My Personal Experience
I understand how a new caregiver feels. I’ve stood at that same door of uncertainty and felt the tidal wave of anxiety roll over me as I wondered what lay ahead. Over the past twenty years, I experienced first-hand caregiving during three major family life events.
– As a mother caring for my child who had both physical and mental health care needs crippling her ability to function,
– As a grown daughter supporting her father who was caring for her mother dying of cancer and providing care to her during chemotherapy for a year, and
– As a wife caring for a husband, diagnosed with multiple sclerosis (primary progressive), who changed from being able to do master anything life threw at him to not being able to scratch an itch on his arm.
My Professional Experience
Through these experiences, I gained a vast amount of knowledge and insight about family caregiving. I was fortunate, however, in that I believe God had me get prepared ahead of time through a series of challenges that equipped me with the skills I needed to survive.
I graduated from nursing school in 1978 and worked in or around healthcare until 2018. I had a unique healthcare career. It allowed me to experience a multitude of specialties and gain expertise in areas often limited in opportunity. Looking back, it expanded my insights in remarkable ways. My discoveries fit perfectly onto the toolbelt I eventually needed to acquire to successfully care for all the family members needing help in my future. The ability to gain what I needed when I need it was explained for me by my faith because I believed God had a plan for my life and prepared me to fulfill it. He tried to get me ready. Still, it was very hard.
Hospitals and home are not the same
Having seen life from both sides of the healthcare door, and from exposure to so many medical situations, I can say without reservation that caring for someone in a home is very different than caring for someone in a hospital setting. It’s similar, but there are many significant differences that someone who only knows hospitals does not automatically consider.
Why I Started "Becoming a Family Caregiver"
I first became a caregiver raising a child with special needs. That marriage became a statistic of caregiving marriages and ended in divorce. I remarried a few years later to a man supportive of my role of a caregiver. It was ironic in a way because, within a few years of our marriage, his diagnosis of primary progressive multiple sclerosis resulted in my becoming his full-time caregiver.
As I have interacted with other caregivers and the healthcare system over the past thirty years in caregiving for my child, my spouse, my mom, and now, my grandchildren, the lack of support for family caregivers is a glaring deficit in our healthcare system. We expect untrained and unprepared family members, often still in shock over what has happened to their loved ones to go home and care for them in the same way a nurse provides care after four years of training. Then they wonder why hospitals have such high readmissions rates after discharge?
- Don’t have the emotional support they need for their well being
- They don’t have the training they need to problem solve the unexpected
- They don’t have the knowledge to know how to prevent problems
- They don’t have the resources available to make their jobs safer and more comfortable to perform
- They don’t get the rest they need to be able to be safe for themselves and the one under their care
- They don’t know where to go to get help, and they don’t have the time available to research where to go to find it
When I retired from working a full-time job while being a full-time caregiver, I was exhausted, depressed, and burned out. I didn’t like myself and not much of anything else. I was seeking medical care for several medical conditions, and all answers returned to the stress. My doctor finally said I had to find some balance, and not working was the only way to do that.
Once I retired, I felt a strong desire to reach out to other caregivers to help them in a way that was not available to me when I needed it. I didn’t want anyone else to go through what I had suffered. So, I started researching the internet to see if anything currently existed like I had in mind. I found that many agreed there was a need but few offered solutions. Some universities offered support to their family caregivers using their facilities. There are also some other caregiver blog sites trying to do similar work. I applaud their efforts and hope this trend continues.
For now, my mission is to reach as many caregivers as I can
- to find resources for new and current caregivers for information and training. In some cases, I may produce the information and training, and in others, I will provide the link.
- To promote products and equipment that make life better for the caregiver or the one receiving care in some way.
- to provide consultation or problem-solving assistance to families or facilities
- to promote a community of caregiver that encourages individuals to privately share their stories and lives for emotional support reducing feelings of isolation
- regularly sharing topics related to caregiving through blogs with an open discussion to promote lively discussion and exchange of ideas
- to occasionally gather data from members through surveys regarding issues of interest supporting caregiving
In achieving these goals, I will succeed in helping other caregivers carry their burden the extra mile each of them walks daily. If I do that, then I’ll call it a good day.
BLOG LIBRARY MY CAREGIVING JOURNEY I first became a caregiver raising a child with special needs. That marriage became a statistic of caregiving marriages and ended in divorce. I remarried a few years later to a man supportive of my role of caregiver. It was ironic in a way because, within a few years of our marriage, his diagnosis of primary progressive multiple sclerosis resulted in my becoming his full-time caregiver. As I have interacted with other caregivers and the healthcare system over the past thirty years in caregiving for my child, my spouse, my mom, and now, my grandchildren,
Hi, my name is Donna. I’m the wife of a Multiple Sclerosis patient, Lynn, diagnosed in 2006. MSCaregiverSharing, my original blog site, was dedicated to telling the story of how I adapted to being both a caregiver and spouse to someone with multiple sclerosis. As part of that story; however, the fact that we had recently married and it was a second marriage for both of us, played a factor in how we adjusted. As is true with many second marriages, especially those with children, relationship issues associated with old baggage, got in the way of how well we dealt with
Lynn’s story began when he was a young teen. His father, who was a carpenter, experienced difficulty walking. His diagnosis of multiple sclerosis came soon afterward. His life and that of his family changed dramatically with his diagnosis because at that time no treatments were available for MS. Lynn remembers his Dad’s health declining quickly and progressing rapidly from a wheelchair to a bed and him dying from MS complications before he turned fifty. Lynn watched as he struggled with depression and the frustration of having others do everything for him. Determined that the same would not happen to him,
My Education, Background, and Experience in Caregiving
Work Experience (Roles Held)
- Staff Registered Nurse (Emergency Department, Medical Units, Intensive Care, Home Health, Psychiatric Department, Chemical Dependency, Surgery Unit).
- Infection Control Nurse Manager
- Employee Health Nurse Manager
- Human Resources Management
- Child with obsessive-compulsive disorder, phobia, joint, muscle, and blood pressure issues.
- Spouse with primary progressive multiple sclerosis.
- Father-in-law with end-stage cancer (assisted with coordination of care).
- Mother with cancer.
- Grandson with autism and undiagnosed possible mitochondria disorder, digestive disorders, and immune system issues
- Granddaughter with cerebral palsy, possible brain stem degeneration, non-functioning small and most of her large intestine, and pending liver failure.
- Grandson with autism with postural orthostatic hypotension with a central line to manage it.
- Bachelor of Science with Major in Nursing, Virginia Commonwealth University/Medical College of Virginia
- Diploma in Nursing from Roanoke Memorial School of Nursing
- Infection Control and Prevention
- Substance Abuse and Prevention
- Threat Assessment and Intervention
- Domestic Violence
- Sexual Harassment
- Ostomy and Wound Care
- Chemotherapy Administration
- Cardiac Rehabilitation
- Patient Education Principles and Training
- Crisis Management
- Counseling Techniques
- Emergency Preparedness
- Emergency Medical Response
- Employment Law