August 16, 2018
Akhil seems to be trying to separate himself from this life. It has gotten to the point where Akhil rarely gets in his wheelchair; the pressure sores forcing him to prefer the comfort and varying positions of his bed. Over the past couple of weeks, he has not wanted to engage with us. The girls and I usually fill Akhil in on the happenings in our day trying to insert humor wherever we can so we can laugh together. We want Akhil to feel part of our lives and part of the world even though he is confined to his bedroom. We have noticed that sometimes when we start talking Akhil closes his eyes. It wasn’t until recently that I began realizing that perhaps he was trying to tune us out but he had no way to say, “Stop talking.” I began asking if he wanted Jordan to tell him about her day or if he wanted to hear about mine and he repeatedly responded “No” by tightly closing his eyes. Initially, I was hurt but I realized how hard it must be for him to hear about all the exciting things going on in our lives and how painful to acknowledge that, with or without him, life goes on.
I had a difficult conversation with Akhil today. I think I initiated it because I was feeling a little frustrated that he wasn’t interested in life anymore and yet I was still giving up mine for his. I asked him if he was getting any joy out of life anymore and he closed his eyes to indicate, “No”. I took a deep breath and thought for a moment. I asked, “Do you want us to share about our days with you?” Again, he indicated, “No”. I proceeded to ask, “Do you want me to have people visit you?” and again he responded, “No”. I asked Akhil if he loves me and he responded with open eyes to indicate “yes”. I paused to collect my courage because what I was about to say was pretty direct and possibly hurtful but I needed to say it. “You know that I would do anything for you to keep you here if you want to be here and if you are getting joy out of anything in life. But”, I continued with the big eraser (Akhil would always tell me when I said “but” it erased everything I had just said), “if you are not getting any joy out of life, I am asking, if you really love me, to let me go. Let me get on with my life.” I paused and watched the tears well up in his eyes. Soon we were both crying. I hugged him and gently stroked his head. I have no comprehension of what he could have been feeling at that moment. I can only speculate that after years of believing for his healing, we were both conceding that the healing we had been promised would be a heavenly, spiritual healing rather than a physical earthly healing. It was time to stop holding on to this world and begin embracing the idea of moving on to the next.
Throughout Akhil’s illness, he contemplated not receiving nutrition (formula through his feeding tube) and I was always the one to remind him of all the things in life that brought him joy that he would be missing out on. I would encourage him to think carefully about his decision at those times. I hated the idea of him choosing to die when there was still life to be lived and enjoyed. According to what he said today, there was no more joy for him. I asked him if he was ready to stop eating and drinking (receiving formula and water through his feeding tube) and he opened his eyes to indicate “yes”. We sat in silence for a few moments each of us contemplating what was about to happen. He raised his eyebrows a couple of times letting me know he wanted to spell something. I went through the letter chart so he could indicate what he was spelling. “F-O-R-M-…” “Formula?”, I asked incredulously? He indicated “yes”. I asked him if he meant he wanted formula and he indicated he did. I said, “We just talked about this, didn’t we?” wanting to be sure I understood, and he indicated, “yes”. I went and got a can of formula from the closet. I gave it to him wondering if he wanted to feel that satisfaction of a full stomach one last time.
August 17, 2018
Today is my birthday. It is just another day. When I got out of bed, Akhil was awake so I asked him if he wanted formula. “No” he closed his eyes. I asked him if he wanted me to tell Rose, his caregiver that day, that he did not want formula and he opened his eyes to let me know that, yes, he did. In a way, I feel like that was his ultimate birthday gift to me. He is willing to sacrifice his life for mine.
August 31, 2018
It has been fourteen days since Akhil decided to stop receiving formula and water through his feeding tube. We have asked him periodically to confirm that he still did not want to receive nutrition. On one occasion, he asked me for more water. After one syringe, about two ounces, I asked if he wanted more and he responded, “no”. He is just skin and bones. I can count his ribs. The arms that were once muscular and could hold me are as delicate as sparrow’s wings. The skin hangs on legs that used to carry Akhil on endless adventures.
The hospice nurse came for her regular visit and said she thinks Akhil is dying. More so than usual. (Sorry, humor is definitely the coping mechanism in our house.) We removed his AVAP mask to see if he was breathing on his own. It took about a minute for him to breathe. Even then, his breaths were almost imperceptible; his chest and stomach did not move. The only motion was a slight flaring of his nostrils. The nurse could not find a pulse or get a blood pressure.
I called all the girls. Ashley and Jordan are on their way home. Corinne was able to video call us and tell Akhil she loves him.
Even though I knew this was coming, I feel like I am plummeting into a black hole – a place so dense that nothing escapes it. My chest tightens and tears well up in my eyes. I wonder if Akhil feels the same way, like he is slipping into an abyss. That is an interesting picture - the two of us falling backwards into opposing black holes reaching out to one another unable to stay connected as we slide in opposite directions. Undoubtedly, we both are feeling a bit of fear as we realize our separation is about to be complete; each of us acknowledging that we are about to enter the unknown.