The Effect of Brain Injury on Caregivers

Laura & 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 & 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.

 

Seizure Insights

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

What is a seizure? 

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

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

What happens in the brain during a seizure?

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

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

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

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

How to Bring Comfort and Support

true-friend-quotationLast Sunday Christine Scott wrote part 1 of a series about her sister, Laura’s Story. She stated, “… what happens when those long awaited milestones don’t happen, when friends and loved ones question your child’s progress, and maybe suggest something is not quite right? When illness and hospital stays become commonplace, how do these parents cope?”

Connecting with someone who is dealing with tragedy or heartache can be uncomfortable, especially if our friend or family is facing something we’ve never experienced. Walls may be raised as a coping mechanism on each side. How do we gently and gracefully break through those walls?

Christine also wrote, “Well-meaning family and friends commented on Laura’s lack of progress, but my mom refused to believe them. Her response: ‘She isn’t that delayed for an eighteen-month-old. She’s just a late bloomer.’ Laura was beautiful. Laura was perfect. She was everything my mom dreamed her to be, so she didn’t listen. Even the family doctor supported my mom’s theory about my sister being a late bloomer. Looking back, my mom admitted she didn’t want to know. She didn’t want to face the hard, cold reality that something was seriously wrong with her baby.”

This heartfelt article made we wonder how we bring comfort and support to family and friends during heartache and trials. How do we know if we are hurting or helping another? Will our advice or opinion give direction or will they resent it? Advice at the wrong time or our choice of words can be damaging to a relationship. With these questions I searched the internet and found, How to Comfort Hurting People and I made a list of suggestions taken from http://www.net-burst.net/help/counsel.htm.

  • Think the best of people. See them in the best possible light. People under pressure can explode at the slightest additional pressure. If you happen to add that tiny extra pressure, don’t take the explosion personally. Do not feel badly about the person or about yourself for what happened.Hold your friend in high regard and know that it is the pain talking, not the real person.
  • Listen intently. Eye contact can reinforce the person’s awareness that you are interested in what they are saying. Be relaxed during times of silence. Perhaps give a reassuring smile or squeeze the person’s hand. Don’t feel pressured to fill the silence with chatter. Have confidence in the comforting power of simply being there. Feel their pain, be thrilled with their triumphs and enjoy their jokes.
  • Regard tears as being as natural as breathing.Give a reassuring squeeze of the hand or by some other means show that you are relaxed about any emotion that is displayed. Assure the person tears are fitting and nothing to be ashamed of.
  • Gently probe.Asking an occasional question shows genuine interest. By asking appropriate questions you confirm that you really want to know and that they are not imposing on you. Of course, there are people on the other extreme who feel offended if asked, so we need to try to raise these matters with gentleness and sensitivity and in a manner in which the person can easily decline to answer without embarrassment.
  • Look for a positive twist to the situation. If every cloud has a silver lining, hunt high and low for it. With great sensitivity, ease the person’s attention in that direction. However,don’t do this in a way that could seem like a put-down, such as giving the impression that they should have seen the silver themselves, or imply they should find the positive side comforting. Leave it to them to decide if it’s the slightest compensation for the pain they are experiencing.
  • Every person is different. What worked wonders for others, could end in disaster despite your best intentions for another. The fact that some people recover or accept a situation far quicker than others can tempt us to give up on the slower ones. Human nature is complex and every person feels and reacts differently.
  • Keep looking for feedback and signs as to adjustments needed in your approach.Not only is every person different, people’s needs change during the course of their ordeal. For instance, when tragedies first hit, a person is often overwhelmed with visitors and attention, but this tapers off until the person is left having to cope with the opposite extreme. Also, be mindful to not over-stay. Make it obvious that you are happy to stay, but ask now and then if they would prefer to be alone for a while or if they would you like to rest now.
  • Don’t be a know-all. Avoid anything that could possibly give the impression of putting yourself above the person. When appropriate, briefly confess you own struggles.
  • Consider practical help, such as shopping, housework, cooking.This may be a valuable way to help.
  • Allow yourself time out to recharge.It is both loving and wise to ensure you have guilt-free fun times. This will do much to keep you primed for doing your utmost in supporting the person. Be mindful, the person might not be in the mood for hearing you describe your fun.

All of us at one time or another will experience grief and devastation. What helps you get through your heartaches? How hard was it to let others in and to accept help? Your comments are appreciated.

Preparing for Change

Change is constantNothing is more predictable than change; it’s always happening. No one’s life is free from it and if there wasn’t change, life would become stagnant and boring.

After writing Appreciating Sixty Years, I was in awe of all the changes we’ve experienced in this amount of time. Most of the changes denote a great deal of progress and are fun to reflect on.  However, there are many changes which can make us sad and distraught. I was reminded of this as I posted The Blessing of Adversity, a church talk Mark gave 25 years ago, just four months before our car accident. In just a moment, our life quickly changed in the most unexpected ways.

How can we prepare for change? Some incidents catch us completely off guard and we have no time to prepare. I’ve listed some of my favorite tips from two different websites I researched realizing there will be situations which we cannot completely prepared for.

Reference: http://www.positive-changes-coach.com/how-to-deal-with-change.html

  1. Simply notice that you’re in the midst of change which is part of life. This may seem like a no-brainer, but it takes some practice to become aware of change instead of subconsciously denying it. Don’t try to run from it. If you have a journal, write about changes you notice.
  2. Face your feelings about the change, especially when the change is imposed and beyond your control. Get past “Why me?” “But I don’t want to!” and “It’s not fair!” Figure out what your fears or worries are. You don’t have to be a victim, even when you are not in control of the change. Write about your feelings.
  3. Adopt an attitude of anticipation. Welcome change as an opportunity. Find the benefit somewhere in the change. There is always a benefit and an opportunity. Write down the things you are grateful for. As you recognize the advantages you will notice a more powerful attitude of anticipation.
  4. Choose your thoughts and attitudes about each change. Negative thoughts block your creativity and problem-solving abilities. Positive thoughts build bridges to possibilities and opportunities.
  5. Learn to relax more. Deep breathing works for many people. Exercise also helps. Choose the way that works best for you. Relaxation allows you to deal well with change.
  6. Set smart goals so you can consciously guide the change. Smart goal setting helps you decide how to make the change happen and to recognize your successes. Write out your goals and your plans to meet them.

Reference: http://www.dancingwithhappiness.com/2012/strategies-for-dealing-with-change/

  1. Cut yourself slack. Recognize change is hard and making allowances for it helps. We are better able to make the transition by being gentle with ourselves.
  2. Keep the familiar. The familiar feels comforting and can re-center us when we feel thrown off. So keeping what is familiar in the midst of change—sticking to a familiar routine, doing familiar work, seeing familiar people, going to familiar places—helps tremendously.
  3. Get help. Some changes are especially hard. The important thing is to get through them in the healthiest way possible. Sometimes, that means getting help from others – family, friends, colleagues, and mental health professionals. There is nothing wrong with getting help. Suffering silently and indefinitely when other options are available is pointless.
  4. Find a new normal. The familiar feels good because it feels normal. Change feels hard because it doesn’t feel normal. As long as we keep trying to find the old normal in our changed situation, we will continue to struggle because the old normal no longer exists. But a new normal is possible. When we establish new patterns for ourselves, those new patters start to feel familiar and become our new normal and that new normal feels good too.

What tips can you share in how to deal with change?

How to Keep Thanksgiving

give thanks-candleA perfect picture of Thanksgiving is sitting at my parent’s large dining room table, beautifully decorated with an autumn tablecloth, centerpiece, nice plates, glasses and silverware, surrounded by wonderful family and friends.

I was in this type of scene a few nights ago, however it wasn’t a Thanksgiving dinner, but rather a birthday celebration. My mother still enjoys gathering her five children and their spouses home for a feast three or four times a year to celebrate birthdays. Lots of laughter is heard while we enjoy each other’s company. This is a happy table, yet I came to it feeling overwhelmed and discouraged. I tried to mask the weight of my daily tasks and worries about Mark’s health. When the conversation turned to past vacations my siblings had taken and the possibilities of future trips, I forgot all my many blessings and had to leave the table. Instead of feeling joyful for their experiences, distress set in. I was no longer focused on how lucky I am to have all my siblings live close by and both my parents still alive. For a moment, I forgot how fortunate I am for the love and support we all share with one another. Unfortunately my thoughts turned to all the places I’ve never been nor could possibly go to. I wasn’t living in thanksgiving, yet I know I’m happiest when I do.

Thanksgiving is more than the annual national holiday which commemorates a harvest festival. It is an expression of gratitude, especially to God. I appreciate this time of year which reminds us the importance of giving thanks, however, every day should be a day of thanksgiving. But it’s hard to give thanks in all things.

Life with Mark is a happy one, largely because he knows how to keep thanksgiving. He appreciates everything, including his adversities. He is cheerful and content and loves to bring joy to others. However, he has reason to be bitter, resentful or has cause for deep sadness due to loss of abilities, a beloved career and painful health issues. I know I am lucky to be a caregiver to one who has such a grateful heart. I know many caregivers who are not as fortunate. Three of my favorite ways he shows his appreciation daily are:

Says “Thank You” Often — Two simple words, yet they are so powerful! Hearing those words is a great payment for the care or deed that is done. Joy and appreciation is felt when I hear those words and it makes my efforts worthwhile.

Writes Thank You Notes — Letters of appreciation are a keepsake and tangible evidence of gratitude for what has been given or done. I have hundreds of such notes written on regular lined paper in three ring binders, which I treasure.

Compliments — He notices the work that goes into a good meal and lets me know how much he enjoyed it. He tells me when he thinks I look nice or likes my haircut or outfit. He is constantly looking for and stating the positive.

I’ve learned from Mark that expressing appreciation brings happiness not only to yourself, but those around you. It also lessens stress and anger, which makes you a healthier person. When we focus on our blessings, we see more blessings because our attention has been turned in a positive direction.

Recently in one of my writing groups we were given a blank piece of paper to write as many positive characteristics about ourselves in five minutes. The goal was to fill the page. I enjoyed the assignment and kept it to read when I’m feeling low.

thanksgivingdailyfinishLikewise, making a gratitude list to read when you’re feeling like you’ve missed out in life, maybe another good idea. Some general ideas to help you get started:

  • People
  • Physical abilities
  • Material possessions
  • Spiritual gifts
  • Nature
  • Things about today
  • Places on earth
  • Modern-day inventions
  • Foods you are grateful for.

How long can you make your list?

How would your life improve if you lived in thanksgiving daily?

Who is the Real Caregiver

“I’m not sure who the caregiver is in this marriage,” Neils said in part 1 of his story, Dancing with Class.

In his part 2, he explains in more detail some of what she does for him. “Her gentle prodding, encouragement and constructive criticism is the gas in my tank. She is the light in the tunnel, the gentle whisper in my ear, my tease, my best friend and motorized mentor who runs over my toes when I get curmudgeonly.”

“Judith has never given up. She always listens to people’s stories and encourages them to fight on.”

I loved Neils closing remark, “My part as a caregiver is insignificant compared to what Judith offers. So, I ask again, who is the real caregiver?”

I  wholeheartly relate and have written about it myself in three other articles.

IMG_0333I’m a full-time caregiver and occasionally I’ve been asked, “Who takes care of you?” Well, I’ll tell you…

Mark is my caregiver. He may not be able to make a meal or do the physical chores of housekeeping or yard work, but he does care about me and gives me support by waiting patiently for me to complete a task before taking care of his needs. He also lifts my spirits with humor, companionship and good times. Being with him is a pleasure. I love his wit and sense of humor. He also gives care through letters, expressing love and appreciation. These letters mean more to me than if he were able to give me flowers.

My parents are my caregivers and have been my whole life. Even though they are well into their eighties, they give me and many others lots of care through meals, visits and sincere interest in what is going on in my life, along with any help or assistance I may need.

My siblings are my caregivers and they too have been my whole life. They are all busy with their own lives and children, but they make time to check up on us. If I ever need anything I always know I can call on any one of them. It’s wonderful to feel the love and support of family!

My children are my caregivers. When they were small it was wonderful to feel their love and admiration. They were sure I could fix anything and no one was stronger. As they grew, experience taught them differently, but their love kept me going. They are my strength and what motivates me to do and be better. Their care is different now they are busy adults and no longer dependent on me, but I still feel their care and love and it means a whole lot to me.

My neighbors and friends are my caregivers. They give with listening ears and a caring heart. They give understanding, support and friendship. They are observant for what they can do to help without me asking for it. I’ve been fortunate to be surrounded by people who are anxious to help. Many times in the winter my snow is shoveled off my walks and I have no idea who did it.

My church provides caregiving. Not only do I find comfort and solace in my church activities, but my association with people there has led to friendships and an organized volunteer program where two people come twice a week to help Mark with his exercises.

So I just have to say, I’m one lucky caregiver. I’m supported by a lot of other caregivers who probably don’t think of themselves as caregivers. But I know they are and I know I couldn’t do my caregiving without them.

If you care and you give, you are a caregiver. If you drive someone to an appointment, prepare a meal, watch children, or go shopping for someone else, you are a caregiver. You may think you’re just doing what anyone else would do—but anyone who helps is a caregiver.

Thank you, Neils, for reminding us of the many acts of service which are considered caregiving.

Who’s your caregiver? Feel free to leave your recognition in the comment square.

My related articles:

What Makes a Caregiver

Six Traits of a Caregiver

No Foolin’, You’re a Caregiver

How to go From Surviving to Thriving

From Surving to Thriving

My daughter, Katie, serves on the conference committee and designed this brilliant image for it. I couldn’t be more please with all the service she gives to the BIAU.

This was the theme for the 2015 Brain Injury Alliance Conference and Alison Delgado’s, is a great example of someone going from surviving to thriving. She was the keynote speaker and her story was inspiring and her advice was excellent:

“For medical personnel:

  • Know your patient and their loved ones—it will keep you motivated as you work with them, even on the tough days
  • Know their ultimate goals so that you can look beyond your own
  • Get their loved ones involved—it will empower both them and the patient

For loved ones:

  • Remain positive, even on the tough days and don’t be ashamed to lean on other loved ones-Escalator
  • Remember to take care of yourself
  • Ask questions, stay involved

Patients:

  • Suddenly, everything has changed
  • Set goals, work toward them each day, ask for help
  • No therapy is beneath you
  • It may take days, months, years—but if you keep working, you can always achieve more than what was expected

For Everyone:

  • Hope
  • Pray
  • Love
  • Believe in miracles”
2015 conference picture

2015 BIAU Conference

I loved how straight forward Alison spoke. If you haven’t joined a support group or attended a conference relating to whatever condition you or your loved one is dealing with, I highly recommend it. I’m always trying to learn how to be a better advocate and caregiver. The support groups and conferences provide good information which supports and helps families and individuals. This conference is designed for people with brain injuries, their families, doctors, nurses, therapists, educators, case managers, social workers and other service providers. The icing on the cake which comes from attending the conferences is to have the opportunity to meet people dealing with similar issues and to mingle with people who have helped us with recovery from the past. Some of whom we only see now at the conference. It reminds me of how grateful I am for those health care professionals who not only helped Mark survive, but thrive.