I first became a caregiver raising a child with special needs. Unfortunately, as is true with many marriages where a special needs child requires significant attention, our marriage ended in divorce.
Though hesitant to try again, I remarried a few years later to a very supportive man who understood my need to be present with my child during difficult times and showed compassion for my situation. Ironically, within a few years of our marriage, as my daughter began to need me less, he began to need me more when he discovered his diagnosis of primary progressive multiple sclerosis.
As I have interacted with other caregivers and the healthcare system over the past thirty years in caregiving for my child, spouse, mom, and 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 ones 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
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 as I had in mind. I found that many agreed there was a need, but few offered solutions. Some universities offer 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 somehow.
- to provide families or facilities with an opportunity to ask questions about care or resource topics
- regularly sharing topics related to caregiving through blogs
With God’s blessing and your support, I’ll be successful on that mission.