Our Ultimate Goal

By sharing our stories, tips and/or thoughts  we get a look into each other’s hearts which helps us appreciate the unique challenges each one of us face. It also helps us realize we’re not alone and points out what we have in common.

I’m grateful for all the past and present guest authors on Uniting Caregivers who have helped me reach my ultimate goal of increasing love, patience, tolerance, care and understanding. If you’d like to  be a future guest author, that would be wonderful! I believe you have something we can benefit from. If you have a thought, tip or story you’re willing to share, I’d be happy to help you publish it. If it seems overwhelming and you don’t feel like you can do it, please know I’ll be there every step of the way. Let me know if you’re interested by leaving a comment in the box at the bottom of this page or by sending an email to Barbara@UnitingCaregivers.com.

Tolerance1

Thank you, Cally Johnson, Pamela Clark, Judy Coon, Silvia Caswell, Jamie Sorensen, Glenn Oliver, Cindy Oliver, Dianne Breitling, Julie Brown, Barbara Larsen, Deidre Pickering, Katie Ferguson, Ann McDougall, Eric Reynolds, Tim Gray, Laura Norfelt, Greg Norfelt, Rosanne Day, Chuck Ferguson, Neils Knudsen, Mark Wilson and our current guest author, Christine Scott. To revisit any one of their stories, type their name in the search bar on the home page and it will take you to that individual’s article or list of articles in some cases. I appreciate each of you sharing your unique challenges and wonderful tips which help us reach our goal of better understanding one another.

Where to Turn for Help

Pick Yourself UPI appreciate Christine Scott’s series, Laura’s Story, where first she recalls her sister’s birth and slow development and then the impact of her seizures and her battle with cancer. Sometimes the trials and health concerns seem to be never ending, causing stress and fatigue to the individual and the caregiver. In part three Christine wrote, “Yesterday I asked my mom how she did it and she said, ‘You just have to pull yourself up by the bootstraps and take it one step at a time.’ Then she smiled and added, ‘I’m made of good pioneer stock where the fittest survive.’”

Both statements are true, but what if you’re in a slump and can no longer pull yourself up by the bootstraps? I imagine every caregiver has periods where stress, exhaustion and/or depression set in. If those feelings last for an extended period of time, medical attention may be necessary. Stress and depression are treatable disorders. If you want to help prevent burnout, consider turning to the following resources I found on http://www.webmd.com/women/caregiver-recognizing-burnout?page=3#1 for help with your caregiving:

  • Home health services—These agencies provide home health aides and nurses for short-term care, if your loved one is acutely ill. Some agencies provide short-term respite care.
  • Adult day care—These programs offer a place for seniors to socialize, engage in a variety of activities, and receive needed medical care and other services.
  • Nursing homes or assisted living facilities—These institutions sometimes offer short-term respite stays to provide caregivers a break from their caregiving responsibilities.
  • Private care aides—These are professionals who specialize in assessing current needs and coordinating care and services.
  • Caregiver support services—These include support groups and other programs that can help caregivers recharge their batteries, meet others coping with similar issues, find more information, and locate additional resources.
  • Aging services—Contact your local Agency on Aging or your local chapter of the AARP for services available in your area such as adult day care services, caregiver support groups, and respite care.
  • National organizations—Look in a phone directory or search online for local agencies (such as Family Caregiver Alliance), chapters of national organizations dedicated to assisting people with illnesses such as Parkinson’s disease or stroke. These groups can provide resources and information about respite care and support groups.Light a Candle

 What has been your experience with the above suggestions? How do you prevent burnout? Sharing your experiences in the comment box can help another caregiver.

 

Laura’s Story, Part 3

ChristineMy name is Christine Scott. I’m a forty-six-year-old mother of five children and I grew up with a mentally disabled sister. In my first segment of Laura’s Story, I recounted her birth and slow development. In Laura’s Story, Part 2, I told about the impact of her seizures. Processing the memories and spending time reminiscing with my mother about my sister’s life is exactly what I needed—and my mom too.

Laura Piano

Laura 1973

Cancer is a six letter word no one wants to hear. It’s the fear on everyone’s mind when anything abnormal happens to a loved one’s health. And no one wants to hear the word cancer associated with their child.

At the age of seven, Laura had this reoccurring lump on the right side of her neck. Our family doctor thought it was a puss pocket inside the gland and whenever it became enlarged he’d treat it with antibiotics.

Laura’s whole life up until that point had been a series of illnesses, which included reoccurring strep throat. After about two years, the lump stopped responding to antibiotics and she never really got to a point where she felt good. Children usually have boundless energy, but she was often lethargic. Even after the lump stopped responding to antibiotics, our family doctor didn’t suspect the possibility of it being cancer although Laura’s health continued to decline.

Mom was tired of not getting answers and she took Laura to another doctor who was Dad’s friend. He diagnosed the lump as Hodgkin’s lymphoma, so she took Laura to LDS Hospital where she underwent her first surgery to have the lump removed. Biopsy of the lump was sent to five different hospitals to be tested; two diagnosed it as cancer.

It took six months from the time the lump stopped responding to antibiotics until a formal diagnosis was made. Luckily the cancer was only in stage two and very treatable.

Laura was admitted to Primary Children’s Hospital to have her spleen, appendix, and gallbladder removed in preparation for radiation treatments. The doctors chose to treat Laura with radiation because it was believed to be less invasive than chemotherapy.

Laura & Chris Christmas.jpg

Christmas- Laura & Christine

During this time I had become a wild thing. This seems very fitting considering Where the Wild Things Are, by Maurice Sendak, is my all-time favorite children’s book, except my mom was too busy taking care of my sister to send me to bed without my super. I remember chewing up a carrot and spitting it all over the TV screen and then blaming it on Laura. Since she lacked the communication skills to deny the accusation, my mom believed me. I’m sure this blaming Laura for my foul deeds was a common occurrence.

We lived in a hundred-year-old house and behind it there was a wooded area where I would play for hours by myself or with the neighborhood kids. My imagination went wild. I caught snakes in the ditch and went on many adventures, which I’m sure would make good children’s stories if only I could remember them in detail.

Another memory which reflects my wildness is when Laura was in the hospital following her second surgery. I was left in the care of an elderly neighbor while my mom stayed by Laura’s side. At the end of her hospital stay, I remember being quite proud of the fact I’d managed to go a whole week without a bath.

Mom drove to Primary Children’s Hospital three times a week for six weeks for Laura’s radiation treatments. She would get me out of bed at some horrible hour, long before the rest of the world stirred. We’d drive the hour to Salt Lake. It’s funny how a child’s memory perceives things on a much grander scale. My recollection of this drive is of us winding through the mountains, which Mom told me was Memory Grove. At this time Primary Children’s Hospital was located in the avenues. I waited forever on hard chairs where I often fell asleep. We stopped at a convenience store and bought breakfast—pickled eggs—which I loved! Then my mom drove another hour to Ogden Weber so Laura could attend a few hours of school. After dropping her off, we drove twenty-five more minutes back to Morgan so I could go to school. I often arrived late for class.  Miss Compton, my first grade teacher, usually got upset with my mom for bringing me late. If she knew the circumstance surrounding my tardiness, I wonder if she would have been so quick to pass judgement on my mom.

Laura & Chris picnic.jpg

Oshkosh, Wisconsin at the EAA convention (Experimental Aircraft Association. The long silver trailer at the side of us held my dad’s ultralights (motorized hang gliders). Laura was still recovering from her radiation and too weak to walk around so we pushed her in the wheelchair.

Many, many months later Laura was pronounced cancer free. I can’t imagine how my mom survived those surgeries and the six weeks of radiation treatments. My dad’s hang gliding business had really taken off and he couldn’t take the time away from work to help her, so she did it all alone. Yesterday I asked her how she did it and she said, “You just have to pull yourself up by the bootstraps and take it one step at a time.” Then she smiled and added, “I’m made of good pioneer stock where the fittest survive.”

At that moment I realized how much I love her and appreciate all she sacrificed for our family.

Thank you, Christine, for sharing more of your sister’s story. I love seeing this caregiving journey through a child’s perspective. It helps me understand what my own children went through because so much of my time and energy went to caring for their dad. I realized to a degree how hard it was for them and felt concerned about it. It’s so difficult to juggle all the responsibilities. Your mother is blessed to have you and I’d be willing to bet you brought her sunshine on those dark days.

I look forward to your next segment.

 

Seizure Insights

Christine told about her sister’s seizures in Laura’s Story, part 2. Seizures are scary to witness, especially when you don’t understand what’s going on. I know because I’ve seen Mark have many. They look painful and leave him very confused and sometimes unresponsive. Mark’s first seizure was seven years after his traumatic brain injury (TBI) and left me with many questions and concerns. I found the short article below very informative.

What is a seizure? 

Reference http://www.epilepsy.com/learn/epilepsy-101/what-seizure

  • A seizure is a sudden surge of electrical activity in the brain.
  • A seizure usually affects how a person appears or acts for a short time.
  • Many different things can occur during a seizure. Whatever the brain and body can do normally can also occur during a seizure

What happens in the brain during a seizure?

  • The electrical activity is caused by complex chemical changes that occur in nerve cells.
  • Brain cells either excite or inhibit (stop) other brain cells from sending messages. Usually there is a balance of cells that excite and those that can stop these messages. However, when a seizure occurs, there may be too much or too little activity, causing an imbalance between exciting and stopping activity. The chemical changes can lead to surges of electrical activity that cause seizures.
  • Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed, while others are totally disabling.

The nature of seizures varies, because the lobes of the brain control different behaviors, movements and experiences.

Does just one or two seizures mean I will get epilepsy?

  • About half of the people who have one seizure without a clear cause will have another one, usually within 6 months.
  • If there is a known cause for your seizure (for example, brain injury or other type of known brain condition), then you are twice as likely to have another seizure.
  • If you have two seizures, there’s about an 80% chance that you’ll have more.
  • If your first seizure occurred at the time of an injury or infection in the brain, then you are more likely to develop epilepsy. Often, more seizures don’t occur until weeks or months after the initial injury or infection.
  • More seizures are also likely if your doctor finds abnormalities on a neurological examination (tests that are done in a doctor’s office to see how the nervous system is working).
  • An EEG test can look at the electrical activity of the brain and may help predict whether more seizures will occur. Certain patterns on the EEG are typical of epilepsy. If your brain waves show patterns of that type, you are about twice as likely to develop epilepsy.

Laura’s Story, part 2

Christine

Christine Scott

My name is Christine Scott. I’m a forty-six-year-old mother of five children and I grew up with a mentally disabled sister. In my first segment of Laura’s Story, I recounted her birth and slow development. Processing the memories and spending time reminiscing with my mother about my sister’s life is exactly what I needed—and my mom too.

In 1970 with only a few days left until Christmas,  my mom loaded Laura (three years old), and me (eighteen months) into the car and made the hour commute from Morgan to Salt Lake. Laura had been running a slight fever, which wasn’t out of the ordinary. Ear infections and sicknesses had become a common occurrence. Once in Salt Lake, she left us in the care of my grandparents so she could go Christmas shopping with Aunt Jean—my mom’s younger sister.

Enjoying the anticipation of the holidays, my mom and Aunt Jean began their shopping trip. While inside their first store, my mom heard her name over the store’s intercom. Since this was during the time before cell phones, it’s easy to imagine the anxiety which must have overtaken her at that moment. She doesn’t remember exactly what the store’s employee said, but easily recalls the anxiety-filled trip to the hospital where Laura lay unconscious.

Laura young

Laura

This was Laura’s first seizure. She did not convulse, like one typically assumes happens during a seizure, but passed out and stayed unconscious for twenty minutes or more. At the hospital they administered phenobarbital, an anti-seizure medication and later antibiotics after diagnosing strep throat.

It’s hard for Mom to remember the timeline and the events which happened so many years ago and unfortunately she didn’t keep records. I remember as a child feeling very disappointed when we left the swimming pool or a playground early or didn’t get to go at all because certain activities seemed to induce seizures. This is when I began to figure out Laura was different from other children, which was beginning to make me different as well.

Laura swing

Laura & Christine

My mom took Laura to Primary Children’s Hospital for multiple evaluations. Laura most likely had started school during this process and was exhibiting some behavior problems. The doctors ran tests and put her on Ritalin. My assumption is that the Ritalin was introduced to help her in the classroom. Laura started having grand mal  seizures and mom directly blamed the progression of her seizures on the Ritalin.

Laura & Chris Easter

Christine & Laura in matching Easter dresses Mom made.

Life went on and Mom did her best to provide a good life for us while dealing with the challenges placed before her. Living in the small town of Morgan, Utah, the elementary school was not equipped to handle Laura’s disability. Since Laura couldn’t function in the classroom, she only attended school a few times a week for a couple of hours. Dissatisfied with the services Laura was receiving, my mom chose to drive twenty-five minutes to Ogden Weber, a special education school. This is where Mom finally began to receive the support she needed for my sister. She was hired on at the school as a teacher’s aide and joined a community of individuals who cared for children with disabilities. When I look back on this time, I remember the happiness and peace my mom experienced. With the money she earned she was able to buy a more dependable car and a dishwasher. When I recently asked her about the time she worked at Ogden Weber, she said, “I learned so much.” The people she worked with respected and treated her as an equal—which I believe made a huge difference in how she felt about herself.

Laura & Chris 2

Christine & Laura

Since Mom worked outside the home and had to leave early in the morning, my care fell to my dad. Luckily at this time I was a first grader and attended school all day. Dad owned his own business where he designed and built hang gliders. I left early with Dad and stayed at his shop until it was time to catch the bus. These were cold and lonely mornings for me. A wood stove made out of a half metal barrel heated his drafty work area. I stood so close to the stove to keep warm that it melted the fake fur which trimmed my coat, forming ugly burned clumps. Mom trimmed them off the best she could since we didn’t have enough money to buy a new coat.

Another memory I have of Dad’s workshop is when I had the measles. For two weeks I laid in a makeshift bed up in the loft of his shop while I recovered. I missed my warm home and my mother’s care. Looking back, this is when my detachment from my mother began, when I started making myself small in order for our family to survive.

Life goes on and we do our best to work through the challenges placed before us. Medication controlled Laura’s seizures and my mom continued to work at Ogden Weber. At Laura’s young age of nine a suspicious lump on the side of her neck stopped responding to antibiotics and was diagnosed as Hodgkin lymphoma. My quiet, stalwart Uncle Bob was diagnosed with cancer along with my cousin, Rick. After a commendable fight, Bob recovered and returned to work, but my cousin didn’t. He died of Hodgkin lymphoma.

Laura's family

Mom, Me, Dad, Laura & Grandparents

At the time, I was unaware of all the hardships my mom faced and my heart goes out to her as I think of the superhuman strength it took to face another new challenge. She had already overcome so much. I will always be thankful for the example she set as she showed me what it means to be strong in the face of adversity and to not give up no matter how hard life gets.

Thank you Christine for sharing your sister’s story. I appreciate getting a child’s perspective on the caregiving of a close sister and realizing how a healthy child could be overshadowed by the concerns of health and financial worries. It’s amazing  the variety of challenges Laura endured and reminds me that no person is an island. What happens to one affects every member of the family. I look forward to your next segment.

 

 

Happy Valentine’s Day

Valentine2According to Wikipedia and the Catholic Encyclopedia there were at least three early Christian saints by the name of Valentine. It is said that the first St. Valentine, a Roman bishop who lived in the third century, held secret marriage ceremonies for soldiers in opposition to the Roman emperor. Claudius II believed married men were more emotionally attached to their families and didn’t make good soldiers. He prohibited marriage to assure quality soldiers and ordered the execution of St. Valentine on February 14th after he healed one of the soldier’s daughters from blindness and is said to have signed a card to her, “Your Valentine”. His devotion to God and commitment to supporting love and marriage is a remarkable example.

In England, by the eighteenth-century, February 14th evolved into an occasion which lovers expressed their love for each other by presenting flowers, offering sweets, and sending greeting cards known as “valentines”.

For Mark and I, the traditional Valentine’s Day symbol has become three heart-shaped balloons with the sentiment “I love you” written on each one of them. They proclaim our feelings plus remind me of the overpowering relief and joy I felt with Mark’s first words to me after our car accident.

Excerpts from my article written March 9, 2015, “Love Ya Back”

Bath bed

Bath bed

Part of my new routine included helping the nurse’s aide bathe Mark. I wasn’t expected to do this, but I wanted to. It was important to me that he knew I was always close by and involved in every aspect of his care. It took two people to slide him from the hospital bed onto the bath bed, which was on wheels. Mark’s naked body was covered in warm blankets. He was secured to the bed with two safety belts, one around his chest and another around his legs, for the ride to the “bath” room. The bed was hoisted into a large bathtub with jets. After nine weeks of sponge baths on his hospital bed, he seemed to enjoy being immersed into the water.

One night in July, after his bath, I cut his hair and shaved his cheeks. We were alone in the bath room. All clean and well-groomed with no place to go except into bed, I stepped back to take one more admiring look at him and said, “I sure do love you!”

Ever so softly, I heard, “Love ya back.” These were his first words in ten weeks and I wasn’t sure I heard them right.

Tears filled my eyes as I moved closer and cupped his cheeks in my hands, “Did you just say love ya back?”

He looked at me and said, “I love you, I love you, I love you.” Each time was slightly louder. I knew he wanted me to be sure of what he was saying and he said it with all his strength.

Exhausted, he closed his eyes. Did I imagine this? No, it was real. I felt his jaw move with my hands and he said it three times, looking straight at me. Without another person in the room, there was no witness. Ecstatic, I wanted to shout to the world that Mark had spoken and recognized me, but I feared they’d doubt me. I didn’t want anyone to squash the joy I was feeling, so I chose not to share this grand news—at least not yet. After helping the aide get Mark back into bed and getting the kids from the playroom, I left the hospital elated, keeping this blessed moment to myself for fear no one would believe me.

Excerpts from my article written March 16, 2015, The Roller Coaster

Enthusiastically, I walked down the hallway of Western Rehab. I was anxious to see Mark and wondered what new words he might say to me today. After hearing him say, “Love ya back” and “I love you,” three times the night before, I was hopeful he’d be even more alert this morning. The hallway seemed longer and brighter and I couldn’t get to his room fast enough. I was tempted to run down the hallway as our children often tried to do, but since I wouldn’t allow them, I decided it wouldn’t be appropriate for me to do it either.

To my dismay, I walked into Mark’s room and the nurse told me he had a fever and his heart rate was fast. He had an infection and the doctor was investigating the source. They pulled the catheter from his bladder and replaced it with a condom catheter in hopes the infection would clear up. Mark was totally unresponsive that day. Even when the kids came to visit that night, there wasn’t the usual blinking of his eyes to their yes and no questions.

We thought the intravenous antibiotic must be working because the following day when my mom brought the kids to the hospital for a visit, he was answering some of their questions with the routine blinks of his eyes. When they kissed him good-bye, he surprised each one with a soft, tranquil, “I love you.” Overjoyed by words which are so often taken for granted, the kids skipped out of the room wearing ear to ear grins, each holding Grandma’s hand, while Mark slipped back into his deep sleep.

I love you

2016 Valentine’s Day at Rocky Mtn. Care

Those three words spoken three times to me and to both of our children two days later were the fuel which got us through Mark’s next fight with phenomena. “I love you” is always wonderful to hear, but we often forget the power behind it.

Three heart-shaped balloons professing “I love you” mean more to me than flowers, chocolate or jewelry. I would appreciate any one of them, but the memory and the recognition that came with the “I love you” said three times with all of Mark’s weakened strength reminds me of the electrifying power it gave me nearly twenty-five years ago. Today is a great day where we are simply and quietly celebrating our commitment to love and marriage.

How do you acknowledge your love on Valentine’s Day?

I look forward to Christine Scott sharing the second part of Laura’s Story on Tuesday.