Scary Confessions

At this time of year, there’s a lot of discussion about what you what to be for Halloween. When you enter most department stores, there are isles of costumes for every imaginable character, but my favorites are the homemade costumes conceived by a clever individual.

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Wonder women shirt at Walmart

I want to be a superhero and not just for Halloween, but every day of the year. I know they’re fictional characters with super human powers, but that’s what I need. It takes a wonder woman to be a successful wife, mother, caregiver and have a professional career at the same time. I want to be friendly and helpful to all those around me. Having a perfect figure with a tiny waistline would be another wanted image when I look in the mirror.

Being a ninja who excels in a particular skill or activity with flawless strength and coordination would come in handy. My trip and fall accident in July proves I’m no ninja, but rather a silly clown who feels clumsy and not too bright.

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Witch costume at Walmart

My reality is that I often come up short in what I’d like to be or want to accomplish. This brings overwhelming feelings, which too often lead to actions and/or behaviors more like a witch. Sometimes the inadequate feelings nearly paralyze me to the point that I can’t decide what’s most important or the best direction to fly.

Yes, there are monsters inside me and they are discouragement and depression. Sometimes my mind dwells on life’s unfilled expectations and what I’m unable to accomplish. And then the ghosts of past memories or future worries come to haunt me, which sink my spirit into despair.

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Vampire costume at Target

Sometimes I’m like a vampire – not just because I have to draw Mark’s blood every two weeks for testing, but because I can’t go to bed at night. I know my body needs rest, but I lack discipline and think I have too much to do and deprive myself of sleep. This brings out the zombie in me the next day, which should only be found in the horror and fantasy genre—not real life.

What I appreciate about real life is I don’t have to wait until next year to change my character. Every day is a fresh start. I have the choice to get out of the character I don’t really want to be and strive to become the desired ninja or wonder woman. I’ve heard it said you are what you repeatedly do. As long as we’re breathing, I don’t believe we’ve run out of times to get back on track, so I can at least do that. Realizing that I’ll never become those fictional characters with needed super human powers is a good reminder to be more understanding of others around me who are also facing challenges, which may be bringing out their less desirable character. I imagine we all have “set backs” which don’t bring out the best in us. However, that doesn’t mean we can’t “come back.”

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Ninja costume at Target

Please forgive me if I act like a witch, clown, monster, ghost, vampire or zombie from time to time. I’m really striving to be a good daughter, sister, wife, mother, neighbor, friend and employee by showing and giving care to those around me. Yes, I keep falling short because I don’t have the super human powers I need to accomplish all I want to do, but I can repeatedly get back on track.

Although Halloween isn’t my favorite holiday, I sure can relate to some of the character costumes which I see this time of year. What are you planning to be? A ninja or wonder woman is at the top of my list.

Laura’s Story, Part 7

Written by Christine Scott

Christine

Christine

Everyone is familiar with the pop song, Stronger (What Doesn’t Kill You) by Kelly Clarkson.  I’ve heard the quote, “what doesn’t kill you makes you stronger” repeated a lot over the past few years. I don’t know if the popularity of the quote came from the song, but I’ve decided to make it my mantra as I approach the very difficult topic of sharing my adolescent and teen years with you. Since the fact I’m here writing this, I’m living, breathing proof that those years didn’t kill me—so I must be stronger.

In many ways I was a normal adolescent girl. My hang-ups were typical. I fought with my mom. I felt awkward. I wanted to make friends and find a boyfriend. I liked all the popular music and wanted to dress in the current brands. I wished I was prettier, funnier, and more popular. I didn’t know my talents. In a lot of ways I was lost—similar to many other kids my age.

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Laura

However, I had a mentally disabled sister I didn’t want others to know about. I’d moved past the point where she was my sister and I’d stick up for her—my reputation was on the line. I was afraid if someone found out about her they’d think something was wrong with me too.

I remember my sister chasing me down the aisle at Harmon’s grocery store and pulling my hair. I remember the humiliation. I remember feeling that maybe it was my fault for not standing up for myself. My brother was bigger than her and she didn’t pick on him like she did me. Should I have been more of a fighter? I’ve always felt like I should be more of a fighter. That I’m too weak, that I let others take advantage of me. And maybe I have.

But I suffered a unique form of abuse—one you don’t hear about. One that doesn’t have a name or a definition.

It wasn’t until just a few years ago that I realized I was an abuse victim. I suffered abuse at my sister’s hands and neglect from my mom’s failure to act in a way that protected me. I realize my mom was overwhelmed with Laura’s behavior problems, but it wasn’t until later she sought help by medicating Laura—and I don’t understand why she waited. I do remember her saying that Laura was so sweet mannered at school that the teachers and whoever else she sought help from, didn’t believe her about the behavior problems at home. Maybe if my mom had a support system, maybe things would have been different.

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Laura

Laura ruled the roost at our house. Mom did everything to appease Laura. From letting her watch the shows she wanted to Mom staying home from work or whatever outing we’d planned when Laura was having an “off” day. She didn’t expect her to do chores or respect the needs of others. Mom’s coping strategies allowed Laura to have terrible tantrums, which were often focused at me.

To keep the peace, my mom told me to go to my room. If I was out of sight, Laura didn’t torment me as much. From my alone time, I learned to love reading and I read a lot of romance books. I became an introvert, which isn’t necessarily a bad thing.

The worst part was the important interactions I missed. Family time. Time spent with my mom teaching me and believing in me and my abilities. I wish my mom would have made more time for me instead of taking the easy road with disciplining Laura. I wish she would have made time for herself, for friendships, for exploring her own talents and interests. Maybe if she had, she would have expected more from Laura. Maybe she would have disciplined her so our family could have been more functional.

But these are only wishes for a different outcome. To be healthy in this life you have to take what you’ve been given and make the best of it.  In retrospect, I wouldn’t trade growing up with Laura. The experience gave me insights I wouldn’t have had otherwise. It’s led me down the path to become an occupational therapy assistant so I can make a difference in situations such as these.

And there’s the proof that I am stronger, but what’s even better—I found a way to thrive despite the challenges I’ve faced.

Thank you, Christine, for being a guest author. I enjoy reading your insights on the challenges and rewards of growing up in a caregiving household where another family member requires so much of the care due to mental and physical health disability. I imagine there’s others who can relate and have been neglected due to the main caregiver’s extreme demands. I’m sorry you were one of them.

For me, as a caregiver, this article spotlights the importance of respite care. Time away from the problems can clear the vision. However, it’s hard to find people who qualify or are willing to take care of the needs of our loved one while the caregiver gets that much needed break.

For our Tip next week, we will brainstorm and list some ways a caregiver can find the help needed for some time to refuel, recharge and be revived.

In February, Christine Scott started sharing childhood segments of her life with her mentally disabled sister, Laura. It’s been inspiring to get a child’s perspective on her family’s caregiving journey and the trials they had to withstand. The first segment of Laura’s Story, recounts her birth and slow development. In Part 2, Christine recalls the impact of Laura’s seizures and in Part 3, details of Laura’s fight with cancer. Part 4, reveals how Christine, at age ten, learned about the accident which lead to her father’s death and Part 5, recognizes the community of angels who helped her family get through their darkest days. Part 6, illustrates the importance of building fun memories with our loved ones, which can ease the grief of losing them.

Our Happy Place

Hip QuoteTwo months ago today Mark had his second total hip replacement surgery. Out of the three most common replacement surgeries, hip, knee and shoulder, we’ve been told the hip replacement is the easiest to recover from. We saw many people during his seven weeks of in-patient rehab days who healed a lot quicker than Mark, even with a knee or shoulder surgery. It’s hard not to get discouraged. This is when I realize having a short-term memory problem is a blessing that Mark inherited from his traumatic brain injury (TBI). He lives in the moment, which is what I’m trying to learn how to do.

DadsRightHipDadsLeftHipThe pain of moving joints, muscles and tendons which have been cut and were not in good condition beforehand seemed at times unbearable. Mark’s ability to make his body move is difficult with his TBI under normal conditions, but throw a surgery in the mix and it’s nearly impossible. However, he persistently works hard to please the therapists and me, doing all that is asked of him, even when he doesn’t feel like it. He has made remarkable progress for his circumstances. When I liken his abilities to before surgery and not another patient, I am thrilled with his progress.

Often right before or during a painful stretch, Mark’s therapist would say, “Go to your happy place.” To that Mark would reply, “My happy place is any place other than here.”

Wanting to be helpful, I started naming vacation spots which hold wonderful memories. “How about the beauty of Zions, Bryce and Grand Canyon; remember the thrill of seeing the parks for the first time on our honeymoon?”

“I just want to go home.” Mark replied.

My thoughts moved to the gorgeous State of Washington where Mark grew up. “I love Deception Pass and the San Juan Islands. I look forward to our next trip there, how about you?”

“Home is my happy place so take me home.” Mark pleaded as the painful stretch continued.

As a wife and caregiver, I want nothing more than for Mark to be better. My world has revolved in this endeavor for twenty-five years next month. In the first few years after his TBI, it was a race against time because it was believed that the greatest amount of progress would happen in the first year and then slow down and plateau within the following couple of years.

Subsequent years we continued seeking for improvement with foot surgeries on both feet to correct foot drop and toe tendons cut to release curl to make standing possible. Also he’s had previous hip surgeries to clean out the joints for improved movement and a Vagal Nerve Stimulator (VNS) implant to help control his seizures along with the various surgeries in the beginning which saved his life. All told, Mark has had fifteen surgeries since the car accident.

Mark turned sixty last November so the path of our journey seems shorter than it used to, which adds a new dimension for recovery importance. It’s evident to me that striving for improvement is a lifetime pursuit. But this is not the life we’d planned and there is a certain amount of grieving that happens over the loss of dreams and honestly some dreams are harder to bury than others.

I’m human and some days I run out of patience and energy. I want Mark to be better now, but recovery is still happening. We are no longer in an in-patient facility, but are now engaged in out-patient therapy. I’m finding it hard to get into a regular routine with the interruptions of driving to and from the needed therapy sessions daily, preparing meals, managing prescriptions and doing the regular household chores. These are the responsibilities I was relieved from while Mark was at the rehab center. Don’t get me wrong, I’m happy to be home, but I’m looking forward to these common tasks becoming second nature to me again. Feeling overwhelmed makes me wish for a far-away trip, a vacation from health concerns and worries. However, the TBI and physical limitations go with us no matter where we are—so there’s really no escape.

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Backyard – My happy place.

At the same time, I’m grateful to be home where we have our privacy and some control over our own time. I appreciate the beautiful place where we live, which was custom built to meet Mark’s needs. For us it is the most comfortable and peaceful place on earth, designed to make our life easier. The openness and wide hallways make it possible for Mark to maneuver in a wheelchair. The large shower which Mark can roll right into and a bathroom sink he can roll under creates independence. Even outside we have cement sidewalks around the backyard so we can enjoy the outdoors together. We are fortunate to live in such a house and we have awesome neighbors too. Whenever I feel sad about the places we can’t go, I remember, there is truly “no place like home.” We are grateful after nearly eight weeks of being away to finally be back in our “happy place.” We couldn’t be more thrilled that the surgeries are finally behind us and given a year to heal, I’m certain Mark will be entirely pleased with his hip replacements.

Where is your happy place?

Feeling Lucky

st-patricks-dayI appreciate Christine Scott sharing her story over the past five weeks of growing up with her mentally disabled sister and the challenges they faced as a family. It’s been insightful and very helpful for me while Mark has been recovering from his second total hip replacement.

We’ve been at the rehab center for the past seven weeks and we’re looking forward to returning home on Saturday. This second battle of recovery has been easier and harder. Easier because we knew what to expect and Mark was in better physical condition to start with.  Harder because we knew what lay ahead of us and right from the start we were still tired from the first surgery.

We were tempted to wait awhile until our vivid memory of the surgery and rehab had dimmed. We moved forward with the original plan because we were anxious to get it behind us and we didn’t want the therapists who worked with Mark on the first recovery to forget what they’d learned about him the first go around. We saw more pros than cons in doing it sooner rather than later, which meant there were six months in between the left and right hip surgeries.

It was a good decision. We’re glad to have it behind us and fortunate to have the same therapists. Their previous experience working with Mark and knowing his physical limitations and capabilities have proven to be beneficial. We’re leaving the rehab center after 52 days rather than the 60 days it took with the first rehabilitation.

We’re happy with his progress and the new range and mobility he now has with both hips done. Last August, I wrote an article, A Man with True Grit, which is my favorite way to describe Mark. He reconfirms his grit daily as he works hard through painful therapy. Since I’ve watched and encouraged Mark through rehabilitation for nearly twenty-five years, the pain is both heartbreaking and tiresome. It’s easy to wonder why it has to be so hard.

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Sam & Mark with their crazy hair hats

One of the benefits of being in a care facility is that we are surrounded by people with similar struggles. Most of the patients here are overcoming a knee, hip or shoulder replacement. A few have a more serious struggle like cancer or a stroke. As I get to know each patient, my heart goes out to them and I rejoice in their progress conquering their individual health challenges. We’re encircled by people with true grit and a few of them are still here from our first stay and feel like family now.

Mark wasn’t the perfect candidate for total hip replacements and we were told it would be a tough recovery for him. He had several tests to determine whether it was even a possibility. Every test revealed a new problem such as severe degenerative disc disease, osteoporosis and scoliosis of the spine. The results were discouraging and overwhelming. The bone density test revealed he was a high risk for a break.

The orthopedic surgeon gave Mark only a 50% chance of the surgery being successful. Mark replied, “I’ve beaten lesser odds,” and wanted to go through with the surgeries despite the risks. Mark’s continuing optimism and determination for betterment is one of the reasons why I love and support him so much. He’s taught me you don’t have to be a cowboy to be a man with true grit.

If you’re old enough, you may remember one of my favorite John Wayne movies made in the 1969, True Grit. The fearless, U.S. Marshal, Rooster Cogburn, was hired by a determined young girl, Mattie Ross, to find the man who murdered her father and fled with the family savings. Rooster was cantankerous and drank too much, but his shooting ability was flawless. He was known as a man with true grit.

The scene that runs through my head as Mark valiantly works in therapy is the one where Rooster rides his horse into an open area and faces alone the gang of four outlaws he’s been tracking down for days.

One of the outlaws shouts, “What’s your intention Rooster? Do you think one against four is a dog-fall?”

Rooster hollers back with sincere determination.“I mean to kill you in one minute or see you hang in Fort Smith at Judge Barker’s convenience. Which one will it be?”

True GritThe gang unwilling to surrender to this one-eyed, pot-bellied marshal moves forward on horseback.

Rooster puts the horse’s bridle reins in his mouth, drawing his rifle in one hand and his shotgun in the other as he charges towards the four men, shooting with both guns.

Despite the unlikely odds and with one heart-stopping mishap, he does take all four gangsters down.

This comparison may seem a bit uncouth and a little irreverent, but it’s what goes through my mind as I watch Mark courageously combat rehab. He boldly confronts each challenge with every ability he has. He fearlessly fights for improvement and gives little thought to it taking him down. He may ride on top of a different kind of saddle, but he is indeed a man with true grit. However, I must add he’s much better looking than Rooster Cogburn and his language, manners and conduct are much nicer too.

Right now I’m surrounded not by cowboys, but warriors with true grit and I’m particularly fond of the one I’m married to. Just like Rooster, Mark has come out the winner thanks to his surgeon, Dr. Rasmussen and his staff, along with the great therapists at Rocky Mountain Care Center. The fight isn’t over yet, but the end of this ride is near and that’s why I’m feeling lucky. A bright rainbow is in sight!

The Countdown

 

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Rocky Mountain Care Carnival September 2015

Facing another total hip replacement makes me so anxious and worried you’d think I was the one going through the surgery. I’m confident it would be easier for me than Mark to recover, so if I could I’d trade him places, but sadly it’s not possible. Fortunately for Mark, he remembers very little about the first operation and rehab. A poor short-term memory is the result of his traumatic brain injury and is a benefit in this case. It appears the surgery is not a big deal to him and maybe that’s a blessing for me also. I only need to deal with my own anxiety and not Mark’s too. However, I just may worry enough for both of us.

This journey began a year ago and to begin with we said, “no way,” but as the pain and stiffness grew and dressing and transferring Mark became harder, we started to consider the idea. I feared my ability to care for Mark was coming too quickly to an end with already needing a large hernia repaired. We discussed: Where do we go from here? Could we live happily apart? Who could take good of care of him and would I be satisfied with them?

Mark wasn’t a perfect candidate for total hip replacements, so he had several tests preformed to determine whether it was even a possibility. Every test revealed a new problem such as severe degenerative disc disease, osteoporosis and scoliosis of the spine and osteopenia (a precursor to osteoporosis) of the hips. These health issues are related to nearly twenty-five years in a wheelchair with limited mobility. Since his hips no longer had the ability to bend at 90 degrees, he spent hours in a poor sitting position, which resulted in terrible neck and back pain. Our bodies are meant to move and if we can’t or don’t, it causes additional problems. The hip replacements became our hope for relief from pain and improved movement in his hips to help with dressing and transferring. However, the test results were discouraging and overwhelming. The bone density test revealed he was a high risk for a break, which is frightful. What should we do and when do we give up? These two questions took months to answer.

The orthopedic surgeon gave Mark only a 50% chance of the surgery improving his condition. Mark replied, “I’ve beaten lesser odds,” as he consented to go through with the total hip replacements despite the risks. The surgeon then warned, “Recovery will be hard due to your state of mobility.”

Well I’m not afraid of hard,” Mark said as I thought, he’s rather accustomed to it. He lives with hard every day, which makes Mark stronger than he appears.

In May I had my hernia repaired and two months later Mark had his right hip replaced. August and September he stayed in a rehab center and has had outpatient therapy twice a week for the past four months. Oh, what a year it’s been and we now understand a new level of hard. Not that we regret the surgery, but we didn’t realize just how long and hard the recovery would be.

Mark’s continuing optimism and determination for improvement is inspiring and one of the reasons why I love and support him so much. We knew with the first surgery he wouldn’t get full benefit of it until he had the second one. I’ve dreaded this second surgery day and wished I could take him far away to a place unknown to earth where there are no limitations and only comfort is felt. If we could fly we’d surely escape, but instead we are here with the surgery date just around the corner. With family, friends, a skilled surgeon and therapists, we are confident he will come out on the winning end and hope it will be sooner rather than later.

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Rocky Mountain Care Carnival September 2015

I’m looking forward to Wednesday, post-surgery day. A week from now we should be in a rehab center healing and working on learning how to make that new hip work. As a wife, caregiver and advocate, I’ll be there every step of the way. Not because I have to, but because I want to be by his side. I know from experience he does better, just as we all benefit in any endeavor with support and encouragement from loved ones.

So if you’re reading this, you must care and we appreciate you for that. We are grateful for every supporter and welcome every prayer for a speedy recovery. We are better prepared and understand what to expect this time around, so it should be much easier. Besides, now he has one good hip to recover on.

Dancing with Class, part 2

On Friday, July 2, 2004, Judith lost control of her bike and flipped into a ditch. Her back was broken. Last Sunday, Neils Knudsen, her husband, shared the emotional and physical impact the accident had on both of them. Today he shares part 2.

Written by, Neils Knudsen

Our search for a new home for ourselves ended when we found a development with new construction. A site was chosen and the contractor was eager to make the changes we needed for Judith. In January of 2005 she removed her clamshell brace for the last time and we moved in to a home with a view.

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Judith at glacier 2006

Judith was excited for the new beginning. Although the doctor visits, medications and surgeries continued for some time, life for her became more peaceful and satisfying. She was free of her constraints and could now test her new wings . . . and wheels. That cruise to the inside passage of Alaska was realized and she began to see a larger, more magnificent world.

The home scene, though more comfortable soon clashed with my work schedule. My normal work hours grew longer along with mandatory overtime on weekends. I couldn’t meet the demands of home and work.

We discussed our options and in April of 2006 I took an early retirement and Judith decided she would return to her old job part-time. I quite enjoyed the change and got a lot of insights into her career.

Construction of other homes was still underway in our development. Hammers, Skill saws, heavy equipment and tons of dust covered the streets and vehicles. It was difficult for Judith to be heard at a distance during the day.

“Neeeeeeee-ills.”

I lifted a handful of clothes out of the washing machine and paused, listening.

“Neeeeeeeeeeeeeeeee-ills.”

I tossed the wet laundry into the drier and ran upstairs in a panic.

“What?” I clutched my knees and panted breathlessly. “What’s wrong?”

She sat at the kitchen table and took a sip of her coffee, the morning paper opened to the daily crossword puzzle. “Hey you,” she smiled, “what’s a 6 letter word for ‘Spring’?”

“Neeeeeeeeeeeeeeeeee-ils.” The unmistakable sound of a power saw knifed through my mind. It turns out, if you stretch my first name out as if you’re calling for me it sounds much like a power saw cutting wood. Add a touch of nasal cavity to it and it truly becomes a power tool.

“I didn’t call you,” she guffawed and pointed out the door. “They did.”

We began to travel, mostly by car. Judith had always been an easy traveling companion and that didn’t change. We no longer rushed to go places, often stopping to explore as we went. She sometimes grew wistful as she watched others strolling together at a scenic overlook. That prickly, stubborn and ‘always in a hurry’ woman had changed. She came to appreciate that what she had gained was equal to what she had lost and accepted a more measured and contemplative attitude. Soon, that new life would include painting the scenes which she now saw with new eyes.

The visits to doctors and hospitals subsided to an occasional check-up. She learned to touch and be touched. Gentleness and acceptance of life grew to replace her ambition. She retired from her job and began to focus more on her art.

Judith is also an avid reader and has a degree in English. She has distinct tastes in what she selects as a reading subject. Unfortunately we don’t share those tastes to any notable degree. So when I started writing as a hobby I chose Science Fiction and Fantasy as my genre. She once tried to read “The Hobbit,” but got bored with it. The same with “Lord of the Rings,” though she loved the movies.

Four years later I finished my first book, The Singing Stones of Rendor. Credit for that project, including all its awards, would likely not have happened if not for Judith. Her gentle prodding, encouragement and constructive criticism was the gas in my tank. I repeatedly tried to kill off one character, but she argued against it—often to the point of bloodshed. I’m glad I listened to her. The arc of the story would not have developed and garnered so many trophies, if any, without her insights and skills at knowing what makes a good story.

My wife is, for the most part, independent and needs little in the way of any physical help to do things. I still help her with some of her transfers on occasion, but not often. The day will come when she’ll need more help. I expect I’ll need some help by then myself. She is the light in the tunnel, the gentle whisper in my ear, my tease, my best friend and motorized mentor who runs over my toes when I get curmudgeonly.

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Alaska Cruise 2006

Judith has never given up. She always listens to people’s stories and encourages them to fight on. The impact she has had on the people around her is best illustrated by a young man she mentored while she worked on Wall Street. He went on to establish his own hedge fund and became a wealthy man. When he heard of her accident he flew here to visit her in the hospital. Later he would establish a scholarship fund in her name at Utah State University which is awarded annually. It is a fitting tribute to this woman who has given, and still gives, so much of herself to help those around her.

My part as a caregiver is insignificant compared to what Judith offers. So, I ask again, who is the real caregiver?

What I can say for sure is that I have been dancing with class.

Thank you Neils for sharing your heartfelt journey. I appreciate getting to know you and Judith better. I agree, you have been dancing with class. 

The Write Invitation

I’ve written a few articles on the value of writing your story. In Six Benefits of Writing I explained how writing is therapeutic. Now I’m inviting you to share your story on Uniting Caregivers. Your story is important and will be inspiring to all who read it. If you’ve been a guest author already, we’d love an update. I hope you’ll give it some serious thought. Please consider this your personal invitation.

Click invitation image to enlarge.

flyer-5.5inx8.5in-h-frontThe questions listed do not have to be answered. They are only suggestions to get you started. If you have questions or concerns,please email Barbara@UnitingCaregivers.com.

You can also check out Writing for Past, Present and Future and In The Beginning to read more about the value of writing and sharing your story.