The last mile is the hard­est

It’s painful to watch alzheimer’s suck the life out of its vic­tims as it takes them down a long, dark road of no re­turn.

The Star Malaysia - Star2 - - LIVING - By MARY EU

WE live in an age of un­pre­dictabil­ity, yet some things come with cer­tainty – death, suf­fer­ing and age­ing. My mother-in-law was born in 1919 and she cel­e­brated her 90th birth­day with pomp and ex­hil­a­ra­tion. Ev­ery­one ad­mired her strength and the way she walked up­right and greeted the guests warmly. She daz­zled us with her clear think­ing, con­fi­dent crit­i­cal judge­ments and her gen­tle smile. She had verve. Noth­ing fazed her – that is, un­til Alzheimer’s disease robbed her of her dig­nity, sen­si­bil­ity and mo­bil­ity. She is now re­duced to a spec­tre of her for­mer self.

Ma, as I call her, was a spunky and sen­si­ble lady in all her 90 years. Af­ter her 90th birth­day, her health started to go down­hill fast. She be­gan to hal­lu­ci­nate and suf­fer psy­chotic episodes. It was eerie to see her talk­ing to imag­i­nary be­ings in the liv­ing room. She even waved to un­seen be­ings. A geri­a­tri­cian con­firmed that Ma was in the clutches of the dreaded disease af­ter con­duct­ing a slew of tests on her.

As 2011 pro­gressed, she en­tered a new phase. Ma oc­ca­sion­ally walked back­wards and missed the chair she wanted to sit on. Still, she re­fused to use a walker or a wheel­chair. Some­times she stood in the mid­dle of a room, disori­ented and con­fused. There was a far­away look in her eyes which once sparkled with wit and in­tel­li­gence. She wan­dered about in the dark at night. She had delu­sions about fam­ily mem­bers tak­ing her money. Her nerves were in shreds. We had to en­gage a maid to look af­ter her and closed the door to the kitchen for safety rea­sons.

By 2012, she wa­vered be­tween lapses of clar­ity and obliv­ion. She was los­ing her per­son­al­ity by the day. The de­bil­i­tat­ing disease ad­dled her brain. She re­treated into the com­fort and se­cu­rity of her re­clin­ing chair. She had mo­ments of lu­cid­ity but they were oc­cur­ring fur­ther and fur­ther apart. She was the pared-down ver­sion of the mother we had known. A sub­se­quent stroke left her vir­tu­ally in a cata­tonic state. It was the be­gin­ning of a long good­bye.

Now she needs to be fed and cleaned. She does not know day from night. She has no bowel con­trol and wears a di­a­per. Her eyes open oc­ca­sion­ally but they are dull and glazed. I look at her age-tat­tered frame sadly and miss the times when she was healthy and alert.

Ma was the stal­wart in the fam­ily be­fore Alzheimer’s disease con­sumed her. She raised 12 chil­dren, three of whom have passed away. Her late hus­band worked out­sta­tion, leav­ing her to take care of the brood. When money was short, she babysat for oth­ers and took in clothes to wash. Ma was never the kind to panic eas­ily and was fiercely in­de­pen­dent.

She had al­ways taken care of her ap­pear­ance and had a cup­board full of clothes. Now she has only four sets of clothes spe­cially sewn to re­sem­ble the over­all that one wears be­fore an op­er­a­tion.

She loved en­ter­tain­ing guests and was a de­light­ful host­ess who made sure her guests stayed for lunch or din­ner. How­ever, in her present state, she is obliv­i­ous to all her visi­tors.

I watch her breathe through her mouth which is al­ways agape. Her eyes are closed and her right hand is at an odd an­gle af­ter the stroke. The out­line of her skeleton is etched clearly be­neath her pa­pery skin. Since the be­gin­ning of 2013, her life has been re­duced to this gross rou­tine – eat, sleep, pee and poo. Thank­fully, we have an em­pa­thetic maid who is pa­tient and even jokes about Ma’s prodi­gious bowel move­ments. She even sings In­done­sian songs to Ma, just like lulling a babe to sleep.

When Ma has con­sti­pa­tion, the skin around her eyes be­comes dark. So we make sure she has enough fi­bre in her diet by feed­ing her mashed bananas. She used to have a full head of hair. Now her sec­ond son trims her hair very short for hy­giene rea­sons. Her fourth son would help the maid carry Ma to the bath­room for her weekly bath. My hus­band, her sev­enth son, uses a sturdy nail clip­per to trim her nails which have be­come thick and ridged.

She was an ac­tive lady right up to her late 80s. She could climb the steep flight of steps to church, un­aided and with nary a pant. She sewed py­ja­mas for her grand­chil­dren from left­over cot­ton ma­te­ri­als.

She took care of me dur­ing my con­fine­ment. Be­ing a good cook, her dishes were de­lec­ta­ble and mem­o­rable. I was al­ways amazed at how soiled nap­pies be­come pristinely white and clean af­ter she had washed them. She used to put a lot of tal­cum pow­der on my chil­dren’s faces af­ter she had bathed them when they were young.

Now the maid does the same to her and she is not in a po­si­tion to com­ment. She used to be able to grip my hand when I held hers but alas, she can­not even do that any­more. All signs of com­mu­ni­ca­tion are be­ing cut off and hi­jacked by this in­sid­i­ous disease. What the drugs did was work on the symp­toms and not on the disease it­self.

My fam­ily and I of­ten gather around her. My hus­band would re­gale her with the ma­jor hap­pen­ings in our lives and joke with her. She re­mains silent safe for the heav­ing of her chest. When she gives the oc­ca­sional snort, hubby puts words in her mouth, such as, “So you know and you agree, ah?”

On solemn days when the grim re­al­ity of Ma’s pa­thetic state hits hard, all we could do is pray. Then we sing her favourite hymn to her – Je­sus, Keep Me Near The Cross.

Look­ing at Ma now, I won­der what goes on in her tan­gled mind. Her strength is dis­si­pat­ing and she could hardly move the clap­pers we put in her hand.

As Ma qui­etly ap­proaches the end of her life, I feel priv­i­leged to be her sev­enth daugh­ter-in-law; loved un­con­di­tion­ally by her, like her own daugh­ter.

I miss her call­ing my name. I mourn for it. Life is strange – how we can mourn for a loved one who is still with us. I guess we are mourn­ing for the huge part of her that has gone miss­ing. What’s left of her is all we have.

Dearly loved: a 2012 file photo of Madam Tek Moi.

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