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Caregiver's Diaries

Tuesday, June 05, 2018

Expect the unpredictable.  Caregivers learn to take each day as it comes.  As Joanne Pereira continues her special feature, Caregiver Diaries, which appeared last week, she finds that every home has a story

Compassion in caregiving

While we have a long way to go with medical insurance, what caregivers could do with is respite through support groups.  A short break for a movie, a cuppa that cheers or a kind word that spells intent.

Smruti Divate, a publisher, works late into the night. Her aging mother’s regressing condition of dementia keeps her on a watchful mode through the day. Over two decades ago, at the age of 51 her mother was diagnosed with diabetes. Post the loss of her father in 2010, her mother started watching TV serials and got engrossed in them.  Two years back, it became apparent that beneath the seemingly innocuous drift, things were not normal. Smruti’s mother was diagnosed with dementia.

She learnt to take revelations like that of her mother  saying she had updated her bank pass book.  A closer look showed that `30,000 had been withdrawn.  Gentle probing drew a blank with her mother saying that she bought undergarments with it. Realising the futility of making an adverse comment which would distress her mother she has learnt to let the situation pass.

Another incident was her mother saying “I gave her my ring.”  On being asked who she had given the diamond ring missing from her finger to, all she could explain was someone in the lift said she needed it now and would give it back later. 

Smruti’s mother was on a well-regulated routine of Random Blood Sugar (RBS) and insulin shots. However, since Smruti’s brother, Gaurav, and his wife left for work, their mother started spending the day at Smruti’s home. As the condition regressed the driver would be sent to pick her up, with Smruti’s son accompanying his grandma back and waiting with her till her brother returned.  Her husband has been very supportive, especially after seeing that she does not recognise her daughter or asks the grandchildren where she is. “I have been blessed there,” says Smruti.

“My brother and his wife also take tremendous care of her and it would not be possible without their involvement. Few people with dementia are fortunate to have this kind of care shown by their children. The support services in India are terrible. We keep her under our watch 24/7.” 

Despite Smruti and her brother inducting the caretaker for a week with the routine, her mother had to be rescued from slipping into a coma on the first day that they decided to entrust her alone. When Smruti got home at 3pm, her brother thought she knew about the emergency. He returned in time to force-feed their mother sugar due to a sharp drop. “This attendant was from a known service (that keeps popping up on your Google search) but just did not know what to do,” Smruti explains.

“My mother was a wonderful family-oriented person so there is no question of ifs and buts. I don’t know how I cope but for sure we would not like to see her deteriorate in the shabby, dismal conditions that prevail in the negligible facilities available around,” says Smruti.

It is common occurrence to have her mother lapse into a time zone when her grown-up kids were small or refer to a relative asking how her music career was faring or cry saying she wanted to return home as if she had a routine she followed years ago.  “She says she has to buy fish, or talks as if my dad had to be attended to or says she has to feed her children, or that she did not meet her mother (Smruti’s grandma).  Some days the conversation seems normal but then lapses back to her childhood,” says Smruti. “They need someone to talk to.”

Labour of love

My evergreen aunt  has a map in the cellar with pins to mark each destination that she has visited with her husband, in their hundreds of globe-trotting expeditions over the last 46 years. She has spent the last two months meticulously planning her husband's 80th birthday.  “I’m exhausted,” is all she can muster over the phone when I manage to get through to her.  Their equally young-at-heart guests at their home at Morgan Hill, California, have returned to the UK. after a memorable time together.

The last few months had been gruelling with her gradual recovery from a knee replacement surgery and its complications.  This required her to recover at home as well as at a rehabilitation facility, a distance of 80 miles from home.  On my inquiring with her husband how he was faring, never letting in on the fatigue he gently said, “It is what I want to do, spend time with her daily and look after her.”     But the exertion has taken its toll, coupled with coping with weird weather and the fury of nature that had hit San Jose. The usually effervescent, teenage-spirited  man, who normally replies to mail in a wink, has been unable to swallow even a piece of toast.  It is now my aunt's turn to nurse him as he regains his strength. More visits to the doctors, some tests later they are relieved to find he has been prescribed rest to recoup.  They refresh themselves with a short trip to a winery with friends.  My aunt manages to convince him that his birthday is a milestone that calls for a celebration.

Over the last two months she has been working herself into a systematic schedule to perfect the arrangements.  

From handcrafting the table pieces, to the colour-themed napkins in teal and lavender from their garden to fairy lights around her home in Morgan Hill, California to the logistics to coordinate the reception of her 80+ guests, she is totally into celebratory gear while adhering to her mandated physio.  The birthday on her mind eases her pains and this gets relayed to the birthday boy.

I share the content of the previous week’s Caregiver's Diaries with her and she  suggests, “You have to dwell on how to take this further, issues like: Is it worthwhile to conduct so many tests on an 85-year-old? To ease the responsibility for caregivers you may want to highlight  the necessity for support groups to give you some respite as well as the very real possibility of burn-out.”

Closer home  

I receive these emails and Facebook comments in ALL CAPS from my 75+ aunt. She has come a long way from the post cards dated over a week back that invariably began with the standard, ‘I have not heard from you. It is raining here and we all have colds…”  Her biggest concern these days is the breakdown in connectivity as she has to stay in touch.  For her immediate family that is priority as it takes away from the inexplicable dizzy spells that she does not mention in our telecon, not wanting to worry us. While she has no recollection of what happened, the tell-tale prominent bruise can’t be made light of.  A round of medical check-ups followed by an alert is relaxed after 72 hours. The family try to regroup to keep her engaged with a smart phone, drives, family visits, anything that puts past the punctuated episodes.

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