Where to Find Support

Support gearsWhen Mark was in a coma twenty-six years ago, the hospital provided a class once a week to discuss the effects of traumatic brain injury. Hating the position I was in and the information I now needed, I continued to drag my overwhelmed self into class every week. I wasn’t ready for the information, but I continued to go to the class and read the material they provided because I knew I had to know what might be ahead of us. I felt like I was just going through the motions, but it helped prepare me. Being with others who were in a comparable frightened state brought solace. Through our similar feelings and circumstances, empathy was found.

Months later at the rehab center there was a monthly support group, which Mark and I attended together. I felt comfort associating with others who were experiencing like situations. There is consolation when you realize you’re not isolated from society.

In the past, I hadn’t heard of a support group especially for caregivers, nor did I feel I had the time to participate in one. I knew there was a need, but finding the time is difficult if not impossible for some caregivers. That’s why I started Uniting Caregivers, which includes stories, tips and thoughts for online support.

My good friend, Laura Nordfelt, had a different vision. She saw the need to actually meet and strengthen each other by sharing experiences. She started Caring for the Caregiver shortly after I started Uniting Caregivers in October 2013. They meet monthly at Intermountain Medical Center in Murray, Utah and she’s done a marvelous job picking topics for caregivers. Laura asked me several times during the past three years to join forces since we are both passionate about supporting caregivers. I’ve given a few presentations to the group, but really didn’t know how I could add another item on my overloaded plate, even though it looked delicious and tempting to so.

This group meets at the same time the survivors do so I didn’t have to worry about Mark while I was at another meeting. I also belong to two writing groups; I enjoy the encouragement and information shared amongst authors. Support groups enhance my life and meeting face-to-face deepens relationships.

I decided it was time to juggle my schedule and join forces with Laura last November. I’m excited about the New Year and the presenters we have lined up and will share more of that information in upcoming newsletters.

Support-Stronger TogetherI still realize how hard it is for some caregivers to make time for a support group meeting. Since my mission is to encourage and help others realize they are part of a special society, I’ve decided to write monthly newsletters. I’ll share information and notes from the support group meetings I attend and list others around the Salt Lake Valley. I will include this newsletter on Uniting Caregivers. If you’d like to follow the blog, enter your email address on the website and receive notifications of new posts by email.

If you prefer just a monthly newsletter, please email Barbara@UnitingCaregivers.com. Type “subscribe to newsletter” in the subject line and you will receive a monthly newsletter with upcoming events and information on support groups.

March 2017 Newsletter <<<Click for PDF

What has been your experience with support groups?

 

Carry On

July is full of outdoor activities and celebrations that last all month long in Utah. It’s my favorite time of year with family reunions, outdoor plays, concerts, parades and many festivities to look forward to. The sun rises early, which makes it easier for me to do also. The weather is usually sunny and the daylight lasts until 9 pm, making this month the one to accomplish the most outside. I always have great aspirations for this month.

This year we started the month out by driving to Vancouver, Washington with our daughter, Katie. We enjoyed visiting with Mom Wilson, Karen and Mark Ray. Lucky for us our son, Christopher, lives just across the Columbia River in Portland, Oregon making our visit quadrupled the fun. We enjoyed an Independence Day celebration at the park with energetic music, food trailers, beautiful fireworks and the great company of family. It’s always hard to say good-bye to loved ones especially without knowing when we’ll see them again. We made the long trek home in about fourteen hours, which includes our fuel and rest stops.

My asthma flared up during our trip and I struggled more than usual to get it under control. When we returned home I went to the doctor for what I thought would be just a medication change. I left Mark home alone, expecting it to be a short doctor’s visit since I was her second appointment of the day. My oxygen level was low so they gave me a breathing treatment and oxygen, which confined me to the room until my oxygen level reached normal.

Two hours later, I left the room anxious to get back to work and to Mark. Remodeling construction had started near the large entrance/exit sliding glass door of the building. With no cone or sign before it, I didn’t see the piece of metal track that had been attached to the tile floor during my doctor’s appointment. I tripped and fell on it, landing hard on the tile, dislocating my right shoulder.

Dislocated shoulder 1

Dislocated Shoulder 07/08/16

My body wrenched in pain like I’d never felt before. I tried to get up, but couldn’t. A man came to my aide and before I knew it, I was sitting in a wheelchair and whisked to the Urgent Care Clinic in the building.

I heard someone report I was in and out of consciousness and my vitals dropped. “Call an ambulance; she needs to go to the hospital.”

“Please put my shoulder back in place,” I pleaded. “I need to get back home to my husband.”

The look on the doctor’s face helped me realized how silly the statement sounded, so I explained. “My husband has a traumatic brain injury and is confined to a wheelchair. He depends on me to get him in and out of the chair.”

“I don’t believe you’re going to be able to lift him for six to eight weeks,” he said while placing an IV for fluids and another one for morphine.

The first stranger who rushed to my aide looked at me drenched in perspiration from the pain and in sympathy said, “I’m sorry. Don’t worry about the medical cost. We’ll take care of you.” I assume he was the job foreman.

Submissive to all the medical team requests, I moved every which way they asked as they transferred me to the stretcher and rushed me to the hospital. For the next three hours the only thing on my mind was getting my shoulder back in place. My right arm went from feeling like it weighed 100 pounds, to numbness, to sharp, shooting pains running down it. I was sure my arm was dying and at times I thought death would be my only relief. No matter how many times I begged them to fix my shoulder there were tests that needed to be done to make sure I didn’t need surgery or an x-ray that had to be taken to show the best way to maneuver it back in place. Finally I was given a conscious sedation and like Humpty Dumpty who fell off the wall, I was put back together again. Instant relief followed, but then came the body shakes, which I will take anytime over the pain of a totally dislocated joint.

Located Shoulder 2

Healing shoulder, 07/19/16. The bump on my clavicle is from the break 25 years ago. I’m glad it didn’t break again!

I’m an aging caregiver who is dedicated to the love of my life. My worst fear is not being physically capable of caring for him. I’ve always known it’s a possibility, but I don’t know how to prepare for it. I know the options and none of them feel right. Even the option of relying on family and friends for help ties my stomach up in knots.

This year the sunny month of July has been the darkest I have felt in a long time. Depressing thoughts linger because my body can’t do what it wants to do. With my arm splinted in a sling and strapped to my side to allow torn tendons and ligaments to heal, my mind keeps focusing on the negative aspects of my life. Having to depend on others to help with Mark’s care for several weeks makes it hard for my heart to find hope in a brighter future. How do I dig out of this gloomy place and feel the sunshine in my life again?

brigham-young-and-pioneers-entering-the-valleyAnnually on July 24th, our state honors the Mormon pioneers who arrived in the Salt Lake Valley in 1847. I imagine after pulling handcarts or driving wagons with oxen or horses across the plains more than a thousand miles, the pioneers were happy to settle the desert landscape now known as Utah. Last week our celebration reminded me their trek exemplifies courage and faith. Their stories inspire me. They endured harsh weather, death of loved ones and starvation as their food and water supplies diminished.  Nothing had prepared the majority of these travelers for the exhaustion, illnesses and injuries they would suffer. They were beginners in a new territory, learning a new way of life.

I see similarities between my caregiving trek and my pioneer ancestors who walked approximately 1,248 miles from Nauvoo, Illinois. Although we thankfully have the comfort of a home with plenty of food and water, nothing had prepared me for the anxiety and exhaustion of caring for another, or the illnesses and injuries which keep arising. As we make it through one challenge only to receive another, I continue to be a beginner in a new territory, learning a new way of life that most people can’t fully understand. I am a modern-day pioneer and so are you as we struggle through our own personal trek. This connection gives me courage and faith to carry on.

The pioneers didn’t know how or when their journey would end. Similarly, I don’t know how or when ours will end. Like my ancestors’ examples, I’m committing to carry on with faith in every footstep for a brighter future. Even if we don’t reach our desired destination in this life, I believe we’ll be blessed beyond the grave, free from the harsh physical ailments which we have endured. With confidence, I picture this celebration far grander than I’ve ever witnessed and possibly can even imagine.

Just as I started the month of July with great aspirations, I end it with the same for the future and will carry on as best I can.

 

The Effect of Brain Injury on Caregivers

Laura &amp; Greg kissingOn the third Thursday of every month, Laura Nordfelt inspires and uplifts caregivers in the Salt Lake Valley at the Intermountain Medical Center in Building 1. I met Laura and her husband, Greg at the 2013 Annual Brain Injury Conference. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the desire to return to a familiar way of life are very similar.Our hearts knitted together as they shared their story with me and their goals for helping those affected by brain injury.

At the last caregivers’ meeting on March 17, 2016, Laura shared some of her feelings on how brain injury effect’s the caregivers. I was unable to attend, but Laura emailed me the handout she’d put together. I was impressed with how accurately she’d expressed my own feelings. When I called to tell her how well she pinpointed my thoughts, she said many others at the meeting told her the same. With her permission, I share them with you.

Written by Laura Nordfelt

 Feelings of Isolation – You may be worried or sad because your loved one doesn’t “know” you or “understand” you the way he or she used to. Sometimes your new life may feel like a life sentence of solitary confinement because you are alone with the thoughts you used to share with your significant other. Remember its ok to feel frustrated. You may feel guilty for having thoughts of “not living up to the task.” Forgive yourself.

Brain Injury is Contagious – With shock and stress your brain might stop working the way it used to. You may experience memory loss, forgetfulness, following through with plans, lack of organizational skills, etc. TBI caregivers deal with a new plate of responsibilities in epic proportions. Some caregivers find it necessary to write every detail down (i.e. wash my hair). There are even stats to back up our forgetfulness and occasional depression and anxiety.

I Don’t Know How to Ask For Help – This was by far the hardest for me. I had too much pride and began to develop guilt and inadequate feelings like, I’m not doing a good enough job. Should I be leaving him to go to work? Is it ok for me to have free time?

Taking Care of Myself is a Group Effort – It sometimes means that you have to say “no” to phone calls, emails and events that you used to say “yes” too! Those very people who told you to take care of yourself may even get offended. Saying “no” will give you permission to get the much needed quiet time away from the world.

To truly support a caregiver in successful self-care, expectations need to be substantially lowered. This will lift the caregivers load enormously! Telling a caregiver to “take care of themselves” initially after an incident, may be too overwhelming. This advice needs to be delicately communicated in a loving manner at the right time and phase.  The closer a loved one is, the better they will be able to discern when it is essential to help a caregiver understand the “self-help” concept.                                                                                                         

I’m Not Perfect and There’s No Manual – Some days you will shine at caregiving and some days you won’t and you may doubt yourself. This is an intense situation. It’s a brain injury and it’s not just packaged into a small amount of time. It’s a lifetime role change. Just do the best you can and forgive yourself.

We received a large packet of TBI and Neuro Rehab information when we were discharged from the hospital, but I have no idea what happened to it.  I was in survival mode during the first 6 months after Greg came home.  Details and instructions were difficult to remember and organize. There was significant pressure coming at me from all angles. Keeping things straight became a foreign strategy.                               

Brain Injury Doesn’t Go Away – I received a lot of help at first and then support started to get quiet. In some ways it’s comparable to a death. Family and friends sort of go away over time. I realized its natural, but I was still trying to handle significant TBI rehab issues. Brain injury doesn’t go away. It goes with you on vacation and it’s with you everywhere. People will have to adjust to a new way of interacting with you and your survivor. Your friends and family may miss the old you, who you were individually and as a couple. That’s okay too.

I found that the first year is about surviving.  Then it’s about processing all the things you’ve lost while still being grateful for what you still have. This is much harder work!      

Making Lemonade from Lemons is an Art Form – Most of the comments I heard from Greg’s accident were positive and supportive. However, a few caught me off guard making me feel as if our lives were ruined. I refused to accept his brain injury as a life in ruins. If anything, it has provided us the challenge of living better and more productive lives than we were before.          

Volunteering in the TBI Community – Greg’s brain injury provided us both with volunteer opportunities that we never would have imagined. It’s brought us closer together in so many ways. It’s about looking for the silver lining in life.  It’s about lowering our expectations and getting real about what really matters in life like relationships, joy, time with loved ones, great meals together, sunsets, etc. What we would have considered small accomplishments are now huge victories.

Laura &amp; GregSome of Laura’s thoughts and ideas originated from Abby Maslin, Reinventing our family. Ref: http://www.abbymaslin.com/ I’ve been reading Abby’s blog and I highly recommend it. She expresses herself very well and also writes articles for  http://www.brainline.org/abbymaslin/

For more about Greg and Laura Nordfelt’s story, see the articles I shared on March 30, 2014 and their news interview on September 20, 2015.

Thanks Greg and Laura for all you do for the Brain Injury community.

Laura’s Story, Part 5

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 Part 2, I told about the impact of her seizures and Part 3, her fight with cancer. Part 4 revealed how I learned about the accident which lead to my father’s death.

Life has a way of going on, even when tragedy strikes. You put one foot in front of the other and get through the hard times. I wish I could say my family survived the year my dad died by praying and relying on our faith, but I can’t. We weren’t the praying type. I believe it was the love and faith of others that carried us through those dark hours and days.

Laura &amp; Chris1

Laura & I

Even though I wasn’t aware of it at the time, my dad’s death shook the small community of Morgan, Utah, and those good people surrounded us with their love and support. Our house was being sold out from under us so we had to move and with Dad gone, there was no longer a reason for us to stay in Morgan. We had planned to move to Ogden, but after his death it was decided we should move in with my grandparents in Kearns, Utah.

My dad passed away on a Wednesday and we had his funeral on Saturday. It was a closed casket viewing because his head was crushed during the accident, with only a graveside service.The service was simple, the way he would have wanted it. Since he was an army veteran, his plot was donated along with his headstone.

Roland Sinfield, an angel in our lives and a colleague of Dad’s, sold equipment and hang gliders out of my dad’s shop and put collection jars around Morgan to raise money for our family. After daddy’s funeral, he gave my mom $700 from those collection jars to help cover funeral and moving expenses.

We had many other angels in our lives and my aunt Jean was one of them. Single handedly she packed up our house—which she deserves a medal of honor for this amazing feat. I’d spent the previous summer in the field by our house, catching the biggest grasshoppers I could find. I put them in mason jars and stacked them in my closet. I don’t know how many jars I collected, but the bottom of the closet was pretty full. After all these years I think Aunt Jean is still traumatized from cleaning out that closet.

Laura 12

Laura, age 12

We moved in with my grandparents in Kearns, Utah. In less than two weeks after my dad’s death, my mom enrolled Laura and I in new schools.When I asked my mom about this time in Laura’s life, she doesn’t remember much about how the events affected Laura. She was struggling through her own pain. She does remember sitting with a counselor at Hartvigsen, the special education school in Granite School District. While getting Laura enrolled, Eric, who was only eight weeks old, began to cry. Laura told the counselor he was crying because we needed to teach him how to talk. My mom said it was so cute and one of her favorite memories of Laura. I’m happy she’s able to look back at this difficult time and find a small amount of joy.

In addition to the angels in our lives to help us through this time, we had our habits and routines. Doing activities which were important like going to school, washing dishes, caring for our newborn baby brother Eric. By getting back to our normal lives—we began to heal.

Laura's family

Family photo with the grandparents we lived with after daddy passed away.

Recalling my dad’s death, I take a great amount of comfort in how we survived this tragedy, in how our family and community pulled together for us. No one wants bad things to happen in their lives, myself included. But if tragedy strikes—I know my family and I will be all right because we’ve been through some pretty rough circumstances and came out stronger in the end.

Thank you, Christine, for sharing how your family coped with the loss of your father. I know from my own experience the value of the love and support from family and friends. The kindness of strangers in a community is heartwarming and uplifting . The total impact of many is huge in carrying us through difficult times. I like the saying, “if you care and you give, you are a caregiver.” This segment of your life truly demonstrates the variety of caregivers. While your mom was the major caregiver for you, your sister with special needs and an infant, thank heaven there were angels that carried her through those dark days. Generally speaking, we often don’t realize the difference we can make in another’s life.

I’m grateful for the angels in my life and in yours.

 

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.

 

The Wonders of Recovery

Mark’s left hip replacement went well last Tuesday, January 26th, despite the delay. It didn’t even get started until 5:30 PM due to difficulties with a prior surgery. Around 9:30 PM he was moved into a hospital room groggy, but awake. It made for a very long day and night. His appetite and strength have been very good. The main concern has been the dark, huge bruise from under his armpit to his waistline, not where we expected to see bruising after hip surgery, which makes me wonder what went on in that surgical room.

Wednesday, Mark had a radiation treatment to slow the bone growth in his hips, which is the cause of his joint problems. Thursday, he was released from the hospital to Rocky Mountain Care.

If you’ve experienced rehabilitation, you’re probably familiar with uncertainties like: How long will it take to recover? When will we realize the advantage of surgery? How much pain will have to be endured? These and possibly many more questions, along with the enormous desire to feel better right now are part of the recovering process.

Before Mark was discharged from the hospital with the right hip surgery last July, I visited six rehab centers in our area which were listed with the insurance company. I can’t imagine spending such an important and limited time in a facility without doing research first. With the doctors recommendation, we’d wanted Mark could go to HealthSouth for rehabilitation. They specialize in neurological problems and since Mark has a traumatic brain injury (TBI), I knew they had equipment which Mark would need for rehab. However, the insurance wouldn’t allow it because this rehab was based on a hip surgery and not TBI. Disappointed, yet determined to get Mark the best possible help with therapy, our second choice was Rocky Mountain Care. I was impressed with their homelike atmosphere, clean smell and they had more equipment than the other gyms I visited on the insurance approved list.

Mark’s TBI and physical limitations give him special needs. At home we have a standing frame and a roll-in shower along with a shower/commode chair which he uses daily. The rehab centers on our insurance list didn’t have either and since they’re important for his recovery, therapy plan and general health, I’m willing to bring them from home along with his custom walker. The challenge is finding a room which has space for it all, plus an extended bed for his height and a trapeze, which helps him change position while he’s in bed. Along with these essentials he needs the capability to maneuver his wheelchair in and out of the room. Wow, this list sounds pretty lengthy and must be why we don’t travel anymore.

Suite office &amp; kitchen

Suite kitchen and my office area. Door in between goes to bedroom.

Suite living room

Suite living room

Fortunately, Rocky Mountain Care has a couple of rooms which can accommodate Mark’s needs and they’re willing to let us arrange the room to do so. In August and September of 2015, we were lucky enough to get a suite. It was beautifully furnished and definitely the nicest room in the building. The kitchen had a full-size fridge , small microwave and a solid wood dining table with six cushion chairs.

Suite living room (2)

Suite living room with therapy balloons and balls.

Suite bathroom

Suite bathroom

The living room was furnished with a couch, two comfortable stuffed chairs separated by a table and lamp and a television on top of a beautiful wood stand. A large wood desk was in the back of this room by a glass sliding door which led out to a small patio. The view of the mountains from the living room and patio was spectacular.

The separate bedroom had two twin sized beds, a large dresser, a chest of drawers and a roomy closet. The bathroom had ceramic tiles with a roll-in shower and was perfect for the shower/commode chair or wheelchair. This is unlike any other room Mark’s ever had in a rehab center. We felt spoiled and a little guilty for having it.

Rehab1

Therapists, Brandi and Trish

The room was wonderful, but the biggest advantage to Rocky Mountain was the therapists. They were knowledgeable, caring and worked hard to improved Mark’s abilities. For this reason, they were our first choice this time around. It was nice to have the decision made before surgery and it actually decreased a day in the hospital because we made the arrangements beforehand.

Since Mark has a severe short-term memory problem, he is dependent on me to keep him oriented. Unfamiliar surroundings and routine make him feel unsettled and his memory is worse. He forgets what he’s supposed to be doing and where he is, which can make him agitated or anxious. Since I want him to get the full advantage and have the best experience with rehab, I prefer to stay with him. The suite made it easier, but because it’s a lot more costly than a regular room, we are not in the suite for this round of rehab. It’s been an adjustment and the difference is like being on a cruise verses camping complete with an air-mattress for me. It’s hard for me to go home because I worry he might have a seizure and the nursing or aide staff will not know. I wonder if he’ll be able to find or remember how to use the call button when he needs help and the waiting time for that help also concerns me.

Mark's bed on the west wall.

Mark’s bed on the west wall.

IMG_1025

Entrance to room

I like to be involved in Mark’s care—not to interfere, but rather assist while he is here. However, it’s awkward to step back since I’ve been taking care of him for so many years. I have to continually remind myself  that what seems so obvious or natural to me isn’t for the professional caregiver who has several patients at one time with all different levels of abilities. I’m realizing every rehab experience is different even with the same patient, therapists and caregiver staff.  But the goal is always the same—to get home stronger and better. We’re confident it will happen with the therapy and supported care we have here.

Mark's standing frame and my work station.

Mark’s standing frame and my work station. West and south wall.

IMG_1030

East wall with my air-mattress standing up, which I lay down for sleeping.

 

 

 

 

 

 

 

We are grateful for all the well wishes and prayers. We feel blessed and amazed at Mark’s ability to heal and adapt to foreign implant objects. This along with all the love and care of others is the most wonderful part of recovery.

In The Beginning

It has been too many years since I’d sat at a desk in a classroom, I thought while looking through the Adult Community Class Winter Schedule. My 2013 goal was to write a memoir about our experience surviving traumatic brain injury (TBI). It had been a story I wanted to write for twenty-two years, but didn’t know how to go about it. I knew I needed knowledge and help with this goal, so I was especially interested by the “Writing Class” listed on the schedule. I didn’t know how I’d make time for this class between my work and caregiving demands, but I signed up for it anyway.

I recognized the familiar echoing taps of my shoes as I rushed down the large empty hallway of Indian Hills Middle School looking for the classroom.  It should have only been a ten minute drive, but it took me longer because I’d never been there before and it was hidden in a subdivision unknown to me. I opened the closed door, late as usual and unsure of what I’d gotten myself into. As I hurried to find the closest chair, the teacher, Brenda Bensch, smiled and welcomed me to the class.

Embarrassed by my tardiness, I apologized as she handed me the outline for the next several weeks. Although I wasn’t getting a grade or any kind of credit for the class, I wanted to do my best. I felt overwhelmed by the schedule. How would I fit writing on top of all my other responsibilities? I stayed focused on my goal and stuck with it.

Not the most flattering picture of me, but the only one I have with my writing teacher, Brenda Bench (in the red) and favorite classmate, Susan Knight (in the blue).

Not the most flattering picture of me, but the only one I have with my writing teacher, Brenda Bensch (in the red) and my favorite classmate, Susan Knight.

That class and the next one in the spring influenced my life for the better and I have Brenda Bensch to thank for it. Some of her words of encouragement ring in my ears to this day. She taught if you want to be better at writing, you have to practice, just like anything else you do.  “Start a blog; write every day or at least three times a week.”  In my mind, I scoffed at the suggestion. There is no way I could make time to do that. I just want to focus on my book.  The more I wrote and had my chapters critiqued, the more I realized the importance of practice.

That summer Mark was hospitalized three times for blood clots. He got really weak so we spent twenty-one days at Rocky Mountain Care Center. While we were there, Mark’s occupational therapist, Jessica, suggested I start a caregiver’s support group. I thought, Where would I find time to do that? Jessica urged me by expressing the need, which she observed from other personal caregivers. “Your experience could be valuable to them.”

“Maybe I could start an online support group which could encourage and help other caregivers in the comfort of their own home and whenever it’s convenient for them.” Jessica loved the idea and just about every day for the duration of our stay she encouraged me to do it.

I work on a computer daily, but had no experience online. How do I create a website which could encourage caregivers? My talented daughter, Katie, designed Uniting Caregivers and taught me how to use it. I’m so grateful for her skills and patience with me in this endeavor.

My past writing experience has mostly been on a business level of composing demand letters for payments on delinquent accounts. Writing a book or an article is a very different style of writing and much more enjoyable I might add. I appreciate and I’m so grateful for my sister-in-law, Dianne, who proofreads every article and corrects my punctuation. She gives me the confidence I need to publish the article.

Today marks the second anniversary of Uniting Caregivers.  I’ve learned much about caregiving and caregivers through the story’s others have shared. Through my experience the past two years, I realize how therapeutic writing is. It has increased my understanding of others as well as myself. As I search for the right words to express my thoughts and feelings, I come to see things more clearly.

In the beginningEvery caregiver I see, I admire. They’re putting another’s need before their own wants. I feel their exhaustion and worry. I share their overwhelming responsibility and increased love for the person they care for. Without even exchanging words, I feel connected to them. I want to know about their story. How do they manage all they have to do? What keeps the love growing and resentment at bay? When would they have time to share their thoughts and feelings?

I’ve greatly benefited from this experience and appreciate you as a reader or a guest author. If you’d like to share your story, I’d love to publish it on Uniting Caregivers. It may seem like a daunting task, but I’ll help and support you any way needed. Your experience will be valuable to me and to others. We are in this together, encouraging and inspiring one another.