10 Ways To Cope As A Caregiver While Looking After A Terminally Ill Loved One

Image Courtesy: medicalxpress.com

It is not a hidden truth; when someone we love falls ill, even before a proper medical diagnosis is done by a doctor, all our mental, emotional, physical and even religious/spiritual efforts are immersed in making sure that they recover as soon as possible, The nervousness eventually progresses one step ahead while all necessary tests are carried out, and then a volcano of sorts erupts when the final diagnosis and course of treatment is shared.

In situations where a patient is diagnosed with cancer, multiple sclerosis, dementia, schizophrenia, etc, where traditional medicine is said to only assist till a certain degree of managing the illness, the entire burden then is handed over to the informal caregivers- the immediate family, who most of the times do not know how to even embrace or accept their loved one’s illness- helping the patient cope with themselves becoming secondary.

Whether it is running around to find second/third/fifth opinions, to checking for alternatives, and making sure the right diet at the right time is provided to the loved one, not only drains a person physically because they know and feel everything is important but emotionally as well, because they would want to do anything it takes to make sure the person suffering is made as comfortable as possible. In most cases, the caregiver not being from a medical or psychological background usually has no clue of how to move ahead, nor is there is any specific group or section in the hospital as yet that assists caregivers with palliative care. House-helps or assistance sometimes come with either their own tantrums or have a time or work restriction, making you or someone else in your family responsible to supervise the process, which in itself is stress filled exercise.

People who are terminally ill have complex physical and psychological needs. As a result, their caregivers sometimes experience high levels of burden, and some caregivers are unable to cope with it at any level. Sometimes, the caregivers are young children or people who are aged themselves. Stress, not just about potentially losing a loved one, or watching them deteriorate or not agree to any form assistance on any level is a by-product of this, draining the caregiver completely, to the level of burn-out- because it usually feels like nothing you do is going to help, nothing you do is enough, everything you know, feel, expect, read, understand goes wrong and in more than half of the cases, because of the mental, emotional and physical inability- lack of co-operation from the loved one, and sometimes, a complete back-lash of not doing any of the above, making you feel lost, rejected, and just not worthy enough to handle anything.

In fact, it also isn’t surprising if the loved one, out pain/frustration and sometimes just sheer habits, blame the entire problem and disease on you, making you want to run away or just stop doing what you do and give up. It is also common for all the care-givers themselves to battle depression, panic attacks, anxiety attacks, weight loss/gain out of stress, agitation in the bargain, due to not just lack of awareness, but also lack support, on an emotional, mental and physical level. It is also common for a relative to come in or call only to ask details for gossiping like how you are managing finances or giving you a lecture on why this could have happened and how YOU could have helped to prevent it if you were not focused on other aspects of your life, or maybe even tried to get married to avoid this stress, making you feel even more suffocated and helpless from within.

Why Is Palliative Care So Important, especially for the patient?

According to the World Health Organization, palliative care helps in improving the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psycho-social and spiritual. Both for the patient, and caregiver.

Palliative care not just provides possible ways of relief from pain and other distressing symptoms; since we are all familiar with the fact that what we focus on expands, including physical or psychological pain, but also helps the patient in embracing the fact birth and death are an inseparable cycle of life. Because of its very nature of integrating psychological and spiritual aspects of patient care, it offers a strong support system, to the primary caregiver in the family, helping them cope during the patients’ illness and in their own bereavement. In many cases, palliative care is also said to enhance quality of life, and also largely positively influence the course of illness, and sometimes make death, a less painful a process.

How Does a Primary Care Giver Cope?

It is NEVER easy to watch loved one wilt and cry in pain, and there is truly no shortcut for or rule book for every single person out there. Coping sometimes not only differs from cases to cases, but also if people are wanting to be open enough as care-givers to look after themselves equally because many of us have been mentally conditioned that we have to be okay with sometimes unintentional abuse, and even if we do think of taking care of ourselves or un-wind, it is being selfish or injustice to the person suffering. Also, it is not a written rule for any caregiver to be in the right mental, emotional, physical space to be able to handle immensely traumatic and draining situations, all the time. Sometimes they themselves just don’t know the best ways to cope, and that is alright.

Below are a few points of self-care for the caregiver, that may help them cope with not just theirs, but also their loved one’s condition.

  1. Draw boundaries when it comes to speaking with friends or family that make you feel worse than you already are. You do not need to share every detail and update with them, and if they are not willing to understand why you are going through what you are, stop explaining and arguing with them on it. This does not have to mean that you break relationships and severe life long bonds, but just that you are investing your mental, emotional, and spiritual energy wisely. Know that its okay to not be available all the time to everybody who calls or messages, it’s okay to take a break from social media, its okay to not reply nor explain at times.
  2. You cannot pour from an empty cup, hence, while you are running from pillar to post for the best health and nourishing foods for your loved one, you need to give yourself that first. Make sure you are eating well, trying to eat on time, and its absolutely okay to eat first- a little before you have the duty of feeding the patient. You have probably had a lot of tasks to juggle, and that requires fuel to run the car, i.e the body, hence remember to equally avoid resorting to quick-fix junk foods. Make sure you are also equally hydrated.
  3. Delegate work if possible. It is important to sit as a group or a family and get one person to lead while the others follow and do their tasks diligently. You have to trust yourself first and others for this, because if you try and do everything alone, you will not just burn out, but you may not be able to do it in the right way, for the right reasons. These are also times when families get closer, and it eventually helps the patient heal faster, or feel calmer emotionally. Fire-fighting is only going to add more stress to you, and everyone else involved.
  4. If delegation is a hypothetical situation for you, starting chunking blocks of time- allocate time for your work, your resting periods, and assistance for the patient accordingly.
  5. Reach out to a friend who you know will not judge you and your emotional roller coaster ride, nor exhaustion. Search for local support groups in your area or even a hospital, that not just make grieving easier, but also build up your confidence.
  6. Take up yoga or meditation, and spend time with yourself, quietly. This helps you balance yourself during these intensest of times. You possibly cannot run away from the challenges, and it is not the ideal thing to do either, but, these are times when you can be the most vulnerable and honest with yourself, enabling you to feel lighter, especially after you have had a cry-session of sorts, which is okay and is necessary for such situations, instead of bottling up yourself, only frustrating yourself and others in the bargain. You can also journal your journey and emotions, since it not just helps as your own personal sounding board, but keeps you motivated.
  7. Stop blaming, as difficult as it gets. Blaming maids, the doctors, yourself, your loved one, life, God, Universe, Karma, Past Life, Spirits, Boss, etc, is NOT going to help or make you feel better, no matter how long you try to do it. It is a sure shot way to keep your mind clogged, not take responsibility for your own-self and emotions, and stay stuck in the situation. Taking responsibility for yourself will not just enable you to help your loved one, but also make you more open to receiving help, externally.
  8. Be grateful. This may sound corny, but being grateful does reduce stress. Studies show that practising gratitude can make you happier, lower stress, protect you from depression, improve sleep, and boost your immune system. Be grateful for the fact that you have the ability to deal with what you are, the possible finances to treat the illness, the friends and other support systems that you have around you etc.
  9. Engage in other activities like reading a book, stepping out, calling someone one over, listening to music or even watching movies. If you are keen on religious activities, engage in them, while also willing to volunteer in some way at any of their centres.
  10. Accept the fact that you are a human being, with no super-hero or God-like powers, that you need to have EVERYTHING together, at ALL times. It’s okay not to be perfect, and it is okay to feel upset, annoyed, and even exhausted at times. People might say that you have to have it all together at all times, but spare no guilt in asking them compassionately if they are willing to share the burden with you. Accept that you can’t control everything. No matter how hard you try, you can’t control their decisions, cure diseases on their behalf, or stop the ageing process. If negative things happen despite all your efforts, remind yourself that it’s not because you didn’t try hard enough.

Believe, embrace and affirm the fact repeatedly that you are good, and worthy enough for the love, support, and care that you equally deserve.