Three tips from Barbara Larsen’s Story, Joyce, an Angel in Our Home
1. Feelings of failure are normal. I have known Barbara Larsen for many years. She is a neighbor and dear friend. I never knew she felt like a failure nor did I ever think of her this way. I only saw the kind, loving sister she is. I am grateful for her honesty and it helped me realize that sometimes we just expect too much of ourselves.
2. Frustration is common. It’s understandable and okay as long as it’s dealt with in a positive way. Find outside help from family, friends, church or other organizations. Share the responsibilities and the blessings that come with it. Taking a break is necessary for overcoming frustration.
3. Care Centers can be the best solution. Barbara said, “It’s okay, if it comes to a point you can no longer take care of your loved one in your home. Let the professionals do it. There came a time when I knew others could take better care of Joyce than I could. It was difficult to let her go, but we still loved and supported her at the care center even though it was hard to watch her slowly leave us.”
I really appreciated the stories shared this month by three guest authors of a mother, grandmothers and a sister. Since it is the month we celebrate Mother’s and Memorial Day I thought these three stories would be a perfect match for this month. I learned a lot from each one and based the Tuesday Tips this month on their stories. Each caregiver’s loved one has passed into a better place where health is no longer an issue. Each guest author stated that caregiving was a lot harder than they thought it would be and needed to seek help from others. I echo this feeling and add, it’s a good thing we don’t realize how hard it will be or we might not be so willing. I was impressed that each one voiced the love, personal growth and appreciation for the opportunity to give care even though or possibly because it was the hardest thing they’d ever done.
These three stories helped me realized how similar caregiving is to raising children. Not only do they have like responsibilities, but when you’re in the middle of doing it—it seems like it will never end. However, it eventually does. Just like our children grow and leave our homes—our loved ones move on and return to their heavenly home. The responsibility does end and when it does there are things we will miss. Dianne, Julie and Barbara’s stories prompted us to appreciate the time we have and to make the best of our circumstances. Hopefully, in the end we won’t have regrets and we will be at peace, realizing we did our best.
I appreciated the honesty of each one as they expressed their overwhelming feelings and frustration at times. Thank you for reminding us that life doesn’t have to be perfect to be wonderful and neither do we.
Written by, Barbara Larson
First of all, I want to thank this wonderful website and those involved with it. It is inspirational and healing, for those of us who are or have been caregivers to those we love.
My name is Barbara Larsen and I grew up with seven other siblings in a small home in Salt Lake City, Utah. We didn’t have much but we were very happy. I shared my bedroom with 3 of my sisters. My sister, Joyce was the fifth child and two years older than I. She was born with Down Syndrome and her mentality only reached that of a 4-5 year old. She was very challenging for my parents, as I remember her tantrums and nothing would control them. She scratched herself and made herself bleed. She wasn’t potty trained until age nine along with many other complications. There was never any complaining. My parents did get
frustrated, but the love shined so bright it would wipe away the frustration.
I grew to love my special sister and I remember the day I told her I would always take care of her. As my parents grew old it was hard for them to take care of Joyce and they worried about who would take of her when they passed away. I assured them I would take care of her, only remembering the good times, when her sweet personality made me laugh, and how much fun she was to be around. I thought about how great it would be to have her with me. I pictured it like a Cinderella story.
My dad passed away in 2007 and a year later my mother needed extra care from a fall she had taken. Her leg would not heal, so she went to a care center and Joyce came to live with me, my husband, Leroy, and our six children age ranging from seven to eighteen. My sister was about fifty-three at the time, which is considered old for a Down Syndrome person.
It was wonderful for a year. Joyce would go everywhere with us and my kids would play with her. I taught music lessons and she loved listening to the music. Our boys were active in sports and she enjoyed going to the school sporting events and watching them play. Our girls were in choir and drama and Joyce was delighted to watch them participate in programs and plays. She was just part of the family and we loved it. There were challenges that first year, but we enjoyed having her with us.
The following year her seizures became more frequent and she needed 24 hour care. My Cinderella story wasn’t happening. This was the hardest thing I have ever done. I still had young kids at home, busy with school activities and I taught music lessons. How was I going to do this? I remember the days I was frustrated, and would always think of my mom and dad and their example of patience and love, and it helped me through it. Also humor helped us get through the trying days. My children learned to love and serve her. They did things I would never have asked them to do. It was amazing how serving Joyce brought out the best in everyone.
I also turned to siblings who would give me breaks by taking her during the day and sometimes on weekends so I could just be a mom. I let half my music students go, which relieved some of the pressure, but Joyce didn’t want to eat anything. Everything made her sick. She had no control over her bladder and I was changing her quite often. She had seizures regularly, and I sometimes felt I couldn’t take it another day.
Well, that day did come when my youngest son had been in a serious boating accident at Lake Powell and had to be life flight to Primary Children’s Hospital which was 388 miles away. This caused him and me post-traumatic stress. I remember the day I lost it with my sister and yelled at her. She didn’t deserve it. It made me so sad I cried as I hugged her and said how sorry I was. I began to fall apart because of all the stress. Exhausted, I finally told myself I couldn’t handle everything any longer.
I will never forget the day I had to tell my angel sister good-bye as my sister in-law drove her to the care center. I felt like a failure. I thought, Why couldn’t I do it? My mom took care of her. What was wrong with me? I cried many times about this. I visited her often at the care center watching her slowly deteriorate was tough. My angel sister passed away about 1 ½ years later. It has taken me a long time to look back and be okay with all that happened.
I want others to know that it is okay if you become frustrated, as long as it’s dealt with in a positive way. It’s okay to say “I can’t do this anymore.” Find outside help, because sometimes it is the best solution. It’s okay, if it comes to a point you can no longer take care of your loved one in your home. Let the professionals do it. There came a time when I knew others could take better care of Joyce than I could. It was difficult to let her go, but we still loved and supported her at the care center even though it was hard to watch her slowly leave us.
After all this, as I look back, I still feel her presence in our home. She blessed our lives so much and I would do it all again. The only things I would have changed are my expectations and the realization she wouldn’t be around much longer, so enjoy the time I had with her.
My husband and I, along with our six children have been changed for the better by having the opportunity to care for our Joyce.
In loving memory of Joyce Dibble.
Thank you Barbara for sharing your touching story. I don’t believe Joyce, is the only angel in your home—you are also. She was so lucky to have so many people love and care for her. What a great example you are and a huge difference you made in Joyce’s life. You are an angel sister.
Often it’s hard to fully appreciate what you have until it’s gone. When you miss it then you realize just how blessed you were. Last Sunday’s Story by Julie Brown, Caregiving Memories of My Grandmothers, was a great example of appreciation all way around. Julie was grateful for the opportunity to care for her grandmothers and they appreciate her for the care she gave.
I was fortunate to know both of Julie’s grandmothers. They welcomed our family when we moved into the neighborhood. They were friendly, happy and the kind of people that always made you feel better just by being around them. Last summer when Mark was at the rehab center, Julie’s grandmother was in a room just a few doors down from Mark’s room. Since I was with Mark most of the time, we witnessed the sweet visits from Julie and her children. I was impressed and touched by her love and support and know her grandmother was also. At mealtime we often sat at the same table with Julie’s grandmother and she spoke often of her family and how grateful she was for them.
Three tips from Julie’s story:
1) Sometimes your presence is all the help that’s needed. Julie recognized the importance of visiting her grandmother in the rehab center. Sometimes she would rub her feet, brush her hair and other times she just sat and held her grandmother’s hand. Giving support and encouragement in this way was all her grandmother needed. Nothing feels better than knowing you are loved and cared for.
2) Humor relieves stress. While Julie’s grandma was living with her and dropped something, she would apologize for the mess that needed cleaning. Julie used humor instead of getting upset by saying, “How did you know I needed to mop the floor?” Also when Julie’s kids couldn’t understand why she was happy to make another meal for Grandma and not them, she would say, “When you are 90 years old, you can be picky too.”
3) Appreciate the time you have. During the hard times, when Julie was tired or frustrated she would remind herself that her grandmother would not be here much longer and what an honor it was to take care of her. Most things are harder than we think they’re going to be and being a caregiver is no exception. I think it’s wonderful Julie stuck with it and recognized the blessings which came because of her service. The appreciation her grandmothers expressed to her and the feelings of gratitude she felt from her deceased grandpa brought pleasure and made her caregiving worthwhile. This is a great reminder for all of us—when someone is doing something nice for us—appreciation is the best pay.
I thought Laura Nordfelt’s comment was worth repeating, “What an amazingly sweet person you are Julie and what a great gift you gave to your children, not only the time they had with their great grandmother, but the lesson they learned about giving back. You are one smart (and wonderful) Mom.”
Written by, Julie Brown
My name is Julie Brown and I have 3 young kids. We live in little rambler in a regular neighborhood and I am blessed to be a stay at home mom. I enjoyed my growing up years in a close knit family with both sets my grandparents living close by. When my grandfathers passed away, my mother was a caregiver to both my grandmothers. I assisted my mother in caring for my sweet grandmothers even before I had children.
During the summer of 2013, as both of my grandmothers aged and my own mother’s health was less than desirable, my role as their caregiver took on more responsibilities. I went daily for a few hours to help my father’s mother, who still lived in her own home across the street from my parents. I worked hard getting her home back in shape including washing her drapes, windows and other deep cleaning that hadn’t been done in years. I also went to the store for her and did yard care. I enjoyed helping her this way because I was so close to her growing up and when there was trouble at my own home, I had her shoulder to go cry on.
After about a month, my grandmother fell and broke her pelvis. She had to go to a rehab center to get back on her feet again. I kept up my daily routine of visiting her and taking her laundry home to wash. There was not a lot I could do, but I knew it was important to show her I cared. I would rub her feet, brush her hair and sometimes just sit and hold her hand. I hoped she would be able to come home, but after a month and a half it became apparent to me that she was not going to make it. It was hard to see her struggle so much to get better. At the end of September grandmother passed away in the night. She was such an amazing example to me and I was so happy that I was able to spend time with her before her death.
At age ninety, my mom’s mother had diabetes. She used a walker to get around and required help dressing, bathing, and having her food prepared for her. Back in her day, she was a great mother who had 10 kids and was a wonderful seamstress. I remember going to Grandma as a young girl for help on all of my sewing projects. I also learned how to knit and make covered hangers from her. It was difficult to see how hard it was for Grandma to do anything in her later years, knowing the independent and self-sufficient lady she had been.
My mother became unable to take care of Grandma, so I told her she could come and live at my house and I would take care of her. Being blessed as a stay at home mom, I am home most of the time anyway. I knew it would be more work than I was used to, but was happy to do this for Grandma. I felt like her time here would be short and having her live with us would provide an opportunity for my children to get to know their great- grandma even better and a chance to build cherish memories of her.
I can’t say it was easy. Every morning I felt like by the time I had everyone ready in the house it was time to make lunch. I also felt like I couldn’t go places much because I needed to make arrangements for my grandma. However, the hardest part of it all was how picky she was with her food. Many times I would give her options of what she could eat and would make the meal of her choice just to present it to her and have her change her mind, or think it didn’t taste good. Knowing that she needed to eat, I would fix her something else. Of course I would never let my kids get away with that, and they couldn’t understand why I was happy to make something else for Grandma and not them. I would tell them, “When you are 90 years old, you can be picky too.”
Many times in the night she would get up for one reason or other and I would quickly get out of bed to help her back into bed. She would sometimes think she wasn’t dressed for bed when she was, or she wanted to put her teeth in the cup to soak and they already were. I would just gently tell her that everything was taken care of and she should go back to bed. It made some days hard when I ran on so little sleep—especially coupled with nights when I also needed to get up with my small children.
To get though the hard times, such as cleaning up after an accident all over the floor, I would use humor. She would apologize when she made messes that needed cleaning and I would say, “How did you know I needed to mop the floor?” I also reminded myself often that she was not going to be here much longer and I was honored to take care of her.
Last month, after taking care of Grandma for about 3 and half months, she passed away. I miss her so much and I miss taking care of her. I am so very thankful I had the chance. Every night she would squeeze my hand and tell me how much she loved me and was thankful for me for taking care of her. I would not change that for the world. In the last days of her life, I felt strongly that my grandfather was very pleased with how lovingly I took care of her, which made it all worth it. What a great blessing and I would do it all over again in a heartbeat!
Thank you Julie for sharing your inspiring story and tribute to your grandmothers. I added quotes that reminded me of mine and your grandmothers. What a wonderful granddaughter you are!
Three caregiving tips I gained from Dianne’s Story, Caregiving Reflections:
1) Share the responsibility. After three years of taking care of her aging parents, Dianne proposed a plan to her siblings. Each would take one day to fill the needs of their parents. Dianne took the extra day in the week meaning she had two days instead of the five to seven that we had been trying to cover before.
2) Set limits to your time. Dianne’s siblings all had full-time employment which meant many times the assigned person for that day had a work or personal conflict. Because Dianne lived close by, she was often called to fill in when it was hard for others. As the primary caregiver, it is important to set limits and enforce them so you don’t get burnt out.
3) Live without regrets. Dianne doesn’t have any regrets when it comes to the time and efforts she spent caring for her parents for over five years. She realizes she did her best to fill their needs and appreciates the time she spent with them. I was especially impressed that the family continued checking on their mother even when she was in a care center. I’ve seen many lonely people in care centers because their family does not visit them or make sure they are getting the necessary care.
Written by, Dianne Breitling
Mother’s Day has become a time of reflection for me as I remember the final years my mother and I spent together. The hours we shared as well as those spent doing things for her are precious to me now, filling my heart with gratitude for circumstances which allowed me this privilege.
My mother had spinal disc problems which resulted in several surgeries and constant pain. She also had to have both hips replaced. Because of her physical limitations, my father became her caregiver doing all of the cooking and housekeeping for about fifteen years. Late in life my mother developed severe arthritis, which greatly limited the use of her amazingly creative hands. Through it all, my mother could always be seen with the most wonderful smile on her face. She loved people more than anyone I have ever known. For the final eighteen months she was in her scooter most of the time because the pain had become more than she could bear when walking.
At age 85, my father had a minor car accident, making him feel unsafe on the road. His wise decision to stop driving was the start of my journey as a caregiver for both of them. Since I lived close by, I gladly took on the responsibility to drive them wherever they needed to go such as doctor and dentist appointments, getting haircuts, and shopping as well as picking up prescriptions or any other household or personal items they needed. This was a difficult transition for my father since he had been the caregiver for my mother for so many years. He went from doing everything for the two of them to depending on others in a relatively short time and each loss was painful for me to watch.
Both of my parents became so comfortable with me doing things for them that even when my siblings offered to help by taking them to their doctor’s appointments, they wanted me to do it because I was familiar with their needs and knew the doctors they were seeing. They also preferred me to do the shopping over my siblings because I knew their likes and dislikes.
Dad became very ill and had an emergency colostomy, changing our world drastically. I spent countless hours with him in the hospital trying to get answers from the medical team and worrying that we might lose him, while still caring for my mother’s needs. When he returned home it became clear I could not carry on with everything I had been trying to manage while adding the new burden of changing his colostomy bag regularly. My brother would sometimes do this, but he had irregular work hours and lived further away so it was difficult for him to be there at the needed times. The responsibilities had fallen on me because of how close I lived to them and because I was the only child who did not have a full-time job.
After three years and growing needs, I requested each of my siblings to take one day to check on them. They were asked to make sure our parents had everything they needed and to help with dinner if necessary. When our father was in the rehab center, the scheduled person for the day was responsible to lay out breakfast, medications and check on mother by phone in the morning. This gave me two assigned days instead of the five to seven days I had been used to, but even that became difficult because if someone couldn’t meet their obligation my mother would call me and ask me to come over. Calls early in the morning or late at night were a regular occurrence. Often I would hear from my parents and my siblings that I was a life-saver or they wished I didn’t need to do so much, but after years of struggling with so many responsibilities, those words were not enough. I can see now it would have been so much better if I had been able to convince my parents to let me hire some outside help, but when I was in the middle of the experience, it was hard to know what to do. Looking back usually changes the perspective and solutions become clear.
In 2010 my father was hospitalized with a severe infection (MRSA) and while in rehab, he agreed to move into an assisted living center. My brother, sister and I made the arrangements, but at the last-minute he changed his mind. He didn’t want to give up the little bit of independence he still had, making those last days in his home emotionally difficult for both of us. I wanted to help make it possible for him to live at home, but told him when he could not prepare their meals that would no longer be possible. Both parents refused the idea of having Meals on Wheels delivered or having someone come in to cook and clean a few times a week. At this time the emotional strain was increasing because they knew I was making it possible for them to live in their home. This created feelings of gratitude, but also resentment towards me because I had too much say about what happened to them.
After a second bout with the MRSA infection, my father realized his strength wasn’t returning and once again asked me to make arrangements for them to move into an assisted living center. My father only lived there for five months before he passed away. My mother was lonely and continued to need attention after his passing. My siblings and I continued our daily schedule of checking in on her for the additional thirteen months of her life at the assisted living center.
Through all of the years of caregiving, my husband was always supportive. Not only did he spend time doing many things for them, he never complained when he came home to an empty house and no dinner or when our lives were put on hold while I met the needs of my parents.
As I reflect on the time spent caring for my aging parents, I realize the major challenge was recognizing the weight which came from the cumulative effect of the responsibilities taken on. The coordinating of two households with the added worry and care of their declining health was extremely difficult.
While I missed spending time with my children and grandchildren during this time, I am grateful I was given the strength to care for my parents during their final years. When I look back on this experience, it is clear that the blessings far outweigh the sacrifices. My feelings are joy and comfort because I have no regrets. I’m happy they are in a better place without health complications and pain; but I love and miss them both.
Thank you Dianne for your caregiving example and for sharing your experience on Uniting Caregivers. What a wonderful daughter and big difference you made in their lives.