For our fourth post in our Caregiver Month Blog Series, we are proud to present a post by Trish Hughes Kreis. Many caregivers don’t even know they are caregivers. Self-identifying can be the first step in getting the support you need. Thanks to Trish for this post, and thanks to Caregiver Cafe (http://www.caregivingcafe.com/blog/) for sharing with us!
What is a Caregiver?
by Trish Hughes Kreis
For many years I did not realize I was a caregiver and have met many other caregivers who felt the same way.
I thought I wasn’t a caregiver because I didn’t care for Robert one hundred percent of the time. In my mind, I was not a caregiver because Robert could do many things on his own. I was not a caregiver because others who really, truly are caregivers have much more to do than what I do.
It was surprising to me to learn that these other “real caregivers” felt they were not caregivers either. They were just helping friends or family who needed help.
That’s when I realized: caregiving comes in all forms and, yes, we are all caregivers.
More importantly, caregiving is not a competition. It doesn’t matter the amount we do compared to someone else!
I am a caregiver for my brother Robert who has lived with uncontrolled epilepsy his entire life. He was able to live independently with his companion for many years and our family checked on him and helped him with his finances.
However, six years ago, it became apparent that he was unable to safely live on his own. Robert’s uncontrolled seizures, brain surgeries, anti-epilepsy medications and head trauma have taken a toll on his cognitive and physical abilities and there has been a significant decline in the last few years, even since taking over his care.
I did not know what I was getting into when I first started caregiving for Robert. Robert lived ninety minutes away from me so at first, I just regularly called to check on him. It quickly progressed to taking him to doctor appointments while he still lived at home and making calls to see if he qualified for in-home care. I hired a housekeeper to keep his and his companion’s house clean only to learn from the housekeeper that they subsisted on long-expired food.
During this time, Robert developed a life-threatening infection from the Deep Brain Stimulator that he had implanted (he was in a study through his neurologist to see if this would help control his seizures). I moved him to a Skilled Nursing Facility near me. After a few stops in a Residential Care Facility for the Elderly (he was there under an exemption for those under 65 years of age), and a Board and Care home, Robert now lives with me and my husband.
When Robert moved to the SNF and I took over his care, I was quite overwhelmed. Robert’s insurance is paid through Medicare and Medicaid and he receives Social Security benefits because of his disability. While I muddled through the maze of these and other social programs, one of my first lessons was to be persistent and not give up.
Once I got past the overwhelmed stage, I realized there was information and resources I wanted to share with other caregivers so I started a blog (RobertsSister.com) about caring for Robert. There are millions of caregivers providing care to friends and family and there is no reason for each of us to go through this experience alone or to start learning everything from scratch.
My most important lessons I have learned so far are (in no particular order):
1. Connect with others. This site (CaregivingCafe.com) has resources and links to information for caregivers. Lynn Greenblatt was one of the first people to help me as a caregiver when I was trying to re-home a power wheelchair. I will not forget her kindness and responsiveness to my questions. CareGiving.com is another website that is has one of the most supportive community of caregivers I have found. Denise Brown runs an educational and supportive website for caregivers to learn, share and connect.
2. Do not give up. We hear the word “no” a lot when advocating for our caree. Do not let that be a deterrent. Be creative when searching for answers – sometimes asking questions (or asking questions in a different way) can lead to “yes.”
3. Educate yourself. The more you know about your caree and their disease, disability or disorder, the more informed questions you will be able to ask which will lead to keeping your caree as healthy and happy as possible.
4. Take care of yourself. Easy for me to say! Caregivers always hear this and it can be annoying when it seems impossible to even take a five minute break. Even if a break or respite is not possible, go easy on yourself. Remind yourself that tomorrow will be a new day. Be kind to YOU. That is the best self-care you can give yourself. Remember, we are all doing the best we can!
Caregiving is difficult (and some days seems impossible) but this experience has given me great satisfaction and allowed me opportunities to meet terrific, caring people.
I wouldn’t have it any other way.
About the author:
Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who advocates for her disabled youngest brother, Robert, in order to keep him as healthy and happy as possible. Robert has lived with intractable epilepsy his entire life and was recently diagnosed with Cumulative Traumatic Encephalomyelopathy and Parkinsonism (both due to repeated concussions and a lifetime of uncontrolled seizures). Robert now lives with Trish and her husband, Richard.
Trish is passionate about helping Robert fulfill his expressed life purpose of spreading awareness and education about epilepsy. However, she is on a no less important mission of keeping a never-ending supply of Word Search puzzle books and a steady supply of Jeopardy and Family Feud shows recorded for Robert as the simple things are what make Robert truly happy.