Chasing Lucidity

Ever since mom passed, at times I wake up in the middle of the night in a foggy and non-lucid state. The first thought that pops in my head is,  where's mom? I need to call her. We should go shopping and hang out. I need to tell her what Baby C just did cause that would make her smile. In that state of mind, I don't realize she's gone and all that's happened. Did all of it even really did happen?! Then, as I breathe and my lucidity gradually eases in, all the events in the past year just hits me...a rude awakening. She's not here anyone. She's gone forever. I will never see her face in a lively manner again. Her smile, her laughter and most of all her voice. I miss that. It's a surreal concept with her being gone. She was a part of my daily life. Even as an adult, there was not a day I didn't at least speak with her over the phone. We saw each other several times a week. We were just close. And then she went away.

The last few weeks, I've been haunted by all the bad times. It's strange, I can remember those memories so precisely.  Every little moment and finest detail. Then, as I try to focus on a good past memory (before she got sick); I struggle. I really really have to focus to remember the times before her illness. 

I think about her each and every day. Second guessing decisions what were made. Wondering if there was something more I could have done to save her. To make her healthy and for her to be here with me enjoying times with the grandson she very much wanted to meet. But it wasn't in my control.  

I wanted to share a song that's really resonated with me lately. Being a young caregiver and taking care of someone terminally ill.

http://www.youtube.com/watch?v=5y_KJAg8bHI

Rough Patch

It's been awhile since my last post. Partly, it's because in any given week or day even, I go through a slew of emotions and by the time I sit to write an entry, and come back to edit it; the feelings of things are just different (if that makes any sense).

To summarize, lately, I've been very regretful of certain things. I regret not giving mom a grandchild sooner. I know it's stupid to think that way but for years and years, I put off having kids . She'd always ask me when she was going to be a grandma. She was SO looking forward to the day when she would be. It just really breaks my heart I guess, that she was two months shy of meeting C. But it is what it is, I suppose. Can't change it. Then I think that if I were to have had a baby sooner, I would not have been able to take care of her to the extent I did. So the timing actually worked in a weird way cause there were days I did not know how I did what I did. So, if I had a child in all that - I don't know how I would've done it.   Just last night, I was thinking of her and chatting with my husband about all this and it dawned on it that her passing at the time she did was actually in a weird way a gift to me. She was worried about me and my pregnancy and dealing with so much. She'd ask me every day how I was feeling.  Even the afternoon before she passed (while she was alert enough), she asked me to come over closer. I remember her caressing my belly and then kissing it..then she softly smiled. It was a child-like smile of pure and utter content and happiness. Then she closed her eyes and feel asleep. I see now that she wanted to go so that I can start my family and it be 100% of my time and focus.

Some other things that's been consuming my mind several weeks ago were those very dark times. The times where you feel so lonely and helpless. The times you see all the bad stuff when you are the primary caregiver. I've just been having flashbacks of some of those times. Like the time I went out for just a bit and came back to find her on the floor propped up against the hospital bed with her oxygen like across the room and she wasn't able to reach it and she was just crying. Or, New Year's Eve when she woke up in the middle of the night and was having breathing issues and she said she felt like she was going to die now. And rushing her to the ER at 2 am in the morning and then finding that she had a massive blood clots that were branching out and she was touch and go for a few days. Or the time I was on the sofa in an adjoining room while my sister sat with her as the nurse came in to give her medications and she her body had to be readjusted and all I could hear was her crying and moaning my name. Or the numerous times I had to clean away every form of bodily fluid and she looked up at me with helpless eyes....knowing that her dignity was going away but relieved that I was there with her to handle it all. I think the worse of it was when I had to wipe tears away when she'd ask why this was happening to her. Before I had Baby C, I use to think how gross it was to clean those dirty diapers, or all the puke and spit up..and just taking care of another human life. When C was born, I said to myself, "I got this".

Lastly, I've been feeling that void again with mom not being here. I am enjoying all the little things Baby C is doing, all the little milestones he's reaching and it just makes me so so sad, that mom is not here to see it.  It's not as bad as the first few weeks of his birth...those days were bad. So many nights as I nursed him, I couldn't help but cry and cry. But then you don't want your baby to feel that sadness emanating off of you so you keep it inside..and just hold him closer to show him you love him more than anything else in the whole world.

My Story Begins

Today I had my first appointment with Dr. A and this time I was the patient.  Kinda strange. It was the first time seeing him in person since mom was in the hospital and entered hospice care. We had communicated via email and phone a number of times since mom passed back in February.  I knew that my preventative endoscopy was long overdue (the last one was early summer of 2011).  I was suppose to get one last year but with mom getting diagnosed and then me getting pregnant, it was advised to wait until after the baby was born to do the procedure. I was fine with this because I did not want to cause any complications while pregnant.

Earlier this week, I reached out to my genetics counselor and Dr. A on the course of action for me going forward. I was now 9 weeks post-pregnancy and got the OK from my OB that the procedure would be safe to do now.  I wanted to be as proactive as I could be even though flashes of my mom's endoscopy last May brought back some very painful memories.  

Dr. A wanted to meet in person and go over everything. I decided to meet him at a different clinic. Apart of me just didn't want to go back to the clinic mom went to. Too many familiar faces, and I know there would be questions from all the chemo nurses and staff who were fond of mom. We were regulars there for most of last year and I just didn't want to see that look of sadness when I tell people what happened. I wanted to dust that off and start fresh and I did.

I decided to take Baby C with me too. I felt that I needed to be with him. He was going to get me through this. His smiling face gazing at me...his cooing...and his eyes just looking deep into mine. That is what this was about. 

As I waited patiently for Dr. A to come into the room, a familiar face peeked in. It was my genetics counselor! She was a site for sore eyes. Coincidently, she was just making a quick stop at this clinic location and ran into Dr. A in the hall who mentioned I was there today. We sat and talked for a few minutes. We oogled at Baby C as he talked baby gibberish. She told me of some interesting studies in the genetics world for diffuse stomach cancer. Interesting stuff!

Shortly after she left, I had my consult with Dr. A. We went over A LOT of information. The first thing he told me was that he wanted to coordinate my care going forward. He said that the research from BC Cancer Agency was still in the works and we don't know anything concrete right now. So, going forward,  I have to assume that I am positive for the genetic marker in order to be as agressive with prevention as possible. He definitely wants me to get going on routine endoscopies. Instead of once a year, he recommends twice a year. Also, he said that he is going to find a GI that is local who would be best at early detection. He wanted expertise. We also explored other testing that I will eventually have done in the coming year or so: endoscopy ultrasound, CT, MRI, breast cancer monitoring, and colon cancer monitoring. As you know, having the CDH1 marker not only makes you pre-disposed to stomach cancer, but also breast and colon cancer. He wanted to make sure that all angles of this were going to be looked at. We also chatted a bit about prophylactic gastrectomy..which we will explore down the road here.

I left the appointment feeling empowered. A beautiful sunny day, the wind in my hair, my son in the back seat..I felt good. I can't predict what the next few weeks, months or years will bring. But, what I do know is that life is worth living and I'm going to be calling the shots every step of the way in order to see my son grow up. 

Release

Is there a Death? The light of day
At eventide shall fade away;
From out the sod's eternal gloom
The flowers, in their season, bloom;
Bud, bloom and fade, and soon the spot
Whereon they flourished knows them not;
Blighted by chill, autumnal frost;
"Ashes to ashes, dust to dust!"
Is there a Death? Pale forms of men
To formless clay resolve again;
Sarcophagus of graven stone,
Nor solitary grave, unknown,
Mausoleum, or funeral urn,
No answer to our cries return;
Nor silent lips disclose their trust;
"Ashes to ashes, dust to dust!"
Is there a Death? All forms of clay
Successively shall pass away;
But, as the joyous days of spring
Witness the glad awakening
Of nature's forces, may not men,
In some due season, rise again?
Then why this calm, inherent trust,
"If ashes to ashes, dust to dust?"

Since my mom's passing in February, my sister and I have been holding off on spreading mom's ashes. Mainly, because it was winter here in Minnesota and mom wanted her remains to be spread over a body of water and all was frozen over. She left the decision of the exact location up to my sister and I. She said to do whatever we thought was best and was easiest for us.

Several weeks ago, a week before my mom's 61st birthday, we decided to finally take care of this piece of unfinished business. We decided to spread the ashes along the Mississippi River. We found a serene beautiful spot along the river. We choose this location because it was close to where she worked and lived. She loved living in downtown St. Paul and enjoyed walking along the river bank when the weather was nice. It seemed fitting.

It all worked out perfectly. My sister was in town helping me clean out mom's place that weekend along with my aunt and uncle (parents of the cousins I lost of the same cancer)  It just felt right that we were all together and knew mom would approve of it being done at this time. It was so nice to have my aunt and uncle there because due to some unfortunate circumstances, they were unable to come to the funeral. So having them be a part of the finality of life ceremony, meant a lot. Mom would've been so happy. 

My uncle (mom's bother) lead the informal ceremony with some personal words and then sang a religious verse in Hindi. My sister and I held mom's ashes and slowly poured them into the water while my aunt assisted us, as she always has. When we were done pouring the ashes, we saw three ducks swim by. We all smiled. I like to think that it was a sign...Mom, Rajen, Sandra. After we finished, I felt release. I felt mom's spirit was there with us..telling us that she's ok and to move on. Telling us that she's with Sandra and Rajen now and she'll see us again someday.

Buried Memories

Over the last few weeks, I've been handling some unfinished business that I finally felt strong enough to tackle. As you can imagine, the first few weeks after having Baby C has been bittersweet and it really took an emotional toll on me especially in post pardum and mom being gone (will take more about this in a separate blog post).

The first thing that I have been dragging my feet on is opening the two suitcases that I quickly packed the morning mom passed from the hospice. I don't really know why I couldn't open it -- mom passed in February; it was now JUNE. I had the two suitcases in my spare bedroom and would always glance at it in passing and just didn't have enough courage to open it up. I guess apart of me knew that once I open it, I'd relive that morning. I'd see the pants and top that the nurse took off her body as they prepared her body to move to the funeral home; the soft pink robe I got her cause she was always so cold in her final days; the wig she wore at the beginning of the journey but later just wore hats; the small trinkets, notes, pictures that sat beside her on her nightstand. I'd smell her favorite perfume and her unique scent.

I guess when it came down to it; I was just plain afraid to relive that morning. Being woken up in the wee hours of the morning, rushing over to the hospice, entering her room and just seeing her lifeless body there. She wasn't made up and didn't look like how she did at the funeral funeral. Instead she looked sick, and lifeless. The one thing I remember was her jaw dropped which was normal of the deceased. That's an image that will haunt me. I didn't want to remember that again. I remember taking a picture of her because my sister wanted to see her (a few weeks later, I deleted the image from my cell phone). I wanted to remember her happy, smiling and lively.

Well, a few weeks ago, I was telling my husband about how I should really open it so that I could get her iPad out to give to my sister when she visited. My sister worked very hard at putting so much on there and I knew she'd want to keep it. I knew I had to open it. I sat there just staring at it. My husband saw this, grabbed the two suitcases, brought me closer and just opened them. He helped me go through it to find what I needed.  I thank him for that. I couldn't have done it alone.

One Moment in Time

As some of you know already, I'm now a mom! It's still a surreal concept but I'm enjoying every minute  of it.  I remember chatting with my mom last summer during one of the chemo sessions about my birth. I remember her telling me that it was the most miraculous, amazing, and life changing feelings to ever endure. She could not have been more right. She said that the first time she held me and I opened my eyes and gazed at her, her heart just melted. I felt the same...the first time I held C in my arms and he looked up at me with those deep brown eyes, it took me to a place where my heart was just bubbling over with love. After all I had been through and the sadness that I experienced, he was here and I was so overjoyed.  A reason to smile, a reason to be happy...a reason to live and enjoy those who are here and love you.

I thought I'd share the emotional day. Every mom has their story of their child's birth. Here's mine...

It was Sunday night and we were watching Game of Thrones like we normally do. I started getting a couple really bad cramps but through nothing of it cause I had been getting those off and on all week and it did not result into anything. From 10 PM - midnight, the cramps started getting worse. Close to 1 AM, I knew...I was actually having real contractions. I timed them and they were about 10 minutes apart. I told S and we started to get stuff together and make our way to the hospital. We arrived there around 1:30 AM and I was checked in and then admitted into one of their pre-labor rooms to monitor my status. I was hooked up so they can track my contractions. I was dilated only 4 cm (which I have been for the past week), so no change there. Between 1:30 AM - 2:30 AM though, there was no progression. My contractions all of a sudden were getting farther apart. The staff told me that even though I was in active labor, that it would be awhile until I was ready. They suggested I head back home and track my contractions until they were about 5 minutes apart and then come back.

I was sad that I had to go back home cause I felt like I was so close. Between the hours of 3:00 AM - 5:00 AM, I tracked my contractions. They were getting painful. The contractions were now about 3 minutes apart. We got our things together and headed to the hospital again, and this time they checked me in right away to what would be my delivery room.  The contractions were intense to the point that I couldn't talk anymore. I kept progressing (about 7 cm) and at about 7 AM, I was given an epidural to alleviate some of the pain. This was a godsend. Things calmed down a bit the next few hours but unfortunately I stopped progressing and stalled out. They decided to gave me pitocin, an inducing drug,  to help things get moving. At around 11 AM, the baby's heart beat started dropping which wasn't good.   They stopped the pitocin and I had to move into various positions to see if I could get the heart rate back up, which I did. It was intense! We waited a few more hours, and still...no more progression.

They decided to start the pitocin again, but at a lower dose. I was pretty out of it and almost half asleep. All I remember is around 2:30 PM or so, my OB and a few nurses came rushing to my room and said the heart rate was dropping low again and how the baby wasn't liking it and the baby had to come out now. They said that I had to do an emergency c section. Within a few minutes, I was whisked away to the operating room with a dozen or so people flurrying around me. My heart began racing and so many thoughts flooded my mind. A part of me could not believe this was happening.  All that I kept thinking was I needed my baby to be ok. He had to be ok. Something good needed to happen. I held my husband's hand and tried to calm down as they prepped me for surgery. I closed my eyes for a moment and talked silently to mom. I said, "Mom, you told me that you'd be here if I ever really needed you. I need you now. Please let C be ok." What seemed like just a few seconds, I felt tugging on my body and shortly after, I heard my baby boy cry. Tears of joy ran down my face.

A Birthday Without Mom

A few weeks ago I experienced my first birthday without mom. The entire birthday weekend hit me very hard. It was filled with a feeling of missing-ness and my heart just hurt so deeply that at times, it felt as if I couldn't breathe. This was the first birthday that she wasn't here.  30-some years ago, she was in a hospital about to give birth to me...her first born. And today, she wasn't here. That physical bond was not present. It was a strange and foreign feeling...that's the best way I can even describe it.

First things first. I was showered by emails, phone calls, messages from family and friends all over the world so I definitely felt very loved and thank everyone who reached out to me. But,  my heart ached from mom not being here. What would normally be our "mom-daughter hanging out day",  was spent with a cousin and her family. They truly went above and beyond to make the day seem not so sad and I truly had a wonderful time. We had lunch, we laughed, and even had a birthday cake with WAY too many candles to blow out (I'm getting old!).

The day after, on my actual birthday was very special as well. My husband knowing that mom was always the first person to call me each year to wish me a happy birthday very early in the morning, called my cell phone while I was getting up to take a shower. Yes, he was in the same room. Haha! He knew how sad it made me to not get that early morning phone call and took matters into his own hands to start my birthday off with a smile. It was such a silly but quirky gesture of love and thoughtfulness. We spent the rest of the day together. We stayed in and spent the day cooking together, and watched a movie. It was nice :-)

She is OK

Lately I've really been at peace with all that has happened.  I'm sure some of you out there have noticed that from my recent postings. Yes, I still miss mom deeply and think of her each and every day. But there's something I wanted to share and I feel like that I can talk about it now. It's really been the driving force of this peace of mind that I have with me now. 

Before I start, there's one thing that you should know about me. I am not a huge religious person. I don't follow a set faith. I tend to be more logical, rational, and objective. When mom got sick, I didn't rely on faith or religion to get me through those hard times; I relied on my inner strength, and the support systems that I had which I am so so thankful for.

The whole idea of what there was in store for mom after she passed really messed with my head. The concept of just void and her soul just vanishing from sheer existence really bothered and depressed me to no end.

The night before she passed, I stayed with her very late. She was asleep for most of the time. She would come in and out of consciousness and I'd tell her about our move to the new hospice the next day. I ended up going home to get some of my things packed because I was planning on spending pretty much every moment with her at the new hospice and wanted to grab a few hours of sleep too.

Sometime around 5 am, I drifted deep into sleep. I dreamt of mom.  It was the most calming and serene feeling which I found was rather odd because up to this point, all the dreams I've had of mom were filled with anxiety, paranoia, sadness and hopelessness. In previous dreams of her for the last nine months, she was also sick and looked sick and I was constantly in tears and struggling to just come up for air because it would feel like my entire world was crushing down on me. But, for the first time, this dream was different. Mom was right in front of me. She was dressed in a red shirt and floral skirt with a wine cooler in hand. She looked how she use to look...no wig, no hookups, no sickness.  She had the most welcoming and warm smile. Then she spoke to me. She said, "Baby, I'm fine at this new place now".  In my conscious mind, I thought she was referring to the new hospice that we'd be moving to later that day.  Before I could speak to her or reach out to her, I was quickly awaken by my phone ringing. It was the nurse calling to notify me that mom had just passed away.

Looking back at it all, I don't know what to make of my dream. Was it just a dream or was it more? I'll never really know. All I do know is that I needed it. I needed to know that she was fine after all we went through together. It made me feel comforted knowing that her love for me and our shared journey created that one very special moment that I will always hold very dear to my heart.  She really loved me. And she knew that I loved her from the day I was born to her last moments. She saw all that I did for her, the sacrifices I made, and in the end that's what true love really is.  To love freely and openly and to receive that back.  She did that for me.

One Month

This part Wednesday was the one month mark of mom's death. It's strange to think it's only been a month because for me it feels so much longer. It feels like a lifetime ago actually because each day I took care of her was jammed pack with so much craziness. I've been doing ok. It's been especially hard this week because I've started to take care of all the financial/legal matters. Yesterday I went in to her bank to notify them of her passing and as I sat there in front of the banker and she kept calling all the different business lines telling them each of the death, it felt like an icy dagger stabbing my heart each time. To hear her name and the word 'deceased' was surreal. I had to force myself to keep my composure. 

My mind also wanders...in a few days, it will be my birthday. The first birthday without her. I'm definitely going to feel it that day. It was our mother-daughter tradition to go spend a day going shopping, grabbing lunch and just hanging out. When I became an adult, she would never know what to get me as a gift so when we'd shop, she'd have me try on clothes, experiment with makeup and perfume..and if I liked something in particular, she'd just get it for me. She knew that I was always the kind of person to never really treat myself to nicer things, so she took that as her cue. She'd always ask where I wanted to go to lunch and I'd always pick an Asian place. Not because it was my favorite, but it was hers. I am going to miss days like that. 

In one month (or less!), this past Wednesday is the one month mark of my due date of my first born. Even though this week has been especially stressful, I feel joy and complete happiness to welcome this baby into the world. It's one amazing feeling to love someone who you have yet to meet. I keep thinking...this is how mom felt about me as her first born. I go back and read passages of the journal I got her back last summer. She was so thrilled for this baby. You can tell that even though very sick, she knew that this was meant to be for me. Lately, as the pregnancy becomes harder on my body, I talk to her and I feel like she is around me like a warm blanket. I see the sun rise as I drive to work, I see and feel her. I recall all the tips, advice and conversations we had at each chemo appointment.  I am so grateful for those precious moments...because she taught me of what a mother should be. It's hard to explain but I feel like she went away and I don't need her anymore (even though she's missed dearly). She gave me all the life lessons, love and tools I needed.Everything she has put into being a mom, has come around and she's passed the torch for me to be a mother. I get it now. The big picture...this deep inner happiness that no one can take away.

After Cargiving Ends

A fellow friend and former caregiver sent me this article the other day. I wanted to share it. It touches a lot of key points on life after caregiving. My friend and I would often talk about how young we were to take care of our moms and the struggles we encountered what others would go through twice our age. It definitely puts things into perspective once you've gone through this.  After seeing the pain and suffering of your loved one for so long...it really changes you.

After Cargiving Ends

In January, the 93-year-old mother of my oldest friend died in a Chicago suburb. Suzy was exceptionally close to her mother, and had long dreaded saying a final goodbye. But when it came time to do so — after a year in which her mother struggled with illness and increasing disability — my friend was surprisingly at peace.

I found myself thinking about the aftermath of caregiving, and what Suzy’s life would be like in the months and years ahead. And, as I did so, I saw a question repeated several times on the caregiving blogs I look at each day: “Is there life after caregiving, and if so what it is like?”

Of course, there is no single answer to this question. It depends on so much: a caregiver’s circumstances and emotional temperament, the nature of his or her relationship with the person being looked after, the demands that caregiving imposed, the resources available, and the way a loved one’s final chapter unfolded, among many other factors.

As I thought about this, I came across a Web site, www.aftergiving.com, on this topic and reached out to its founder, Denise Brown, who also runs www.caregiving.com. She put me in touch with former caregivers willing to talk about their experiences.

Their stories, which I’ll relate in this and a future post, focus on the years immediately after caregiving ends, when many people grapple with an altered sense of identity. This is only one stage of life after caregiving, which can go on for many more years, with other twists and turns along the way.

Sharon Vander Waal of Oostburg, Wisc., hadn’t noticed that her husband Wayne was dragging his leg when he went to the doctor for a checkup in mid-2006. But the doctor did, and after scans, an examination by a neurologist, and a second opinion by a specialist at the Mayo Clinic in Rochester, Minn., Wayne received a devastating diagnosis: multiple systems atrophy, a neurological disease that resembles Parkinson’s but progresses more rapidly.

If that wasn’t enough, several months later a doctor told Ms. Vander Waal she had breast cancer, and she embarked on an eight-month round of chemotherapy, surgery and radiation.

Ms. Vander Waal describes the four-and-a-half years that she looked after Wayne as a “scary and overwhelming process.” The disease affected “pretty much everything,” she said — Wayne’s coordination, his walking, his swallowing — and by the end he could do very little for himself. Looking after him and managing the inevitable medical crises occupied her full-time attention.

After her husband’s death in January 2011, Ms. Vander Waal’s first feeling was relief, mixed with grief. But then unexpected feelings arose.

“All the emotions I had kept bottled inside came out — all the sadness and regret over what had happened,” she said. While she was a caregiver, her overwhelming feeling had been, “I need to be strong for my husband;” now she felt her own vulnerability, which had been off limits before.

At the same time, profound fatigue descended, interrupted by flashes of guilt. “You feel that somehow you should have been able to control the uncontrollable, which is illogical, not rational thinking, but you can’t push it away,” Ms. Vander Waal said. For her, faith was a refuge from those feelings, along with her insight that, “I’m just a weak vessel who tried to do what I could but it was out of my hands.”

The time after caregiving became a “time for reflecting,” Ms. Vander Waal, now 65, said. “Where was my place in the world? I was no longer a caregiver; I was no longer a wife.” That led to a realization that she missed helping others, which in turn led to a decision to volunteer once a week at a local respite program for adults with mild and moderate dementia.

“In the beginning, it was a connection with my past and with Wayne,” Ms. Vander Waal said. “But it’s become a joy and I’ve come to realize that, for me at least, once a caregiver always a caregiver.”

.

Darren Walsh hadn’t talked openly about what he went through with his father before I gave him a call last month in Chicago. At first, he was hesitant to talk about himself. It was what his father went through that was foremost in his mind.

Irving Walsh, a successful businessman, had raised three sons with considerable sacrifice and devotion. A fiercely independent, sociable man, he was living alone at age 85 when Darren got a call that his father was in a Montreal emergency room, in serious condition. Darren, who is unmarried, hopped on a plane, and within a few days doctors had saved Irving after draining fluid buildup around his heart.

Coincidentally, Darren, 40, had left his job as a lawyer at a global consulting firm only a few days before. “I have to say I believe there was some element of fate here,” he told me, describing how he spent the next year and a half at his father’s side as the older man survived intensive care, then underwent months of rehabilitation, then tried out assistance living, which he felt wasn’t right for him, then returned home.

Along the way there was a misdiagnosis of cancer, a bad fall that resulted in a hip fracture, and many more hair-raising trips to the hospital and other complications. Darren used all his negotiating skills to make sure Irving got the best possible care while managing his doctor’s appointments and medications. But still, it wasn’t easy.

“I don’t think anything I’d done up to that point can match what I did for my dad,” Darren said. “You learn whatever you thought your physical and emotional limitations were, you stretch beyond them to do what needs to be done. If anything, it’s made me a better attorney because there is no problem that’s going to come my way that is bigger than the life and death issues I dealt with with my dad.”

Irving died in October 2010 a few months after hip surgery, only days from being discharged from rehabilitation. “I don’t think there’s any way to go through the caregiving experience without coming out on the other side a different person,” Darren said.

One of the things he learned is that it takes time to process the experience of caregiving. “It’s almost like your brain is careful not to open up the fire hydrant” of emotions, he said, and “it lets it trickle out in bits and pieces.”

“What I saw with my dad may be a glimpse of what lies down the road for me,” he continued. “So now, if I have the ability to go for a run or lift weights or go for a walk outside, I’m not going to take it for granted. I’m going to go out there and do it and now, more than ever, live life.”

One emotion Darren said he will not feel is regret. “I never wanted my father to feel he was going through any of this alone, and there will never be a day when I’ll say I should have been doing something else. While the memories are sometimes painful, most of all they’re rewarding.”

Article Written by Judith Graham

A Message from Dr. A

Today I received a wonderful card in the mail from Dr. A that really touched me.  Since mom got diagnosed, he's truly been amazing and I could not have asked for a better doctor for mom's care. He was an integral part in our journey and without his guidance and expertise, mom would not have made it as far as she did.


Dear Lorita,

I am so sorry that you lost your mom after her struggle with gastric cancer. 

No daughter could have given better care and support than you did for your mom. She was so helped by your thoughtful presence, by the way you listened to her, respected her wishes and by your efforts to be certain she was getting the best possible care. I was impressed with how expertly you explored options, and also how much your mother trusted and leaned on you.

Please let us know if we can help in any way and please keep in touch. Also, please give our respects to you sister, your husband and your brother-in-law. Rita was lucky to have such a loving family.

Dr. A

Void

It's hard to believe that this week will be two weeks since mom passed.  Her service was very special and memorable. My sister, I and our husbands planned every aspect of it. We wanted it to be personal and from the heart. Mom looked so beautiful in her trademark red shirt with red roses all around her.

The cremation was private because we wanted it to be. It has always been the three of us for most of our lives and it was only fitting we were with her physical body before we said goodbye forever. So, we both said goodbye, tucked our letters into her hands along with roses and witnessed as she was carried into the chamber. My sister pushed the button; I felt that she needed to. It's strange, it was the first time I actually cried in front of mom...as the casket closed...for one last time. It felt like someone ripped my heart out and stomped on it.

Since that day, everywhere I turn, I see and feel the massive void. I now have all this time on my hands and it feels so foreign. Mom was apart of my daily life and when she got diagnosed last May, the time we spent together was significant. There was not a day that went by that I did not see her. It's strange not to be running to appointments....or going to hospitals for various tests and treatments...or researching treatments and medications. Last week I actually used my lunch break for lunch in the office -- that was so bizarre cause I haven't done that in nine months.

As for me, I'm doing ok, I guess. I have a lot of support from friends, family and co-workers. But, it's still extremely hard. I find it hard just calling people to talk...but I am so appreciative when they call to check up on me. That means the world to me.

I find myself breaking down when no one is around me and some nights I just can't sleep at all cause too many thoughts of her last few weeks flood my mind. There's so much that I saw these last nine months that I sugar-coated on this blog...that unless you've been here, you cannot begin to comprehend. There were some very dark days where the pain and suffering was just too much to bare. Eventually I might talk about some of those days because it is important to know the full story from a caregiver point of view. It might actually help someone else out there. It is because of all that pain and suffering, that I am sort of OK with her being gone. She no longer has to go through all that.

I've been asked by quite a few people if I will continue to write on this blog. I've decided that I will continue. It will not be as frequent but this story is not done yet...

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.