One of my earliest, traumatic memories is how my parents dropped me off at my aunt’s place to visit a hospital or something like that, when I was four years old, for a couple of hours. I remember bawling and never quite stopping.
My mother used to be afraid of taking me out for sleepovers because it was a known fact that I was my papa’s girl and wouldn’t live without him. I would wail for him in the middle of the night.
My relatives wouldn’t understand this. They used to joke that my mother better start making a statue of my father so I could take it with me when I eventually married and left for my husband’s home.
I was so smart I never got married. The few times I left India which might total to all of eight-nine months in my entire life, I was miserably homesick for my parents, my bed, and my room in that order, no matter how comfortable or exciting my life was.
So. This is life’s way of outsmarting me now.
On Friday, I put my father in a care centre that’s do-able on the pocket (I will still be perpetually poor now), led by people who understand ageing and the progressive nature of dementia. When we visited the place that houses only forty inmates, I was happy about how clean, spacious, and well-staffed it was, including a doctor and geriatric physiotherapist in-house. It was not posh, nor is it a medical facility. But those are the exact type of places I cannot afford. Importantly, it is only between eight to eleven kilometres from my house. I can be there within an hour in case of an emergency.
My mother and I paid a token advance to block the only remaining bed in the facility. But we were far from certain of our decision. The morning of Friday, my mother cried to me in the morning saying we won’t do this. I had spent most of Thursday bawling like a child, first, to my sister in Melbourne, and, then, to my brother in DC. My mother felt that she couldn’t stand to see me so broken. She herself felt she couldn’t see her husband committed at a facility. It was too much.
How can something that is right, no, inevitable, the only remaining option, feel so bloody wrong?
I woke up determined to be practical. I came downstairs and one look at my father broke me down again.
In the throes of our confusion, we felt we could manage his ill temper, his confusion, his lack of communication with us, everything.
Yet, thinking that made my heart tremble with fear and stress for my mother who bore the brunt of his bad behaviour.
In two months, my already petite mother lost two kgs. What right did I have to expect her to serve him as he got worse?
But more selfishly (and isn’t that always the bigger concern), what would I do if she also fell ill?
The stress and distress was so acute that I went back to bed and slept. It has never happened to me before. I couldn’t keep my eyes open. My body just shut down. I couldn’t think or cry any more.
I woke up in time for lunch and went downstairs still unsure of what I would do. My mother told me how my father looked dull and subdued and was in bed. He never does that, even when ill. Concerned, I quickly rushed to his room to check on him. He had no fever and no visible inflammation – nothing to worry us. My mom also told me how he started demanding food at eleven am and got angry and snappish when my mom told him that it wasn’t lunch time yet, and that she’d make him tea instead.
She looked so worried and miserable that I felt cruel for indulging in my sentimentality. Neither of us are equipped to live in a high stress environment. It’s a sure shot way of inviting debilitating joint pain and resultant issues for both of us. Two days of crying and stress and I could feel how tight my muscles were and how much my joints hurt. What was I doing thinking about right and wrong as if I could afford such luxurious thoughts!
In that second, I decided that we would put him in the centre and see. It might not be permanent but my mother needed to live a normal, stress-free life for a few days at least.
And as always, I would have to be the one to decide things for my household. I couldn’t expect my mother to parent me. She was in too much pain to be rational or decisive.
Post lunch, as I was packing his toiletries into a bag, he came up to me and said, “Shall I get ready?”
I was shocked. He usually has very little awareness of what’s going on in the house. The past two months, he shows great reluctance to dress up and go out of the house. I usually have to beg, cajole, outright scream at him (which leads to more fighting and stress) to get him to change from his house clothes.
“Where do you want to go?” I asked him instead.
“I don’t know. You want to take me to that place, right? I will go get ready,” he said.
I swallowed the sob and told him to get dressed.
As he dressed, I held his hands, caressed his back, put on his buttons for him and said, “We are going to a treatment facility again. They will look after you well. Ask them for whatever you might need. Tell them if you get hungry. I have paid for everything. So don’t be shy to ask. Talk to people. Listen to them. Have a good break. Once the treatment is done, I will bring you back home.”
“What about my clothes?”
“I have packed them. You won’t need anything. If you miss something, tell me, I will get it for you. I will call you everyday. Be good. Don’t get angry and get a good name for yourself and make friends like you did at the other centre.”
I managed to say this much cheerfully enough and then ran upstairs to my room to dry heave and sob. I felt a panic attack coming on and quickly swallowed my emergency pills to not succumb to the panic attack. I needed to have my wits around me so I could act cheerful and confident. My papa caught vibes easily or so I believe.
We enrolled him at the centre. He looked happy.
As soon as he was out of sight, and I was filling out the forms, I broke down completely. The doctor assured me that I was doing the right thing and I must not think of what other people might say.
I looked at her. It was incomprehensible what she was saying. Then it hit me. I sobbed out how it wasn’t even something I cared about – other people. What the fuck does anyone know or care about my life or my family or my choices?
My heart broke because I was putting my father in a facility knowing how possessive I am of my parents. In all my life, I have felt such possessiveness only for my parents, my sister in Melbourne, and my best friend in Germany who is the love of my life. I am not even possessive of the men I take to my bed.
I couldn’t believe that life had brought me to this point where I would no longer live with my papa and mama together.
I managed to compose myself and we went up to his room. He had made friends with his roommate and just when I thought he knew what was going on, he blabbered nonsense about injections and his roommate being an old neighbour. The doctor handled him with grace and tact and told him to say bye to us. His roommate, a stroke patient with a sound mind, assured us that he would look out for my dad and that we were not to worry, it was a good facility; we were to be strong.
That’s when my father piped up, “My wife and my daughter are very strong women. They are stronger than me. They can handle anything.”
I could feel my knees tremble. Keeping a cheerful face and saying bye to him is the hardest thing I have ever done in my life so far.
It’s been two days. On the phone, he sounds chirpy, excited, and cheerful. The doctor assured me he is eating well and sleeping well too. He has made friends. He watches TV. He explores the house. He is happy. This time he hasn’t asked me to bring him back home. He says he likes the food. He sounds upbeat.
My mother and I are so relieved we don’t know what to do with ourselves. We are trying to get used to the lack of stress. But there’s a gaping hollow instead. Guilt and sorrow and a very real miss eats at us, and threatens to fill that void. If we allow it, it can completely devastate us.
We try not to but we keep talking about him. Now that he’s away, and we no longer feel fear or stress, we remember all the happy times we had together as a family. We remember how wonderful a father and husband he was, before the tumour, before the dementia. If I feel beaten but invincible today, it’s because he brought me up that way. Did he always know that I would be making one difficult decision after another all through my life?
We are desperate to see him. But the centre asked us not to visit for the first fifteen days till he gets used to the place. Even today, my mother said, “Forget the money. Let’s just go and get him back. My stomach hurts when I think of him. I miss him.”
I want to do that more than anything in the world, but I also know that it’s not a solution. Not yet. I cry my eyes out and still pretend to be an iron woman determined to stick by what is currently best for my family. “We’ll bring him home often. We’ll take him out often. It will get better. It is a good thing for all of us.” I say this repeatedly to her and to myself. “And if it’s impossible, we’ll get him back home. He is alive. He is healthy. He sounds happy. Maybe he missed socialising. Maybe he missed resting. At home, he always tried to do chores refusing to rest. If we asked him to rest, you know how angry he got. Let’s wait and watch.” I say this knowing it to be true.
He doesn’t ask to come home nor does he want me to pick him up. In the earlier centre where he was for a week, everyday he wanted to come back home. It broke my heart. Now that he doesn’t ask, it breaks my heart still.
Sometimes I feel that he has moments of lucidity where he is still the papa who loved and respected me and my mom more than anyone in this world. And that man knows and recognises how he must not cause us distress. Trying to make peace with being away from us and this home which is so beloved to him is his way of being good to us still. This is his love for us.
But mostly, his conversations don’t make sense at all. He wears my eye-mask as a face-mask and flies into a rage when I tell him it’s an eye-mask. He doesn’t remember what he ate or when. He makes up stories.
So, does he even know the import of our actions much less his words and responses?But what was that line about strength spoken with such love and pride? And the timing of it!
Only the universe knows.
The universe really has a wicked, fucked-up sense of humour.
P.S. Thank you to all the readers who have been reaching out and sharing their own tales of grief and dealing with dementia of loved ones. I am so sorry that we’ve had to suffer this.
I know my story is unfortunately very common. I am grateful that my words help clarify things for you and also bring you comfort and ease. That, really, is why I write. So thank you, for taking the time to share with me. Thank you for your generosity.
At the end of the day, we do what we can. This is the only lesson. People who truly love you and care for you, will not judge you. So always do you. Love yourself. Be kind to yourself and others.
Much love, hugs, and prayers for all of you. Blessed be.