It’s easy to over­look the price de­men­tia pa­tients’ fam­i­lies pay

Winnipeg Free Press - - FRONT PAGE - JOEL SCHLESINGER [email protected]

More than 22,500 Man­i­to­bans have de­men­tia — ei­ther caused by Alzheimer’s dis­ease, stroke or some other neu­rode­gen­er­a­tive ill­ness. While an Alzheimer’s di­ag­no­sis may feel like the end of the world for peo­ple, they have lit­tle choice but to live as best they can with the dis­ease. That’s a key mes­sage be­hind the Alzheimer So­ci­ety of Manitoba’s theme ‘I live with de­men­tia’ for Alzheimer Aware­ness Month

THE blank ex­pres­sion of Kerri Pleskach’s fa­ther, Terry Law, of­ten melts into a warm smile when she vis­its.

His eyes sparkle with de­light at her sight — even though he may not ex­actly know who she is.

And that’s all right with Pleskach, and the rest of the fam­ily too.

What counts is the vis­its brighten his day.

“When my sis­ters and I are there, he loves to talk to us about ‘his daugh­ters’... de­spite not re­al­iz­ing that we are right there,” says the

38-year-old Beause­jour mom of two young chil­dren. “To us, it’s a sign our dad is still in there.”

Law’s fam­ily has learned to em­brace these mo­ments af­ter see­ing their fa­ther de­te­ri­o­rate rapidly over the last three years since be­ing di­ag­nosed with de­men­tia around his

65th birth­day.

Each visit to the geri­atric pro­gram at Selkirk Men­tal Health Cen­tre is an­other chance to be with their dad, a once gre­gar­i­ous man whose mind and body are grad­u­ally be­ing chipped away by a dis­ease with no cure or ef­fec­tive treat­ment.

More than 22,500 Man­i­to­bans share a sim­i­lar fate as Law. They have de­men­tia — ei­ther caused by Alzheimer’s dis­ease, stroke or some other neuro-de­gen­er­a­tive ill­ness.

While a di­ag­no­sis may feel like the end of the world, they have lit­tle choice but to live as best they can with the dis­ease. And that’s a key mes­sage be­hind the Alzheimer So­ci­ety of Manitoba’s theme ‘I live with de­men­tia’ for Alzheimer Aware­ness Month.

The cam­paign not only aims to raise aware­ness, and funds, for Alzheimer’s and other causes of de­men­tia. It also seeks to high­light that no mat­ter how much the dis­ease strips away what made peo­ple what they once were, it does not di­min­ish their hu­man­ity.

Yet it’s not only in­di­vid­u­als with the de­men­tia who are liv­ing with the dis­ease. It’s also their fam­i­lies and close friends.

“It’s es­ti­mated that for ev­ery per­son liv­ing with de­men­tia there is a min­i­mum of two in­di­vid­u­als pro­vid­ing care,” says Norma Kirkby, pro­gram di­rec­tor for the Alzheimer So­ci­ety of Manitoba.

“It’s like a peb­ble in the pond.” The per­son with de­men­tia is the peb­ble, yet the rip­ples “go far and wide” af­fect­ing many other in­di­vid­u­als, she adds.

Those in­di­vid­u­als bear­ing much of the bur­den of care of­ten see their lives change dra­mat­i­cally, fac­ing chal­lenges they never imag­ined, Kirkby says.

Chief among those is “that in­di­vid­u­als with de­men­tia are not as able, and pro­gres­sively less so, to do the things they used to do for them­selves and the fam­ily.”

And that can leave pri­mary care­giver — of­ten a spouse — think­ing for two peo­ple in­stead of one.

“An­other key chal­lenge fam­ily mem­bers re­ally find stress­ful is that as peo­ple with de­men­tia progress, they lose their abil­ity to emo­tion­ally read the needs of oth­ers,” she says.

“That makes peo­ple feel very alone and lost be­cause that per­son who was be­side them as a part­ner isn’t there any­more.”

This is of­ten re­ferred to as “am­bigu­ous loss,” Kirby says. “So care­givers fre­quently have a sense of un­met needs that arise as the dis­ease pro­gresses.”

That’s where or­ga­ni­za­tions like the Alzheimer So­ci­ety can of­ten help care­givers cope.

“We tell them that you don’t have love or like these changes, but you can gain an un­der­stand­ing and then prob­lem solve how you can work through them.”

Of course the dif­fi­culty can be that each day brings a new sense of loss be­cause de­men­tia is an un­pre­dictable and of­ten a worsening con­di­tion, Kirkby says.

In­deed the ex­pe­ri­ence of Pleskach, her sis­ters and their mother Jan has been just that.

WHAT started as for­get­ful­ness and a fal­ter­ing sense of di­rec­tion pro­gressed to pro­found dis­abil­ity for Law. “It’s very hard,” Pleskach says. “He’s now in di­a­pers and has trou­ble get­ting up and stand­ing on his own.”

Among the most dif­fi­cult changes for the fam­ily was the de­ci­sion for Law to go into care about a year ago. For some time be­fore that, Pleskach and her sis­ters had been try­ing to con­vince their mom that car­ing for him at home was no longer fea­si­ble.

The day-to-day bur­den of care — help­ing him shower, brush his teeth and get dressed — was wear­ing her down.

“Just get­ting him dressed up to go out would take 45 min­utes,” Pleskach says. “He wouldn’t want help, and then would of­ten get dis­tracted by some­thing else.”

The turn­ing point came when her mom left him at home so she could run some er­rands. When she came back, he was there, but the van and the fam­ily dog weren’t. Law — who had his driver’s li­cence taken away af­ter be­ing di­ag­nosed — had gone for a drive with the dog, parked some­where and walked home.

“He didn’t re­mem­ber do­ing it or where he went, so we had to search the town... hop­ing that no­body was hurt.”

The dog and van were found safe, but the event led their mom to agree to place their dad in respite care for a few weeks.

“She needed a break, and we told her that she’s no good to him un­less she’s healthy,” Pleskach says.

Even­tu­ally the fam­ily, with the help of a health-care team, de­ter­mined Law could not re­turn home and would re­main in long-term care. Pleskach says her mom felt tremen­dously guilty about the de­ci­sion, and still grap­ples with it to this day.

Kirkby notes guilt is com­mon. But at the Alzheimer So­ci­ety, care­givers are fre­quently re­minded they must care for them­selves too.

And that of­ten means even­tu­ally plac­ing their loved one with de­men­tia in care.

Al­though dif­fi­cult, it is also an op­por­tu­nity to re­set the re­la­tion­ship.

“What of­ten changes is the per­son who was the 24/7 care­giver — wor­ry­ing about dress­ing, toi­let­ing, bathing and all those sorts of things for the other per­son — can now get enough rest and be emo­tion­ally more present and en­er­getic when vis­it­ing.”

They can now en­joy just be­ing with their loved one: shar­ing a snack, sit­ting in the gar­den or lis­ten­ing to mu­sic to­gether.

These are now words to live by for Pleskach and her fam­ily.

“Our motto is ‘mem­o­ries mat­ter’ so ev­ery­thing now is about spend­ing qual­ity time with him,” she says. The past few years have been hard, Pleskach ad­mits.

“But in the end, we have come closer as a fam­ily.”

Kerri Peskach walks the halls at the care fa­cil­ity in Selkirk with her fa­ther Terry Law, who is a long-term care de­men­tia pa­tient.

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