My Life: Mimi L

My Life: Mimi L

What’s keeping me up at night?

Worry about finding a good fit for my son in the community. Somewhere where he will be accepted, appreciated, and feel good about working for. It’s a hard struggle.

Worrying about my dad. When he gets the hiccups at night. His really really bad teeth. The fact that he runs out of breath while he talks. How much longer is God going to let me keep him? How to keep from reacting when he pushes my buttons.

What am I really proud of right now?

My son. How much joy and unconditional love I get from him. How he makes life fun. Learning more about Autism Spectrum Disorder so that I can help others understand my son more.

What keeps you going when you feel like giving up?

My son. The joy and love that I get from him keeps me going through all of it. The bad, the ugly, the wonder, the joy, the huge love that I feel for him, all keep me getting up every day.

Mimi Leow

My Life: Colleen R

My Life: Colleen R

What’s your life really like?

Really, day to day, nothing to write home about. I am blessed that my husband requires only a small amount of care during the day and my job is close by. So I can run home at lunch and feed/toilet him if necessary. Then back to work, where people complain about their husband not being good enough for one reason or another and I just want to smack them.

Friday comes and I have begun to measure that time so that some of it is satisfying to both of us, not just him. That was a huge step for me since most of the time I was worried about entertaining him during all of my spare time. This is the quickest way to experience burn out.

Now I take lessons, I plan adult activities for myself, etc. So in that respect things are better. Since the stroke in ’09, he has learned to repeat a few phrases but still remains unable to communicate anything but essential needs.

What’s keeping you up at night?

Mostly the need to communicate with someone, anyone, anywhere, about anything. I’ve tried a multitude of different avenues. Most are disappointing to say the least.

I plan to not be alone someday, but there is no way of knowing when that will be. Until then I live with a person who barely resembles the man I was once in love with. Instead I see a person who needs me more than I have enough energy to serve. But everyday I do, and every night I wonder how much longer or will I die before him from exhaustion.

What are you really proud of right now?

Right now I am really really proud that we are mostly out of debt. I’m proud of my children and my grandchildren and that we have for the most part, a good relationship. I’m proud that I can know that I am doing what I am supposed to be doing no matter how stressful or how discouraged I become.

What keeps you going when you feel like giving up?

Humor, Humor, Humor. I love standup comedy, I love to hang out with funny people who can help me laugh at all the problems and even laugh at myself.

Music, as much as possible. I retreat into songs that have deep meaning and that were written during times of sadness but speak of better times to come.

Reading about people who contributed greatly to society against all odds.

Monster movies.

Ultimately I pray and ask for forgiveness and for a heart of thankfulness. Both of which I have been given abundantly

My life: Catherine F

My life: Catherine F

What’s your life really like? So many caregivers are out there feeling like no one understands what they’re going through…but we suspect quite a few of you are going through similar things.

February 3rd marked a year since my husband passed away.

Life has been very different – I don’t have the daily battle on my hands with so many things, tube feeding via peg tube, bathroom messes, driving him to his appointments (he could no longer drive), arguments, dressing, giving pills, being bashed behind my back. Being with him in the hospital, doctor’s appts. (where I could not tell the truth because I had to go home and be with him). Therapists were under the impression that he was doing better than he was – he could bullshit with the best of them. His walk and his talk was fairly good – but his perception of things, his abilities to do things was never the same (stroke in 2013 at 64 yrs old).

What’s keeping you up at night?

While caregiving I had to be a light sleeper just in case he needed to use the bathroom instead of the urinal.

He would sleep walk quite often – he would rearrange things in whatever room he ended up in. Almost burned up the house heating up his barley bags in the microwave – had them heating up for too long – he could not use a heating pad because he would burn himself and had previously.

Or in case anything else came up overnight.

What are you really proud of right now?

How much I learned about nursing a patient, being a caregiver. Even showed nurses in the hospital how to handle hooking him up to the feeding tube.

I learned to read his body – knew when he was coming down with pneumonia or that his energy level was down – I perceived a lot about him from being with him every day.

I was mostly responsible for keeping him alive for the several years of his life.

Hanging in there until the end – I even considered divorce because of how mean and nasty he was to me – at least while receiving acute care at two different care facilities (due to silent aspiration pneumonia numerous times), he treated staff, his daughter, and best buddy the way he was treating me – amazingly, they asked why he was doing that, never considering that was the treatment I always got at home with him, he was now sharing his meanness with everyone else!

Knowing I could not change him – he began drinking whiskey (he was a former alcoholic) to calm him from the ‘familiar’ voices he was hearing.

I discovered that I could work from home – no matter what interruptions I experienced, I could stay focused and get my work done via remote connection to the office.

What keeps you going when you feel like giving up?

When considering a divorce I had a discussion with my Pastor – he understood what I was going through on the caregiving – he had cared for his Mother during her decline. I don’t know if it was as one on one as mine was, but he understood the mean and nasty aspects of the one being cared for.

My Pastor asked me if I still loved him – and I had to admit that I did. That’s why I continued to hang in there.

And I am a person who has Hope – a lot of hope. Which also involves Trust in God, Jesus, and the Holy Spirit.

Also, being able to talk to friends who understood what I was going through. Being able to share, being understood. Caregiver websites have helped through the years also.

Thank you!

Catherine L. Ford-Barbiero

Savor Health helps cancer survivors heal through nutrition

Savor Health helps cancer survivors heal through nutrition

When Susan Bratton watched helplessly as her close friend succumbed to a brain tumor, she knew what she had to do–launch Savor Health.

Savor Health offers nutritional counseling, curates nutrition research, and provides home-delivered meals to people from first diagnosis to survivorship.

Bratton spent 20 years as a healthcare investment banker on Wall Street before considering this venture. “I left my job in 2010,” she said. “But, I had to delay the official launch of Savor Health because my father was diagnosed with cancer. He made a remarkable recovery.” Her company has since made remarkable growth by addressing the shortcomings of the medical community.

“The medical community’s answer to weight loss while treating cancer was to eat anything with high calories,” Bratton said. “They said ‘eat what you want’.” But, she realized that proper nutrition improves cancer issues like side effects of cancer treatments.

Bratton said she saw a big change since her company was launched in that nutrition really does matter. Bratton predicts further expansion of Savor Health into the diabetic market.

“Ninety percent of the people we serve are caregivers, not patients,” Bratton said, explaining that patients are so tired with treatments; it’s left to the caregiver to plan meals. “Savor Health is a tremendous resource for caregivers,” she said.

Bratton said Savor Health has helped many people survive cancer through nutrition counseling and planning. “We had someone who underwent cancer treatments who is now a survivor. He believes our meals helped him,” she said. “He sends us photos of his puppies. We consider him part of the Savor Health family.”

An elderly woman was being taken care of by her husband until he started developing health complications of his own, Bratton said. Their daughter, who is a busy career woman, contacted Savor Health to help in delivering meals and in counseling.

During diagnosis and treatment, more people need home-delivered meals, but as they become survivors, they stay for ongoing counseling relying less on home-delivery service because they know how to plan menus, according to Bratton.

“Our mission is to help cancer survivors and their caregivers by getting nutrition off their plate when caring for themselves or their loved ones,” Bratton said.

Road Scholar Caregiver Grant Recipient Shares the Impact of Her Experience

Road Scholar Caregiver Grant Recipient Shares the Impact of Her Experience

As a caregiver to her 46-year-old daughter who is fighting the final stages of Multiple Sclerosis, Road Scholar participant Dessa S. was in need of respite. She has spent the majority of her time in the past three years looking after her daughter and visiting her each day in Hospice care.

Years before, her daughter had visited Naniboujou Lodge on Lake Superior, and wanted very much for her mother to see this beautiful place for herself. With that in mind, Dessa applied for a scholarship for the Road Scholar learning adventure, Lake Superior from Historic Naniboujou Lodge: Fur Trade History, Culture, Walks.

“I don’t have a lot,” Dessa explained. “By the time I arrived at Naniboujou, I was told that I had been given a Caregiver’s scholarship and had been given a single room. I thought, ‘Oh my goodness, how wonderful!’”

Dessa could not have experienced the beauty of the lodge — or afternoon tai chi sessions, artist-led watercolor demonstrations and interpreted led nature walks — had she not been the recipient of a Road Scholar Caregiver Grant. And though the Caregiver Grant provided an incredible opportunity to enjoy a Road Scholar learning adventure, Dessa nearly didn’t make it to her program.

“The night before the program started, I went to see my daughter and she had been quite ill — we knew this time was coming,” explained Dessa. “I said that I wouldn’t go, but she wanted me to experience Naniboujou. She said, ‘You have to go and be my eyes.’ I sat with her that night and listened to her breathing, and waited for what I thought would be her last breath. Then I said my goodbye, and off I went.”

With a brave heart, Dessa arrived at Lake Superior for her Road Scholar program. She informed her Group Leader that she would need to make a special phone call each night.

“I called my daughter every evening. The caregiver would hold the phone up to my daughter’s ear and I told her what I had done during the day. I did that every night, and at first, the caregiver would have to relay any responses that my daughter made. After a few days, my daughter was able to respond on her own and ask me questions. So it was wonderful for both of us.”

Dessa had no lack of stories to share with her daughter each day. Morning tai chi sessions and watercolor demonstrations from local artists reminded her of treasured hobbies that she had set aside before becoming a full-time caregiver. She was also able to connect with fellow Road Scholars during nature walks and afternoon free time.

“Road Scholar’s a treat because sometimes I meet someone like me,” said Dessa. “On this program, I I was pleased with all the people I met, and they understood my issues and could gather that I didn’t have a lot of energy to chat. I was grateful to have that leeway. It felt like the right place to be. Everyone understood what I was going through.”

Since returning from her rejuvenating experience at the Naniboujou Lodge, Dessa has enjoyed sharing stories of her Road Scholar experience with others.

“My favorite part was the demonstration of plein air painting — I’m a watercolorist. In my daughter’s decline, I have given up watercoloring, I’ve given up writing. I have even given up tai chi because there’s too much going on,” she explained.

“And I came back inspired to get back to watercolor again. I came back inspired to do tai chi again. I came back fully energized to be with my daughter on her journey — on our journey. This experience was very life giving to me and life giving to her. She’s my only child, and she told me to go — so I went. The program was just wonderful.”

To learn more about Road Scholar’s Caregiver Grants, please visit www.roadscholar.org/cargiver

Jeff & Evelyn

So many professional caregivers become part of the family — that’s how Jeff and Evelyn are. When Evelyn had a stroke and was unable to continue caring for him, he was heart broken. Evelyn recovered and was able to continue caring for him. He even moved in with her — a situation they’re both thrilled with.

Evelyn and Jeff are supported by the care team at Caregiver Homes.

Edra & Alice

Edra lives with her daughter, Alice. Alice is her mother’s 24/7 caregiver and has been for the past few years.

Alice’s advice: don’t try to parent your parent – always treat them with respect and help them be themselves.

Alice has coaching, support, and financial assistance from Caregiver Homes.

Bonnie’s caregiving story

Bonnie Danowski shares her experience caring for her husband, who has MS, for the past 42 years. Bonnie created this amazing video diary using MyCounterpane.

MyCounterpane is creating a living library of emotional moments, providing people with a sense of perspective, support, and hope. MyCounterpane’s first community is one for patients and caregivers with MS, but you don’t need to be affected by MS to join. You can sign up here.

Carmen & Carvilla

Carmen finds that keeping her mom, Carvilla, at home helps her mother maintain her dignity and independence.

Carmen gets training, support, and financial assistance through Caregiver Homes.

Meet Amber: Wife, mother, caregiver

Meet Amber: Wife, mother, caregiver

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.

I started taking care of my mom while I was in HS

I started taking care of my mom while I was in HS

Nicki is a young millennial caregiver for her mother who has liver disease and osteoporosis. This is her story.


The summer after I finished high school, my mom got sick. At first, it was a bacterial infection. Then, it seemed to always be something — asthma, bacterial infections, anything. She has had a liver disease and osteoporosis since I was nine, and this led to a weakened immune system. She laid around in bed all day, and watched movies, calling in sick from work, and often wanted me to stay home as well. She would often argue with me over what day it was. She had good days and bad days, but I started to believe that she was entering into the early signs of dementia like her mother and grandmother had faced. Thankfully, the local university had offered me a full scholarship, so I went there for my undergraduate degree, and lived at home to help. I am an only child, and her siblings were not willing to help.

After I finished college in 2013, my mother’s condition had gotten worse. I had decided to work at a summer camp the summer after to make some extra money, but quickly realized that was a mistake. My mom fractured her back while I was gone. She started taking pain medications for her injuries, which got her kicked out of the rental house where we were going to live when I came back. When I returned from working that summer, I had to find her a place to live immediately (I’d begged the landlord to let her stay until I returned). I started graduate school that fall, but her condition continued to worsen. I was not making enough money as a teaching assistant to support us, and also could not balance graduate school while also taking her to doctor appointments. She got in a few car accidents trying to drive around the unfamiliar town which led to  more fractures and more medications. I spent many tired nights trying to do homework, or grade papers for work in the ER. Thankfully, the hospitals usually had wifi which made the stay a little bit easier! After I finished my first semester of graduate school, I moved us back to my hometown to find work, and be near familiar doctors, my church, and friends to help.

However, despite the fact things started to look well, the situation unexpectedly turned dire. Last April, after I’d been working for a few months in my hometown, I found my mom in bed not responsive. She was breathing, but could not wake up. I quickly called 911 for EMS came to take her to the hospital. After a few days, she thankfully started to come back into consciousness. She ended up spending 11 days in the hospital and 8 days in rehab, begging me to take her home every one of those days. My mom had had a stroke, her body was almost septic, and she lost the use of her right arm. I was engaged at this point, and my fiancé would visit, but he did not understand why I had to go to the hospital every day after work. He would still come keep me company, and do anything to help. My best friend would visit as well, bringing me food and comfort. (I just recently found out that she had watched her grandma die in that same hospital and hated going back, but did it anyways). Difficult times really do show you who your true friends are, and I was grateful!

Difficult times really do show you who your true friends are, and I was grateful!

When my mom finally came home from the hospital, she could not even stand up on her own. My fiancé helped me set up her room to make it easier, and my best friend would come over during my work days to help her, and clean my house. Did I mention my friends are incredible?

Still despite the gains, caregiving eventually led me to lose my job in May, and my fiancé to break up with me in June. I did not like my job, and had been looking for many months for a new one. When I couldn’t find one in North Carolina, I started looking for jobs in Florida where I had distant relatives we could stay with for awhile.

The day before I was supposed to move, (also the day I had planned to get married) I once again found my mother unresponsive. I called the EMS, but she woke up just enough to be confused by all the commotion, and cried out “no! no!” refusing  to go. Since I did not have power of attorney, they were unable to take her. A kind policeman told me how to file an involuntary commitment form at the courthouse, which I did. My friends stayed at the apartment with her helping me pack and clean. When I got home, I had to watch my mom be taken from my home in handcuffs, and taken to the hospital in the back of a police car. She hated me for it, but the doctors told me she would have died if I hadn’t done it. The next morning, I went to visit her. She told me she hated me. I’m very glad she doesn’t remember any of this.

I was unable to take her out of the hospital, but had no where to live in NC, so I went on to Florida with my relatives. After a few weeks, I had a stable job. After a few months, I was able to save for a very small down payment, and buy a small house! My mom stayed in cheap hotels using her savings after the hospital until she could join me in my house. I’m working on getting power of attorney and becoming her health care surrogate now. Through it all, I believe that my faith in God and my friendships have become much stronger.

Meet Brittany

Meet Brittany

Brittney is a millennial caregiver. This is her story.

My name is Brittany and I’m a 27 year old former caregiver. I was primary caregiver to both of my grandparents during the first couple of years post-graduate school. I am a social worker in Georgia and love the field I work in. It’s challenging, but like to think it prepared me more for being a caregiver.

I moved in with my grandparents the month I started graduate school. It was a tough decision, and I was slightly embarrassed to be in my early twenties, moving in with my grandparents. I made this decision because I needed a place to live that wouldn’t cost much rent-wise and was close to my college. My grandparents welcomed me with open arms. It was actually kind of funny, when the three of us first began discussing the prospect of me moving in, my grandma said “Just come live with us” without first speaking with my grandpa. It’s a good thing he didn’t kick us both out! 🙂

I had never lived with them before, and to be honest, hadn’t had much contact with them throughout my life. This isn’t their fault, or anyone’s fault really. My mother was a single parent providing for my brother and I. We lived place to place quite often. Because of that, there was initial discomfort when I first moved in with my grandparents. I wasn’t sure how it was going to work out, and many days I didn’t think it would. It took a while for us all to adjust to one another, but soon a beautiful relationship developed between us three. I went from calling my grandmother  “Gerri”, to “Grandma Gerri”, to just “Grandma”. They were no longer just my grandparents, but also people who I grew a strong, deep love and appreciation for. My favorite part of the work day was coming home to watch CSI and The Waltons with them. I cracked up all the time because of their little debates and witty quips. My grandfather was notorious for saying such funny things. He was a quiet man with a strong sense of humor.

They were no longer just my grandparents, but also people who I grew a strong, deep love and appreciation for.

However, three months after I graduated with my Masters and started working full-time, my grandmother was diagnosed with oral cancer and stage 4 lung cancer. From there the chemo treatments started, radiation, many trips to the doctor, and errands. Her heart broke, my grandpa’s heart broke, and mine did, too. I questioned myself daily. I never knew if I was doing enough or doing it right. I wish someone could have prepared me for the amount of guilt caregivers experience. It truly is ironic, the ones who do most are the ones who feel least impactful.

I was resentful All. The. Time. I needed help, but wasn’t too good at asking for it. When I did ask, it was provided by others on a very short-term basis. I remember feeling as if others had a mental checklist like: “went to visit this month…check,” “called to check-in this week…check,” etc. I ran out of annual leave from missing so much work that there was a time I went without pay in order to be there. I don’t want to come across as bitter because for the most part, now being out of the experience of caregiving, I see things differently, and have more peace.

My grandpa did a lot to care for her too, yet struggled with some things due to his age. I often wondered if he felt I was stepping in too much. I know there were times when she felt that way. One time specifically she had asked for me not to go to an oncology appointment with her. I was shocked and hurt. Crying, I asked why she didn’t want me to go. She responded, “because when you do go, the doctor doesn’t speak to me, he speaks to you. He doesn’t look at me, he looks at you. I need him to speak to me, and to hear me”. I see now that what she was begging for was independence and control. She needed to be heard. I can imagine she felt that others were shuffling around her making her major life decisions, which is dehumanizing.

Instead of keeping my original plans to move out when I graduated, I stayed with my grandparents during this new season of life. I knew I had to be there because they needed me, and I needed them.

Seeing my grandma decline was the most difficult experience I’ve had in my life. I couldn’t process how someone I love so much was suffering so much, and there was nothing I could do but pray. So that is what I did, I prayed for the specific areas of her body to be healed. I spoke healing and restoration into her body. I fervently, and desperately prayed that God would perform miracles, as He has undoubtedly done before. And then I sat with her, and tried to just be. I would try to let the racing thoughts and fears go just for a few moments of quality time with her. I would eat Lemon pound cake with her. Sing “In Christ Alone” with her. Dance on Christmas day. Plant in the Garden. All of these moments trump any hardship that I experienced in my caregiving. These are the moments that will live on.

My grandmother passed away March 18, 2013 in inpatient hospice. She stayed there three days before she passed. I didn’t think I could go on, but surprised myself that I survived it. Anticipatory grief is truly a cruel thing. I found myself grieving more during her life that when she passed. Honestly, when she passed, I felt relief that she was no longer in such turmoil and pain. Instead, I worried more about how my grandpa would make it without her.

When my grandpa became a widower, I stayed a little longer to help him in the ways he needed. He was pretty self sufficient and did not require as much assistance. I felt enormous guilt about leaving my grandfather to move into my own home 8 months later. I knew I had to start my own life, but always questioned (and still do) if this was the right decision. My grandfather and I had Sunday gatherings each week. I would usually bring him lunch and we would spend time together. I would call and check in with him often. I would also go grocery shopping or pick up any prescriptions he needed. I’m so proud of my grandfather for living capably on his own the best he could. Last September, my grandfather passed away from a random hemorrhaging on the brain. The days and moments leading up to his death were extremely difficult. I grieved a lot, and continue to mourn his passing.

I am forever indebted to the love my grandparents showed me.

I am forever indebted to the love my grandparents showed me. They were the ones who truly gave the care. I have come out of this experience a new woman who knows what the true meaning of life is: to love others. I have been humbled and grown in patience. I want to advocate for those who have who need advocating for.

I will always look for ways to commemorate their impact on me. I am getting married this September. I will be honoring my grandparents by having their handprints on my heart.

Want to know more? Be sure to read Brittany’s other posts.

Meet Tyler: juggling school and full-time family caregiving

Meet Tyler: juggling school and full-time family caregiving

Tyler is a young millennial caregiver that takes care of her grandmother. This is her story.


Tell me a bit about yourself!

I’m 22 years old, and I grew up about 40 minutes from Chicago. I moved from a busy town to the country with my mom, and stepdad about four years ago. I am currently attending a junior college for Criminal Justice, and I have one more class to go until I get my Associate’s. I haven’t decided if I want to go on to a four year yet, or if that is even possible for me.

How did you become the caregiver of your loved one?

I became a caregiver three years ago for my grandmother when her husband decided that he could not care for her any longer and was going to put her into a nursing home down in Florida. My mom did not want her to live in a nursing home because she is a nurse and has heard many stories of neglect and abuse in homes, especially with Alz/dementia patients.

You grow and change with every obstacle life throws your way and you mold into a new person.

Tyler and her grandmother

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

My relationship with my grandma has changed drastically since I started caring for her. Three and a half years ago I had broken up with my ex fiancé because he was addicted to heroin. And after many relapses and fights I called it quits. I was devastated at the time and mainly stayed in bed all day for months. When my grandma became my responsibility I was heartbroken and deeply depressed. I didn’t give her the attention she deserved, and I was a self-centered kid still. But the depression ended and lessened with time as those things do, and I started to enjoy taking care of her and helping her. For the first time in my life I was spending time with her for more than a few days a year. Her and her husband retired when I was young and moved to Florida, so I did not see her often. I can’t say I even remembered her voice before she got sick. But now my grandma Margaret is my best friend.

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

Caregiving is my only job. I take one to two classes at a time when I can so I can be home when my mom is at work. My grandma lives with us and when my mom works Monday-Friday I am caregiving, I have one class that my stepdad stays home during so I can attend. I guess the truth is I could get another job but if something comes up with my mom no one would be able to watch my grandma, my stepdad reluctantly does it twice a week for two hours. The place my mom has worked for 20+ years is shutting down soon so nothing is certain anymore. I feel it would be selfish to clutter my schedule any more than I already do with hanging out with my friends a few times a week. It would just cause unnecessary stress for my mom.

What is the hardest thing about being a young caregiver?

I think the hardest thing about being a young caregiver is that I’m 22 and I have nothing to show for it. My best friend is 24, has a Master’s Degree, and just passed all four sections of the CPA in one try. I feel like a loser all the time. I graduated high school almost 5 years ago, and I don’t even have a degree that should have taken me two years to achieve. I guess I feel like everyone is moving forward and I am frozen in time. I have classmates getting married and already on to baby number two, and I spend most of my days at home.

The hardest thing about being a young caregiver is that I’m 22 and I have nothing to show for it.

What is the most rewarding thing?

The most rewarding thing about being a caregiver. It’s the little things, like waking up and walking downstairs to see my grandma’s smiling face happy to see me and start her day. Hearing her laugh, seeing her eat her food that I make her. Knowing she is as healthy as she can be with all her issues, and knowing no one else knows her body language, medicines and doses and how to do my job as effectively as I can. She is truly my life.

Tyler and her grandmaIf you had something you would change in your caregiving experience what would it be?

If I could change anything about my caregiving experience I would change how my Aunts and Uncles have reacted to her being sick. We all live within five miles of each other but no one comes over to see her unless it’s her birthday or a special occasion. I just wish people would have more love and respect for their own mother than that.

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

When I have time to myself I am usually doing something with my fish tanks. I have 6 betta fish and that is one of my only hobbies. Having clean tanks and healthy, happy fish makes me happy. I find peace when I watch them swim and that is something that I do for myself. They also help ease my insomnia usually, except for tonight, I haven’t been to bed yet and it’s 5:30 am.

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

Ten words or less, what caregiving has taught me. Absolute patience and understanding.

What advice would you give to other caregivers?

My advice to other caregivers would be to try not to get angry or hurt when your LO (loved one) doesn’t cooperate. Step back and breathe, don’t argue. Imagine how they feel, are they confused or in pain? They are suffering and need your help. If you do get frustrated walk away for a few seconds (if you can) and come back.

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

Best piece of advice for life in general? I would say that no matter how difficult things get or how many times you have felt extreme heartache or disappointment, life goes on. You are stronger than everything that has ever tried to destroy you. You grow and change with every obstacle life throws your way and you mold into a new person. I would say just make sure you become a better person. It’s easy to be negative and mean when your situation is not ideal. But if you have to force yourself to be kind, do it! Don’t judge, and always try to say something nice instead of something negative. Let go of hate, because it only destroys you. Forgive people who may not deserve it because you deserve peace, and you will never achieve peace if you hold on to negative emotions.

Meet Lisa

Meet Lisa

Tell us about yourself

I’m a 46 year old female who worked as a former secretary. I moved from Florida back to South Carolina as my parents started aging, eventually, I had to move in with them. I did have the opportunity to take an online medical transcription course and work briefly. I have a brother who lives in Orlando and is supportive and helps as he is able to.

Besides “caregiver,” what other identities do you have? (ex. Parent, gardener, manager, dog-lover)

I’m a avid antique doll collector, cross stitch, read and enjoy baking. I also have a very sweet cat who is 15 years old.

Who had the biggest impact on shaping who you are today?

My mother, aunt, and a good friend. They were and are positive influences and understanding.

Lisa and her dadWhat’s a personality trait you have that you really value?

Compassion is an admirable trait also in others as some people are not so understanding in some situations.

What’s your mantra?

Not sure, maybe be grateful for the friends and family that actually care and things in your life that make it worthwhile.

Who are you caring for? What is your caregiving story?

When our caregiving journey first began, it was pleasant and pretty cool. Started commuting from my apartment visiting both of my folks helping with bringing dinner and doing laundry, etc. One day at work, I got a phone call saying my mom needed emergency surgery and eventually ended up having to leave work permanently. Her health condition declined off and on from then on for several years. I ended up moving back in with them to help more. My dad and mom did okay for a while but he had also had heart attack, etc. So, it took both of us as she eventually ended up in a wheelchair and bedridden. We could not have done it without home health, their doctors, and staff. Even nursing facilities and hospitals were helpful for advice on taking care of both of them. It was also encouraging as was taking a medical transcription course. Think the hardest thing was when we had to get hospice for Mom and things kind of went downhill from there. Just thought she was going to be around for a little longer. As good to her as they were, it was uncomfortable but better for her to be home. I am grateful to still have my dad, although, he is aging, a little Alzheimer’s and has a walker now. For 88 years old, is not bad. Have a brother who is a long distance caregiver, but at least have some moral support. Although, it is a little stressful, I am hoping others can hang in there as there is a lot more online resources available for those in rural areas. Sometimes we can even find friends or neighbors that have the same in common.

What was your greatest caregiving lesson?

Learning to not be so selfish as our loved ones are not around forever.

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

It is a commitment that you need to make sure you are prepared to stick with for however long it takes.

What advice would you give to other caregivers?

It is emotional and there are situations that you will not prepared to deal with, but have to hang in there.

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

Try to make the best of it, especially if you still have your health, family, and a few friends.

What’s been the hardest part of caregiving for you?

It kind of stressful and not easy seeing parents age, kind of losing touch with and not seeing friends.

What’s the most rewarding part of caregiving?

Being able to do something that actually matters and helps other people.

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

Take a few minutes to wake up and adjust my mood for the day.

What’s the last thing you do at night?

Unwind by taking some time to relax.

What keeps you up at night?

Stress over health concerns among other things.

What motivates you?

Nice and friendly people that actually care as you can learn from them.

What’s the best tool or strategy you’ve found to help you with caregiving?

Respect their feelings.

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

Patience, responsibility,and how to deal difficult situations with respect for the feelings of the ones you are caring for.

What’s your best habit?

Do the best you can do.

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

Read, cross-stitch, keep in touch with friends or family or watch TV.

What do you think makes a life well lived?

Try to make the best out of whatever situation life hands you.

What question do you hope an interviewer would ask?

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

It would probably be not having so many health issues that are somewhat preventing me from providing better care for my dad. It just doesn’t seem fair, he deserves to receive care just as good as my mother received but at least he is nice enough not to complain.

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

Maybe not having the physical challenges that developed in the process of this journey as it effects the quality of care you are able to give.

 

Meet Keely

Meet Keely

I am a Polynesian woman, wife, mother & grandmother(Tutu) who is now a transplant of the Eastern Shore of Maryland. I stopped working at my job of 15 years in 2012 to be a caregiver to my 9 year old grandson, Xavier whom my husband and I adopted in 2009. I have a positive attitude most of the time

Besides “caregiver,” what other identities do you have? (ex. Parent, gardener, manager, dog-lover)

Gardener, dog-lover, cat-lover.

Who had the biggest impact on shaping who you are today?

Xavier

What’s a personality trait you have that you really value?

I love to laugh.

What’s your mantra?

Just for today, I am happy.

Who are you caring for? What is your caregiving story?

My 9 year old son, Xavier.  Xavier was born in 2005, my  17 year old daughter did not tell me she as pregnant until she was 5 months along.  She would come home drunk repeatedly.  After extensive visits toKeely with her family Kennedy Kreiger Institute, and other health care providers, such as psychologists, psychiatrists, occupational therapists, therapists, etc.  Xavier is currently diagnosed with:  Fetal Alcohol Spectrum Disorder, Reactive Attachment Disorder, Intermittent Explosive Disorder, ADHD Hyper activity combined type & Sensory issues.  He started taking medications to regulate his behavior, however his body has a difficult time tolerating the meds therefore causing Xavier to be expelled from School in the first and second grades.  Kicked off the bus. The public school system is not equipped to handle Xavier.  They would call me everyday while I was at work from 2008 to 2012.  I would meet with them, with negative results. I had parent advocates, attorneys and other agencies helping me to no avail.  Xavier was placed in a behavior management school with less children, however he would be placed in a locked time out room which caused his behavior to escalate. Started monitoring refined sugar in his diet, as well as dyes and going organic when possible.  2012 Xavier was placed on Home and Hospital by the Judge at mediation.  The tutors are required to come to your house and teach child for 2 hours  a day however, they would arrive at 3pm when Xavier would be tired so that didn’t work.  Bottom line, they wanted Xavier in residential treatment at 6 years old. His Psychiatrist and Therapist both STRONGLY DISAGREED WITH THIS DECISION. So I quit my job and started homeschooling Xavier and took him to therapy 2x a week. 2013 enrolled Xavier in behavior therapy that he attended every 2 weeks which was a 3 hour drive to Baltimore. Changed his meds.  Sept 2013, pursuant to Kennedy Kriegers Request, placed him back in Public School….same outcome.  by Oct 31, 2013 I was back to homeschooling again.  Discontinued our care at Kennedy Krieger and could not find any Psychiatrist to administer medication on the Eastern Shore so I wouldn’t have to travel so far. He was on a waiting list from Oct 2013..so by May of 2014…he had no meds.and he became so aggressive that we had to get him to a residential treatment center in Newark, DE to get him settled on meds..So he stayed there for 6 days for get meds in him…then I finally got a psychiatrist and therapist close
by now.

Whew!

What was your greatest caregiving lesson?

I need to take care of myself.

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

Meditate.

 What advice would you give to other caregivers?

Take care of yourself.

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

Stay positive!

 What’s been the hardest part of caregiving for you?

Redefining myself.

 What’s the most rewarding part of caregiving?

I learned to slow down and recognize what is really important in life.

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

Tell myself:  Just for today I am happy.

 What’s the last thing you do at night?

Listen to meditation music to charge my battery.

 What keeps you up at night?

Undone Housework and bills.

 What motivates you?

Music.

 What’s the best tool or strategy you’ve found to help you with caregiving?

Forgive myself if I don’t get everything done.

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

Life is short, live, love, laugh!

What’s your best habit?

Smiling.

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

Sing or meditate.

 What do you think makes a life well lived?

Spending time with family.

 What question do you hope an interviewer would ask?

I dont like interviews.

 

Meet Bevel

Meet Bevel

I have just turned 79 but not in mind–that’s around 39–healthy, pretty strong, maybe a little on the stubborn side, I have a pretty good sense of humor (much needed). I live in Cape Town, South Africa in a retirement village, which bugs me a bit because I can’t have anymore dogs.

Besides “caregiver,” what other identities do you have?

I do a bit of painting when I get the chance, love gardening, and an avid animal and nature lover.  Trying to get over having to put my little Maltese down in August she was very special.

Who had the biggest impact on shaping who you are today?

I really don’t think that anyone did.

What’s a personality trait you have that you really value?

I have a great deal of compassion.

What’s your mantra?

Be Positive.

Who are you caring for? What is your caregiving story?

My partner of 42 years….far too long to put down here!

What was your greatest caregiving lesson?

It becomes more and more difficult with time.

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

I don’t think it would have made any difference.

What advice would you give to other caregivers?

Make quality time for yourself.

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

Make sure you have a sense of humor.

What’s been the hardest part of caregiving for you?

Not being able to get away for a break.

What’s the most rewarding part of caregiving?

Knowing that I am being of help.

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

I kiss my dog good morning, used to be two dogs.

What’s the last thing you do at night?

I say a prayer of thanks for getting thru the day.

What keeps you up at night?

A mind like an F1 race track.

What motivates you?

A lovely day rain or shine.

What’s the best tool or strategy you’ve found to help you with caregiving?

Having good music always playing (usually classical).

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

Appreciate life.

What’s your best habit?

I’m never grumpy in the mornings.

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

Sit outside in the garden under a tree.

What do you think makes a life well lived?

Thinking of others and not always about yourself.

What question do you hope an interviewer would ask?

“Would you like to have a Fairy Godmother!?”

Meet Jeanie: Caring for a son with TBI

Meet Jeanie: Caring for a son with TBI

Screen shot 2015-01-13 at 1.33.00 PMI’ve been a single parent since 1993 at which time I went back to school to get my Bachelor’s degree in Education. I taught math for about 8 years and then went into full time ministry. I founded Dove’s Fire Ministries and was bound for Africa before my son’s accident. Since his accident, I have obtained my Master’s in Health Education. I’m a lot of things besides a caregiver. I built a freelance writing business and I also teach ESL on an international level – all from home. I’m also a runner and train all year long. I have two beautiful grandchildren to which I am Gigi.

Many people have influenced my journey and helped me become who I am today. I think the most impact came from my daddy. He adopted me when he married my mom; I was 4 at the time. They had 3 children together and he never made any distinction between us – I’m his oldest child. His love, acceptance and life lessons has helped shape me into a responsible adult.

I’m stubborn. That’s what keeps me going and prevents me from giving up! I have two mantras: 1) Progress is progress no matter how small it seems and 2) Tears will get you sympathy but sweat will get you success.

I’m caring for my adult son who was injured in an automobile accident when he was 24 years old. He suffered many injuries including a TBI. He was a wonderful musician and had only one semester of college left when his friend pulled out in front of a large pickup that T-boned on my son’s side. I flew from Chicago to Louisiana and have stayed by his side continuously. We have moved back to Oklahoma where our family is located – mostly for support.

On caregiving: It’s day to day for me. I’ve battled depression and my own health issues over the last couple of years. My advice would be to take care of yourself – but not just so you can take care of your loved one—do it for yourself. We have to learn to take time for ourselves and give ourselves a break. The most difficult part of caregiving is that there is no end in sight… this is what my life looks like till I die. The most rewarding part of caregiving has been what I have learned about myself on the journey.

The first thing I do in the morning is start the coffee pot – then I bolus and change my son while it makes! The last thing I do at night is try to read a little bit before I doze off. As for strategies to cope with caregiving I’d have to say the most effective tool for me is giving myself a break. I am so stubborn I won’t stop – but I’m learning to make myself take a break every day – it’s okay to have a cup of coffee, a moment when I’m not doing anything for anybody, and it’s okay to take a nap! It’s okay to live….

Caregiving has taught me –life may not be pretty – but it goes on.

My best habit (besides coffee?) is that I am structured and disciplined. I like a routine.

We asked Jeanie a few questions: “What do you do when you have 15 minutes of free time?”

Who has 15 minutes of “free time”? lol   I might read a book, organize a drawer or catch a quick workout.

What do you think makes a life well lived?

A life well lived is one that is simply lived – walked out one step at a time with your focus on others and not yourself.

What question do you hope an interviewer would ask?

I would hope an interviewer would ask how I’ve kept the faith through this trial – and I’d reply, “I haven’t – it has kept me.”

If you are looking to connect with Jeanie or learn more about her story, she blogs at Daily Devotions for Caregivers & From the Furnace.

Meet Freedom Rider

Meet Freedom Rider

head shotI am a 60 year old single woman. I have one brother who lives in another country, and am the sole caregiver for, first both my parents, and now, since mom passed in 2010, my dad. I have been a caregiver for almost 7 years, beginning in 2008.

Besides “caregiver,” what other identities do you have?

Business owner, horse owner, lesbian, daughter, artist wannabe.

Who had the biggest impact on shaping who you are today?

Myself. My parents, truly, but they taught me to examine who I am and decide who I want to be.

What’s a personality trait you have that you really value?

I am emotionally strong and I persevere.

What’s your mantra?

Look up and go. This requires some explaining. For a while I was riding a very skittish horse, and I spent a lot of my saddle time on him looking at the ground (probably thinking about how hard a landing it would be). My trainer kept saying, “Look up and go,” in other words, look at where you want to go and ask the horse to go there. Quit thinking about what is under foot, just focus on the destination and getting there.

Who are you caring for? What is your caregiving story?

I am now caring for my 90 year old dad. My first couple of years I was caring for both mom and dad. Mom had Alzheimer’s, and for several years before I became a caregiver I knew that I would be doing that at some point. I spent that time arranging my business and my life so I could move to Florida to care for them. I made my business portable, I found people to take over the volunteer work I had been doing and trained them to do what I had done. I made practice “runs” back and forth from New Hampshire to Florida, first for short trips, and then increasingly longer, bringing my cat with me (both parents adore cats, and had one of their own, part of this practice was to introduce the cats). Then, dad ended up with some small problem in the hospital, and mom couldn’t function without him, and I made the trip almost non-stop, and stayed. He was fine, but I just stayed on to help. After she passed away, I realized that he needed my help. Dad had polio as a child, and was less and less steady on his feet, along with other issues. He still has all of his mental acuity.

What was your greatest caregiving lesson?

With mom, and Alzheimer’s we learned to “agree, don’t argue.” No matter what outlandish thing she would say it really didn’t do any good to tell her she was wrong, it just upset her and confused her. So, as much as we could, we would agree and chuckle about it later.

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

There is no end date.

What advice would you give to other caregivers?

Have patience and try to look at everything with humor. Being able to laugh at yourself goes a long way.

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

I love the expression “Life is what happens while you are making other plans.” Make your plans, but go with the flow, and if something happens to upset those plans, make new plans.

What’s been the hardest part of caregiving for you?

I have felt like I have given up my personal life. At 60 it is hard to imagine that I will have a long-term relationship, and that makes me sad.

What’s the most rewarding part of caregiving?

Caring for my parents has given me a sense of love and family that I would not have had otherwise.

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

Listen to NPR, which is on the clock-radio, and catch up on world news. Check Facebook on my iPhone. Do 50 sit-ups, 30 leg-lifts, then get out of bed and do 20 squats. That’s my “me” time. I may not get any more “me” time until the end of the day.

What’s the last thing you do at night?

Get dad off to bed, and then sit at the computer, either checking Facebook, playing with genealogy, or playing computer games. That’s my other “me” time. Sometimes I have a 1/2 glass of wine, but not too often.

What keeps you up at night?

I used to wake up thinking I had heard my name being called. I would dash out of my room and into my parent’s bedroom to find them (or now him) fast asleep. Then I got the least expensive baby monitor available, and now I sleep SO much better.

What motivates you?

I love to make plans. Plans for my garden, plans to fix up something around the house, plans for travel, plans for retirement. All motivating.

What’s the best tool or strategy you’ve found to help you with caregiving?

I try to engage dad in his own care, and encourage him to do as much for himself as possible.

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

Patience, love, and not to fear growing old.

What’s your best habit?

Cleaning up after myself as I go along.

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

Actually, it takes anywhere from 45 minutes to 2 hours. I go and ride my horse.

What do you think makes a life well lived?

Having made a difference in someone else’s life.

What question do you hope an interviewer would ask?

I guess something about how other family members don’t want to get involved, just want to be in the will (hmmm, sense a little bitterness there?). I believe this may have driven a wedge between my brother (who lives in Australia) and me.

Freedom Rider can be found online at FreedomRider.com and on Facebook, where she offers all you would need for horseback riding with disabilities, physical challenges and for any situation where safety is an extra concern.

Caregiver Profiles: Lisa’s Story

Caregiver Profiles: Lisa’s Story

Dad & LisaLisa is a 46 year old woman who formerly worked as a secretary. She moved from Florida back to South Carolina as her parents started aging, eventually moving in with them. She had the opportunity to take an online medical transcription course and worked briefly. She has a supportive brother who lives in Orlando and helps as he is able to.

Besides “caregiver,” what other identities do you have?

I am an avid antique doll collector, I cross-stitch, read and enjoy baking. I also have a very sweet cat who is 15 years old.

Who had the biggest impact on shaping who you are today?

My mother, aunt and a good friend. They were and are positive influences and are very understanding.

What’s a personality trait you have that you really value?

Compassion is an admirable trait in one’s self and in others, as some people are not so understanding in some situations.

What’s your mantra?

Not sure, maybe be grateful for the friends and family that actually care and things in your life that make it worthwhile.

Who are you caring for? What is your caregiving story?

When our caregiving journey first began, it was pleasant and pretty cool; I started commuting from my apartment, visiting both of my folks, helping with bringing dinner, doing laundry, etc. One day at work, I got a phone call saying my mom needed emergency surgery and eventually I ended up having to leave work permanently [to care for her]. Her health condition declined from then on for several years and I ended up moving back in with them to help more. She and Dad did ok for a while, but he had also had heart attack, etc. So, it took both of us as she eventually ended up in a wheelchair and bedridden. We could not have done it without home health, their doctors and staff. Even nursing facilities and hospitals were helpful for advice on taking care of both of them.

It was also encouraging taking a medical transcription course. I think the hardest thing was when we had to get hospice for Mom and things kind of went downhill from there. I just thought she was going to be around for a little longer. As good to her as they were, it was uncomfortable but better for her to be home. I’m grateful to still have my dad although he is aging, a little Alzheimer’s and has a walker now. For 88 years old, it’s not bad. I have a brother who is a long distance caregiver, but at least he provides some moral support. Although it is a little stressful, I am hoping others can hang in there. There are now a lot more online resources available for those in rural areas and sometimes we can even find friends or neighbors that have the same in common.

What was your greatest caregiving lesson?

Learning to not be so selfish as our loved ones are not around forever.

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

It is a commitment that you need to make sure you are prepared to stick with for however long it takes.

What advice would you give to other caregivers?

It is emotional and there are situations that you will not prepared to deal with, but have to hang in there.

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

Try to make the best of it, especially if you still have your health, family and a few friends.

What’s been the hardest part of caregiving for you?

It’s kind of stressful and not easy seeing parents age, kind of losing touch with and not seeing friends.

What’s the most rewarding part of caregiving?

Being able to do something that actually matters and helps other people.

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

Take a few minutes to wake up and adjust my mood for the day.

What’s the last thing you do at night?

Unwind by taking some time to relax.

What keeps you up at night?

Stress over health concerns among other things.

What motivates you?

Nice, friendly people that actually care, as you can learn from them.

What’s the best tool or strategy you’ve found to help you with caregiving?

Respect their feelings.

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

Patience, responsibility and how to deal with difficult situations with respect for the feelings of the ones you are caring for.

What’s your best habit?

Do the best you can do.

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

Read, cross-stitch, keep in touch with friends or family or watch TV.

What do you think makes a life well lived?

Try to make the best out of whatever situation life hands you.

What question do you hope an interviewer would ask?

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

Maybe not having the physical challenges that developed in the process of this journey as it effects the quality of care you are able to give.

Meet Judith H: Caregiver, Memoirist

Meet Judith H: Caregiver, Memoirist

20140524-DSC_4880I’m 61 years old and will soon be publishing my first book about caring for aging parents. It’s entitled, The Dutiful Daughter’s Guide to Caregiving: A Practical Memoir.  I’m a writer, a teacher, a friend, a sister, an ex-wife, a pet parent, and always a daughter, even though both my parents are now deceased.

Who had the biggest impact on shaping who you are today?

My parents. I got my love of reading and learning from my father. From my mother, I realized the importance of expressing your creativity in whatever form you choose.

What’s a personality trait you have that you really value?

My sense of humor. It has saved my sanity on so many occasions, when nothing else could.

What’s your mantra?

I actually have two. “It is what it is.” and “What is the lesson here?”

Who are you caring for? What is your caregiving story?

I became a long-distance caregiver for my parents in 2007, after my mom was diagnosed with breast cancer and my dad had a bad fall. He passed away a year later, and I helped care for my mom until her death in 2013.

What is your greatest caregiving lesson?

That we can’t always make everything better for a parent, despite our love and efforts.

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

How every aspect of your life, past present and future comes into play when caring for aging parents. It taps into childhood behaviors, sibling rivalry, messages you received from your family as you grew up, and your own insecurities. Since that also holds true for others involved in your parents’ care, it can make for quite a stew.

What advice would you give to other caregivers?

The short answer has to do with a throw pillow I gave my mother several years ago. It has a picture of a cow lying on its back with all four legs up in the air. Written underneath, it said “I’m fine.” My key advice is: Don’t be the cow.

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

Practice gratitude every day. If we can just take a few moments every day to be present in our lives, we can always find something to be thankful for.

What’s been the hardest part of caregiving for you?

Accepting that no matter how prepared I tried to be, there remained so much that was out of my control.

What’s the most rewarding part of caregiving?

For me, it’s those moments of grace when the roles of caregiver and receiver disappear and you are simply two human beings sitting together sharing your story. About who you love; why you love them; what you’re grateful for; what keeps you going during tough times; what you’ve learned over the years; who or what brings you joy. It’s like a gift you give each other.

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

Give my cat, Addie Jacob a quick belly rub. Only because she stretches out in front of the bathroom door as soon as she hears me wake up.

What’s the last thing you do at night?

I say “Thank you.”

What keeps you up at night?

Imaginary conversations with certain people

What motivates you?

Being of service.

ddg-book-email-sigWhat the best tool or strategy you’ve found to help you with caregiving?

Writing. For me, it has always been the best way to process major life events. In terms of my caregiving experience, it gave me a safe outlet for venting when I was stressed or angry; it helped me gain a clearer perspective on some of the deeper issues that arose from caring for both my parents, and it also allowed me to process the grief that I was feeling well before they died. I facilitate a writer’s group for caregivers at our local library and at every meeting I see what a difference writing makes. The work that comes out of these sessions is very powerful, and sharing with each other creates such a sense of community and connection, which are the very things that caregivers are often missing.

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

To accept my own limitations.

What’s your best habit?

Making To Do lists, primarily on sticky notes. Unbeknownst to me, they sometimes hitch a ride on the back of my slacks. I’ve actually walked through the grocery store like that and no one has ever said a word…

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

I write. There are pens and paper in my car, my purse and all over my house.

What do you think makes a life well lived?

The practice of Tikkun Olam. In Hebrew, that means “save the world.” To me, it means making a difference in people’s lives, both locally and globally.

What question do you hope an interviewer would ask?

Has anyone ever said you look just like Barbara Streisand?

If you would like to connect with Judith or learn more about her writing projects, you can connect with her here at The Caregiver Space or at JudithDHenry.com and Facebook.

Meet Mitzi

Meet Mitzi

I’m a wife of 19.5 years to my husband, Ron. Full time caregiver, student, wife, and homemaker. I quit working 1.5 years ago to be home with Ron full time. I volunteer part time at church doing pre-marital counseling and serving as the care coordinator and leader of our marriage mentor group. I just finished my BS in Psych (with a minor in Christian Counseling) and I’m starting MA professional counseling in Spring 2015 through Liberty University’s online program.

Besides “caregiver,” I’m a mom to three adult children and nana to 7 grandchildren.

My dad, who died Jan 2014, has had the biggest impact in making me who I am today. He was a former pastor who encouraged me to pursue counseling.

What’s your mantra? God, please get me to tomorrow without giving up so I can try again.

Who are you caring for? My husband, Ron, was diagnosed with Alzheimer’s disease last spring. Though I knew something was probably amiss a year or two earlier, I was in denial. He had prostate cancer in Dec 2011, and was successfully treated with hormone deprivation and radiation, over 2 year period (successful is a relative term, isn’t it?). He is cancer free, but he lives with effects of no testosterone and radiation, which have resulted in some minor incontinence issues. (Usually minor, anyway).

What was your greatest caregiving lesson? My husbands moods are often queued from my emotions, energy level and frustrations. He perceives that any feelings I am experiencing are caused by him.

What do you wish you were told before you became a caregiver? How to handle the negativity, anger, accusations and frustrations. How to keep someone safe who does not want to be helped and is in denial of impairment (though he knows he needs help at times, his machismo won’t allow him to accept help most of the time).

What advice would you give to other caregivers? Have a support system, like family nearby who can step in to give you a break.

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

What’s been the hardest part of caregiving for you? Emotionally navigating life caring for someone who appears to hate me most of the time. He has even threatened to shoot me.

What’s the most rewarding part of caregiving? The rare moments when he tells me he loves me (though that inspires caution in me most of the time now).

What’s the first thing you do in the morning? Devotional readings, coffee, walk before he gets out of bed.

What’s the last thing you do at night? Pray, take a sleep aid. I’ve never been one to have trouble sleeping, but now I worry about what he will do, so I have trouble falling asleep and staying asleep.

What keeps you up at night? Worrying that he will get into trouble at night. He goes to bed very late some nights and often goes outside after dark. Sometimes he does inappropriate things like drive, getting on ladders or yard work at night. I can’t stop him and I have to sleep so I take a sleep aid.

What motivates you? Hope, faith, must be love, because without love I would have given up by now.

What’s the best tool or strategy you’ve found to help you with caregiving? Friends and prayer.

In ten words or less, what has caregiving taught you? I have a lot to learn.

What’s your best habit? Walking, devotions, reading inspirational hope filled materials.

What do you do when you have 15 minutes of free time? I read, crochet, and play tablet games.

What do you think makes a life well lived? Heart connections and quality time.

Meet Donna G.

Meet Donna G.

Donna and B

Donna and B

My name is Donna, I am 55 years old and live in Ontario, Canada. I have 2 daughters from a previous marriage who are grown, in their mid-twenties. We have 4 small dogs, 2 of whom are rescues and we love spending summers by the lake.

So besides caregiver, I am Company Controller, wife, mother, horse lover and member of several service clubs.

My great-aunt Kit probably had the biggest impact on who I am today. She was profoundly religious. When I think of her I think “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.” (Matthew 25 31-46)  Caring for others was a way of life for her, and I think some of those values were passed on to me.

My sense of humour is my greatest asset right now.

My Mantra is “ This is my most important job, caring for ‘B’ , but it is not my forever.

My caregiving story

4 years ago, my ex-husband, ‘B’ was diagnosed with advanced prostate cancer.

His mother is 98 and his sister is in her 70s and lives far away. We had remained good friends after our divorce, so I willingly became his companion on this journey. I work full-time as an accountant and am blessed to have a boss that is sympathetic to the situation and allows me to rearrange my schedule at short notice.  My husband is retired and was a carpenter, so he’s happy to do renovations to ‘B’s house when needed and to source vehicles like scooters and vans. He also cooks extra portions to freeze and take to him.

The greatest lesson caregiving has taught me is that I’m stronger than I think.

During a hospital visit the oncologist asked ‘B’ to take off his pants.

I had not seen him naked for decades, but I knew that the lymphedema had grossly distorted his genitals and his groin area.

I told him I was OK with it, which was a lie, but I found that it really didn’t bother me. This was not ‘B’, it was the disease which had reshaped his body.

What do you wish I was told before you became a caregiver? There is no timeline.

I am a person that works with deadlines constantly in my job, and plans a timeline for each project. In fact, ‘B’ is also an accountant. We both wanted to know, how many years? How quickly will the disease progress? In what directions?

It doesn’t work that way. The disease does not conform to a timeline. you conform to the disease’s timeline.

And it can change in a heartbeat!

My advice to other caregivers is to always accept genuine offers of help.

Think of simple things that someone could do and be ready when you are asked “what can I do?” Little things like picking up groceries when asked, sitting and watching a movie and quietly sharing your company, tidying the kitchen…

My best advice for life in general is to cherish the good times and take mental ‘snapshots’ of them so you can recall them when times are not as good.

A perfect sunset, the geese landing on the lake in spring

Trailriding with my family of horse-fanatics

Something funny that someone said

I will often smile on a Sunday evening and say OK, hysterical line of  the weekend. “Margaret!, don’t call me Marg, my mother named me Margaret!”

Anytime something strikes me as funny I put it into my mental archives for later use!

For me, the hardest part of caregiving is the helplessness. I hate watching someone I love in unspeakable pain, knowing there is nothing I can do to take it away. I can’t even offer hope. We both know he is going to die, that’s the reality. We can’t tell what form this death will take and when it will be.

The most rewarding part of caregiving has been the milestones. Each concert that we actually make it to and enjoy together, each church service we are able to go to.

When I think “this will be the last time we do this” and it isn’t!

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

My daughter lives with ‘B’ now, so I don’t worry much during the night, but I always check my phone for texts from him and text ‘good morning, how was your night?”

What keeps you up at night?

Worrying about what ‘the end’ will look like. Will he be in pain? Will it be long and drawn out, or blessedly brief?

Mostly, will be be able to stay in his home until the very end?

What motivates you?

B and I never stopped being friends. He has always been good to me and our daughters. He has been a wonderful father to them and a wonderful friend to me.

I want to share this last part of his journey with him.

What’s the best tool or strategy you’ve found to help you with caregiving?

Remembering that right now, today, this is my most important job. Yes, I have to keep the job that earns our income, and I have to be a good wife and mother, but the most important thing is to make sure that B receives the best care possible and is kept comfortable. I don’t ‘juggle’ caregiving with other things. I provide support to ‘B’ and juggle the other things.

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

Don’t be afraid to advocate for your patient – your voice counts!

What’s your best habit?

I keep an updated medications list in my purse and scanned onto my computer with the schedule for taking the meds as well.  2 other family members have a copy. Not only are we prepared at the hospital, but any of us could prepare the weekly meds if we needed to.

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

I love to read, so I curl up with my Kobo. This generally leads quickly to a nap- but there’s nothing wrong with that!

What do you think makes a life well lived?

I think a life is well lived if you inspire others to lead a caring life. I am so proud of my children, not only for the way they care for their dad and stay involved in his life, but for the way they get involved in other causes that they believe in. They seem to have a very real sense of fairness. I hope that some of that came from me.

What question do you hope an interviewer would ask?

When times are tough, where do you draw strength from?

I had always imagined that when B’s health became worse, I would seek support from the clergy and members at our church.

Because of the unusual situation – caring for my EX-husband, albeit with the full support of my current husband – many seem uncomfortable, so I keep my ‘secret life’ as a caregiver to myself.

I belong to an old order, with Masonic roots, called the Order of the Eastern Star.

I have never been judged by my fellow members and have felt comfortable attending functions with both ‘B’ and my husband with me.

I never attend a meeting without several members approaching me and asking how ‘B’ is and letting me know that they are only a phone call away.

This was an unexpected, and very welcome surprise!

Caregiver profile: Bianca M.

Caregiver profile: Bianca M.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Meet Bianca

Tell us about yourself.

What can I say? I am 22 years old, fixing to be 23 years old in December. I am currently studying online for my bachelor’s degree in criminal justice with a minor in sociology. I am big sister to two boys and sibling to two others I have never met.

Besides “caregiver,” what other identities do you have?

I am a book-lover and a cat-lover, big sister to two boys, four if you count the siblings I have never met. I am also the girlfriend of a 911 dispatcher and an online student attending Eastern New Mexico University. I currently hold Jr status, got two more years of college and I cannot wait to graduate!

Who are you caring for? What is your caregiving story?

556547_4252822444312_151259010_nI was caring for my boyfriend’s grandmother. When I met her for the first time, her usual caregiver was fixing to move out of town. When that happened, she kept going through caregivers and none of them seemed to survive nor get along with her. I was recently out of a job– the daycare I worked for became strapped for cash and I was let go for reasons that were not known to me. After not having a job for months my boyfriend pitched to me the job of helping out his grandmother, someone who he also considered his mother. She was very close to him and she practically raised him off and on; they had a very close bond that I wished for.

About one to two weeks later, after going through training, I started my first day as her caregiver. I can admit it was hard, she yelled at me for so many simple mistakes that I kept making, but I told myself I needed this job. I could not lose this job. I was 20 at the time and losing my calm, I could understand she was in a lot of pain and she was sick. She needed my help. I could not let her down, especially since her “son” was my boyfriend and I wanted to make him proud too–so I stuck it out.

The company that I worked for wanted me to see other clients, but his grandmother insisted that I stay with her because I was unfamiliar with the town she lived in and knew no-one.  As time went by, I made less mistakes and got my job done and our relationship improved. When I was done with everything, I sat with her and talked with her and she shared stories of her grandkids (my boyfriend and his brothers). I shared stories of my life and what I’ve been through and I began to think of her as the grandmother I never had. She often told me hints about my boyfriend and wanted to teach me so many tricks that he liked. Recipes that she made, she wanted me to have, but she never got the chance to.

Her health declined about a half a year into me working for her and she soon lost the use of her legs due to an ongoing illness. I am a “small large person” you could say, as I am plus-size but I am small and so I could not lift her to help her at all. I soon was transitioned out of the job, which was given to another person who could be there more than I could be.

I often stopped by with my boyfriend and talked with her, and she often asked if I could stay the night with her. I declined almost every time, which is one of the things I feel the most guilt about. Don’t get me wrong; she had family that loved her and stopped by on occasion, but it was seldom she wanted company and that’s all she wanted. She was a homebound person most of the time, due to her blindness and the illness with her legs. She lived alone, my boyfriend had moved out and gotten a place with me, so when he was gone, she lived alone. That is the one thing that keeps going through my mind now.

Once her health declined we did not know that would be the last few months we would have with her. She was transferred to an out-of-state hospital and soon after that she passed away. I had plans to surprise her that weekend by traveling up with my mother to see her. About five days before I was supposed to leave we all got that dreaded phone call early on Saturday morning, and she was gone…she gave up the fight that none of us thought she would give up. Coming back to it I feel a lot of guilt for not staying over and keeping her company. That’s all she wanted was someone there to pass the time.

The funeral came and went, I showed my true spirit. I couldn’t stop crying about it; I kept thinking about everything she taught me, everything she told me that still rings true today. The one lesson she always told me was no matter what is going on in your life always keep your head up and smile because nothing is bad forever.

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

This one seems easier: you are going to need a lot of patience and a lot of self-control not to get angry and fight.

What advice would you give to other caregivers?

Don’t over think everything, don’t take things literally because sometimes things are said out of anger and sometimes pain. I remember her getting very angry at me because I touched something that hurt, I cried because it broke me, but about five minutes later she said sorry and gave me a tissue.

What’s been the hardest part of caregiving for you?

When she passed away, it was getting used to the fact that she wouldn’t be around anymore. She wouldn’t call me to ask me the “gossip” of the day, or blow up my cell phone asking me how my day was going on my day off. It hurt to know this.

What’s the most rewarding part of caregiving?

Having the person you are caring for happy, and in a good mood because they are cared for.

What’s the best tool or strategy you’ve found to help you with caregiving?

Being patient; enough said.

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

It has taught me patience and understanding of someone’s life and health.

 

You can learn more about Bianca on her blog.

Caregiver Profile: Sandy J.

Caregiver Profile: Sandy J.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Meet Sandy

SandyI’m a parent, grandmother, dog lover, antique fan, music lover, and a person who genuinely cares for people and would love to be able to take away all of life’s suffering. I care for a retired female veteran. Before becoming a caregiver I didn’t realize how consuming it would be…both of my time and myself.

Sandy and her son

Sandy and her son

My advice for other caregivers would be to take life one day at a time, one opportunity at a time. Don’t take anything personal. It’s easier said than done, but possible. The hardest part of caregiving has been not having time for myself and my family. The most rewarding part is knowing I’m helping someone have a better life. The things that matter most to me are other’s happiness, my family, health and well being.

Caregiving has taught me understanding, appreciation, acceptance, thoughtfulness, and selflessness. It’s an honorable thing to be a caregiver. I’m making a different in people’s lives.

Caregiver Profile: Andra H.

Caregiver Profile: Andra H.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Meet Andra

I’m 44 and engaged to the love of my life! Mom to one daughter. I love life in the slow lane, watching the snow fall, the river flow past, and lightning storms. An animal lover since birth, I am astounded by the amount of cruelty people can show; to both animals,Andra H and humans. I love to curl up with a great book, and could read all day. Not a coffee drinker, I’m a certified Pepsi-holic, and chocolate lover, I love home made buttery popcorn! I battle with depression almost always.

Besides being a caregiver, I’m a crazy cat lady, dog lover, hunter, fisherman, Mom, artist, cook, reader, doctor, nurse, patient.

I work at an assisted living center for the mentally ill. Our residents are the worst of the worst. The ones that would otherwise be in jail, or in a state hospital. They have burned their bridges. I started working there after ending an unhappy, abusive marriage. I moved close to home, to be near my family; And I found another. So far, I have been there for 12 years. It’s had some really rough moments, and some I would not trade for the world. Every day is different. Bi-polar, borderline personality disorder, TBI, Dissociative Identity Disorder, paranoid schizophrenic, fetal alcohol syndrome, Hunningtons, Downs, Williams Syndrome, Klinefelters, dementia, Autism, sex offenders,  and so many more that I cannot recall off of the top of my head.

I wish someone had told me to never take it personal. These people get frustrated, and angry, and they come up with some really creative profanities to call us. But, it’s not personal. It’s them, getting rid of anger, and frustration, They have no positive ways to do it, not in their heads. I wish I had been told how much of this you are going to carry around with you. Every day. No matter if you are at work, or at home. You don’t get away from it, just because you go home.

Andra H catching a very large fish in a netCaregiving is going to hurt. You will get close to the people you care for. And when they go… wether it be to a different place, or death claims them. It’s going to rip your heart out.  The residents we care for will treat you like you are their best friend and stab you in the back.  It’s not personal. Also, find a hobby. Wether it be reading, crocheting, making flies, crosswords, you need something that’s basically mindless… to let your mind slow down.

What’s the hardest part of caregiving for? Physically? The stress. The rest? Oh geezze.. I would have to say the worst part? Its a tie. A tie between holding a man’s hand while he is dying. When he doesn’t let go of you, even though they are loading him in an ambulance. Knowing that is the last moment you have with someone you have spent so much of their life with. A tie between that and having to have a resident removed from the facility, to go to jail, or a state hospital. Knowing that we weren’t helping that person. Knowing that they will end up in a place where no one will know them. A place that isn’t home to them.

The most rewarding part? Having someone with no family, or the family has written them off, come to you, and tell you how much they appreciate something you did. How much it meant to them. It’s a humbling experience. On days when I just don’t think I can do it for one more minute… those are the moments that keep me there. Knowing you are making a difference in someones life.

One of the strategies that makes caregiving easier is to never yell. If two people are yelling, no one is listening. Speak quietly, and listen to what that resident is saying. Really hear it.  Sometimes its okay to walk away. If you feel like you need a moment, take it. Never take anything personal.

Caregiving has taught me to cherish each day. Patience. Empathy. Love.

Caregiver Profiles: Sue G.

Caregiver Profiles: Sue G.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Meet Sue

I have never been one to overtly show my emotions; but as I travel my newest emotional roller coaster, I have learned that emotions are just a part of each of us, they need not be justified and it helps when I share. I still have difficulty with the word ‘caregiver.’ It seems cold and impersonal. I am a wife standing with and giving support to my loved one.

I am a wife, mother, grandmother, poet, photographer, friend, neighbor, golfer, tennis player.

As a senior, and primary caregiver to my husband who is recovering from a stroke he suffered in 2012, ‘precious moments’ seem so all important to capture. Writing poetry captures my emotions and releases my every thought and the tensions within. I share so others can relate and not feel so alone. My latest book, From My Heart in Pictures and Poetry has brought comfort and some degree of understanding to many other caregivers and friends.

I have recently begun speaking engagements to organized groups on the emotional impact of caregiving.

I am a contributor on the All Poetry website. My poems have been published in ‘Caregiver Magazine’ as well as several poetry volumes.

As a photographer, I try to capture nature, time, space, interaction. I look to nature for harmony, composition and design.

We all have certain things we wish we could have known ahead of time. I wish I knew more about stroke, how to prevent it, and the emotional impact it places on family and friends for the rest of their lives. I would have understood and reached out to others more.

Caregiving re-arranges your life and forces you to set new priorities. It changes relationships and overwhelms you with ‘to do lists’ and responsibilities. Obstacles challenge us to find new routes.

We tend to reach out to friends and family in an emergency, then things calm down, and we go on with our lives, never giving thought or understanding to the long term impact of the ongoing traumas. Nobody plans to be a caregiver. Yet, everyone is, will be, was, or knows a caregiver at some point in his/her life.

My advice for other caregivers is…

  • The more you know about the individual and his diagnosis and his disease, the better prepared you will be to provide care.
  • Be responsive to change.
  • Know your limitations and strengths.
  • It’s not only okay, but imperative that you reach out for help.
  • To adequately give care, you must take care of yourself.
  • You have the right to feel what you feel and to express those feelings.
  • You maintain the right to your own life outside of caregiving.
  • You have the right of choice, to decide what you will or will not do. This includes the right not to be manipulated by anger, fear, or guilt.
  • The weight of responsibility for another weighs heavy on my shoulders.
  • Being on call 24/7 with no easy respite.
  • Control issues with my loved one.
  • Reaching out to others for help.
  • Knowing I’m helping the person I love.
  • I am a positive force.
  • Proper sleep habits are essential.
  • Learning about the individual and his disability.
  • Taking ‘one day at a time.’
  • Staying in step with and learning to be responsive to my husband’s changing needs.’
Caregiver Profile: Jennifer C.

Caregiver Profile: Jennifer C.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


 Meet Jennifer

I am the caregiver of my fiancé (would be husband, if finances allowed it). We have been together for 5 years, and I have been his caregiver for 4. I just wanted to express that this is the most rewarding job/relationship I have ever been involved during my life. Not only have I seen a huge change, determination, and motivation in him, but also in myself. I have truly been lost in this world without finding this incredibly strong man! He truly his my savior, as much as he would fight you in telling you I’m his. We always stick together, but that doesn’t always make things any easier. There are always hard trials and tribulations, that always make us stronger on the other side! It is always so nice to see that we aren’t alone in this, sometimes very cold and cruel, world. We have seen some incredibly wrong injustices, especially in the medical field. We just want all the caregivers and their loved ones alike to know you are not alone!

Caregiver Profile: Sally S.

Caregiver Profile: Sally S.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


 

I am a mature and independent Caregiver with 5+ years of experience.  As I near year four of widowhood, I have reconstructed my life towards knowledge and familiarity of caregiving, steering me toward my newfound passion and career as a caregiver.

Besides “caregiver,” I am a grandmother of 9, love to read, and currently just finished my studies as a Certified Senior Care Auditor, which is a new and upcoming service in the caregiving field.

My caregiving story began with the care of my beloved husband of 33-years, early in 2009. Without the insight of knowing what was involved in his care, I quickly educated myself to the astuteness of caregiving. After my husband’s passing in 2011, I came to accept life as a balance of holding on and letting go, thus to appreciate what was and what will be. And not long afterwards, I was privileged to care for my 85-year old father until he succumbed to a stroke in 2013. I am proud to say that without these personal experiences, I would have never thought about a caregiving path as a career. I have since worked independently for clients, where I find making a difference in their everyday lives rewards me in so many ways.

Before I became a caregiver, I wished I was made aware of all the resources and education that is available; whereas I had to learn myself about the detail-oriented tasks involved and make the time to research how to give the proper care.

My advice for other caregivers is to continue to educate yourself and sign-up for online newsletters and/or join a caregiver organization.

The hardest part of caregiving for me was disallowing myself to NOT get too close to a client, as I have a tendency to be very compassionate towards them, which then becomes very hard on me when I no longer care for them.

The most rewarding part of caregiver is knowing that I make a difference in my clients everyday life by offering life-enhancing quality care services…to help my clients live their life to the fullest in the comfort of their own home.

The best and most wonderful tool that I use for caregiving is a Client’s Binder! The daily documentation, medication list, health issues, doctor’s info, etc. is a lifesaver tool. While caring for my husband I learned that I needed to be more organized in order to perform my care needs easier; that is why I put together the Client’s Binder. I always keep the binder in the client’s home, as I want the client and or family members to have access to read whenever it’s convenient for them.

I am gratified to say that caregiving has taught me patience, perseverance and purpose.

Caregiver Profiles: Marge S.

Caregiver Profiles: Marge S.

My husband, Orville, and I have been married 48 years. He was a widower with 4 sons, ages 5, 7, 10, and 12 when I married him. A year after our wedding we went to Misawa Air Base Japan for 5 years. Upon Orville’s retirement, we settled in Cedar Rapids, Iowa. In 1980 and ’83 we went to Bible School in Oklahoma and pastored a church in Spencer, Iowa, for 5 years and then went back to Cedar Rapids. In 1995, I went back to college and got my BA in Graphic Design/Art. In 2000, we sold everything and moved into a 36′ Fifth Wheel RV and traveled the country. We still live in our RV but we don’t travel anymore.

Besides being a “caregiver,” I’m a parent, cook, graphic designer, photographer, grandmother, great-grandmother, and minister.

I’m caring for my husband, Orville. I’ve been caring for him on and off for at least the past 30 years, but more so since his first back surgery in 2008. In December 2012 we stopped traveling because of Orv’s health and settled down on our leased lot in an RV co-op in Lakewood, NM. Traveling in 2012 had been filled with many health issues for him and a hospitalization in Anderson, IN for 10 days with staph in the blood. In 2013, Orv had another back surgery and other hospitalizations for dehydration.

Finally, in June of 2014, a physical therapist noticed parkinson-like symptoms and told Orv he should see a neurologist. That diagnosis was confirmed and we decided to apply to become a resident at Escapees RV Club CARE (assisted living in our RV) in Livingston, TX. We were accepted and arrived here on September 10, 2014.  This move was as much for my benefit as for Orv’s. I was totally exhausted. Now we eat our meals in the CARE Center, they pick up our laundry and do it once a week, and we are surrounded by caring people who help us as much as we want. I don’t feel alone anymore because we are in a community of people who all need assistance.

Coming to CARE-Assisted Living in our RV is the best thing that helps me. I still do just as much caregiving but not having to cook or do laundry and knowing I have a nurse to call makes life so much easier. Before coming here Orv has “home care” where a nurse and physical therapist come every week and that, too, was helpful because we always had someone we could ask questions of.

The best advice for caregivers? Be sure to find a way to take time for yourself. Turn to God. If I didn’t have Jesus Christ in my life giving me strength, I could not make it. I often say “The joy of the Lord is my strength.”

One of the hardest parts of being a caregiver is that most people ask “How’s Orv?” and they don’t ask about me. They don’t realize how exhausting it is to be a caregiver. It leaves you feeling very alone.

The most rewarding part of caregiving is the gratitude of my husband.  I know all caregivers can’t say that. I’m so grateful that he appreciates what I do for him. It makes it bearable.

The greatest lesson of caregiving: Love and patience are essential.