Tell me a bit about yourself!

My name is Amber Reyna. Currently I live in Connecticut, however I am originally from Ohio.  I am 31 years old, married with two beautiful children–my daughter is 9, and my son is 3. Currently, I am a full time student with a major in Human Services and a minor in Psychology. I am expected to graduate with a B.S. in 2016.

I also plan on pursing a Master’s degree in Social Work. Due to the inspiration I have received from being a young caregiver and facing many challenges with my grandmother, who was also younger than most individuals with her conditions, I hope to specialize in geriatrics. I plan on helping my future clients find services to keep them in their homes as much as possible, while also offering counseling services to their loved ones as well.

Additionally, I have begun to become interested in the policy making that is involved with the needs of our aging population. I also look forward to becoming a voice of advocacy as well. In recent years, I have worked as an urgent needs care coordinator and currently I work part-time as a social media manager and office assistant for a local home health agency in my home town.

How did you become the caregiver of your loved one?

Soon after my daughter was born in 2005, I found myself in the position of being the only one willing and able to help care for my grandmother after a number of other relatives had become too exhausted, and scarred physically and emotionally by the heavy load of caring for her. My grandmother had a stubborn, and feisty personality that not everyone found pleasant. Since my grandmother had helped care for me when I was younger, I could not imagine turning my back on her during her time of need. We would often say that we were born for each other. She had helped look out for me and cared for me in my time of need when I was young, and in turn I did the same for her.

How has, or has it, your relationship changed with the loved one that your are caring for?

Caring for my grandmother for the last five or so years of her life brought me closer to her in many ways. I was able to hear stories from her past and the family that I perhaps would have never have known had I not spent those years caring for her. I became even more in tuned with her needs and my sense of intuition skyrocketed. I also prayed a lot during those years. I have many wonderful memories of time spent caring for my grandmother along with my young daughter. My daughter, who was born almost 60 years to the day my grandmother was, also had a hold of my grandmother’s heart and they were extremely close as well. To this day, I often hear my grandmother’s voice in my mind whenever I need so reassurance or motivation.

How do you handle juggling school/work with caring for a loved one?

Things fell in place and happened for the right reasons I suppose. Once my daughter was born, I realized that I was pretty much working to pay for a babysitter and transportation costs for work and there was not much left over at the end of the day. Together my husband and I decided that with some sacrifice, that it would be better for our family for me to quit my job and stay home to raise my daughter. This decision ultimately led to me being able to help care for my grandmother. Although it was not easy with a newborn and then a toddler, I was able to transport and escort my grandmother to doctor appointments, to the grocery store, and everywhere else that our journey together took us to. Eventually, I did attempt to go back to work on a part-time basis. I worked at a local daycare where I was able to bring my daughter and set my own hours of availability. This helped because if my grandmother had an appointment scheduled, I was able to work my schedule around it.

my relationship with my husband was almost always put on the backburner

What is the hardest thing about being a young caregiver?

The hardest thing about being a young caregiver is the fact that there is not a lot of time that you have for yourself. As we had only been married one year when my daughter was born and I became the primary and sole caregiver for my grandmother, my relationship with my husband was almost always put on the backburner. I was exhausted constantly from caring for a young child and being on call 24/7 for my grandmother; I was often filled with anxiety and stress. I did not even have time to realize that I was, in some ways, also battling depression. I felt as though I were completely alone in the world many times, as I did not ever come across another young-adult grandchild in a similar caregiving position as myself.

I could count on one hand, with a few fingers remaining, on how many people I could actually talk to about what I was personally going through. I had zero people that I felt could completely understand all of it.  I also experienced difficulty in regards to being taken serious or truly heard with certain health care professionals regarding my grandmother’s needs. Because I was so young, (only 22 when I first became her caregiver) and I looked even younger, subconsciously I often felt as though certain providers did not truly understand my needs and concerns as her caregiver. From certain relatives, I was often doubted of my capability to adequately provide the amount of care my grandmother needed, yet everyone that was expressing doubt and criticism never offered any real assistance. In the end I proved that maturity is not dependent on age alone.

I felt as though I were completely alone in the world many times, as I did not ever come across another young-adult grandchild in a similar caregiving position as myself.

One of the hardest things about being a young caregiver is that you are not likely to be familiar with the needs of someone with dementia and multiple health conditions. You are not familiar with various medical specialists and foreign sounding medical terms and medications. I was learning constantly as I was caring for her. I quickly had to adapt to all of this or else I was not only failing myself, but also failing my grandmother whose life, in some ways, very much depended on me being able to understand all of this. Thankfully I was a fast learner, I had no other choice.

What is the most rewarding thing?

There are so many rewarding things that come from caring for a loved one. When you are caring for someone and so wrapped up in everyday challenges, it can be very difficult to see the light at the end of the tunnel. As my grandmother was only in her early 60’s, I felt as though this could possibly be my life until I was a grandmother myself. I was often sick to my stomach with stress and worry. However, aside from the moments we had spent together just enjoying the breeze on a sunny day or laughing together at our shared madness, many of the rewards were not realized until my grandmother was called home to Heaven.

I realized after her passing, that I had an emptiness inside of me. It was not just an emptiness of losing a loved one, but also a realization that I was no longer fulfilling a passion. I had worked so hard in fighting for her needs to try to get her the help she needed. I realized there were likely many others out there in similar situations like the ones her and I experienced. I realized there had to be a better way and that everyone deserved to have a voice that is heard and have a cheerleader on their side.

My eyes began to open to things that perhaps I also overlooked when I was caring for my grandmother. I was so desperate at times to find help for her that I may have not always been aware of our surroundings. While I did my best to find what I thought was a suitable environment for her at the time when her medical needs were too great to remain at home, years later when I went back as a volunteer, I realized how much my eyes did not see at the time I was my grandmother’s caregiver.

Do you feel like others, friends, family etc, understand your role as a caregiver? Why or why not?

I knew that there had been others in my family that had once cared for my grandmother. However, I did not feel as though those that were previous caregivers had a complete understanding of my grandmother’s updated needs. Her medical conditions, such as her dementia and COPD, were worsening as they typically do with such progression of diseases. Her needs were far greater than they once were. Having a young child at home to care for in addition to the constant on call responsibility for my grandmother was truly a never ending job.

I felt like I had to live in a bubble, if I went too far out of the bubble, it all could pop.

What are some misconceptions people have about young caregivers in general?

People in general have the notion that younger caregivers do not have enough life experience to adequately handle and manage the care of another person, especially a person in need of tremendous care who faces multiple challenges.

Do you ever feel like you are missing out?

I often felt like I was missing out. I did not feel as though I could go on vacation with my husband and child because I would need to stay close to care for my grandmother. My grandmother was in no condition to travel and therefore, going anywhere even an hour’s drive away was pretty much impossible for many years. I felt like I had to live in a bubble, if I went too far out of the bubble, it all could pop.

What’s the first thing you do in the morning?

to do listThe first thing I would do in the morning was make a mental list of what needed to be done for that day. What appointments did my grandmother have, did she need to go to the grocery store, was it garbage day, laundry day, and does she need her medication refilled, and so on. This was all in addition to what I needed to do to provide care for my household as well and all before I had a cup of coffee!

What do you do when you have 15 minutes of free time?

Does free time include showers? Even then, with a toddler in the house, I was not always guaranteed such “free time.” I remember driving through the park or going out to sit at a small lake and just gather my thoughts and try to remind myself to keep the faith and stay strong.

What motivates you?

What motivated me during the years as a caregiver, was knowing that my grandmother only had me to depend on. As much weight as that was to carry as a young caregiver, I really used that to keep pushing forward. What motivates me today is knowing that through all the challenges my grandmother and I faced together, that we pulled through it all. I am motivated today by the struggles we overcame to help those in similar positions or worse find a better way.

Where do you see yourself in the next ten years?

It has been over five years now since my grandmother has passed. Since her passing, I have had another child. Something I never thought I would be able to do because I was so involved with caring for her. My marriage has gotten stronger, although we still have our own things to work on, life in general has continued to evolve for the better.

I have gone back to school and I am working towards ultimately obtaining a Master’s degree in Social Work. I plan on offering counselling services to older clients in need of assistance and their loved ones. I also would love to open up my own agency where I can help connect clients and their caregivers to resources to make life easier and more enjoyable for everyone. Additionally, I see myself advocating on state and federal levels on behalf of my future clients and others in our nation in need of positive change.

What’s are some resources or tools you’ve found to help you with caregiving?

When I cared for my grandmother, we lived in Northwest Ohio. At that time not many resources were available. My grandmother was younger than the average client that needed care, or her income level was just slightly over the limit for other resources. In fact, when she was released from the hospital after being in intensive care and unable to walk even with her walker, there was no discharge planning done to make sure she was going to receive any type of care that she so desperately needed. Her pain medication was not even called in to get filled! The hospital was aware that my grandmother was moving out of state upon discharge and therefore washed their hands from any responsibility to help my grandmother. By the grace of God and angels at the airport, we eventually managed to bring her to next destination.

It was not until I realized that we truly had no resources that we were in so dire in need of, did I call 911 and got her to the emergency room. The social worker there did all she could to connect us to services, but her hands were also tied because my grandmother was not diagnosed with anything that required hospital admission. After spending a day fighting with the doctors to keep her in the hospital for evaluation, with my grandmother lying on a hospital bed in the hallway of the emergency room, we were connected with the name of an elder care attorney who ended up being our lifeline in the long run. By the end of that evening, my grandmothers vital signs dropped and she was once again back in intensive care, not even 24 hours after they were going to send her back home with me and no resources what so ever.

If it were not for that social worker and elder care attorney I do not know how things would have turned out.

What do you wish you were told before you became a caregiver?

I wish I were told that my grandmother’s dementia and other medical conditions would decline much sooner than expected. However, I don’t know if anyone could have predicted that. I also wish I knew how to get more help for her the both of us, yet I do not think there were actually resources in that time and place for her based upon her age and needs.

What advice would you give to other caregivers?

I would say it is so important not to be intimated by medical providers and related professionals. You have to speak up for the one you are caring for and for yourself. If you do not speak up for you, who will?

If there are resources out there that can help, accept the help! You will be a better caregiver for the one you are caring for, and a better person for yourself and your loved ones if you allow yourself to step aside from time to time and regroup. Seek out help, don’t give up, and see a counselor if you have no one else to talk to you about what you are going through.

Perhaps consider keeping a journal, at the very least. Sometimes just getting your thoughts and worries out in the open and off your chest, even temporarily can truly help.

What’s your best piece of advice for life in general?

Nothing lasts forever. Before you know it this very moment in your life will seem like so long ago. Enjoy each moment for the better or for the worse, let it all soak in and embrace all that comes with it. The hard times in life are there to bring us closer to one another and to learn valuable lessons from. The best times in life are there to reward us. With hard work, comes great rewards, you just need to believe in yourself.

In ten words or less, what has caregiving taught you?

That I am stronger than I could have ever imagined.

If you had something you would change in your caregiving experience what would it be?

I would say if I had the power to change the resources that were available to help us during the time I was caring for my grandmother, I certainly would have done so to allow my grandmother to have a happier and potentially longer life than she had. I believe having those resources could have allowed her and I to have enjoyed so much more together. Perhaps she would still be here today.

About Krystel Edwards

Profile photo of Krystel EdwardsKrystel Edwards is a senior English-Creative Writing major at The City College of New York. In addition to interning at The Caregiver Space she is also an Edward Koch fellow which is a fellowship that focuses on public policy and advocacy. She is in the CCNY Honors program as well as the Publishing Certificate Program. Throughout the years, she has participated in a variety of student clubs such as Strive For College where she served as a mentor for low-income students. Currently, she is volunteering at Isabella Geriatric Center, community-based organization in Washington Heights that aids in providing a home, rehabilitation, and excellent care for the elderly. She looks forward to joining the 2015 Teach For America Corps after graduation and learning more about how to have a positive influence in low-income communities.

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