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...