My Sister's Letter

Dear Mom,

These past few days have been incredibly hard without you. I keep thinking about how I will not see your smiling, proud, face at my graduation. Or who I will call when I need recipes for Guyanese food. Or who will teach me to be a mother when I have my first child. Or simply who will call me daily just to check up on me and ask if I've eaten. Everyone that knows you knew you showed your love through food. When LM and I came back from your place, we were 10 lbs heavier.

I was the child that drove you crazy. I was the child that made you want to pull your hair out. We screamed, yelled, and argued. You thought you knew best. I wanted to do things my way. It was only recently that I realized that the reason we always bumped heads is because I am a lot like you--especially with your short temper. Neither of us wanted to back down. Thank God for Lorita, who was the mediator between us.

But we always made up. And when I needed you, you were always there. You showed unconditional love and support when I was right or wrong. You were my number one fan. That is what the definition of a mother is.

I wanted you to be around forever. Maybe it was selfish but I couldn't imagine my life without my mother. As a child I told you that if you died, I would die too. You said to me: "You won't always need me. You will have a husband and family to live for." You told me that you could help Lorita and I far more from up above that you could ever help us on earth. I am counting on you for this, Mom. I am counting on you to travel this journey called life with me, laugh with me and cry with me.

It is because of you I am who I am.  It is because of you I work as hard as I do--to make you proud whether you are on earth or somewhere far away. But what I have taken most from your departure is to be a better person. I know you are watching me and you will make sure of this. You have taught me to be grateful for what I have, to appreciate every person, every moment and every day before it is too late and they are gone.

From you, I have learned to live in the moment, seize the day, and always look beautiful while doing it. 

You have given so much for Lorita and myself, Mom. And today, we give this back to you. We honor, on this day, the most beautiful and generous woman we have ever known. 

You are free from pain now. You have left the confines of this cruel world to a place of eternal peace. You are with grandfather, grandmother, Aunty S, Aunty X, RJ, M and all of your wonderful pets.They are taking good care of you. For this reason, I do not worry. You are in the best hands. 

The last time I saw you, I hugged you and kissed your forehead but I did not say goodbye. I said "see you next time, Mom. I love you."

This is not good bye. This is see you later. When it is my turn and I am called home, I know you will be there to alleviate my fears, to hold my hands, and to guide me as you always have.

I love you, Mom. See you again one day…

My Letter to Mom

I wrote this letter to my mom and read it at her funeral service on Sunday.

Dear Mom,

Nine months ago we started this journey together to conquer stomach cancer. Our faiths became entwined and we endeavoured into something that was bigger than both of us. I became your primary caregiver, your advocate,  and the rock you could always rely on. Together we went to every apppointment, scan, test, procedure, hospital visit and more.  We traveled all over the state exploring numerous options that could beat this. I shared our story to those all over the world in my blog and you have inspired so many in the process. We fought the drug companies, went head-to-head with the insurance companies, started a jewelry collection in your name to raise awareness for the disease and seeked answers on this rare genetic cancer in order to save others.

Nine months ago, even when you got sick and had to deal with the slew of side effects, complications and days in hospice....you were still one amazing mom. You worried about all my time off from my job, getting home safely in bad weather conditions (and making sure I call you once I got home), if I’ve eaten enough, each prenatal checkup, and my the baby’s well being as I physically carried you in your weakened state.

I vividly remember before any test was done to confirm my pregnancy, you came up a few inches to my face and looked me straight into my eyes and said “Babe -- you’re pregnant”. I remember blowing you off and telling you, “Mom, that’s silly, it’s much too soon”.

I remember you surprising me one day after your chemo treatment with a feast for us to eat.  You weren’t feeling well but remembered how I liked eggplant and rice and how S liked guyanese bakes. As a result -- you made enough food to feed an army.

Or the day when it all changed, and you decided to fight harder when I told you that you’d be a grandma. I picked you for chemo. You looked so happy, vibrant and there was a pep in your step. You wore your wig for the first time, put on your makeup and got all dressed up. You got in my car and said, “Today is a good day. I am happy. I’m going to be a grandma!”.

Even in your last days in the world, you looked at me and saw the gray hairs peeking through. You said to me, “You really should get that taken care of”. Mom you were amazing and there are just no words to even explain how great your were.

Mom , we were close to begin with before your diagnosis. But the last nine months, I feel like the love we had for each other took on a whole new level.  As painful as it was to endure all the pain and heartache, I cherish the last nine months.  We got to share so much including finding out your grandson’s name.

I know that you never saw me cry in front of you but it didn’t mean that I wasn’t hurting. I wanted to be that pillar of strength for you.  As I look back, I now know that it was meant to be that way. You needed me...and I needed to do all the things I did.

I want to tell you that I will be ok...and I will look over M  in your absence.

Hospice: Day 7

Rest in peace, mom.

I love you so much and will miss you terribly.

Hospice: Day 6

DAY 6 - Tuesday

Today I had quite the scare. It had taken a short break to drop off a relative to the airport and then headed straight back to the hospice. When I arrived, mom was on the floor near her bed crying and repeating how she couldn't breathe. I looked and her oxygen tube was across the room and she couldn't reach it. I quickly put that on and got her to settle down.

She said she'd been calling for help for an hour but no one came. Near her was spilled water. Apparently she was trying to get up to use the bathroom herself when she fell and didn't have the strength to get back up :-( It really saddened me.  What if I wasn't there in time and those were her last moments in life. Ugh...I am trying my hardest not to think about it.

I'm so relieved that we will be moving to the dedicated residential hospice tomorrow morning where her care will be more personalized since the nurse to patient ratio is 4-1.  Should be WAY better.

I've been here by myself pretty much all day...just watching her sleep. She had a few moments during the day when she was awake and I talked to her even though she would just utter some words here and there.  I also assisted the hospice nurse aide earlier this morning who gave her a sponge bath. When she left, I gave mom a nice massage and put lotion on her body. I cherished this moment when I could feel her warm skin.

I've been watching her body closely and the recent changes and it's really scaring me. I've been reading about signs to look for as one approaches death. I'm seeing several signs in both the preactive and active phases of dying. My mind is going crazy...do I have weeks left...a week...a few days? The inevitable finality of this is soon approaching and then I have an uphill battle of coping and recovery.

Hospice: Day 5

DAY 5 - Monday

Today was day 5. I'm writing this completely mentally and emotionally drained after spending many many hours just sitting my mom's bedside. It's hard to fathom just sitting around all day can take so much out of you. It feels like my body is succumbing to the stress which has never quite happened this way. Before I was just tired/stressed of all the running around and lack of sleep etc....but now, I feel sick to the stomach all the time, my bones ache, my head is spinning. I feel like it takes so much energy to just be get through all this that is happening.

My sister left today so it was hard to see her go too. I watched her give mom a hug and a kiss before she left and it felt like someone punched me so hard in the gut.

Mom pretty much slept for most of the day. At around mid-day, the hospice chaplain came in to talk with mom but mom was sleeping. So we talked...we ended up chatting for nearly an hour. It was nice because even though I am not at all religious, I felt like I could open up and talk about my feelings. We talked about mom's life, my life and this disease. I told her about the genetics, the baby, losing my cousins, being the primary caretaker etc. It was strange to open up to a perfect stranger like that but it felt natural. She started to weep as I told her about what I've had to go through and all the hurdles I am dealing with.

After speaking with the chaplain, the social worker and the hospice nurse came in as well. We talked about all the issues with mom's care at this facility. They said that they'd figure out a way to get things in order. Mom woke up and shared her thoughts about her care as well. At one point, she whispered to the social worker, "I don't know if you know this but my daughter over there has a lot on her plate -- please help her".

Mom continued to talk about her fears and how she felt she needed more care and assistance. The social worker completely understood and said that for both of our sakes, that looking into a dedicated smaller hospice would more beneficial to both mom and I.  So, we got the ball rolling on the residential hospice that my sister and I initially liked.

Hospice: Day 4

DAY 4 - Sunday

On Sunday,  I called early to check in with mom. She was freaking out again and was feeling very restless. She just kept repeating over and over that she wanted out of of there and how she was depending on me to get her out of there. I told her that I'd talk to the social worker first thing on Monday morning.

I decided to have my sister and brother-in-law go ahead before me to get her situation under control. I gave them specific instructions to have the nurse give her ativan to ease her mind until I got there later in the afternoon. She slept most of the day and seemed more calm from the day before.

I took a few hours for myself to just take a short breather and prepare for the coming week. I needed some alone time to sit and think. My husband worked hard at painting the baby nursery that day too and it was so wonderful to see it completed when I got home from the hospice. He's been so amazing handling pretty much everything else while I tend to mom since last May. We talked about the coming weeks and how I'd be spending pretty much all my time at the hospice, and he says I gotta do what I gotta do.

In a week, my sister would be back to somewhat alleviate some of the stress of me...which I am really looking forward to.  It really helps me when she's here because besides me, she's the only other person mom fully trusts to be around.  Don't get me wrong, she appreciates others being around but there's just a relaxed peace of mind when my sister and I are with her.  So, we are trying out best to manage our schedules so that mom can have that love and comfort before she leaves this earth.  For most of our lives, it's always been just the three of us...always sticking together through good and bad times and it's only fitting that we spend mom's final days how we lived.  It does sadden me that pretty soon that the three of us will soon be the two of us...but I know she will always be there looking out for us. She loved us so deeply that words simply cannot explain and she will be one powerful guardian angel when the time comes.

Hospice: Day 3

DAY 3 - Saturday

Day 3 was a complete nightmare. It was just a bad bad day. It was probably the worse feeling of hopelessness since this all began on my part.

I got a call early in the morning from mom that woke me up. Mom was  freaking out and having a massive anxiety/panic attack.  She was sobbing and crying that she wanted to leave this hospice, how she wanted to just go home and die there, how she wasn't happy there, and how no one was responding to her when she'd buzz for them to get there. She complained that she'd ask for medications but never received them.  She said she wanted me there as soon as possible.  I tried calling her nurse directly to give her ativan med which helps ease anxiety and restlessness but no answer. I called the main number and no answer. So, I pretty much dropped everything and rushed over there with my sister and brother in law. When I arrived, I managed to stabilize her by talking to her. I found a nurse and we gave her morphine and ativan to calm her down. Within a few minutes, she seemed at ease and she was out cold for several hours.

I talked to the nurse about her medications and she said that mom never even asked for them at all.  She never even buzzed.  So, I got them to schedule morphine every four hours.  It worried me though, cause they couldn't do a schedule of the ativan which is what eased her restlessness. At one point, I had gone to lie down to a nearby couch and mom had woken up and wanted some help sitting up. My sister proceeded to help My sister assured her that everything was ok and I was just taking a nap and calmed her down.

It broke my heart to sit there and not rush to her side but I felt like I had to take a few moments to myself to get a quick nap in for myself and the baby.

Earlier in the morning, I remembered my mom saying how she wanted family around her 24 hours a day cause she didn't want to die alone. These words haunted me because with my sister heading back home on Monday, it would be me alone with mom...taking on all that responsibility and being her blanket of comfort with my constant presence. I felt the burden of guilt because I didn't think I could physically be there with her 24 hours a day.  I cried for what was to come the next week.

Hospice: Day 2

DAY 2 - Friday

On Friday morning, I arrived early to see mom.  When I called her earlier to see how her first night went, mom continued to complain about her new surroundings. She said that the night was very bad and how she felt like she wasn't getting the care she expected. I tried to probe her to find out exactly what was going on. I spent all day and most of the night with her to observe what was going on. I noticed that they did take very long to respond when we'd buzz for her morphine...which was not good.    One time, it took an hour.

They were also making her do things like weight checks which involved her getting out of bed and pushing her body and stressing her out. I didn't like this at all. She just wanted to rest and take things easy.  I also noticed that they were giving her medications that she really didn't need and in pill form which I specifically had told the doctor to stop (mom had starting having a lot of difficulty swallowing any pills). I made mental notes of things I had to take it upon myself to get remedied fast.  They were essentially treating mom like a long term care patient and not a hospice patient which was my concern of having hospice at the nursing home but went along with it cause she said it is what she wanted.

I was thankful that the hospice nurse called me that morning and she'd be coming in for an assessment in the afternoon. When I met her, I told her my concerns. She thought it was absurd that they were making mom do certain things. She was able to talk to the staff to stop with all the useless medications and also the weight checks.

I was also quite thankful that my sister and brother-in-law were driving up for the weekend. I felt the four of us just needed to be together and talk as we go through all this. Since the beginning we've the foundation of mom's support. My sister and I had to make a lot of tough decisions along the way and had to experience a whirlwind of emotions.

Me,  being on the front lines since last May..being the primary caregiver and the rock who has yet to shed a tear in front of my dying mom. My sister, doing what she could to be here as much as possible since she lives out of state and dealing with feeling guilt.  And our husbands being the safety nets for us  all the times we fall and helping us mend our broken hearts.

Hospice: Day 1

I've been going back and forth lately whether to even talk about what I've been going through these past few days as we enter hospice. Tonight, I decided that I just needed to. It's all apart of this journey.

DAY 1 - Thursday

On Thursday, we stopped mom's TPN at midnight and mom was officially on the hospice program later in the day. (I know there are some people out there with strong opinions of TPN. Some say it's inhumane and starving the human body, but that is not the case. At the end of life, the body just doesn't use the nutrition like a normal healthy body would and,  as a result, the liquid just gets piled up. And it causes more complications and just prolongs the suffering. So, my mom, sister and I made the decision to stop awhile back. A lot of residential hospices will not even accept admission if the patient is on TPN. I thought I should address this.)

As I already mentioned in the previous blog, last weekend, my sister and I visited several beautiful residential hospice facilities. After much discussion we decided on one we thought mom would like and suit her needs.  We returned to the nursing home to give mom an update. She was ready for the move and transition to hospice. Coincidently, the nurse was in the room, overheard the conversation and mentioned that there were four hospice rooms in the same nursing home. It was in the Long Term Care Unit which was just upstairs. He thought he'd just mention it to us.

Mom seemed more happy with this idea. She thought the transition to upstairs would be easier and didn't want to deal with the hassle of moving to an entire new facility when we was use to this one. So, we gave the go ahead since it what she wanted.

We also got enrolled in the overseeing hospice program which would check in with us and provide additional services a few times a week (nursing, nursing aide, chaplain, social worker, and volunteers). Everything seemed like it was finally on the right track and as much as the whole situation sucked, it seemed like the natural progression of  things.

On Thursday (my last day of work for awhile), I took most of the day off work and headed to the facility but by the time I got there, the staff had already moved mom upstairs. I was very happy that she was all settled in and resting when I arrived.  Her belongings even packed away nicely!  I stayed with her for the rest of the day (she slept most of it) until I went to go home to join my husband for a very special valentines day dinner he had prepared for me. He was planning it for some time and he thought we deserved some time to ourselves in all the madness we've been dealing with lately. I was looking forward to it a lot!

But,  things took a sad turn. While getting ready for dinner, I got a call from mom crying and saying how she wasn't happy upstairs in her new room. She complained that the new staff were very slow at responding to her when she needed help or assistance (often times 30-40 minutes).  She said the staff weren't friendly either and she wasn't getting her medications on time. I stayed on the phone with her and talked to her for some time until she settled down. I told her it was a different environment and that we'd work out the kinks in the morning. I told her that I'd talk to the staff in the morning and for her to just get some rest for now. She took my advise and went to sleep.

Enter Hospice

This morning I met with the hospice team we'll be working with and signed all the necessary paperwork to officially get registered. It was a surreal experience. Signing on behalf of a loved one..making big decisions of life and death. Apart of me still can't believe all this is happening...

Over the weekend, my sister and I toured several hospices and we made a decision which we think mom will be the happiest and most comfortable to spend her last days. From all those we've talked with recently...they are estimating about two weeks left once you stop TPN. Obviously that number is relative and it really depends on the individual situation but I wanted everyone to know that in case they  (especially family out of state) wanted to come visit mom to see her one last time.  

Tomorrow will be the first day of hospice. If I can, I will try to post short daily posts until the end to keep everyone updated but I don't know if I will be able to emotionally. All this has really taken a toll on me physically lately. I am prepared to lost her but it hurts me immensely to see her daily suffering. It's just so hard too bare these days. Last night I had a panic attack while leaving the rehab facility. I started crying uncontrollably and then for the first time, I physically couldn't breathe and my whole body was tense and trembled. Kinda nuts -- that's never happened before. Apart of me feels like I have no strength left to get through these last days...I feel so spent. I've been relying lately on a few close family members and a few close friends to get me through this. They have been a godsend to me lately. Always within reach whether it's in person, email, phone call or text practically each and every day.

This afternoon, mom had a thora again to drain her lungs (probably the last time) to make her more comfortable in the coming weeks. It was scary because they had to stop the procedure early and all the fluid could not be drained out this time because her lungs nearly collapsed. She was in a lot of pain coming out of the procedure and it took a long time to stabilize her. It was a very very long day at the hospital before heading back to the rehab facility. 

The Next Step

Today I met with mom's care team for conference at the rehabilitation facility. Based on all the factors at play and mom's wishes, we will be transitioning to a full care residential hospice facility. We are expected to move sometime next week once all the paperwork is processed and the necessary people can communicate. The past week, I've talked and met with tons of people involved in all aspects of this (doctors, nurses, social workers, physical therapists, occupational therapists, clinical coordinators). I even toured one of the residential hospices this past week which I will talk about in a separate blog entry.

To briefly summarize, mom's physical condition is plateauing/diminishing where the therapists can no longer to help her due to the disease progressing. And due to this, they can no longer work with her and have her stay there. It is completely understandable. They've been great at working with us to decrease the TPN so she's not as uncomfortable from all the fluid buildup in her stomach and legs, and decreased therapy sessions to accommodate her situation.

Over the weekend, my sister will be here and we have a lot to discuss. We have a hospice consult appt. and will also be touring the same hospice I toured this past weekend. It sucks that insurance doesn't cover it but we've decided that money didn't matter. We want mom to have the best care possible no matter the costs and deserves the highest quality of comfort and care. She's always taken care of us ever since we were young and sacrificed so much for us...so it's only fitting that we make her final days be in a beautiful and comforting environment.

We will also be meeting with a chapel near my home to go over final arrangements for when that time comes. It's hard but I want to be prepared. It is what it is. I'm doing what I must do. The end is nearing us and I will not falter now.

Attention family & friends who want to visit mom over the next few weeks. You are more than welcomed to contact me to coordinate. I want mom to be around all those who love her.