Words From a Caregiver in India

In this beautifully written article on caregiver care, Niti Vaidya from India shows us that caregiving for a PSP sufferer is the same the world over. it takes forgiveness, humility, patience, and kindness, and it’s OK if you run out of these things from time to time.

Caregiver Breathers,

by Niti Vaidya

Being a caregiver to your loved ones doesn’t come easy. It is tough. Very, very tough. While it keeps you on your toes most of the time, the most difficult part of being a caregiver is helplessly seeing your loved one suffer and fight through a disease that has no remedy.

My caregiving journey wasn’t any different. Seeing my father suffer was heart-breaking. It boiled up a lot of emotions – frustration, anger, guilt, fear, sadness and self-doubt. And when I look back and think of my journey as a caregiver to my dad, I realize that it was this emotional turbulence which made caregiving difficult.

Hence, I decided to note down the following points which I would like to refer as “breathers” for us caregivers. I note them down here as a reminder for you that ‘you are only human – strong and loving humans, and that it is going to be OK’.

• Frustration is OK: I say it again, feeling frustrated is OK. You had different plans in life and your love for family and responsibilities got in the way of those plans. So, while you don’t mind doing what you are doing for your loved ones, feeling frustrated sometimes is only human and it doesn’t make you a bad person. Just breathe and remind yourself that you picked caregiving over your dreams because of your love for your family.

• Keep it Simple: Your journey as a caregiver starts without any warning. One day, you are all busy with your life and next day you see yourself becoming a caregiver. It’s always sudden. Even the increase in responsibilities happen suddenly because the disease deterioration is sometimes just overnight. At least it feels like it happened overnight. Hence, being overwhelmed and trying to do your best would be your first instinct. But remind yourself you are just settling in too, just like your loved one who is suffering, and keep it simple. Make a new routine gradually by picking up the new changes in the disease and adapt

• You are not evil: There are times we get angry and react rudely. We even lash out at our suffering loved one. I know, we shouldn’t and I know you know that too. But if you happen to react that way, forgive yourself. You are not evil, just tired. Don’t beat yourself up for it. Just make sure, next time you feel angry, you calm yourself with this question: “If being a caregiver can feel like this, imagine how painful would suffering from the disease feel? How being so dependent and helpless would feel?” Trust me, it helps. Empathy triumphs anger every time!

• Find some ‘Me Time’: I know finding time for yourself amidst all the work is difficult. But try finding sometime for yourself. Maybe a spa, a dance class, or yoga. If regular outings are difficult, which can be if you have no help, then try a weekly or at least a monthly outing. Pick up the phone and speak to your friends. Take a good long warm bath. Read a book, watch a movie, or just play some good music while you are working. Remember, you need to be healthy to keep your loved one healthy. You can’t give what you don’t have, that applies to good health too!

• Talk it Out: Sometimes all that is happening around you can be overwhelming. Our loved ones deteriorating condition causes severe anxiety and makes you feel depressed. When that happens, find a vent or outlet – a good friend or a family member or maybe a support group. But do release all those feelings. Because our face speaks our mind even if we don’t, and we don’t want our suffering loved one to worry for us, and, even more importantly, worry for themselves. We need to be calm and cheerful to make them believe that it is all good in our

• You are not the hero of this story: Trust me, you might feel like one because of everything that you give up and put in just to make sure your loved one is OK. But believe me when I say that you don’t want to be one, for two reasons. Firstly, because clearly you are not. Putting someone else’s today over your tomorrow is not easy, but this is not your story, it is your suffering loved one’s You are just a side kick fighting their battle when they can’t fight for themselves. You are just the Robin to your ailing Batman. Secondly, because a hero always rescues and you aren’t going to win against PSP. The guilt that you feel because you can’t save them follows you. After my father passed away, I had a lot of my extended family members come tell me what a great job I had done, but it didn’t make me feel better. It only made me grieve more and feel extremely guilty about how I couldn’t do anything to save my father. So, believe me when I say this, you are not the hero of this PSP story, and neither should you want to be, for your own good.

• Follow your instincts: There is no right or wrong decision as a caregiver. We just need to follow our gut. Our instincts come from our love for our loved one and we would never intentionally want to do them any harm. So, trust your instincts. If there are two options, of which both seem right and wrong at the same time, pick the one that you think would be the best for giving your loved one a better quality of life while you make sure they also don’t suffer. For example, my father was a foodie, and, towards the end, the doctors insisted on a PEG. We had to pick between, the risk of aspiration or making him emotionally suffer while he deals with the other catastrophes of the disease. Both choices had their down sides. We picked the risk of aspiration making sure we did some regular suctioning and remained observant about any signs of aspiration pneumonia. Like I said before, I can’t say with certainty it was the right decision to make as he could have aspirated. But we took the risk and followed our instincts because our prime goal as his caregiving family was his quality of

• Cherish your time with them: The plus side of being a caregiver is that you get a lot of time with your loved one. Make the most of it. PSP slowly takes our loved one from us. They lose their original personality, but beneath the disease they are still our favorite person who loves us a lot. They want our love and time now more than ever. We won’t have a forever with them, so make the most of it while they still can speak to you, eat with you, laugh with you, and watch their favorite sport/movie/shows with

• Enlighten yourself: Most of us know nothing about the disease when our loved one is diagnosed with it. It’s only natural as it’s a rare neurodegenerative disease that lacks awareness. Therefore, it becomes necessary for us to read as much as we can on it. Ask lots of questions to the people who know, especially the specialist doctors. There is no shame in sounding paranoid or asking the silliest questions that prop up in our heads, it’s the only way we can gather information and prepare ourselves to make sure we keep our loved ones comfortable and healthy despite

• Be humble and love all: If anything, PSP is a great teacher. In a world which is so fast and busy rushing towards materialistic pleasures, PSP teaches us to take a step back and cherish our loved ones. It teaches us patience and humility making us acknowledge the struggles in every individual’s life. Hence, we take this lesson of life from PSP and learn to spread joy and live a graceful life with our loved

I hope this article will help you lift your spirits up on a bad caregiving day. My heart goes out to you and your family as I pray for you to have the strength and patience to survive a graceful life with PSP together as a family.