Com­pas­sion must be at the core of any strat­egy

By 2025 there will be three times as many peo­ple liv­ing with de­men­tia than in 2015

The Hamilton Spectator - - COMMENT - Margaret Shkimba is a writer who lives in Hamil­ton. She can be reached at men­r­va­ or you can “friend” her on Face­book and fol­low her on Twit­ter (@men­r­va­sofia). MARGARET SHKIMBA

My fa­ther died from Alzheimer’s dis­ease. I thought about open­ing with a light­hearted story of one of the many in­stances when the dis­ease took hold; like how he told the same story over and over again; or how he went for a walk with the dog one day, got lost, and came back with the po­lice. For an added twist, he had never walked the dog in his life and why he chose to do so on that par­tic­u­lar day re­mained a mys­tery. But I thought I’d just say it: my fa­ther died from Alzheimer’s dis­ease.

The dis­ease didn’t make my fa­ther bel­liger­ent or an­gry, well, ex­cept for the episodes with the jacket. For the most part, he was quiet and con­fused, seem­ingly con­tent to have some­one to sit with, who would lis­ten when he spoke. It was dur­ing the early stages of the dis­ease, pre­di­ag­no­sis even, when the chal­lenges around cog­ni­tion pro­duced anger and he lashed out un­rea­son­ably against the one clos­est to him, my mother. Her ex­pe­ri­ence as a nurse work­ing with geri­atric pa­tients clued her in to the more pro­found prob­lem of which my fa­ther’s an­gry out­bursts were merely a symp­tom. She knew he wasn’t well, but that didn’t make his “los­ing it” episodes any less fright­en­ing.

We were able to keep my fa­ther at home un­til we thought he’d be safer in a care fa­cil­ity. We picked one close to my house, so I could check on him daily. He died within months. I of­ten won­der about those last months, if that was the right thing to do. His last lu­cid mo­ment came af­ter his first week in care when he asked me who was go­ing to carry him to the hole. Our eyes locked and I knew he knew me one last time. I also knew he knew it was his time. He stopped eat­ing and slowly faded away. My big­gest re­gret is that he didn’t die in his bed with his dog at his side.

As a fam­ily, we did the best we could. We kept him home un­til his needs be­came more than we were qual­i­fied to man­age. We felt he would get bet­ter care with con­stant su­per­vi­sion by trained staff. It wasn’t the best sce­nario, but it was the one we chose.

It wasn’t long af­ter my fa­ther died that there was a knock at my door. A neigh­bour from down the street was stand­ing there with an el­derly man who had a name tag on that said “Tony.” My neigh­bour said he found this man wan­der­ing and could only make out num­bers in their con­ver­sa­tion, num­bers which he thought might per­tain to my house. I said no. We called the po­lice and they came and car­ried him away in their cruiser. It turned out that he had wan­dered away from a care fa­cil­ity ear­lier in the day, a care fa­cil­ity clear across town. It was amaz­ing he walked that far, but it hap­pens all the time, from pri­vate homes and care fa­cil­i­ties.

By all ac­counts from de­mog­ra­phers and epi­demi­ol­o­gists, we are in line for a “sil­ver tsunami,” a huge wave of peo­ple, all those baby boomers, who are now aging and el­derly, who will be liv­ing with a brain dis­ease, of which Alzheimer’s is just one.

De­men­tia is a broad um­brella of brain dis­or­ders that af­fect cog­ni­tion. The chang­ing par­a­digm of cog­ni­tive func­tion and de­men­tia mean that peo­ple can live, po­ten­tially, for decades with cog­ni­tive im­pair­ment. And what is clear is that we are not pre­pared, in­di­vid­u­ally as fam­i­lies, nor col­lec­tively as a so­ci­ety to ad­dress the needs of our cog­ni­tively im­paired loved ones.

In­ter­na­tion­ally, it is es­ti­mated that by 2025, less that 10 years away, there will be three times as many peo­ple liv­ing with de­men­tia than there were in 2015. Are we pre­pared for this? How will we man­age to care for peo­ple with cog­ni­tive im­pair­ment?

The On­tario govern­ment has com­mit­ted $100 mil­lion over the next three years to de­velop an On­tario De­men­tia Strat­egy along with $20 mil­lion for respite care. That’s a lot of money to just come up with a plan, but with­out one, we will be un­pre­pared for the wave that will wash over and swamp the health care sys­tem and fam­i­lies strug­gling to cope while their loved ones de­cline.

My fam­ily was for­tu­nate, in a way. We were able to keep my fa­ther at home for as long as pos­si­ble with the help of ev­ery­one in the fam­ily. Could it have been bet­ter? Ab­so­lutely. Hope­fully, the con­sul­ta­tions and re­sult­ing rec­om­men­da­tions will con­trib­ute to a strat­egy that sat­is­fies the needs of On­tar­i­ans liv­ing with cog­ni­tive im­pair­ment and their fam­i­lies, with com­pas­sion and care at its core.

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