A new year brings anticipation for great things. This year feels like a warmth of sunshine after cloudy days. 2020 brought many challenges without the “perfect vision” the year number indicated. Learning from our experience gives us energy for improvement as we move forward.
My list of twenty-one take-aways from 2020 with optimism that 2021 will be a better year if we remember:
We are resilient and can recover from stressful conditions.
We care about others more than our own comfort. Wearing a mask is proof.
We are creative with ways to connect, celebrate, worship, and teach while social distancing.
We are resourceful and can adapt to difficult circumstances.
We are all passionate about our beliefs, therefore it’s important to respect individual beliefs especially when they differ from our own.
We are patient, notably when it’s necessary.
We persevere in hard situations as we work for improvement.
We are courageous as we learn to do things we’ve never done before.
We are fashionable. Masks often match what we are wearing or make a statement about our personality. Colorful, fun masks are amusing.
We need each other. Isolating negatively affects our mental health.
We realize hugs are not to be taken for granted.
We are more aware of what our teachers and healthcare providers do. We are so thankful for their dedication.
We gained gratitude for sanitary stations by most building entrances.
We have appreciation for disinfectant wipes to sanitize grocery carts.
We learned zoom meetings are an effective way to take care of business.
We learned routine doctor visits can be done efficiently and are convenient by facetime or duo phone calls.
When an in-person doctors visit is necessary, the sticker on your shirt with the written temperature reading puts other at ease or encourages them to keep their distance if you have a fever.
We appreciated less people in the doctor’s office making the wait time to get into the exam room significantly shorter.
More people working from home improves the air quality and drives gasoline prices down. It’s grand that city streets no longer filled with vehicles were roped off for recreational bike riding and walking.
Social distancing at home allowed more time to get projects done.
Each person is important. We make a difference in the lives around us.
This year has been an experience we’ll all remember. 2020 not only strengthened our character, but it helped us realize what is most important. I hope to remember the positive lessons learned from the past as we move forward.
The switch from daylight to standard time always throws my internal clock off. It takes a week or two for me to adjust. Losing the daylight an hour earlier in the evening makes it difficult to accomplish those pressing outside jobs after work. It’s a fact, I get more of my stuff done in the evening than in the morning. At daybreak, I’m devoted to getting Mark up and ready for whatever experience life has planned for him. Since I enjoy working without interruptions, I stay up until I can’t keep my eyes open any longer. I used to fall asleep seconds after my head hits the pillow and stayed that way until the morning alarm goes off. Consequently, I never considered staying up late as a sleeping problem but rather a necessity to get things done. However, the past couple of months have been different. I either struggle to fall asleep because my mind keeps going over unfinished tasks, or on those fortunate nights when I fall asleep quickly, I wake up after a short time. I can’t get back to dreamland because I’m worrying about silly stuff. Believe me, at 2 or 3 a.m. it’s all silly stuff and worry is such a waste of time. The sleepless nights increase my daytime stress level. I miss regular exercise, writing, and eating well planned and prepared meals. It doesn’t take long for a regrettable cycle to form. Insomnia interferes with normal physical, mental and emotional well-being, so I’m trying to improve my sleep disorder one habit at a time.
A few weeks ago, I spent 2 nights in the hospital with Mark which gave me a new appreciation for my own bedroom. It’s a hundred percent more comfortable and peaceful without the beeping sounds of monitoring equipment and hourly nurse interruptions found in a hospital room. The first night home I decided to write a few things about what I appreciated in that day. Thankfully, I slept soundly, so I set a goal to continue the routine. It appears that feeling and expressing gratitude is an antidote for insomnia. It puts my mind in a better place. Setting a bedtime routine and alarm which allows enough time to unwind in a quiet room also helps. Having it get dark an hour earlier can be a bonus too. It’s the perfect month to work on a gratitude attitude and it improves my sleep too.
This month I’m determined to turn over a new leaf by forming at least one good habit. I’m a list maker and it’s usually full of things that need to be completed. This month I’ll continue to list things I’m grateful for like support groups in our area. I appreciate the opportunity to meet with others in like situations. Increasing friendships is well worth the time. Their encouragement helps me meet challenges. The experience and knowledge shared is beneficial.Simply put, it’s uplifting!
The purpose of this newsletter is to
share information about organizations. In case it’s impossible for you to get
out, or you don’t live in this area, I’ve also included links to useful and
If you have an activity, announcements or other information you’d like shared in this newsletter, please add them in the comments or email Barbara@UnitingCaregivers.com.
Join me in celebrating November by
living in thanksgiving daily and see how it benefits your sleep!
FREE SUPPORT GROUPSFOR STROKE AND BRAIN INJURY SURVIVORS AND CAREGIVERS
November 7, 2019 – Utah Valley Aphasia Choir meets at 6-6:45pm
on the 1st Thursday of the month, prior to the support group at the BYU
Speech and Language Clinic. It’s for all brain injury, and stroke survivors,
caregivers, family, and friends. Come and enjoy the power of music and
friendship together. Everyone interested is welcome to join.
November 7, 2019 – Utah Valley Brain Injury Support Group meets
at 7-8:30 p.m. on the 1st Thursday monthly at the
BYU Speech and Language Clinic, Room #177. Address: 1190 North 900 East, Provo,
UT 84060. Dr. Devin Duval, an optometrist at the Child and Family Eye Care
Center and a member of The Utah Valley Stroke Association Board will speak
about vision rehabilitation. For questions call Lori Johnson at (801)422-9132.
November 12, 2019 – Brain Injury Alliance Support Group for
Adults, 6-8 p.m. meets every 2nd Tuesday monthly at Sanderson
Community Deaf Center, 5709 South 1500 West, SLC, UT 84123. This social group
is for caregivers and survivors. Come join us for dinner and games this month.
Bring your favorite dessert to share if you’d like. For more information,
please call Jennifer (801)386-2195, or Beth (801)585-5511.
November 21, 2019 – IMC Caregivers and Survivors Education and Support
Groups, meets at 7 p.m. every 3rd Thursday monthly at
Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT 84107,
Caregivers meet on the 9th floor Neuroscience
Conference Room. Jennifer Roney topic is yoga and meditation.
Survivors meet on the 9th floor gym. Stephanie
Obradovich, PT topic is Staying Active Through the Winter. For more
information, please call (801)314-2086 or email Emily Redd firstname.lastname@example.org
November 24, 2019 – University of Utah Brain Injury Support Group meets
at 7-8 p.m. every 4th Tuesday monthly at Sugarhouse Health
Center, 1138 E. Wilmington Avenue, SLC, UT 84106. For more information
please call Annie Wallace at (801)581-2221.
GROUPS INTERMOUNTAIN HEALTH CARE NEURO THERAPYin Murray, Utah
Aphasia Talking Practice Group – Meets every Tuesday, Noon-1 p.m. at
5770 South 250 East #G50
Meditation Group – Meets every Wednesday, 3 p.m. at
5770 South 250 East Cafeteria Conference Room
Cognitive Skills Group – Meets every Thursday Noon-1 p.m. at
5770 South 250 East #G50
FREE EPILEPSY SUPPORT GROUPS FOR
THOSE EFFECTED BY SEIZURES
Together we share coping strategies, provide encouragement, comfort and advice from people with common experiences.
For more information contact Margo at (801)455-6089 or Utah@efa
This Saturday, November 9, 2019 – Utah’s Seizure Strategies Seminar at the U of U Clinical Neurosciences Center, 1st floor auditorium. 175 N. Medical Dr., SLC, UT from 9a.m. to 1:30p.m.
November 13, 2019 – Provo Epilepsy Group for All, meets at 7:00 – 8:15 pm on the 2nd Wednesday at the Provo City Library, 555 N. University Ave., Provo, UT.
November 14, 2019 – IMC EpilepsyGroup for All, meets
at 7:00 – 8:30 p.m. on the 2nd Thursday at the
Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT Bldg. 6, 1st floor
– CR2 in the Doty Education Center.
November 20, 2019 – SLC EpilepsyGroup for All, meets
at 6:30 – 8:30 p.m. on the 3rd Wednesday at the SLC
Main Library 200 E. 400 S., SLC, UT (3rd floor conference room).
November 28, 2019 – West Jordan
EpilepsyGroup for Teens, meets
at 7 – 8:30 p.m. on the 4th Thursday at the West Jordan
Library, 8030 S. 1825 W., West Jordan, UT. Come and enjoy an
activity and meet other teens with epilepsy. There are two teachers overseeing
TheLogan Epilepsy Support Group for All is in the
process of looking for a replacement moderator that is as passionate about
supporting their community as the last one. This Support Group will be
postponed until further notice. If you have any questions, concerns, or
information you would like to share, please contact Margo Thurman @
Thank you for reading. I hope you found
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Last Thursday, Dr. Matt Townsend, a relationship expert, spoke to a group of survivors and caregivers at the Intermountain Medical Center. He presented life-changing skills with humor, teaching me how to improve my relationships in an entertaining way. I enjoyed his presentation so much that I’ve been listening to his many short videos on a variety of topics dealing with relationships while I work. If you like to listen to fun, uplifting, concise talks, you should check out his website.
A synopsis of what I learned from Matt is that life keeps changing and some experiences change the way we think and feel. Although our experiences may differ, we share feelings of: loss, sadness, insecurity, embarrassment, inadequacy, anxiety and/or depression at some time in our lives.
He quoted Carl Jung, a famous psychiatrist, “That which is most personal is most universal.”
Matt professionally counsels people for a wide range of challenges. Some have financial, fidelity, abuse and a variety of addictions. He calls these problems the smoke rather than the cause of the fire. He states we all have seven basic needs and we feel starved when those needs aren’t meet. When we feel starved, we don’t want to feed the other and the bond is broken, which ignites the fire.
We all want loyalty, happiness and honesty in a relationship. To feel joy and peace in a relationship we must feel:
Safe – including physical, financial, mental, emotional, social and spiritual safety
Trust – consisting of honesty and competence
Appreciation- hearing or seeing words of approval (remember it takes four positives to ease one negative comment)
Respect – showing through words and deeds
Validate – hearing what is said to understand without having to agree
Encourage – getting into the heart of your loved one and doing what you can to help them reach their goals
Dedication – committing to your relationship and making them feel more important than any place or thing.
Matt said trauma or health issues are the number one way to expand in these areas. We don’t grow unless we are pushed. We learn through our challenges.
When these basic needs are not met, we feel starved which makes it hard to fill your loved one’s needs. We all feel love and express love differently. Gary Chapman, author of The 5 Love Languages, describes how some of us feel love by: words of affirmation, quality time, receiving gifts, acts of service and physical touch. We tend to give love to another in the manner that speaks love to us. However, it is better expressed in the language your loved one speaks. Matt says his wife’s love language is acts of service. He vacuums or does another household chore and she’s appreciative. His love language is physical touch. They’ve tried holding hands while he vacuums, but that’s just too awkward.
In 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.
I can relate to Christine Scott’s feelings and well written words in Laura’s Story, Part 4: “You should have some type of warning before your life unequivocally changes so you have the chance to do things differently—to take advantage of those last moments to say ‘I love you’ and ‘goodbye.’”
How easy it is to take for granted family, friends, life, health and abilities.
Today’s a great day to hug the ones we love and appreciate what we have. Remember, “in the blink of an eye everything can change.”
Part 5 of Laura’s Story will be published on Wednesday.
My day has been filled with gratitude for all I have. I am thankful for life and realize every day is a bonus day and should not be taken for granted. I appreciate the education of doctors, nurses and therapists who have developed the skills to help heal and improve our health issues. I’m grateful for the hard work and progress Mark has made through his hip surgery and therapy.
I’m grateful for our comfortable, wheelchair accessible home, which always gives me something to fix up or improve and the space I need to be able to work at home. I appreciate my employment in property management which enables me to pay for all the necessary things in life. I am fortunate to have wonderful bosses and friends such as Steve and Rick. I appreciate all they do for me in our business as well as my personal life. I am also blessed to live with Mom and Dad. I am grateful for their continued love and support and I’m thankful we can help each other in all things by living together.
I appreciate my children, siblings, nieces, nephews, cousins, aunts and uncles, who I know I can count on for help at any time or in any situation. They are the foundation for everything we accomplish along with the love and support of neighbors and friends. Many people volunteer their precious time to help us.
We are blessed by many people—family, friends and neighbors who love and give service to us. My need to give back is the driving force for writing our story and developing Uniting Caregivers. This passion has brought new friendships through writing and caregiver’s support groups, along with readers and participators of this blog. I have learned so much and have gained from their experiences. I am grateful for the influence of other writers and their encouragement in my own writing endeavors.
If you are reading this, I am grateful for you! I appreciate your feedback, whether it’s done with words or the click on the Like button. I hope what is written has helped you find hope and encouragement in your trials. I have truly been blessed in my life’s journey and writing about our experiences manifests those blessings to me.
While organizing some files, I found and read a talk Mark wrote and gave in church, November 1990, five months before our car accident. The title, The Blessing of Adversity, grabbed my attention and my heart started to pound as I read on. By the time I got to the last few paragraphs tears were flowing as I realized twenty-five years later the prophetic nature of his words. The talk is well over 2,ooo words so I decided to publish only part of the talk. I try to keep these articles around 1,000 words.
If you didn’t know my husband before the car accident, this gives insight on how he was before and you’ll see the core of his soul hasn’t changed. He is an example of enduring to the end and appreciating life and the lessons learned along the way.
Written by Mark Wilson
Many blessings are obvious. Our families, friends, homes and the country we live in are all blessings most of us recognize and are grateful for. But I’d like to talk about some blessings that aren’t always so obvious. You see, I believe that very few things happen in this world that aren’t blessings, even being asked to talk in church, for instance. Like many of you, I am terrified of talking in public. While serving as ward clerk, I sat in on many a bishopric meeting, wherein the topic of discussion often was “who can we get to speak in sacrament meeting?” You know, not once did I volunteer. Come to think of it, I don’t remember anyone else volunteering either. How can giving a talk in sacrament meeting be a blessing, you ask? Well, if you do it enough, chances are you’ll learn not to be scared. Not being afraid in front of large groups of people would be a plus, I think. You see, what I’m really talking about is adversity, or rather the opportunity to overcome it, can be a blessing. We’ve all been taught this sort of thing before. The scriptures give many examples of how people have been blessed or how we can be blessed by “enduring to the end” or overcoming adversity.
In my line of work, I have on a number of occasions had to serve as job foreman, with anywhere from one to a dozen other electricians in my charge. Being a foreman is a job that I’ve never liked. The raise in pay (usually a whole dollar an hour) never seemed to compensate for the added worry over doing the job right, along with the pressure of getting the job done on time. There are always problems with getting the manpower, equipment and materials you need on time.
My first experience along these lines was a real disaster. When the first phase of the new minimum security men’s facility at the state prison was built, the company I was working for at that time was contracted to wire it. This involved not only the power and lighting systems, but also some very involved security, communications and life safety systems as well. My boss asked me to be in charge of four of the seven buildings. Up to that time, I had had no prior experience on jobs of that nature. In fact, I was still only an apprentice. I consented and before I knew it, I found myself desperately trying to figure out all these systems that were my responsibility. I was reading from blueprints that were rain-faded and wind-torn because the weather was so bad. The general contractor was literally pouring concrete down our boots as we worked feverishly to stay ahead of them on the conduit work. One conduit left out or plugged with concrete would have spelled big trouble and a great deal of expense to correct.
I was so nervous and uptight that I found I couldn’t eat my lunch. I was actually sick to my stomach with worry. I couldn’t sleep at night. I was a nervous wreck. After a few weeks of this, I called my boss one night and told him I couldn’t go on. He would have to find someone else to take my place. He did and I got my sanity back, but I’ve regretted that I didn’t stick with it. What a tremendous growing experience this could have been for me had I been able to “endure to the end”.
Several years have passed since that awful prison job and I’ve been in somewhat similar circumstances a few times. Although I haven’t quit, I’ve never really gotten used to being a foreman and I avoid it all together whenever possible.
About a month ago, I was called into the office and asked to run a job. I thought, oh brother, here we go again. Next the boss starts telling me how important this job is because we’re looking forward to the people we’re working for to throw us a lot more work in the future if we perform well on this job. That’s all I need, more pressure. One of the reasons I agreed to be the foreman was because he said we had three months to get the job done.
Shortly after I arrived on the job site, the general superintendent informed me we had three months to do the job, but that was two months ago. It took the lawyers, owners and engineers the first two months to get the paperwork done. We only have one month left!
That day, lunch was a little hard to get down. That one month is over in four more days. There’s a chance we might not finish on time. But whether we make it or not, I feel good because I managed to “endure to the end” and just did the very best that I could. The feeling that gives me is downright terrific. What a blessing trials and tribulations can be!
We’ve all had problems at one time or another that we thought at the time were insurmountable. How did we handle it? How about the times that we’ve given up? How does that make us feel? What a difference it makes when we persevere or “endure to the end” and win! Even during the times when we don’t give up and lose anyway, we still learn a valuable lesson. It’s not the end of the world! The sun will still rise the next day.
We should thank our Heavenly Father for this wonderful life He’s given us and all the problems that come with it. When we are faced with adversity, we should wipe the frowns from our faces and the tears from our eyes and with appreciation in our hearts for a God that loves us enough to test us to our very limits. With gratitude we should dive right in head first knowing that all things give experience for our good.
Scriptures and doctrine examples have been left out due to the length. If you’d like to read it in its entirety, let me know and I will email it to you. My email address: Barbara@UnitingCaregivers.com
Yesterday we celebrated our 36th wedding anniversary. Sounds and feels like a long time until I compare it to my parents who have been married 65 years. How can you live happily ever after? This is what I’ve learned from my experience and by watching others.
Physical contact is important.
I will never forget how much I missed physical contact with Mark for the three months he was in his coma. Sure I could hold his hand, but he was not capable of holding mine and I missed it! After my collarbone healed from our car accident, I was anxious to help the nurses and aides bathe Mark, rub lotion on him, and transfer him in and out of bed. I wanted so much to touch and care for him. I needed that closeness. The nurses and aides were willing to let me help and I loved doing it.
I’ll never forget the first time I slipped into the hospital bed lying next to Mark, hoping no one would care. It felt so good just to be next to him and since the nurses didn’t seem to mind, it became a routine. I have never taken for granted the need for physical contact since those lonely long months after the car accident.
I still love to see my parents holding hands as they walk or sit on the couch next to each other. To watch my father help my mother out of a car, down steps, or out of a chair is endearing. They have grown in tenderness with each other over the years. It is clear to me that they love one another and appreciate the time they have together. I am grateful for their example.
Positive reinforcement is a must.
Mark is especially good at accentuating the positive. He always makes me feel wonderful. He calls me S.U.G.A.R. and spells it as an acronym for Sweetheart, Unmatchable, Girl of my dreams, Awesome, Reason to live. He often reminds me and others who will listen what S.U.G.A.R. stands for. It makes me feel special.
I’ve also noticed when I tell Mark he looks handsome, he sits up a little straighter and holds his head a little higher. We all need and enjoy compliments.
Express appreciation for the other.
Every relationship is different. It’s not possible for me to have a relationship like my parents’, but I am capable of having a loving relationship. Mark and I aren’t able to travel to far away destinations and even a romantic dinner and dance is difficult. But I can provide a special dinner at home and turn on some music so we can sway back and forth. I believe no matter where you are in your relationship, you need to appreciate it for what it is.
I feel blessed to still have Mark here with me. When a person only has a five to ten percent chance to live and no chance of coming out of a coma due to the extensive damage to the brain, you know every day is a bonus day. Those days have added up to twenty-four bonus years, which means I’ve been his caregiver for two-thirds of our married life. I believe by being his caregiver and advocate my love has grown in ways I couldn’t have imagined. Happy anniversary to my hero, Mark. I love you!
I’ve been spoiled for the past two weeks. Friends and family have made the anxious recovery time enjoyable by bringing in meals, cookies, flowers and a visit. My brother and employer, Steve, not only spent the first night by my side, but has come every day to make sure I’m well and has covered much of my employment responsibilities. I’ve also had Katie’s constant watchful eye. All these blessings have helped me heal quicker and better than I expected. I was dreading the recovery time, worried that I’d be hovering over Mark, his personal aide and Katie. How could anyone else take good enough care of him? I’ve learned Mark can be in good hands other than my own.
When Katie realized I needed surgery, she immediately offered to come and help. I didn’t want to burden her, so I thanked her and declined the offer. She is a self-employed, busy, graphic designer plus she volunteers in four different organizations right now. Eldin, her husband, is a great supporter of Katie, but he is a busy bishop in addition to his full-time job. Since our son lives in Washington State, I didn’t feel it would be fair for her to carry this load on her own.
After interviewing three aides who weren’t able to fulfill our needs for one reason or another, Katie offered her help again. Being a protective mom and wanting to preserve the father/daughter relationship, I’ve never given Katie the opportunity to have the hands on routine of transferring her dad from the bed to the wheelchair, showering and other personal care tasks. I knew she’d be capable, but I didn’t want to add caregiver to her many other responsibilities. I realize now I was denying her the blessings that come from caregiving.
In these two weeks we’ve learned a lot. It’s a joy to watch Katie and Mark interact with one another. It’s evident to me when you serve someone, your love somehow grows. I never imagine she could be more thoughtful and kind, but somehow she is. I never believe she would love us more, but somehow she does.I don’t understand why this is or how it works. It reminds me of when I was pregnant and I wondered how I could have room in my heart to love and care for another baby. When she arrived, my heart magically grew and right from the start, I loved her every bit as much as my first baby.This growing magic continues throughout life as different nurturing experiences arise. It’s a beautiful part of life.
Before the surgery, I paid two neighborhood boys to help move some furniture and make a separate bedroom for me in the front part of the house which was originally my office. In this room I can’t see or hear Mark and can completely rest without any worries. Since Katie is here most of the day and night I can relax, confident that Mark is cared for.
I hired a shower aide to come every other day for Mark. She also helps him with his exercises. This not only lightens Katie’s load, but keeps her from having to do the personal care which would be awkward for their father/daughter relationship. Having others who know Mark’s needs and understand his routine is a bigger relief to me than I had imagined.
I’ve worried for months about how I’d manage the care for Mark during my recovery time and so far it’s worked out much better than I anticipated. The planning effort was well worth it. What I’ve learned from this experience:
Mark can be in good hands other than my own.
Accept help from family and friends and enjoy the love that grows from it.
Nurturing is a beautiful part of life. Share the blessing.
Make it easy and comfortable for those who are assisting.
Look for the good and realize tasks can be done differently.
Appreciate the efforts of another, even when they don’t do things the way you do.
Having others who know the caregiver’s routine is a great benefit in case of emergency or for caregiver respite.
I’m enjoying and appreciating all the help we’re receiving. Many hands do make light work and it has allowed me to get the needed rest for a speedy recovery. To all my family and friends—Thank You!
What became obvious to me as I read and edited Ann’s story last Sunday was how caregivers need other caregivers to be capable of doing what needs to be done. Her viewpoint wasn’t as a caregiver, but one that was receiving the care. However, she is a mother and all parents are caregivers. I learned from Ann’s story how important others were to enable her to give the care needed for her baby’s development and the care of her three year old son, Liam. I relate to that in my own caregiving journey. It’s clear to me I can’t do it alone. I don’t know anyone who can. Sometimes we may feel alone, but I hope that feeling doesn’t last. Ann’s experience with being on bed rest for twenty-eight weeks taught her what was important to a person on the receiving end of caregiving. The following five tips were shared and written by Ann McDougall:
Be proactive. It was appreciated when others would ask what is needed and then follow through. With some people I was comfortable saying exactly what I needed and with others I wasn’t. I have a close friend who asked what she could do for me besides come visit and I asked her to pick up some specific snacks for me. I wouldn’t tell just anybody that. I had other friends who brought me crafts to do to keep me busy. All the supplies were ready so I could easily do it in bed.
If you say you are going to visit, visit. They are so important to someone who can’t get out. I felt isolated and lonely and really looked forward to the visits. I have a grandma who went blind in her old age. She was homebound and had to rely on caregivers. I know my grandma felt a lot of loneliness and thrived on visits. I have more empathy and compassion for people, especially the elderly, who are home alone all day and not able to do everything for themselves like they used to. Calls, texts, and Facebook messages were a good alternative to visits and were also appreciated.
Pick one doctor to be the primary doctor and stick with his/her opinion. When I was in the hospital, I saw a team of doctors who worked in the same specialty area. I also saw student doctors working under those doctors. Each one had a slightly different opinion and approach to my care. Before I was admitted, I had already picked one doctor to be my primary doctor so I was able to refer back to his opinion.
Remember the children. My mom brought toys to the hospital for Liam. It gave him something to do while he was there and those toys stayed at the hospital so they weren’t the same toys at home. He looked forward to those special toys and it helped make the boring, small hospital room a bit more inviting. Another visitor brought a children’s story book just for him that also stayed in my room. He loved it and still does.
Consistent child care is important, especially for young children. Liam struggled when I was on bed rest at home because I wasn’t able to get up and do things for him or play with him and when I was admitted to the hospital, his world was turned completely upside down. He acted out by hitting and had a huge potty training regression. It was tough for me to ask people to watch him because I knew he would be difficult to be around, especially if he didn’t know the person well. It was a huge help when my mom was able to take Liam the majority of the time. It helped Liam to have the same person watching him with a consistent routine. He knew what to expect from day to day, where he would be and when he would get to see me. I appreciated the many people who offered to take him, but I knew it was best if he wasn’t shuffled from house to house. I know it was hard for my mom to have him most of the time, but we were so grateful she was able to take care of him.