The Recharge Button

Overwhelmed1On Tuesday, I shared part of Kerrie Neu’s address on A Caregiver’s Button Box. Taking time for ourselves to recharge helps us cope with stress and increases our ability to handle the challenges. The recharge button is whatever brings you joy, helps you feel nourished and engaged.

My favorite tips from the presentation were:

1. Exercise increases endorphins to help you stay positive and happy. It may be as simple as a walk around the block, or may need to be a workout at the gym. Going on a bicycle ride with a friend is a mini vacation for me.

2. Doing something creative brings growth and change. The enjoyment can cause us to get lost in the experience. For Father’s Day, I wrote an article Daddy’s Girl.  I started it after I got Mark into bed. I admit it was later than it should’ve been. I was so engrossed in the memories, words and looking for the right pictures that before I realized how much time had passed, I heard birds chirping and noticed the sun chasing the darkness away. It took me by surprise. I had worked on the article through the night and didn’t once notice the time. I’m not recommending, or plan on repeating such an event, but I recognized how much I relish in writing. I may need to set a timer to keep me from repeating the incident.

3. Each of our needs are different. What brings joy to one, may bring stress to another.

Shoe fit

4. When life circumstances change, we may need to modify our recharge buttons.

Change

5. For more ideas that may refresh and replenish us, Kerrie shared information she found on Twilight InsightThis is an enlightening website for anyone dealing  with traumatic brain injury. Click for instant ideas on selecting a hobby, where to go for hobbies or, a list of hobbies, and more.

6. More great websites to checkout:

Websites

Websites2

JoyThanks, Kerrie Neu, for the great pointers.

I’d like to know, what brings you joy and recharges you?

 

 

A Caregiver’s Button Box

Do you need ideas on how to replenish, recharge and renew as a caregiver? This month at our caregiver’s support group, Kerrie Neu  gave us lots of ideas. She agreed to let me share them here. With her 19 years of caregiving experience she discussed how to find joy among the challenges. Recognizing that every situation is different, these are some of the points she talked about.

noone@graniteschools.orgWritten by Kerrie Neu

“Just like my grandmother’s button box, we have to find the right button that fits the situation.  What may fit with one person may not fit another. Don’t feel guilty if you try something that other people like to do, but it just doesn’t bring you joy.  It’s okay.  I once attended a quilting class that many of my friends love.  I see their excitement and love their quilts.  However, the first month I went I stressed so much about trying to get my block ready for the next month, that I finally realized this was causing me more stress than joy.  For me, it was not the right button. Instead of acting like Cinderella’s wicked stepsisters who tried to make the glass slipper fit, we can simply find another shoe. We don’t have to fit the shoe in order to find joy and a happy ending, we can find the shoe that fits us and our situations.

escape​Let’s talk about some buttons then. First of all, Brenet Brown talks about buttons we have to be careful of. These are the easy buttons or escape buttons that we use to numb and not think about stress. Often they are self-destructive and don’t replenish us. We may think they momentarily help us forget or be happy, but in the end they usually don’t. For me, one of those escape buttons is TV binge watching. I find when I binge watch I ended up becoming cranky with my family. The TV shows themselves aren’t bad, but what I do with them does not nourish me. So I have to be careful of how often I use those easy buttons.

Neu CarsOn the flip side, Brenet Brown talks about reset buttons, or what I called recharge buttons. These are things that we can do to recharge and replenish ourselves. As caregivers these are critical in order to help us be able to continue to give to our loved ones. We talked about the lesson learned from Lightning McQueen in the movie Cars. When he chose to skip his pit stop in the race at the beginning of the movie, he suffered the consequence in the last lap when he blew two tires and ended up at the finish line with his tongue hanging out and his car in sad shape. He had to learn the lesson of working with others and taking time for maintenance. As caregivers, we must regularly take time to find joy and renew ourselves.

There are many ways to recharge. Sometimes we can do little things that only take moments like drinking a glass of water, breathing, watching wildlife, enjoying nature, watching a child, or reading a poem or inspiring quote. Other times we carve out a little more time to connect with a friend, take a walk, play a game, read a book, or create something. Periodically, it’s also good to plan for some extended time to get away and visit with family, attend a conference, or take a vacation. It’s important to find a balance in our life because we cannot give from an empty cup.  ​

Nue Bike TourOver the last 19 years, we have explored many things to see what brings us joy.  Some of our explorations were quite successful, like our bike trip to the Hiawatha Trail in Montana. Others were not so successful, like our bike tour of London.

Nue Bike Tour 1In each case, though, we learned something important and kept exploring. Never give up. Just this year we discovered that Laurent loves to listen to audio books and to do puzzles. Sometimes it takes a little thought, creativity, and extra planning to be able to do something with the one you’re giving care to, but in the end it is so worth it.

Neu Joy​Wes Stafford, former president and CEO of Compassion International said, ‘Joy is a decision, a really brave one, about how you are going to respond to life.’ Life’s hard. Choose joy anyway.”

My take away from this presentation is to be mindful of the escape, easy or numbing buttons which take me nowhere. Instead, look for the creative buttons that replenish, recharge and renew me as a caregiver. The buttons which work for me may be different from the buttons that work for you. What activities bring you joy? Writing is one of mine.

On Thursday, I will post more ideas Kerrie shared with us. You are bound to find some new buttons to try. 

To see the full presentation slides, click here.

To read more from Kerrie Neu see neusounds.com

 

 

The Value of Occupational Therapy

Wanda OT1

Wanda in OT uniform in the middle of the back row

On Mother’s Day, I posted an article about Mark’s Mother’s career as an Occupational Therapist (OTR). I enjoyed interviewing her and thought it was interesting how treatments changed through the years and varied from those with physical, mental or cognitive disorders.

I’d never heard of an OT before I met Wanda. The word occupational lead me to believe they helped people find a job which was most fitting for each individual based on their knowledge and interests. When Mark realized my confusion, he explained she helped people with mental illness perform activities of daily living, which included crafts. Wanda clarified the craft media were used to improve attention span, attention to detail, concentration, planning, generalization, adaptability and socialization skills.

After our accident, I met another OT while Mark was in his coma. She did passive range of motion type exercises with the arms and shoulders. She ordered splints for his hands and wrists so they wouldn’t curl. I learned a Traumatic Brain Injury (TBI) can cause unwanted, excessive muscle tone, pulling hands and feet in positions which would keep him from using his hands properly in the future. Months later, after Mark came out of his coma and in a rehab center, I met another OT. She oversaw a series of full arm castings, which were needed to stretch out his muscles because the intensity of his flexor tone drew his right arm up to his chest and it was impossible, even manually, to stretch it down to his side. After several casts, he graduated into a brace, which he wore for nearly a year.

My experiences with OTs through the years have taught me there is a large range of treatments an OT does depending on the type of rehab needed. I recognize the needs of a TBI patient and one with mental illness are very different, but I wondered if through the years the profession and approach has changed. I decided to ask Wanda, who’s the best resource I know.

How did the field change from when you started to retirement?

“In the late 60s, there was a push to move patients out of institutions into halfway houses and to close the institutions. This was handled very poorly and resulted in a lot of misery for the patients. At this time family involvement became more common.

 When I first started working, there were no tranquilizers or really any other kinds of medications for the mentally ill. Electric shock, insulin shock and “the tubs” were the main types of treatment. A tub treatment consisted of the patient being submerged in a tub of cold water which had a canvas cover with a hole for the patient’s head to stick out and staying there for quite some time as body heat warmed the water. This kind of treatment was given by a Physical Therapist and OTs did not participate in any of these kinds of treatments.

How did you feel about this treatment and did it seem to work?

“Electric shock therapy did work for many patients. It’s changed a lot since the 50s and is still used for patients who are depressed or suicidal. It works quickly and if I needed it, I’d prefer it to the medications.

Insulin shock therapy was used for patients with other problems, but I don’t remember what the differences were. I haven’t heard of it being used since the 50s.

The tubs worked for some patients, but since I’m always cold, it seemed cruel to me.

These treatments were not used together and OTs did not participate. Treatment was determined by the diagnosis.”

What types of experiences can you share?

“Patients tended to self- isolate when first admitted. Some patients were good to others and some weren’t. They hallucinated freely and were sometimes hostile and aggressive. Sometimes patients had to be isolated until they were in better control of themselves. I can truthfully say I never had a problem with a psychiatric patient, as opposed to a patient with tuberculosis (TB) who was going to bash my head into the wall until other patients jumped out of bed and restrained him.”

Yikes! What caused that?

“During my TB internship, patients were confined to bed and the medications for it were limited. They could have crafts to work on in bed for a certain time limit, fifteen minutes per day for example. I refused to give the patient materials for more time and he got VERY angry. I took refuge behind my supply cart and other patients jumped out of bed and restrained him. These were all ex-servicemen in a VA Hospital.”

Sounds like the military taught them well!

Where did you work?

Wanda OT

Wanda on the far right

“Territorial Hospital on Oahu, HI, Northern State Hospital near Mt Vernon, WA, Firlawns Sanitarium in Kenmore, WA, Woodside Hospital in Vancouver, WA and Oregon Health Sciences University (OHSU). Firlawns and Woodside were small, privately owned Hospitals. The others were very large. All patients were legally committed.”

Mark talks about going to work with you at Firlawns as a child and still remembers some of the patients there. He smiles as he recalls one patient who sang Home on the Range. She changed the words to, “where seldom is heard, an encouraging word…”

We have Wanda to thank for our understanding of the benefits of therapy. Many therapists tell me they enjoy working with Mark because he’s willing to try whatever they ask of him. He works hard to recover or maintain the activities of daily living, which he did so easily before the accident. I believe his mother’s influence and her chosen profession kept him from giving up. With just eighteen years of living under the same roof and only twenty-one years in the same state, her inspiration continues to stretch across the miles between them.  It’s a testament to me to the importance of motherhood and the relationship formed in those early years.OT quote

I’m forever grateful for the Occupational Therapists who have worked with Mark. Their skills have made a difference in the quality of our lives.

 

Embrace Your Fears

LauriA good friend, Lauri Schoenfeld, spoke at our caregivers group on April 20, 2017 at the Intermountain Medical Center (IMC) in Murray.  She gave an excellent presentation on embracing fear to move forward. She addressed what holds us back and how to overcome it so we can be our best selves. She is positive, fun and energetic.

Lauri is a wife, mother of three, child abuse survivor, scoliosis survivor and has dealt with massive depression. She revealed four tips to help us overcome our fears to enable progression. 

Written By: Lauri Schoenfeld

1. Recognize your fear and call out to it. Get clear what you’re afraid of. It can be anything. A lot of times our fears are like an onion that has multiple layers. Is it spiders, clowns, natural disasters, death, being betrayed, getting too close to someone, loss, or rejection.

  • What happened to create this fear?
  • How is it holding you back?

If you’re going to let go of fear you have to recognize it first. It’s called gaining consciousness. When you start to feel yourself getting a little anxious or fearful, stop and take notice. Think to yourself, “Oh, here it is. I’m starting to get freaked out.” Then instead of reacting on your instant emotion, breathe and see what’s going on around you that could be creating this element for you. Watch how your body reacts to the situation for future understanding. By doing this you start to disengage from the fear as the ultimate reality. It helps you to realize that you are NOT your fear.

Fear is like a fire alarm alerting you to check something out. It propels us into action. This is good, not bad. We need this. Julia Cameron says, “Fear is not something to meditate and medicate away. It is something to accept and explore.”

Elizabeth Gilbert, author of Eat, Pray, Love and Big Magic, says that when she’s writing and feels fear sit on her shoulder, she acknowledges it and says, “Thank you for worrying about me today, but I don’t need you” and then she continues working. She doesn’t allow fear to control her choices or future because she is aware that she needs fear at times, but at other times she does not.

The ego is the part of your mind that stays focused on the past. It feeds you all the time with messages like “Watch out. It’s going to happen again.” It’s a sly trick which uses our fear that we will indeed hurt again. Instead of being open to different experiences and outcomes, we halt. Most of us are afraid of fear because so many of our experiences with fear have been negative. In reality, it is a very positive and useful tool.

Fear2. Face your fears. You have to surrender to them and become willing to create a different reality. Your life will not turn out differently unless you do something different.

  • What are your truths? (Example: Mine are being a child abuse survivor, scoliosis survivor, a writer, speaker, and a mom.)
  • Write down your truths and start peeling back the layers of the onion one step at a time. Don’t try to take it all at once as your truths are going to be deep, hard and emotional. Be gentle with yourself as you unfold each layer.

Courage

  • If you’re afraid of speaking, go speak. If you’re afraid of snakes, pet one, read a book about one or go to an aquarium and stand in front of the tank.
  • Encourage yourself to do one scary thing each day. It doesn’t need to be large. Every step forward is something to be proud of.
  • Courage, confidence and even fearlessness are the result of facing, embracing and dancing with fear, looking it straight in the eye and having a partnership with it.

3. Learn to love yourself and appreciate all that you are. Once I began nourishing myself, the fears I felt didn’t seem to control my life anymore. I began to have clarity on how to handle tough situations and challenges with more grace, patience and positivity. I began taking charge of what I wanted in my life.

Love YourselfIdeas that work for me:

  • Motivational videos – Brene Brown, Elizabeth Gilbert, and Tony Robbins are a few of my favorite speakers. Check out TEDTalks.
  • Gratitude journal – No matter how tough things feel, there’s ALWAYS something to be grateful for. Looking for those things gives us the opportunity to see that we can indeed find beauty even in the darkest moments.
  • Positive Affirmations – Write five things that you want to start shifting in your mind in a positive fashion. One positive thing per card. If you have negative internal dialogue that you don’t think you’re very smart, write on your card “I’m Smart.” Use reverse psychology and say these five affirmations EVERY SINGLE DAY. It’s important to say those five things like you mean it.
  • Take time out to breathe – I call these moments “Lauri Time.” Depending on the week, sometimes I can do an hour or sometimes its fifteen minutes, but do something that calms your spirits, is enjoyable, fun or creative. Whatever you need in that moment, give it to yourself. You deserve to be treated with gentle loving care too. Write a list of twenty things that you really like and once a week, treat yourself to one of those things.
  • Read uplifting books – There are so many to check out. Chicken Soup for the Soul books are some of my favorite. Form a book club with a group and read a different inspirational book each week.
  • Get an accountability/support buddy – It’s important to find someone you can share your progress with. Every step, whether it’s big or small, is important to acknowledge.
  • Surround yourself with people who can relate to you and the things you’re going through – Having this support system and team will help to keep you grounded, supported and appreciated.

Move Foreward4. Be present and realize that this is your life.

If you were told that you had six months to live, would you live in the present or the past?

What kind of things would you do? Travel to a dream destination, swim with dolphins, spend more time with family, start taking a class you never allowed yourself to do?

Why are you waiting?

Why not start now?

Put on your shield and cross the monkey bars. If you fall, get up and try again until you’re on the other side. You are NOT your fear! You’ve got this.

Lauri and I connect through writing groups and conferences. For more articles by Lauri check out, https://thinkingthroughourfingers.com/. Type Lauri Schoenfeld in the search bar. She’s written many articles for that website.

Thank you Lauri for sharing your tips on how to embrace fear to move forward.

Related Articles:

https://unitingcaregivers.wordpress.com/2015/08/27/overcoming-fear-of-failure/

https://unitingcaregivers.wordpress.com/2015/07/12/feel-the-fear-and-do-it-anyway/

https://unitingcaregivers.wordpress.com/2015/01/21/five-ways-to-overcome-fear/

https://unitingcaregivers.wordpress.com/2014/07/08/overcoming-fear/

Nurturing Relationships

Humans are social beings and no one is totally self-sufficient. As much as we strive to be independent and admire those who appear to be, it’s sobering to realize in order to accomplish some things we need help. When I read, listen or ponder on my own or other’s life experiences, I realized how much we need one another to succeed. As humbling as the fact is, it also encourages me to reach out and give back to others.

Greg & Laura LakeGreg and Laura are wonderful examples of giving back to others. They shared their story with us this past week. Laura talked about some of the mistakes she’d made by saying, “I am fiercely independent and a stubborn woman. In the beginning I turned family and friends away. I said, ‘don’t fly up here, I’m fine’. Then, ‘we don’t need meals, I’ve got this covered.’”

“By turning help down, I alienated the very people Greg and I needed the most. I felt neglected, isolated, abandoned, ignored, lonely, unsupported, disrespected and misunderstood. When I needed family and friends the most, they were all gone.”

How often do we turn away our friends and family because we don’t know how to accept help or because we want to appear stronger than we really are? It’s much more enjoyable to give rather than receive help. When our lives are out of control, it’s scary and we hope we can make it better by managing things on our own. We may not understand ourselves what we need or how others can help so we push the people we want in our lives away.

The words of John Donne (1572-1631) a Jacobean poet and preacher came to mind, “No man is an island entire of itself; every man is a piece of the continent, a part of the main…”

When tragedy happens it’s hard to think about how it’s affecting our family and friends. We may be so wrapped up in our own worry and grief we are blind to the distress it has on others. They may feel left out or don’t know what to do or say.  They may not know how to help if we’re not open and honest with them.

I appreciated Laura’s advice to let people into our lives by letting them help and also by reaching out to others. She said, “It will reward you and them at a time when they are lost as well.  It will strengthen your relationships, not erode them.  You need help – take it!  They need to help!  Give them the opportunity! I challenge you to SAY YES! Learn from our mistakes and say YES!  YES I need help.  YES I could use that dinner.  YES I would love to join that group or club!  YES I could use a ride to my Dr.’s office or therapy appointment.  YES I would love to go on a walk, or to have you push me while you go on a walk.  Take a chance on making a new friend or rebuilding a relationship. As you do, opportunities, love and warmth will envelope you and your human relationships will grow!”

Get Well CardsI learn so much from others and appreciate my own life experiences. Today, in church, I witnessed many people nurturing their relationship with my mother, who has been too sick with back and hip pain to attend church for four months. Under better health circumstances, she has given so much love and service and is a great example to me of building friendships by reaching out to others. Our neighbors and friends ask me often how she is doing and I try to relay their concern to her. Since we live in the same home and attend the same church, I was given many cards to give to her expressing their love and concern. The children also made a big get well poster for her and wrote notes and signed it in their primary class. My mother’s spirit Get Well Primaryis raised up by the thoughtfulness of so many. Seeing the love that others have for my mother also lifted my spirit. I’m grateful for all the wonderful examples I see and have felt in my own life of nurturing relationships. Today, I realized it can be as simple as writing a note to someone.

 

In your life what personal acts illustrate nurturing a relationship? What effect did it have on you when you were receiving or giving the nurturing?

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?

 

Offering Love and Comfort

Broken HeartMy brother gave me an article out of the Reader’s Digest, September 2015 issue, titled The Art of Offering Love and Comfort, written by David Brooks from the New York Times.  I appreciated the suggestions and thought today would be a great day to share them in light of the tragic accident that happened in our neighborhood last week.

The Art of Offering Love and Comfort references the Woodiwiss family whose daughter at age twenty-seven died in 2008 from injuries resulting from a horseback riding fall. In 2013, another daughter, Catherine, at age twenty-six was hit by a car while biking to work. She has endured and will continue to endure a series of operations. Her recovery has been slow. Her mother, Mary, talks about the grief that a parent feels when he or she has lost a child and sees another badly injured, “a pain felt in bones and fiber.”

Through the Woodiwisses experiences, they share a few lessons about how those on the outside zone of trauma might better communicate with those on the inside. The right responses are not limited to what is discussed in the article, but rather a collection of their wisdom, which I found useful. My favorite points as written in the dos and don’ts list is as follows:

“Do be there. Some people think that those who experience trauma need space. Assume the opposite. Most people need presence. The Woodiwisses say they were in awe after each tragedy by the number of people, many of whom had been mere acquaintances, but showed up and offered love. They were also disoriented by close friends who simply were not there, who were afraid or too busy.

Don’t compare. Each trauma should be respected in its uniqueness. Catherine writes, ‘From the inside, comparisons sting as clueless, careless or just plain false.’

Do bring soup. Nonverbal expressions of love are as healing as those articulated. When you see a need and act on it, whether it’s a meal, a needed item or helping with a household chore such as dishes or laundry, it is appreciated. The Woodiwisses recall a friend who noticed they didn’t have a bath mat and went to Target and bought one. It was a thoughtful gesture which they will never forget.Don’t say, ‘You’ll get over it.’ Catherine writes, ‘There is no such thing as getting over it. A major disruption leaves a new normal in its wake. There is no back to the old me.’

Do be a builder. The Woodiwisses distinguish between firefighters and builders. Firefighters drop everything and arrive at the moment of crisis. Builders are there for years and years, walking alongside as the victims live out in the world. Very few people are capable of performing both roles.

Don’t say, ‘It’s all for the best.’ Don’t try to make sense of what has happened. Don’t over-interpret and try to make sense of the inexplicable. Some people have a tendency, especially in an achievement-oriented culture, to want to solve problems and repair brokenness.

What seems to be needed is the art of presence: to perform tasks without trying to control or alter the situation.  Allow nature to take its course. Grant the sufferers the dignity of their own process. Sit simply through moments of pain and uncomfortable darkness. Be practical, mundane, simple and direct.”

I’ve touched on the key points of the article which resonated with me. What insights do you have from your own experiences? How have you been helped or how did you help someone through a time of grief and/or affliction? Your thoughts in the comment box are appreciated. Together we can add to this list and help one another improve in offering love and comfort to those who are suffering.