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.

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.

How to Recognize Angels

AngelsIn Laura’s Story, Part 5, by Christine Scott, she remembers the angels in their lives who came to their aid after the death of her father. We often think of angels as beautiful beings with wings, but Christine was referring to family, friends and even strangers who helped them through a difficult time. A friend of her father sold equipment and hang gliders and put collection jars around town to raise money for their family. An aunt single-handedly packed up their belongings to help with the move and grandparents who welcomed them to live in their home.

These were angels who walked among them on earth—real people with mortal bodies. These wonderful people seemed to be sent from above and knew just what was needed at the moment. How can we recognize the angels in our lives? The answer is simple: acknowledge the kindness and help given to you. Those people who have made a positive impact in your life. I’ve been thinking about it and have listed a few.

  • Our biggest angels are parents. They brought you into the world and most of them sacrificed time and money for your care and well-being. They spent sleepless nights when you were sick or out too late. They were your advocates in sports, music and/or drama. They were your cheerleaders in school and other activities.
  • Our littlest angels are children. They are pure and wise beyond their years. Their innocence and curiosity gives us a new and delightful outlook on things which are often taken for granted.
  • Friends who are honest and loyal and lift you up when you’re feeling down.
  • Teachers who taught you how to read, write and do arithmetic. Most have angelic patience and without their help, you wouldn’t be able to read this right now.
  • Doctors and nurses who attend to your medical needs and help you feel better.
  • Therapists who help you overcome hardships and improve your abilities with their knowledge and encouragement.

We can all be angels by lending a helping hand. As we appreciate and recognize the good in others, more angels become apparent.  When I think of the angels in my life, I realize they all have at least two things in common. First of all they are thoughtful and caring and second, they don’t always seem like angels. But how can they? They are people with mortal bodies and not perfected yet.

It reminds me of a “standing joke” Mark and I have. When I help him stand up I often say, “Look up at my halo,” to encourage him upward. To that he replies, “Oh there it is, resting on top of your horns.”

It’s true, sometimes I’m sweet and sometimes I’m not. However, by recognizing and appreciating the helpfulness in others, it usually triggers more kindness.

Who are the angels in your life and why?

Explaining Death

Laura's Dad5In Laura’s Story, Part 4, Christine shared her memory of the death of her dad.  I imagine the caregiving aspect for her sister, Laura, presented new challenges with the passing of their dad. I look forward to the next segment and learning how they all coped.

I was touched by Christine’s words, “Our adversities don’t define us unless we let them, but experiencing the death of a parent when you’re in your childhood changes your life. You learn the world isn’t a safe place and death is very real and can strike at any moment.”

Although Laura was twelve years old when her father died, her disability made it hard for her to understand death or “going to heaven,” which is what her mom told her every time she asked where daddy was.

The death of any loved one is hard and the recovering process takes time. I remember clearly my first experience coping with the sudden death of an aunt when I was a child. Our capacity to understand death varies depending on age and abilities.

I found an excellent article, http://kidshealth.org/en/parents/death.html#, which describes a child’s capacity to understand death and their possible response to it by age. My summary of the article is as follows:

Before five or six years old, their view of the world is very literal. Therefore, explain death in basic and concrete terms such as the person’s body wasn’t working anymore and the doctors couldn’t fix it. If the death was a result of an accident, you might explain what happened and because of this very sad event, the person’s body stopped working. You may have to explain that “death” means that the body stopped working.

Young children have a hard time understanding that all people and living things eventually die and they won’t be coming back. Even after you’ve explained this, kids may continue to ask where the loved one is or when the person is returning. It’s important to calmly reiterate that the person has died and can’t come back.

The article suggested avoiding the use of euphemisms, such as telling kids that the loved one “went away” or “went to sleep” or even that your family “lost” the person. Because young children think so literally, such phrases might inadvertently make them afraid to go to sleep or fearful whenever someone goes away.

From age six to ten a child can start to grasp the finality of death, however, they don’t understand that it will happen to every living thing one day. Often, kids this age personalize death and think of it as the “boogeyman” or a ghost or a skeleton. They deal best with death when given accurate, simple, clear, and honest explanations about what happened.

As children mature into teens, they start to understand that every human being eventually dies, regardless of grades, behavior, wishes, or anything they try to do. Questions may naturally come up about mortality and vulnerability. For example, a sixteen-year-old’s friend dies in a car accident and a teen might now be reluctant to get behind the wheel or even ride in a car. The best way to respond is to empathize about how frightening and sad this accident was. It may also be a good time to remind your teen about ways to stay safe and healthy, like never getting in a car with a driver who has been drinking and always wearing a seatbelt.

Teens also tend to search more for meaning in the death of someone close to them. A teen who asks why someone had to die probably isn’t looking for literal answers, but starting to explore the idea of the meaning of life. They may experience some guilt, particularly if one of their peers died. It’s best to encourage them to share their grief with you or another trusted, empathetic family member or friend.

A young child might not cry, but react to the news by acting out or becoming hyperactive. A teen might act annoyed and may feel more comfortable confiding in peers. Whatever their reaction, don’t take it personally.

Learning how to deal with grief is like coping with other physical, mental, and emotional matters — it’s a process.

For more information on this topic see http://kidshealth.org/en/parents/death.html#

Related Article: Twelve Things I’ve Learned About Grief 

Thanks for reading. I look forward to seeing your thoughts and/or experiences with explaining death to a child in the comment box below. Sharing what has or hasn’t worked for you could help another person on their pathway through grief.

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.