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Submitted by PatientsEngage on 6 January 2016

Maya Ramachandran shares her experience as a caregiver to her parents and the learnings she drew from this.

Caregiving is soul-satisfying, meaningful, draining and frustrating all at the same time. I had been a caregiver for my father for almost 16 years. My mother took charge from the forefront and I was with her, supporting her to the best of my ability through this period. However, for the last two years of my father’s life, I took on the role of ‘primary caregiver’, as my mother transitioned to the afterlife.

A large part of my professional life has involved engagement with health related issues such as addiction, HIV/AIDS and mental health. I also provide psychological counselling services and am presently part of a “Caregivers Support Group” in Chennai. So, as you can see, caregiving and engaging with caregivers has been an ongoing saga in my life.

It is with the cumulative experience of 20 odd years that I am motivated to write this article. I have encountered several challenges in the process of caregiving, and have heard from and seen other caregivers too experience similar difficulties which are chronicled here. After all, caregiving is about ‘giving’ and one needs to keep filling oneself if one needs to continue giving over a period of time. This article speaks about challenges as well as possible ways to overcome them.

Key challenges faced by caregivers which deserve urgent attention and/or intervention are:

1. Neglect of Self: Caregivers get enmeshed with the process of caregiving and start identifying themselves wholly with their loved one (patient), oftentimes ignoring the fact that they are a separate entity with unique needs. They thus lose themselves in the cause of caregiving, not paying adequate attention, not recognising or even ignoring their needs altogether. 
Let’s take a closer look at one such example. Ragini is the youngest in the family and has remained unmarried and lives with her parents.  She works with a reputed organisation. She presently takes care of her mother who is an octogenarian. Her father passed away about 3 years ago. She is fraught with anxiety about what she would do when her mother eventually moves on. She says with tears in her eyes and voice choked, “There is no life for me after my mother”.
 
2. Isolation and Loneliness: Most caregivers are women as evidenced also by research globally. Among this group of women, many lead active professional lives as well. Therefore, this group feels compelled to spend their non-working hours with their loved one/s. This leaves little or no time for socialising. Added to this is the ‘guilt’ factor that prevents them from going out with friends, partying, taking a vacation/break. Over a period of time, this becomes a ‘way of living’ – an unhealthy pattern. Human beings are social beings and are meant to connect with other humans. Sometimes, attempts are made by their friends to encourage socialisation, but with repeated “no’s”, friends too give up, leaving caregivers to journey alone. 

3. Inability to Let Go: Sometimes, caregivers want to do everything for their loved one, without realising that it could, one day, result in emotional and physical burnout.  It was when my mother was losing her battle with cancer that I took time off from work to care for her in a focused manner (at this time, the live-in help just upped and left without as much as a warning/whisper). All my three siblings lived overseas. Apart from caring for her, I had to take care of my father who was living with dementia, take stock of their medicines, (so, my parents bedroom resembled a hospital room with lots of medicines, and mother and father lying down on two beds), arrange for doctor visits, blood tests and the like, manage the finances making sure there was enough at home for operational expenses and in the bank to tide over any emergency, manage the support staff (cook, maid, etc.) attend to phone calls as loved ones called for updates, and related affairs. 
My day would begin at 6 am and end at about 11.45 pm with hardly any time for a breather. Also, remember that all this was being done with so much emotional pain which was so draining.......pain at seeing my mother moaning and groaning in physical discomfort at times, and sleeping in a highly sedated state due to all the painkillers (that were probably killing her more than helping!).
I was functioning like this for several weeks when my husband sat me down one fine day, and, expressed deep concern about what might happen if I continued like this – concern for my health and the need to get additional nursing help urgently. His concern was met with resistance and denial – a dangerous combination, to say the least. I told him firmly, “I want to be there and do everything for her; that’s why I have taken time off from work”. His caring and gentle persistence penetrated the barriers of resistance. After some consideration, the truth of what he shared sank in. My eyes finally opened. I became aware that I had been going at full steam for several weeks. I accepted to look for nursing care and we set about the task immediately. What I am referring to here is the need/desire to be in control and take charge which is quite high among caregivers. We need to understand that when we get additional support (which is largely outsourced in today’s world), the quality of time and care that we give our loved ones skyrockets.

4. Lack of support from extended family: This is a challenge faced by most caregivers. The cohesion of an Indian family is praised to the skies. However, most caregivers will tell you that this is sadly found wanting in families with loved ones who need constant care and medical attention. The extended family jumps at the news of a happy occasion such as a betrothal, marriage, house-warming. They are willing to make innumerable visits to help buy clothes, make logistical arrangements, check out possible venues, et al. It is this same family that hesitates, stays away and makes excuses to support the caregivers of their very own family! 
These are times when the caregivers and the patient need extended family members to visit in order to lighten the gloom that might permeate such homes, offer words of support and courage. I remember, with fondness, as to how I used to look forward to my sister’s visit. She and I would sit along with my mother and talk about funny incidents or mimic someone. My mother would be in splits and my sister and I would follow suit looking at tears of happiness streaming down her cheeks. 
Sickness in a home also significantly reduces the caregiver’s mobility as their presence is needed at home. What probably creates/sustains this attitude and behaviour of extended family is the uncertainty and/or the longevity of the medical condition as well as the fear of financial involvement. The need for respite for caregivers is rarely understood and attended to!

5.  Discomfort with loss: As most of us will agree, we jump with joy when ‘good things’ happen to us and oftentimes ask the ‘Why’ question when faced with troubles. This existential dilemma stares most humans in the face and solutions/answers are not easily found and/or accepted.
Once a loved one has been diagnosed with a chronic medical condition, it does result in loss and feelings of grief truly and really creep in, both on the patient and the caregiver/s. Loss of job, finances, independence, abilities/skills, self-confidence and therefore self-esteem to name a few. 
Sometimes, family and friends are unable to come to terms with this loss, seeing this person as a helpless patient with tubes running across his/her body, his/her room smelling like a hospital,  as opposed to an earlier time when the person was a healthy, fun-loving, energetic being. The atmosphere in such a house may be bereft of energy, laughter and joy as caregivers expend most of their energy and resources in caring for their loved one. A catheter may hang down the side of the bed and a wheel chair may greet one at the front door. All this is living proof of the medical condition and the resultant losses; extended family sometimes does not want to face the truth and be a part of it. If they experience difficulty in facing this situation once a fortnight (assuming they visit once in 2 weeks), imagine the trauma of the caregivers who necessarily live in this situation day in and day out! Take a moment to think about the caregiver who needs to muster up so much courage and positivity to manage such a situation. Infrequent visits by extended family only add to this feeling of loneliness for caregivers!

Every problem has a solution and we must never stop looking for options to overcome challenges, no matter what they may be. There is no ‘one rule fits all’; rather, to each his own. You may pick and choose from the menu below and/or come up with your very own!

  • Recognise and accept that you as a caregiver have unique needs – need for space, fun, day-dreaming, hobbies, pursuing your goals and more. Start actioning these to the best of your ability in spite of the limiting situation. For example, enrol in a painting class, dance class - any hobby of your choice and indulge at least once a week!
  • Physical activity helps - both by releasing dopamine, the happy hormone, and by ensuring you get out of the house, for at least a few minutes every day.
  • Spend some time alone every day either, walking, meditating and/or praying. This is your sacred space where you reflect, introspect and rejuvenate. If possible, maintain a daily journal and jot down thoughts and feelings as they occur.
  • Recognise and accept emotions as you experience them. It is perfectly normal and natural to feel anger against your loved one, sometimes. After all, you are a human being too and will tend to feel so, when pushed to a corner. Have a good cry if it helps – that will release pent up emotions and help you to regroup.
  • Remember to laugh – as the saying goes, humour is certainly the best medicine. When my father was shifted to a private room from the ICU after a hairline fracture of the skull and resultant seizures, he would crave nicotine and demand we buy it for him. I had to tap into my most creative potential to come up with plausible excuses as to why I couldn’t buy it. We would then compare notes as a family and laugh at the lighter side of it all!
  • Connect with friends, either in person or through social media. It is important to bond with peers and indulge in age-appropriate activities. It will take your mind off the daily stresses and leave you feeling charged.
  • Recognise your limits. There is only so much that we can do for someone else, even if they be our loved one. We need to practice detachment with love. We cannot feel their pain, no matter how hard we try. And if we were consumed by their pain, we wouldn’t be of much help to them. As long as we are sure we are doing our best, we can be satisfied.
  • Put support systems in place, wherever possible that will enable you to spend quality time with your loved one. Ask for a 2-hour break when a friend or family member can sit with your loved one. Also, it takes certain responsibilities off your shoulder and that eases the situation for you.
  • Connect with other caregivers as it is only one caregiver that can understand another’s pain, frustration, trauma and offer genuine support. A community of caregivers can support and learn from one another.

I would like to end with a quote from a man I admire - Victor Frankl: “The last of the human freedoms is to choose one’s attitude in any given set of circumstances”.

Maya Ramachandran has a background in Social Work and Psychological Counselling. She had a total work experience of 21 years, largely in the Development Sector dealing with issues related to cerebral palsy, addiction, mental health counselling and HIV/AIDS. 

 

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