With tears hanging loosely under her lower lashes she heaved. Stretching out her back against the rather hard arm chair, she fluttered her eyes , looked to the uninspiring hospital ceiling and forced a nervous laugh.
We had been talking for ten minutes, it felt like ten hours. Sheila had been caring for her mother for three years now. Her mother had been diagnosed with end stage renal disease and she was our patient at Hekima Renal unit. She dialysed twice a day. We ran two shifts at Hekima. Morning and evening. Each lasted four hours minimum.
I was an unofficial coordinator of the said shifts. Unofficial because I’ve always had a stubborn streak that made me abhor leadership responsibilities. Let’s hope I’ve outgrown it for my own sake. Sheila asked me if we could please move her mum to a morning session as opposed to the evening one.
In my life as a nurse, I always seek to answer one of Richard Kipling’s research questions;WHY? That makes me either a very social nurse or a very slow nurse. Take your pick. Her bodily cues made me invite her to the charge nurse’s office which also doubled up as an archive for old patient’s notes. It smelt of treated and missed opportunities.
My charge nurse rarely occupied this office unless when crafting the duty rota. Sheila had lost her job three years ago after her mother fell sick. She had been working at an accounting firm which laid her off after numerous sick days. She and her tep elder brothers were single handedly brought up by their ailing mum. Her two brothers were doing well in Nairobi city.
To cut costs, they had decided that Sheila should stay at home and take care of their mother. After all, they would pay her rent and food. This is on top of Sheila’s own two children. Her partner walked out on her the moment her mum became a “burden.”
For three years now, she was her mum’s carer, a parent to her children and the coordinator of everything regarding her mum’s treatment. From sourcing for a taxi twice weekly, running to different chemists for the very expensive medications her mum was on, honouring clinic appointments, special renal food preparation and also normal food for her own family…the list was endless. She was at the end of her tether.
Life had been unbearable for a while now since her two brothers had seemingly forgotten she had no job to sustain her needs. She felt burnt out. She wanted to take a job in a local hotel where she would work evening shifts. That informed her need for a change of the dialysis timings.
“Sister do you think I’m being selfish for wanting a break?” She queried, almost pleadingly. I honestly didn’t think she was. In fact, she had given so much of herself for so long that her 32 years of age seemed to have tripled down on her.
Is it selfish to want a break from caring for those you love? Is it selfish to want to go out for a pint and a laugh with your friends and leave your sick loved one at home? Is it right? Should you do it?
These questions stem from a deep desire to be there for those that are suffering. In the African set up, the sick and/or aged in the family belong to the family. We are obliged to take care of them. This in part contributes to carer’s guilt. You feel as if you must be there 24/7 365 days of the year.
It took a lengthy chat for Sheila to admit that her life had stopped when she started living with her mum. It took courage on her side to accept that she was also as sick as her mum; just not physically. She had allowed her mum’s terminal illness to dictate how she lived her own life.
This is the dilemma most carers find themselves in. You want to give your best but you also want to live your life. You go have fun with your friends then feel guilty for being happy. It has been described as a cyclic feedback loop from hades.
Empathy is feeling with someone’s heart without becoming them. It is not synonymous to sympathy. Sympathy is when I refuse to perform incision and drainage on an abscess because I’m feeling sorry that you’ll experience pain. Empathy is when I acknowledge that you’ll hurt a beauty but go ahead to cut and drain it because we need it to heal.
Carers are called to be empathetic. No matter the blood relations, it is important to take care of yourself. You can only give from your overflow. If you’re running empty you’ll give half baked versions of your care.
This is why we cannot over emphasize the need for professional patient care attendants and home-based nursing. These individuals take care of your loved one during the times that you can’t be able to do it. Kenya is yet to fully embrace nursing homes so home based care is the cog that connects hospitals and families.
If care of the terminally ill must be provided by family members, rotation of roles is important. That way nobody suffers burn out and the burden of care is evenly distributed.
It is irresponsible and heavily selfish of some siblings to relegate the duty of care to other siblings. Just because you provide monetary needs does not mean everything is taken care of. We need you to visit and take care of the ones taking care of your loved one. Pass by and let them know you care. You want them to be well.
Take time and rejuvenate. Caring isn’t a call for misery. Fill your cup of wellness to overflow then let us drink from the saucer. That is the only way you’ll give quality as opposed to quantity. That is when caring becomes a joy as opposed to a duty to be accomplished.
We managed to play around with the shift and Sheila’s mum got a morning session. Further, we reached out to her elder brother who was perturbed that Sheila needed help this much but did not ask.
We need to develop a culture of asking for help. It is not because you’re weak or uncaring. It is because you too deserve a break to regrow your spirit. You’ll be surprised how much people would be willing to lend a hand.
In the African context, a child belongs to the community. I believe this should apply even in sickness. Religious groups, chamas, Rotary clubs, nyumba kumi and such informal and formal groups should be at the forefront to take care of the terminally ill in their membership. Service to mankind and above self does not stop with monthly contributions. It must extend to where the rubber meets the road.
Talk however, is cheap especially when everything is alright. The real test is when we are in the valley and we need someone to hold the hand of the carers. To nurse the nurses.
Where possible, carers need support groups even if it is on online platforms like WhatsApp. That is a good channel to share ideas and find common ground. That is also a great avenue to talk and be listened to by people with different yet similar challenges and how to approach them.
Perhaps having benefited from psychotherapy myself, I will always want people to form purposeful groups to help one another. If we deplete the energy of our carers , we will not have anyone to nurse the world back to health.