In the case of most illnesses, their effect on the person diagnosed with it, are spoken about to a great deal. An often ignored aspect is that of care-giving. This need not necessarily be restricted to mental illness, but even in the case of a physical illness. It goes without saying that care-givers who would usually constitute the spouse. Immediate family or friends lay a valuable platform for the recovery and wholesome living process. In doing so, the care-givers and their emotions are often stereotyped – in burnouts, inability to manage relationships, juggling work schedules, lack of me-time etc.
The role of being a primary caregiver was not something which Meera or I (Srinivasan, her husband) anticipated, it definitely is not something that even the pessimists would plan for. As you would have read, in 2017 when she was first diagnosed with BPAD (https://www.thewholesomeliving.in/post/some-days-are-diamonds-some-days-are-stones), this was a bolt from nowhere that came and hit us. However, over the last few years, we have learnt lessons which have held us in good stead. So, when Meera and I discussed what we could cover as part of the post, one of the first points that did come to our mind was that we need to break the stereotypes. As someone who has been right there, through the recovery and convalescence process, we thought it would help to throw actual light on the various aspects of caregiving. So here are my few bits, and I hope to help a few along the way.
The Initial Adjustment
Like I mentioned earlier, nobody can plan to be a caregiver. In my opinion: a) it is impossible to imagine your loved one(s) in a predicament; and b) if you do choose the morose option of planning, the possibilities are endless. So when the first manic episode struck in 2017, I was illiterate. I had no clue what was happening. All that I understood was I need to lend a shoulder and hang in there because whatever was happening, is clearly not normal.
Things change, there is absolutely no masking that. How we react to the change has a massive impact on how we handle the days, months or years that follow. In my case, it was a simple breakdown of the scenario itself. Here’s a person who I love, and she is going through a tough patch. I need to hang in there, and help her hang in there. That acceptance is critical and can alleviate a lot of issues that can come up later. The acceptance, however, does not come easily. Especially because it is about putting your needs in second place, and prioritising the need of the person that you are caring for. For example, in my case, one of the aspects was reassessing my career choices, so that I could spend more time with Meera – we basically prioritised her recovery. In our opinion, focusing on her recovery would help us fixing everything else easily at a later point of time.
I had a job with the All India Football Federation, rolling out a grassroots football project in India. The job involved a lot of travel, which would mean Meera would be alone for phases. Further, even attending to a day job, leaving Meera alone at home was having negative effects on her health. At this juncture, we took the conscious call of putting her health first, and I decided to quit the role. While the Federation was extremely supportive and tried to accommodate me in different ways, in hindsight we took the right call. We found a brighter spot soon enough, where along with Meera and a couple of friends, I was able to start our own practice focussing on sports. The practice also gave Meera, the chance to get back to working slowly, yet steadily.
Prior to this episode, I was the everyday Joe, the one carrying the common misconceptions, throwing misplaced words and phrases and having absolutely no idea of what a mental illness actually is. The biggest eye opener here is the psychoeducation. You obviously cannot master the subject, but there are a few basic do’s and don’ts that everyone needs to be aware of. These include being patient, believing in your psychiatrist and the medicines that they prescribe, not get frustrated when things do not go your way, sympathise and most importantly let the other person know that you are available to help them.
Patience
There are no shortcuts available. The key to a successful recovery is patience and more patience. While medicines and therapy play their role, the journey to recovery is a long road. In our experience, we have had a lot of false starts or hit unexpected road blocks. It is very easy to get frustrated, especially when you believe that you have found a solution to deal with the issues that come up. However, the key is patience. We need to understand and help people around us understand that everything takes its time but eventually there is light at the end of the tunnel. For example, you might have found a practice that works 9 out of 10 times, to deal with a case of anxiety. When it doesn’t work on the 10th occasion, it is important that they we remain patient. It is always easier said than done, but it has to be done.
Psycho-Education
Just hanging in there would have helped no one, or maybe can help too. In our case, it was clear that both of us had the dogged determination to slowly but steadily move out of where we were. Psychoeducation was, and still continues to be vital. While we moved multiple cities in this period, we were lucky with finding doctors and therapists who helped us improve at every stage. Providing reading material, suggesting books or generally having a free-wheeling conversation and guiding us through what can be done and how things should be done. This could be something as simple as “Oh, you can have an occasional drink, it’s not like you are going to pick up a bottle and guzzle it down right!” to helping us understand how different psychotherapy techniques work, and patiently at that.
The education doesn’t end with the academic material or professional help. I would have to give a huge shout-out to the Peer Support Group managed by Mr. Vijay Nallawala. For being the Twitter addict, I am always thankful for having stumbled upon Bipolar India and the PSG. There is probably no better education, than learning from the lived experiences of others going through the same situations. And the PSG has helped us take a lot of tips, and imbibe into our daily lives which makes management easier. While Meera does not actively follow the chat on the PSG, because some topics could act as a trigger, I try my best to keep track of the discussions myself, and contribute where possible. The PSG is essentially a two-way street, for all the help that we receive, it is only fair that we help others who are in a different stage of the same journey.
Self-Care
The most common misconception of care-giving is you have no time for yourself. A big no to that! Yes, you might not be able to do everything that you used to do earlier. There are going to be times when you can get frustrated. You are dealing with a person who knows you, they know your likes and dislikes. In my case, playing football used to be a big stress buster. While initially, I had to cancel a couple of games here and there, I still managed to play 3-times a week for 2 hours each day. Considering this was early in the morning, it helped that I was back by the time the day essentially started.
Friends and family cannot be ignored when it comes to this. While you are the primary caregiver, you have a circle beyond you, who want to unconditionally support you as well, they probably just don't know how. In our case, we have been blessed with friends and family who have travelled across borders to be with us whenever we needed them. You need to identify this ‘ring’ and not feel ashamed or shy to call upon them to give you a hand whenever. You will be surprised to see the distances that people will go for you.
The other very common assumption is that of being one step away from a burnout. Simple self care can go a long way in avoiding this. All it probably needs is one conversation with friends or family, you always feel a lot lighter and ready to go further rounds in the fight. I have also been recommended therapy by both family and friends. Therapy definitely helps us correct the smaller mistakes that we make. I had my first conversation with a therapist who has asked me to focus on having a more predictable schedule. For the longest time, I did not have a schedule, and managed work as and when it came up. This was pointed out specifically, and the benefits of having a fixed schedule works wonders. While on one hand it gives a lot of structure to our own day.
To sum it up, caregiving is not easy. You have the dual responsibility of being there and guiding the person from crisis, and at the same time educate and equip yourself to help the former happen. There are plans that need to be set aside, postponed or like in my case fast-tracked. While these are all things that can be adjusted and recalibrated later on, the larger goal remains in being there and helping your loved one to conquer the illness that they are faced with it. Once that determination is in place, the rest works out. The key is of course is to be patient, stick to a routine and be able to convey the message that you are in the journey together and that the other person is neither inadequate nor a burden on you.
Srinivasan Saimani