The most pressing burden all caregivers carry is to meet peoples’ needs, not just by persevering through its demands, but by doing so day in, day out. Whether it’s caring for the elderly, caring for someone with special needs, or caring for someone who’s experienced major trauma or illness, the physical, emotional and relational demands of caregiving take their toll over time. While there are several strategies to lighten your burden, some are quicker to apply than others.—(American Naturopath, Nathan Mcveigh)
The old adage that suggests in the cycle of life a man is "once a man and twice a child", may seem appropriate if one considers only the gentleness with which both a baby and an elderly must be handled. But caregivers and specialist debate this, as they say, it is quite different simply because babies are developing and progressing while the elderly at most are degenerating.
Roberta Rose-Collins, founder of Yes She Can, a health-focused women’s empowerment NGO, learned this all too well when she took on the role of caregiver to her bedridden aunt-in-law—managing from the help, to her meals, to therapy among other daily commitments, all while working full time.
Though only the most superb care was administered to her aunt-in-law, Rose-Collins told the Sunday Guardian it was not easy especially because her aunt-in-law was angry about being confined to a bed and often times she would get depressed and despondent, even refusing therapy in some instances, other times just unwilling to cooperate.
"There were times that people (hired caregivers) would just stop working because they could not deal with her aggression and I had to take time from work to care for her.
"On days that the therapist was coming to the house, I had to take time from work because she would not listen to the staff," Rose-Collins explains.
"She was the strong one in the family. Everyone came to her so lying there was not pleasant to her, to say the least. It was really difficult trying to help someone who had given up on living."
When she suffered a few strokes and could not express herself well, this posed another challenge and a different level of exhaustion for Rose-Collins as her aunt-in-law became very contentious.
"There were days that I was dressed to go out and had to sit and try to decipher what she was trying to say as she would get aggressive if she was not being understood," Rose-Collins recalls.
Apart from taking numerous days off from work over the years, whenever her aunt-in-law would 'act up' or had to be taken for dental visits, Rose-Collins also found herself taking loans at times to pay for her aunt-in-law's expenses.
Rose-Collins said while these challenges were real, and it became overwhelming and exhausting juggling her marriage, care for her son and her aunt-in-law, she could not help but become extremely emotional at times, having to watch life slip away from her aunt-in-law who was once so full of life.
"We gave her the best life we could but her quality of life was poor. Lying there...having persons take care of her every need."
Rose-Collins recalled the day her aunt-in-law died at the hospital, where she spent her final days, she previously had a 'gut feeling' that day would be the last day she would be alive.
"I just had this feeling that I should not leave as I usually would go, see the doctors then go to the office which was in Siparia.
"I stayed at her side and told her that it was ok to go. I held her hands and spoke to her. She was unable to speak but I know that she understood me. I remember feeling the life leaving her body and her taking her last breath. It is an experience that evoked mixed emotions in me because on one hand I was sad she had died but also happy she was no longer suffering," Rose-Collins says.
Asked if she felt there was the need for training even for family member on how to care for the elderly in their family who now require undivided attention, Rose-Collins said in her opinion love alone does not give anyone the ability to give proper care. And it was also important for caregivers to get a break.
"I believe that’s a major reason for the elderly being abused. It’s emotionally draining especially if it’s someone close to you," she says.
Sharing the view of Mcveigh, Rose-Collins distinguishes between caring for a baby oppose caring for the elderly. "Babies develop and grow so the changes are progressive. They learn to talk and to express themselves. With the elderly they are going down one day they can talk and the next day they can’t. One day they remember that they ate and the next day they are telling people that you are starving them."
Additionally, there is joy when a baby learns to walk Rose-Collins pointed out, but there is sadness when your loved one is no longer able to care for themselves because it means that things are getting worse.
Reiterating the toll caring for her aunt-in-law took on her, Rose-Collins says, "The truth is that I never realised how much taking of her affected me until after she died. It’s like I was holding my breath for years and not realising it."
She said the emotional exhaustion far exceeds the physical and she could not imagine how difficult it is for the family member who is not trained to deal with these specific challenges, has no one else to turn to and has to solely rely on the Government for care.
"Can you imagine having to clean someone with a catheter or give medicine via injections? And not being trained for this," Rose-Collins asks.
Geriatric hospitals, schools needed
Last weekend, the Sunday Guardian highlighted the abuse of the elderly and spoke with former director of the Division of Ageing in the Ministry of the People and Social Development, Dr Jennifer Rouse, who offered her expertise advice in reducing or eliminating the abuse of the elderly. She recommended that like the Children’s Authority established for the protection of children, T&T should consider the development of an older persons authority for the protection of the elderly.
Today she addresses the challenges faced by caregivers of the elderly. Rouse said there was need for a national public education campaign on the ageing process and issues, and retirement planning.
She believes multimedia programmes must also be ramped up to cater for the infirm and those who are housebound, to have access to exercise programmes and social engagement.
Speaking on the challenges family members face caring for the elderly, Rouse explained that it was really a 'two-fold' issue. She said firstly since family size has shrunk from the conventional extended to nuclear to the single parent, there are fewer members in the household to share the responsibility of caring for elderly parents or relatives. As a result, the working adult children (often referred to as the "sandwich generation") and the retirees who still have their aged parents alive (due to extended longevity) have to juggle their workload, income, and chores between their dependents on the one hand and the demands of their workplaces.
Secondly, the retirees are also experiencing physical decline themselves and living on fixed incomes. As a result, the situation becomes tenuous for both groups to establish a work-life balance with financial burden and emotional burn-out often the by-products.
She noted that with the ageing population growing at an accelerated rate and requiring specialised care and customer service, there needs to be the establishment of two geriatric hospitals erected in north and south Trinidad. Also, university degree programmes in gerontology and geriatric services should be established in the Caribbean region since, she revealed, this region is growing old at a faster rate than the developed countries in the north.
Additionally, she felt that scholarships in these fields should be awarded to suitable candidates, in response to the existing supply-demand dynamic in T&T's ageing population.
Asked about the existing elderly care services in T&T, Rouse said home care services, which are provided by the Government's Geriatric Adolescent Partnership Programme (GAPP), are often over-subscribed.
"GAPP, which is means-tested, trains caregivers aged 17-35-years-old to provide care for seniors. As a result of the increasing demand for the service, there is a proliferation of private agencies mushrooming...unlicensed...professing to deliver home care services for the elderly at exorbitant cost."
However, with no omnibus legislation, which provides oversight and monitoring of such unregulated agencies, and which grants authorisation for licensed officers/inspectors to enter private residences where care is meted out to the elderly occupants, Rouse said it should really be considered a disservice to the elderly.