My Family Caregiving Experience: Becoming a Caregiver For Life

Like most people, I didn’t have any family caregiving experience when I started my journey.

Most people don’t have a clue when they’re about to become a caregiver for life. Everything happens suddenly and unexpectedly…

Nothing can prepare you for devastating changes in your loved ones’ life… and in the blink of an eye, my life has changed forever, too.

My Family Caregiving Experience: Becoming a Caregiver For Life

Here’s My Story…

I was with a patient when I got the call. My brother — who usually never called me — was calling me about our big brother, Ed. I could barely process what he was saying…

He was screaming on the phone, “there’s blood everywhere!”

“We’re not sure where he’s bleeding from. He vomited a lot of blood. The floor is covered with blood. We called 911. He was taken by the paramedics to the hospital.”

I couldn’t breathe. I couldn’t think. I just kept saying, “Oh, my God…. Oh, my God…. Oh, my God!”

Trying to calm both of us, I told my brother that “it was probably some bleeding in his stomach… and they’re going to take care of him in the hospital. They’re going to fix this… and he’s going to be okay.”

I told him that I had to go. So, I could finish up and drive to San Bernardino (Southern California). I lived in Silicon Valley (Northern California) at the time.

I was crying and shaking when I went back to my patient. I told him that my brother had some bleeding from his stomach… and I needed to go to Southern California.

Still thinking that he had some bleeding from his stomach and they were working on him in the hospital, I saw another patient before I headed home to pack.

I don’t remember much what happened that morning. I must have called my office to let them know what happened to my brother and why I was leaving.

I was preparing to have a long visit. While he was recuperating, I would have to help him with everything. So, I thought it made sense to rent a car and drive there. I usually didn’t drive my car for long trips… to avoid excessive wear and tear.

But, before I could get home…

My brother’s physician called me and wanted to know when I was going to arrive. I told her that it would take about 6 hours for me to get there.

Still confused about what was going on… I told her, “I would be there by the time you finish working on whatever was going on with his stomach.”

She told me, “No, you need to get here faster than that. If you take too long, your brother may be GONE by then. He wasn’t bleeding from his stomach. He was vomiting because his brain was bleeding.”

It was all too much… and I couldn’t process what she was saying. I told her that I needed to park my car and I needed her to tell me again what was really going on with my brother.

It took a while for me to finally understand the gravity of the situation… that it was far worse than what I was thinking… and hoping.

I cried all the way home. I cried while I was packing. I cried all the way to the airport…

On October 22, 2003, my brother’s life and my life changed forever. My beloved brother and best friend, Ed, suffered a brain injury after hemorrhaging from a brain aneurysm.

I was shell-shocked and in complete disbelief of what was going on. Nothing can prepare you for such catastrophic health changes for your loved one.

I remember walking around the hospital in a daze…

Ed was my rock. As we were growing up, he was always there for me. At first, I focused on dealing with such an inconsolable loss. He was the family champion. How would we ever survive living without his help and guidance?

But within hours, the harsh reality of my new life and responsibilities started to sink in. Ed was going to need me to be strong. I needed to stop being selfish and focus on how I could help him and our family.

For many years, Ed was the primary caregiver for our mother who had heart disease and other health issues. After he became ill in 2003, I took over all his caregiving responsibilities… and my role as the family caregiver began.

My life was crazy busy before… but, it was about to get much worse.

It wasn’t lost on me that in my new role as a caregiver, not only did I have to manage my own life but I also needed to survive to help my family…

My Family Caregiving Experience: Caregivers For Life Need to Be Strong

CC BY-SA by symphony of love

Here’s My Background…

Over the last 21 years, my work as a Registered Nurse has shifted from working in hospitals — I’ve worked in Intensive Care Units and Medical-Surgical Units as well as a Director of Nursing — to working with patients and caregivers in the community as a Case Manager. I helped educate families about dealing with health issues as well as caregiving-related issues. I coordinated health care services for patients and advocated for them.

What I’ve seen shocked me!

Most caregivers have multiple roles and complicated lives. Most female caregivers are busy with their multiple roles as wives, mothers, homemakers, professionals and/or entrepreneurs… in addition to caring for aging parents as well as disabled and sick family members or friends.

Many male caregivers are busy with their jobs and families in addition to running businesses. Stay-at-home moms and working moms are usually dealing with a lot of stress due to lack of time and/or money as well as being overloaded with so many responsibilities.

Single and divorced moms or dads have an even tougher situation when they do not have a very supportive partner, ex-husband or ex-wife — they often have to deal with family problems and issues alone.

Just like most of you, I’ve also dealt with a lot of stress, time and budget-related challenges. My life has also been very complicated.

Years ago, I went back to school; I got my Master’s degree in Biological Chemistry. It was tough because in addition to graduate work, I was also working part-time and caring for my son (I’m a divorced mom).

Even as an undergraduate student (I got my Bachelor’s degrees in Psychology and Chemistry after I finished an Accelerated Program in Registered Nursing), I was very busy. I was going to school full-time and working part-time to support myself and my (now ex-) husband (he was a law student when we were married and is now a partner in a law firm).

Of course, things got even busier when I became a mom. And my life became even busier and more complicated when I became my family’s caregiver…  

Family Caregiving Experience: Caregivers For Life Need to Be Calm, Patient and Grounded

Becoming My Brother’s Caregiver For Life… and His Advocate

On October 22, 2003, my life changed forever. I became the primary caregiver for our family.

My beloved brother, Ed, suffered a brain injury after hemorrhaging from a brain aneurysm. He had excellent nurses in the hospital — they were absolutely wonderful! But, I wanted to be able to care for him at home and help him with his rehabilitation.

It had been challenging for people to help him because after he came out of his coma, he responded primarily to my voice. Understandably, hospital staff members often thought he was “non-responsive.” Thank goodness for video. I’ve been able to share my brother’s smile and his ability to follow my directions.

I was happy when Ed was still able to respond, but I was desperate to help him improve his quality of life.

My brother was my best friend. We used to talk a lot about life, love and everything that mattered most to us. His kindness and wise words have made such a huge difference in my life. He helped me become a better person.

I thought I would never be able to learn to deal with such an inconsolable loss.

Ed was my rock — he was always there for me. He had always been supportive of me when I was going through trivial bad-hair days and bad relationship break-ups as well as many mistakes I’ve made in my life. I am thankful that he helped me become such a strong person.

After his illness, I became his rock! And I was so grateful to advocate for him and be there for him.

Becoming My Mother’s Long-Distance and Then Live-In Caregiver

For many years, my brother (Ed) was the primary caregiver for our mother who had heart disease and other health issues. After he became ill in 2003, my role as the family caregiver began.

Just like most daughters, my relationship with my mom was complicated. However, she was always very loving and supportive of me and my brothers. I was lucky to have her as a great role model for my life, work and business. She was absolutely dedicated to our family and was willing to sacrifice a lot for us.

After my brother’s illness in 2003, he had to stay in a sub-acute hospital neurological unit. Ed could no longer help our mother, but she was not ready to give up on her independence and was not ready to live with me in the San Francisco Bay Area, California; so, I was providing long-distance caregiving for her in Southern California and she also had a paid caregiver living with her.

My other brother was living with her, but he was often unable to walk; he’s disabled due to gout.  

The Family Caregiving Experience Can Be Rewarding and Joyful. But, It Can Also Be Stressful and Challenging

The Last Gifts to My Loved Ones

Unfortunately, the improvements I had hoped to happen did not happen…

After my brother’s stroke from aneurysm-related brain hemorrhage, he came out of his coma and started to get better for a few months. We were so excited and looking forward to him just getting better and better. He was very weak, but he was able to move his extremities all the way down to his fingers and toes. He couldn’t speak because he was attached to a machine that monitored his oxygen and helped him breathe. But, he was also able to do a “thumbs-up” and answer my questions in different languages that we both learned.

Although he was showing significant improvements for a few months, he started having some seizures and needed medication for it. He often struggled to stay awake after taking his anti-seizure medication due to its side-effects. Surprisingly, he usually managed to stay wide awake during my visits.

Our lives changed again when my mom was diagnosed with breast cancer in 2009. About one year after my mom’s surgery for breast cancer, her health started declining rapidly.

She was getting weaker and confused; her memory was failing and she was starting to have dementia. So, I moved her from Southern California to my place in the San Francisco Bay Area, Northern California.

After a few months of declining health, my mom stabilized and started to show some improvements.

Despite the extreme difficulties during the caregiving process, we had some good times. I do have to admit that quite often, I seriously thought I was going to die or at least lose my mind during the difficult times. But, I will never forget dancing with my mom. I will never forget her frequent laughter. She enjoyed America’s Funniest Videos and other funny television shows as well as game shows, such as, Jeopardy and Wheel of Fortune.

Sadly, my loving mom passed away in February 2012. A couple of weeks after her funeral, my beloved bother passed away in March 2012. Rest in peace, Mama. Rest in peace, Kuya Ed (Kuya means big brother in Tagalog, the main language spoken in the Philippines). I love you… I love you… I love you.

Although I did not know it when I started my caregiving journey, I was giving my last gifts to my loved ones.

Becoming Another Brother’s Primary Caregiver For Life

My brother (who is disabled due to gout) almost died in November 2016.

Just like most people living with “silent killers”, he was not aware his heart and his kidneys were failing. He was used to having excruciating pain from his gout — he was used to not being able to walk, not being able to hold a cup to drink and not being able do anything without help during his gout flare-ups.

But, not being able to breathe was something new. Luckily, he finally agreed to go to the hospital after we had a long discussion. He was too short of breath to walk to my car; so, I ended up calling 911.

The treatment in the emergency room saved his life. Diagnostic tests in the hospital revealed that he had high blood pressure and congestive heart failure, which led to his kidneys failing. He started kidney dialysis immediately. He currently lives with me and we recently completed training to do his dialysis four times a day at home. We recently started learning about the process of getting a kidney transplant.  We don’t know what the future will bring, but I provide as much help and support as he needs.  

Family Caregiving Experience: Caregivers For Life Can Still Live, Love and Love. They Can Still Live Life to the Fullest... In Spite of the Challenges.

My Family Caregiving Experience: Working From Home and Living Well As a Caregiver

My life is somewhat less stressful these days, but it’s still complicated.

I started an online business years ago in order to have more time and money to care for my loved ones. It allowed me to have the flexibility to travel often to see my brother in Southern California and also care for my mom in Northern California. It allowed me to take frequent time off from work without having to worry about financial issues.

In spite of the tough economy the last few years, having an online business allowed me to have the sense of security that I still would have been okay financially — even if I ended up losing my job due to my frequent time off from work. Despite the challenges, I was also able to continue working part-time as a Registered Nurse Case Manager.

The last couple of years, I had decreased my time working with patients and their caregivers to just two days a week. Due to my brother’s recent health changes, I have been on a long leave of absence. Moving forward, I will further decrease my nursing work and focus more on my work as an online entrepreneur.

Being able to work from home has been a great sanity saver. It allows me to have the flexibility to work whenever I want and take time off whenever I need. It allows me to spend more precious time with people that matters most to me.

As a caregiver, I learned that life is way too short and it’s too precious to waste a single moment. Tomorrow isn’t promised. So, never pass up the chance to show people how much you love them.

After my mom and my brother passed in 2012, I was so grateful that caregiving gave me a chance to give my last gifts to my loved ones.

Just like most caregivers, I still have multiple roles and a complicated life. The caregivers tips and resources I’m sharing in this site have been useful for myself and my family as well as my patients and their families.

I hope this site helps you save more time, money and energy. So, you can use what you save… on yourself, your loved ones and things that can truly enrich your life. I wish you everything you wish for yourself and your loved ones.

Allie Mendoza
Founder: YouRockYouCare.com

 

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