his de­men­tia.

What we needed was a sin­gle point of con­tact at the end of a phone line 24/7 to pro­vide us with prac­ti­cal sup­port and ad­vice. We re­ceived no sup­port for Dad from the lo­cal pub­lic health nurse de­spite re­peated calls and mes­sages.

Two weeks be­fore Dad’s ad­mis­sion to hospi­tal, he had been stay­ing with me in Cork, mainly to give my brother a break from the stress of liv­ing with Dad’s in­creas­ingly chal­leng­ing be­hav­iour as his de­men­tia ad­vanced.

He woke up one morn­ing in my house with no idea where he was, or who I and my fam­ily were. At this point, it was clear that Dad would need full-time care go­ing for­ward and could no longer be left alone for any pe­riod of time. Dur­ing the course of the fol­low­ing week, he be­came in­creas­ingly an­gry and ag­gres­sive.

We looked at the pos­si­bil­ity of get­ting a carer to sit with Dad ev­ery day while my brother was in work, but his be­hav­iour was rapidly be­com­ing more chal­leng­ing. The later life team at UHG agreed that the only op­tion open to us at this point for Dad was a nurs­ing home, some­thing he would have dreaded his whole life.

When I tried to break this news to Dad on the morn­ing of his ad­mis­sion, he be­came ver­bally ag­gres­sive and when two nurses from his team came to the house, he started to show signs of phys­i­cal ag­gres­sion. Their ad­vice was that the only safe op­tion for Dad at that time was ad­mis­sion to the acute psy­chi­atric unit at GUH.

Af­ter his ad­mis­sion and as his con­di­tion con­tin­ued to de­te­ri­o­rate, Dad’s team ex­plained that his only op­tion now was ad­mis­sion to a spe­cialised Alzheimer’s nurs­ing home in Athenry. Ev­ery­thing was hap­pen­ing so quickly. Our hope for a nurs­ing home close to his own home and beloved golf club in a fa­mil­iar neigh­bour­hood were dashed.

Then on the morn­ing of Mon­day, Novem­ber 13th, we were called to a fam­ily meeting by Dad’s team at the unit. He re­mained ex­tremely agi­tated and had been re­fus­ing med­i­ca­tion, food and drink. We were in­formed that he was very un­well and the team were se­ri­ously con­cerned about him.

Dad was dy­ing.

Prom­ise

My sis­ter, brother and I sat in shock. How could this have hap­pened? Dad had walked into the unit weeks ear­lier, an ag­ile 72-year-old. We had never even con­sid­ered the fact that he wouldn’t walk out again, al­beit to a nurs­ing home. A week later, Dad was gone. It all hap­pened so quickly in the end. He was cared for as well as he could pos­si­bly have been cared for in an acute psy­chi­atric unit which is not geared for pal­lia­tive care.

We had promised Dad that he would not die in hospi­tal, and we man­aged to keep this prom­ise with min­utes to spare. He took his last breath less than five min­utes later with his fam­ily at his side in his own home.

Un­til the fi­nal hour of his life, Dad was dis­tressed and agi­tated. His was not a peace­ful death, the very op­po­site sadly. We will for­ever be haunted by the last weeks, days and hours of our fa­ther’s life.

Dad had been slowly, painfully slip­ping away from us and it was be­com­ing harder for us to re­mem­ber the per­son he used to be

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