We have Mark’s family visiting from Washington. We are going to savor every moment, so I won’t be able to write until November 2, 2014. I’ll see you then.
The sacrifices parents make for their children was brought back to my attention while working with Ann McDougall the past two Sundays on The Receiving End of Caregiving, Part 1 and Part 2. She had to sacrifice more than most, but I believe all do on some level or another.
I entered the parenting field thirty-two years ago. I don’t remember ever thinking about the sacrifices we were making because we were doing what we knew we should for them like our own parents had done for us. However, after the children left home, money wasn’t as tight, we had more time to do what we wanted to do and it was easier to keep the house clean, but all the sacrifice of time, energy and financial strain was worth it!
I’m so grateful we were blessed with two children. We’ve had our share of power struggles and personality conflicts, but I don’t wish them away because I’ve learned so much about myself and other people from my children. It’s a challenge bringing children into the world and raising them. The load of being responsible for another person can seem heavy at times, but I can’t imagine anything bringing more joy or being more rewarding.
It makes me sad all children don’t receive the same amount of love, concern and opportunities. I was far from perfect in my parenting skills and still am. I see other parents and wish I could have been more like them. Yet, I put my heart and soul into parenting. Sure, I wish I’d done better at some things and if I’d known then what I know today it would have been much easier. However, my conscience is clear because I did the best I knew how under hard circumstances.
Because I’m not an expert on parenting, I Googled abc of parenting and found a few lists. I took my favorites from the lists and made my own.
Accountability—hold your children accountable for their behavior.
Boundaries—set specific limit and make clear the repercussions if those limits are exceeded.
Consistency—hold to the same principles and practices.
Discipline—make the punishment fit the crime. Never discipline in anger.
Example—children are in greater need of models than critics. Set a good example.
Forgiveness—practice and teach it.
Giving—teach the joy of giving, not only to family and friends, but to strangers in need.
Humor—eases tense moments. Keep a sense of humor.
Imagination—be creative and play with your children.
Justice—be fair and treat your children as you want to be treated.
Know—your child’s friends and their parents as well as their teachers.
Listen—to your children.
Morals—be sure your own standard of conduct is sound.
No—if you use it, mean it.
Outdoors—provides fun activities. Be there as much as possible and teach respect for nature.
Play—with your children as often as possible.
Questions—make them to the point. Your answers to their questions need to be short and simple. Their attention span is short.
Respect—show them respect and earn it for yourself.
Source of strength—share your own faith, or beliefs, with your children. Faith can be their port in the storms of life.
Togetherness—have special designated times to be together as a family, but know when to let go, too.
Uniqueness—understand the uniqueness of each child and let that child be who he or she is.
Voice—your tone of voice can convey more to a child than the words spoken.
Words—think about the words before they’re spoken. Keep your word. Promises broken destroy trust.
You—take care of yourself mentally, physically and spiritually. A happy parent helps a child to be happy.
Zero—in on practicing good parenting skills every day.
I’m grateful to be a parent and I love my children dearly. They are the light of my life and I miss living with them, even with all the chaos it brought. Enjoy them while you can. They grow up so fast.
Thank you, Ann, for sharing the rest of your rewarding experience of being on the receiving end of caregiving, which is good reminder for the professionals, as well as friends and family, on what is important to the ones receiving care.
Written by, Ann McDougall
I knew I was in the best place while I was in the hospital. It was where I needed to be at the time and that’s just how it needed to be. I accepted my situation and felt at peace with it. I was lucky enough to have an end in sight because a lot of people with health problems do not. Every now and then I allowed myself to have a hard day, a down moment, or a good cry (in the bathroom so no one would walk in and see me). Sometimes I’d feel angry, but then I’d to go back to having a good attitude, because a bad one wouldn’t get me far. I chose how I reacted to my situation. Yes, it was difficult at times, but I knew it didn’t help me to think miserable thoughts.
I had some wonderful nurses in the hospital. They did their best to make sure I felt at home by allowing me to have many comforts, like my own pillow and pictures of my family. My son, niece and nephews would often color pictures and tape them all over my walls and the nurses would comment when they saw a new one. I appreciated the nurses who took the time to talk to me about my personal life and share a bit about their own instead of just asking the usual medical questions. One nurse, Michelle, sat with me on Pioneer Day and watched fireworks from my window because my family was not able to be there with me. I loved it when nurses would come into my room just to say hi to me even if I wasn’t their patient that shift. It made me feel important and not forgotten. They were considerate of our family time. My husband, David and son, Liam would usually come to visit in the evenings and if a nurse came in to take my vitals, they always asked if they should come back later. Their kindness made me feel like a person, not just another patient. They celebrated with me each day I stayed pregnant because every day was a big accomplishment. I had a white board across from my bed where we kept track of how far along I was and each morning as we’d change the number, they would congratulate me on making it another day. They called our baby, Ariana by name when checking her heart beat twice a day. They made me feel like I was carrying a precious little one; it wasn’t just another pregnancy.
Meeting others in a similar situation helped me cope. There were a few other ladies who were on hospital bed rest and we were able to meet for lunch once a week to visit with each other in our rooms. It was therapeutic to talk with each other about our struggles and situations. They could empathize with the hardship of being stuck in a hospital bed, leaving our husbands and children at home without us, afraid for our unborn child’s life.
Most people like to be busy doing something productive, to feel like they have a purpose. It’s hard to feel productive and purposeful when you are completely relying on others to take care of you. I found it important to find something to focus on, some little thing to do to keep busy. While in the hospital I learned how to crochet. I made many things for our baby, our son and other people, which helped me feel important and needed. It gave my mind a distraction and my hands busy when I couldn’t do many other things I wanted to do.
I had a lot of time for thought and reflection. I feel like I came home from the hospital ready to be a better parent. I have more patience with my son. I appreciate my husband more than ever. He has always been a great dad, but he showed me how extra ordinary he is by being an even better one. He took care of our house, did the grocery shopping, paid the bills, and took care of the pets while working full time. I was worried about how he would do it all, but he did just fine. He was so thoughtful and loving to me. On occasion he would stop by before work to say hi and surprise me. He did his very best to visit every single day and made sure our son came just as often. We were even able to arrange for our son to sleep over with someone else so that my husband could sleep at the hospital with me every now and then. The time together was important for our relationship.
I have been blessed by seeing how many people were willing to serve my family. I was able to focus on the pregnancy and not worry so much about if things at home were being taken care of. I was humbled by how much my family was there for me. I knew they loved me, but they showed just how much by all the things they did for me. I loved it when my dad would stop by on his lunch breaks or my sister-in-law would bring her kids by to see me. They all came on Father’s Day and had dinner with me. I’m sure they would have rather been home, but it meant so much they brought the party to me. I have learned I can rely on my family and I hope they know how much I appreciate and love them.
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.
Written by, Ann McDougall
Pregnancy has always been a difficult journey for me and my last pregnancy was no exception. I was high risk from the very start. Because of complications in past pregnancies, I was diagnosed with incompetent cervix. At nine weeks I was put on modified bed rest at home because I started bleeding. The doctors didn’t know the cause of it and said it wasn’t related to the incompetent cervix. At twelve weeks I had a planned surgical procedure done called a cerclage to help me stay pregnant. The cerclage failed at 21 weeks, causing more bleeding and a tear in my cervix. I had an emergency surgery, the second cerclage placed and the tear repaired. I was then put on strict bed rest at home. I was only allowed to get up to use the bathroom, shower, and get a quick bite to eat and had to be laying down the rest of the time. After a week of strict bed rest, I started hemorrhaging and both cerclages had to be removed because mine and our baby girl’s life were threatened. I was told I was most likely going into labor and there wasn’t anything that could be done to stop it. The baby wasn’t developed enough to live if she was born. I was admitted to the hospital in hopes I could stay pregnant a week or two longer so the baby would have a chance of survival. The doctors didn’t think I would make it another day, let alone the 2 more weeks we needed to reach viability. We would do anything to try to keep me pregnant just a few weeks longer. We had already said hello and goodbye to our precious twin boys the year before. We did not want to give up on our daughter and knew being in the hospital was the best place for me. I was told I would remain in the hospital until the baby was born. I ended up staying in the hospital for almost 9 weeks and was able to go home on strict bed rest for the remainder of my pregnancy. The hard work paid off and miraculously our Ariana was born just 3 weeks early at 37 weeks and is healthy and doing well.
Being on bed rest is taxing in various ways. I wasn’t able to care for myself, or our 3 year old son, Liam, or our house, yard, six chickens and our dog, Harley. I had to completely rely on my husband, David, and other people to do everything which I had previously done for myself. It was difficult emotionally and mentally to let go and let things be done in a different way than I would have done them or to see things not get done at all. It was awkward to ask for help and feel like I was imposing or asking too much of those who had already done so much. I missed getting out and seeing my family, friends and neighbors. I felt isolated and lonely. It was challenging to express how grateful I was for all those who helped my family. I felt guilty for not doing more to make things easier on those who helped, even though I did my best with what I could at the time.
Being in the hospital for so long was a whole new level of taxing. Everything was taken from me— my independence, privacy, familiar people, food and home. I missed being on my own schedule and not having complete control over my environment. It was tough to watch Liam struggle with his tender, immature emotions as he tried to process the situation and not know how to help him or be there for him like I wanted to be. It was heartbreaking to watch David struggle with all the new roles he had and not being able to help ease his burdens as well as feeling like a source of stress for him. It was hard to feel so helpless.
People have asked me how I was able to be on bed rest for so long, especially in the hospital with a child at home and a husband who works full time. I couldn’t have done it alone. We had family members who took over childcare and neighbors and friends from our church who watched after our house and pets. When my cousin, Lisa, found out about my situation, she came right over with her calendar and asked what days she could take Liam. She didn’t casually say, “Let me know what I can do to help.” She proactively offered specific help and then followed through by watching him many times. I also knew that I could call my sister-in-law, Krista, and she would take him any time I asked. My mom was the one we relied on the most. She did her best to watch Liam as often as she could and be the one consistent childcare provider. She worked at a school so it was tricky finding people to watch him on the days she had to work. Once school was out for the summer, she was the one who had him every day. She sacrificed so much to be there for him so I could focus on my pregnancy. She did not return to work after the summer so that she could continue to care Liam and eventually me when I came home from the hospital on bed rest. I will never be able to repay her for all that she has done for our family.
Other people helped by being there for me on an emotional and social level. Friends brought me books and movies, came to visit and even had a movie and popcorn night in the hospital. Some brought me snacks and meals, which were also appreciated. Many people from church brought us dinner for months while I was on bed rest at home. It was a huge help. I wasn’t shy about accepting food and even now I miss the good meals that were brought and even more, the people that brought it. I loved seeing my friends and neighbors because I wasn’t able to get out, so it was nice they came to me. It helped to have visitors or even just calls or texts from people letting me know that they were thinking of me. I may not have always said thank you, but I thought it. The help never went unnoticed and was always appreciated.
Thank you Ann for sharing your story of endurance, persistence, fortitude, appreciation, and hope. I’m thrilled you have the blessing of your son and daughter—a great reward for your sacrifice.
We make decisions every day. Some are harder than others and the consequences vary in matter. Wouldn’t it be nice if there were road signs along our path to show us the right way. Sunday I shared the first tough decision I had to make after the car accident—to sell or not to sell our home that was under contract to close in three weeks. My heart wanted to go through with the sale because I had no way of knowing how long Mark would be in a coma. I hoped every day he’d wake up and life could go on as planned. The realtor made a good point that we might need the money from the sale more than ever now. My emotions felt the right thing to do would be to sell our home and stay on the path we had started. My mind knew the timing was wrong. The car accident had messed up our plans to meet with the realtor to write up an offer. Logically I knew we wouldn’t be able to qualify for a new mortgage with Mark’s recovery uncertain, but sometimes it’s hard to think clearly when you really want to complete something you’ve started. My heart told me to move forward with the sale, but my head told me to take an unplanned turn.
- Identify the decision to be made. Calmly and thoughtfully think about the goal and the end result hoped to obtain. High emotions, positive or negative, can impact the ability to make a rational decision. If staying calm seems impossible, I try to put off making the decision until I’m thinking clearly.
- List the options. I like to ask advice of trusted friends and family, especially someone who has made a similar decision. By brainstorming with others, options I hadn’t thought about come up. Some I seriously consider and others I don’t, but I always appreciate getting another viewpoint. However, getting too many views can make the decision process harder and more confusing.
- Study the options. Most decisions are made easier and better when I have enough information to make an informed decision, therefore I get as much information as possible. Important decisions should rely on logic and not emotion, so logically I try to sort out the risks and the gains. However, over thinking the options and outcomes can also become a problem.
- Select the best solution and have a backup plan in preparation for any negative or unplanned outcome. After I’ve made an important choice, I pray and meditate about it. If I feel confused or unsure about my choice, I reevaluate my options. When I feel at peace or confident about my choice, I believe that is confirmation I’ve selected the best solution.
- Evaluate the decision. I think about how my decision will affect other people. Will any of the possible outcomes have a negative effect on the people I care about? How will I feel about the outcome several years from now? If it isn’t a positive outcome I look at the other possible options on the list again, study the option and select a better solution. No matter which decision I make, I’m prepared to accept responsibility for the outcome. Finally, after I’ve acted on the choice and with time, it’s easy to see if it was the right or wrong decision. There is something to learn from every decision whether it turns out for the best or not.
Whenever I’m in the Ogden, UT area, which is very seldom, I like to drive by the home we fell in love with. I’m not sure why I do this, maybe it’s a reality check or just because I’m curious about how the neighborhood has developed over the years. Possibly it’s my way of dealing with the grief of a lost lifestyle, just as some people find solace at the cemetery where their loved one is buried. I do feel sad that our life course changed, but I’m at peace that I made the right decision to stay in our Sandy, UT home where we were surrounded by good friends and neighbors. The security of a familiar home and surroundings proved valuable. It feels great when I can look back on a tough decision and know I made the right choice for the situation. It would be nice if I could always feel this content when I reevaluate every decision I’ve made.
What steps do you take when you’re faced with a tough decision?
It was a grueling decision to stop the sale of our home in Sandy, UT. We were excited for about our new beginnings with an updated home and a better job. I wavered back and forth on which was the right choice. How I missed discussing this with Mark. With every fiber of my being I wanted our life to go on as we’d planned. The home we were most interested in was located in Uintah, just south east of Ogden. Weeks had gone by with no improvement and the hospital staff was not giving any hope there would be any. The realtor that sold our home was encouraging me to go through with the sale and not lose the deposit. Her advice was that we’d need the money now more than ever.
The hospital social worker assigned to us counseled me to stay put. He suggested the kids and I would need the support of our nearby friends. We had lived in our home for ten years and had established great relationships with many of our neighbors. His suggestion made sense to me, but backing out of an agreement seemed not only wrong, but felt like a giant step backwards. I wanted to move forward and not give up on our plan.
How would Mark feel when he wakes up? Would he be upset that I didn’t follow through with the sale? Would he feel like I gave up on him? I wanted to make the right choice…a choice that would be best for Mark, the kids and I. Believing that Mark would wake up any day, I wanted to put off the decision, but realized it wasn’t fair to keep the buyer wondering if the sale was going to go through or not.
One night I had a dream that I went through with the sale of our home. Because Mark was unable to work, we could not qualify for a new mortgage. The kids and I had the stress of moving into an apartment while Mark was still in the hospital. After months of rehabilitation, he came home in a wheelchair which was nearly impossible to maneuver in the apartment. It was hard for the kids and me to make new friends with all the other adjustments we were going through. Mark didn’t know anyone. He felt lost in unfamiliar surroundings and people.
The dream was the first insight I had on what our life could be like…but it was just a dream. I didn’t want to believe it, or even think it. I wanted Mark to be completely healed and for life to continue as we knew it.
The advice of the social worker seemed perfectly logical after the dream. I called the realtor to let her know we needed to back out of the sale of our home. It was the first tough decision I had to make without Mark’s input. I was sad, but relieved at the same time. I didn’t need one more thing to worry about and as much as I wanted to move, I knew the timing wasn’t right.
Over time it became obvious to me that to the doctors, nurses and therapist saw Mark as a body they were in charge of keeping alive. However, to me he was a person, a son, a brother, a friend, a father and most important to me…my husband. While I appreciated the professional healthcare team’s knowledge and skill, I was offended by their bedside manner, especially the neurologist. I had never felt such strong conflicting emotions before. How could I be so grateful yet resentful at the same time about the same person? As the weeks went by, my resentment grew. I knew Mark needed their skills, but they gave no hope for improvement. I was scared and didn’t understand the things they knew through their education and experience. I was discouraged and constantly worried about Mark’s condition. How long must we endure existing on the edge between life and death? Five weeks already seemed like forever.
When I was at the hospital I worried about the children. Were they okay with the neighbors until I got home? School was going to be out soon, then what? Will I need to impose on family and friends all day? I felt like a neglectful mother for not being with my children.
At night when I was home with the kids I worried about Mark. What if he took a turn for the worse? Would I be able to get to the hospital on time? I was grateful for brothers and my dad who took turns being with Mark at night, but how long could I expect them to do this? My mother was driving me every day to and from the hospital, not only because our car was now totaled, but I also had a broken collarbone and my right arm was in a sling. The 60 mile drive twice a day was draining me, what was it doing to my mother? I hated to be dependent on others.
The only thing I knew for sure was that I needed to have Mark closer to home, but how could I make that happen? He was comatose because he had a traumatic brain injury. His right lung had collapsed and his red cell count was too low. His body wasn’t getting the oxygen it needed.
One night I got a call from the doctor. “Mark’s white cell count is dangerously high, which indicates infection, stress and inflammation. We think he may have a serious liver infection and we need your permission to do a liver biopsy.”
I gave my permission and hung up the phone, feeling helpless.
I knelt by my bed and cried out, “I’d been praying for Mark’s red cell count to increase and his white cells did. Why aren’t my prayers being answered? When will this nightmare end? I’m scared he can not get better. I’m worried I don’t have the strength to endure life this way. I am exhausted! What am I suppose to do?”
In my despair, a question came to my mind. Do you believe in miracles? Yes, I believe in miracles! Then assurance came —If you believe, you will see miracles wrought before your eyes. Remember, some miracles take time.