Monday, January 25, 2010

Sunil is getting set up with Hospice

The dreaded word. The word that was said when my grandmother and grandfather both died. The word that means 'death' in my mind. The place we put humans before the "big sleep." Hospice. Gross. I never thought I would have to use that word in a sentence when referencing my husband, and I'm avoiding the use of it as much as possible. We are telling sunil that he is getting home care and when his health gets to be too much at home, we will move him to a different facility. I don't want him thinking he is dieing. I want his mind to continue to fight. I want his spirit to not have that dreaded word hanging on it. He will fight as long as he thinks he has a fighting chance. And he does have a fighting chance. Miracles can happen. The doctors are not God. Only God knows when it is time to bring Sunil "home" so I will rest in that and fight every waking minute to keep my husband strong and comfortable. His life will not end lying in a hospice bed defeated. He will go fighting and knocking down as many tumor cells as possible. His bone marrow was severely damaged from the aggressive Chemotherapy and he can no longer maintain any treatment. I am turning to food and nutrition to hold off the tumor and make him stronger. It can't hurt!

Please don't say "I'm sorry for your loss" please don't say "at least he wont be in pain" no no no. Please send your "Get well wishes" and your "I'm praying non-stop wishes" PRAY PRAY PRAY. I believe in God and I believe that Jesus was his son. For those who accept him into their life and soul they will be saved by the grace of god. There are many religions in the world. Many people who believe differently than me. But I truly think that we all know in our hearts that there is a God. One giant force of goodness that we crave to know, feel and experience. For that, I am sending out a message to everyone to pray to that God.

I have hope in my heart and a little excitement for the very first time in weeks and it is because Sunil will be coming home. People fear that I will be working too hard if Sunil comes home. I want to tell them to not worry. I love Sunil and it isn't work for me. I want to make his remaining time on this earth as enjoyable and comfortable as possible. There is no place like home. Even if it is only for a couple weeks, while his memory is still here, while Sunil is still Sunil, I want him to come home. We will have someone come in 4 hours a day. That is enough to take the load off. It is more stressful for me to go to the hospital everyday, and wait for other people to help him. He will be home with Trixie. Marlon will be able to come and see him. I will be able to sleep next to him for as long as I can. That to me is worth the little added "work" that needs to be done. Please understand that I am not trying to be difficult. Just trying to love on my husband while I still can!

Hugs everyone!!

9 comments:

Becky said...

I admire your strength and love you both. I will be praying for peace and neverending hope, and that you get to love on Sunil as much as possible!!

Emma Holl Lam said...

Sunil is a lucky man. God bless you both. You are both in my thoughts and prayers always. I say "bring him home, girl"!!!!

vidyut said...

You are in our thoughts and prayers ALWAYS!
Lots of love and hugs!!

Anonymous said...

Hi Mandi. You don't know me. I'm an old friend of Sunil's from U of M. He and I have been in touch via email and facebook on and off over the last 12 years or so. I think the last contact I had with him was before a trip to Charleston awhile back when he gave me the greatest rec's on what to see and do while we were there.
Anyhow, I wanted you to know that I've been really grateful for your blog over the last couple years. Sometimes felt like a voyeur into your life, especially since we've never met. But really grateful nonetheless. I also wanted you to know that I'm yet another person out there praying for Sunil and you and Marlon. I've been through hospice in my own life and I know what you have ahead of you. So I'm sending as many good thoughts and prayers for strength your way. Sunil is an amazing person, one of a kind - and I see that he found his equal in you. Thanks for letting me share in your lives. And please tell Shamu that his friend Joellen from Michigan is thinking about him. God bless.

Anonymous said...

Hi. Joellen again.. :) Just realized that I referred to Sunil as Shamu at the end of my email, which probably seemed pretty curious... It was a slip, that's my husband's name (also Indian). Figured I'd explain. It wasn't a secret pet name I had for Sunil or anything. :) Take care!

Mani said...

Hi Mandi - I am Ramani, first cousin of Dr.Jairam. Jairam's mom and my mom are sisters. I spend a good two months of vacation in Mumbai at Sunil's grandma's ( my aunt) home way back in mid seventies. Sunil was a little kid at that time. I havent met him ever since the family moved to the US. Not sure if Sunil will recall at all. I still remember his cute looks and chubby cheeks. I couldnt control my emotions as I read thru your latest blog. Goes without saying that our whole family - wife Vijaya and Mom Gowri will have a special mention for Sunil, Marlon and you in our daily prayers. You are right - doctors arent GOD and let us repose faith in the All Mighty. We all pray to GOD to continue to give you the courage of conviction to grapple with the situation. Look forward to meeting all of you sometime in future. Convey our special regards to Sunil.
With warm regards & prayers
Ramani

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