Written by Jessie Ary on Tue Feb 08 2022.
Carewell is proud to announce the 2022 Caregiver of the Year, MaryAnn Gerth! MaryAnn’s nomination highlighted her selflessness and compassion, and her impact as a caregiver. MaryAnn embodies and exemplifies what it means to be a caregiver. Caregivers demonstrate love and patience, and are committed to providing loved ones with comfort and support.
From all of us at Carewell, we are so incredibly grateful for all 1,141 of you who entered to nominate a caregiver. We have never received so many entries, and while this made the decision making process extremely difficult, we are amazed at how many strong, humble, and kind-hearted people serve as caregivers every single day. Every unique story was touching and inspiring, and we are honored to have been given a glimpse into your lives. We want you all to know that your challenges and sacrifices are appreciated and admired, and the difference you make as a caregiver every day is priceless. Our Carewell team read every single entry that was submitted, and we were blown away by how touching each and every nomination was. Reading the entries made our team proud to serve so many wonderful caregivers.
This award also would not have been possible without our amazing Carewell ambassadors who assisted in the decision making process. A huge thank you to:
Elizabeth of Happy Healthy Caregiver
Adria Thompson of Be Light Care
“I am submitting this nomination on behalf of myself. It is difficult writing about myself as the caregiving that I do has been something that I have done the majority of my life and it is who I am in providing the care needed for my family. I am hands on and involved in wanting the best quality of life for my family members.
My role as a caregiver is for my mom (age 96) and my only brother (age 57) who was born with Down's syndrome. My mother has been in a wheelchair since 2008 due to osteoporosis and a setback from knee replacement surgery. In 2009, my husband and I started an in-law addition to our house to accommodate moving my mom and brother in. The addition being fully wheelchair accessible consists of a living area, dining area, kitchen, bathroom, and two bedrooms was completed in August of 2010 at which time my mom and brother moved into our house.
In 2020, I started noticing changes with my brother some of which I thought were due to the change in his routine when the pandemic started, and he was not able to attend adult day services for several months. With the changes that I was noticing, I took him to a neurologist and to the family doctor. We tried some medication that we thought might help with the dementia symptoms that I was noticing. I researched the correlation of down’s syndrome and dementia and learned that 1 out of 3 individuals with down’s syndrome develop dementia by age 60. My brother being age 57 was within that age range. Research is starting to be done to help understand why some individuals with down’s syndrome develop dementia/Alzheimer’s and others do not. Ones born with down’s syndrome already have challenges and then to develop dementia, I feel is a double whammy.
My brother was a blessing to our family. He was an inspiration to so many and left a positive mark on everyone he met. His unconditional love, his hugs, and his smile were highlights to each person that he encountered.
After my father passed in 2003, I considered my mom and brother to be a package deal and I would take care of them to the best of my ability and would not separate them as they both needed each other, and I believe that my mom has lived to oversee the care for my brother. Once a parent always a parent over a special needs child. This was a bond that I was not going to break. I once was told that taking care of family is not for the meek. That is true. You have to learn and adapt to weather the situation presented. I was also told many years ago that I could not take care of my mom because she was in wheelchair. I did not let that comment stop me. Again, I was going to keep my mother and brother together no matter what.
2021 was a difficult year for my family as my role as a caregiver increased. At the beginning of the year, my brother developed a wound on his back side. I sought medical attention for him, and treatment began. In March and April, he was hospitalized for wound care and in May, he got a wound VAC. I learned a lot about wound care. I watched and helped the home health nurses treat Bobby’s wound which I had to treat on the days in between their visits. It was especially interesting learning the mechanics of the wound VAC. During this time frame, Bobby was starting to decline and didn’t want to walk. In June, a wheelchair was used to get him around. In September, he was hospitalized again. This time for an aspiration pneumonia. His decline continued. Then in November, he was hospitalized again for another aspiration pneumonia causing him to be in ICU for five days.
During each of his hospitalizations in 2021 which totaled 27 days, I fought hard to have a family member stay with him around the clock because I was very concerned with him being non-verbal and not understanding what was happening that he needed an advocate. I was able to stay with him during the day usually at least 8 to 9 hours (not leaving his bedside during that time) and then either my husband or one of our three sons stayed with him at night. This arrangement allowed me to be at home in the mornings with my mom to get her up and situated for the day and then in the evening to have dinner with her and put her to bed. This time also allowed me to talk to her about Bobby’s care and what was going on as she was worried about her son and missing him. At each of my brother’s hospital stays, I was with him when he had cat scans, barium swallow study done, x-rays, blood draws, central line inserted, PICC line attempted, etc. to comfort him and get him through each test and procedure. I donned the heavy weighted safety aprons during x-rays and cat scans to hold his hand. For the swallow study, I gave him the food as they thought he would take it easier from me. I never once gave any thought of not being with my brother as he was in an environment that was unfamiliar, with everyone wearing a mask, foreign sounds, mechanical beeps from equipment, alarms sounding, and clear bags precisely labeled with chemical solutions dripping steadily in tubes attached to him as he needed a familiar face and voice to offer comfort. During this entire time (sometimes uncertainty present) my strength came through my faith with lots of prayers being said and the dedicated medical staff who quickly realized that me being with my brother was helpful. I always offered to help each nurse or aide that came in the room to assist my brother. It was a learning experience for both the nurses and the resident doctors (we usually had between 5 and 7 residents visit each hospital day) as some had not taken care of a special needs patient.
We were very blessed though because we did have several nurses and aides that did have familiarity with caring for a special needs’ person and I was able to tell quickly those individuals in how they interacted with my brother. My husband and sons assist me when they are able in the caring for my mother and brother. Some days, I lift my mom in and out of the wheelchair 10 to 14 times a day (in and out of bed, on and off the toilet, in and out of the recliner, etc.). Then I would lift my brother in and out of his wheelchair. In addition, their daily care includes dressing, bathing, giving medication, and feeding. At times it was difficult when I was sitting between my mom and my brother each in a wheelchair feeding them. This gave me the thought of what it was like feeding twins. For me, each day is an adventure. There is no perfect life. This is my life in being the best I can be in caring for my family and I embrace it to the best of my ability. Each day holds unexpected frustrations but unexpected delights in knowing that I am making a difference in the care of loved ones. Having family at home, I feel impacts their quality of life and helps ensure they are getting the proper level of care and support needed. There is also the personal affirmation that I feel when helping someone who helped me as my mother nurtured and instilled values in me as her daughter and I am passing on values and behaviors to my three sons. I believe (if one is able) that caring for people in our lives is the right thing to do.
In June, my mother’s knee was swollen the size of a softball. I called the orthopedic doctor that did her knee replacement surgery over 15 years ago and he worked her in to see her. X-rays were taken but showed no apparent issues. The doctor drained the fluid off the knee, and we went home. A week later, my mom’s knee was swollen again, and I called the doctor’s office again, but the doctor did not want to do anything. I felt so discouraged as I felt something was going on that needed to be treated. The following week through what I truly believe was divine intervention I received a call from an orthopedic doctor who was visiting another person that I help take care of that is under guardianship and lives in an assisted living facility. The person did not answer her apartment door, so the doctor called me as I am a contact on her behalf. I talked with the doctor about the person that he was to see and then I explained the situation that I was having with my mom’s knee. This doctor works part-time for the at-home health service that I have for both my mom and the other person. I explained to the doctor what was going on with my mom’s knee. He said that he would contact scheduling to see her the following week. However, within a couple of hours of talking with the doctor, I received a call from a lab saying that they were coming to take x-rays of my mom’s knee and then a couple of hours after that the doctor called to say that he would be coming to our house that afternoon. I was overwhelmed. Through my journey
I feel that God is present and helping me in caring for my family and by putting the right people in our path to provide assistance. The doctor came and visited my mom, reviewed the x-rays and found that she had a broken femur. We have no idea how the break happened. He recommended a brace to stabilize her leg and a company came the next day with the brace. My mom wore the brace for about 3 months and then the leg was x-rayed again but unfortunately the bone had not healed as we hoped. Basically, my mom has outlived her knee replacement. I was extremely impressed with the care and compassion that this orthopedic doctor showed and grateful that he works part-time for the at-home health service that we have for my mom. I spoke a couple of times with this doctor by phone and I was speechless when he told me that I was an inspiration to him for the care that I was providing to my mom and brother.
On November 16th, my brother was discharged from the hospital, and I had to make the difficult decision of placing him under hospice care. I brought my brother home from the hospital which was my goal so that he could be reunited with our mother. For nine days, myself and my sons cared for Bobby. At 2:15 a.m. on November 25th (Thanksgiving Day), my brother gained his angel wings. It is difficult that he is no longer with us in earthly form but the joy of knowing he is now in his eternal home and no longer suffering and is now walking and talking brings comfort. The day of my brother’s funeral, I was concerned about taking my mom. The third time that I asked her that morning if she thought she could make it, she said “I can, I will, and don’t ask me again.” With that being said, I dressed her and got her ready to go to the funeral home. At the funeral home, she recognized people that she had not seen in years, and she made it through the service and the trip to the cemetery. I am grateful that she made the decision to go as I wanted her there sitting beside me. It also made me think what mom was told years ago about Bobby’s life expectancy that he probably surpassed whatever my parents were told. I also reflect on the role model that my mom was during my growing up years. Watching her take care of my brother and she also took care of her mother-in-law who lived in our house for 17 years. Growing up in a multigenerational household was what I knew so when it came time for my mom and brother to move into my house, I knew it would be a learning experience for my three sons who are currently 28, 24, and 20.
I count each day as a “blessing” and am grateful for what I can accomplish through the day in caring for my family. Because of my direct involvement in the care of my mother and brother, it allows me to feel that I did and have done all I possibly can and could do thus allowing me not to have regrets about the care given. Through wonderful health care professionals who have assisted me, we have worked as a team to provide the best possible care to my mom and brother, and I am very grateful for the connections. It has been a big adjustment going from a caregiver of two to a caregiver of one. I am doing my upmost best in taking care of my mom. I know she is tired (I remind myself that she is 96) and she misses my brother. She is sleeping more and doesn’t want to eat or drink much but her vital signs are good.
On Christmas Day, my mom had an in-home hospice evaluation, but she does not qualify as she does not have as a primary diagnosis something that is a life-ending illness which is amazing at age 96. A broken heart from losing my brother and failure to thrive do not qualify her for hospice. I am doing my best in keeping her comfortable and trying to be creative in getting high calorie nutrients in her. For now, I am cherishing each day that I have with my mother. Being a caregiver is what I have done for the majority of my life. Caregiving has made me realize what truly matters in life and that is the people and relationships of our daily life. Life is short and we need to remember that each day is a new day to embrace and make it a good day as the day will never come again so make the day count by doing something positive as it is a “blessing.”
Thank you so much for all you have done, MaryAnn. We want to honor you for the challenges you’ve faced and the sacrifices you’ve made. We are proud to present you with Carewell’s 2022 Caregiver of the Year Award!
Many older adults who require care also experience limited mobility. Devices like walkers, canes, and rollators can encourage independence at home, but more complex activities like bathing, changing, or using the toilet often require additional assistance.
Medically Reviewed by Kiera Powell, R.N.
Carol B. was awarded the title of Companion Caregiver Hero after she became the caregiver of her friend of 45 years when she began needing care, without a second thought.
Read More >Jessie Ary is Carewell's Content Coordinator. When Jessie isn't writing for Carewell, she spends her time attempting to climb rocks and traveling throughout the country with her cat, Carrot.