By Trish Hughes Kreis, Robert’s Sister
Robert is my youngest brother and has lived with uncontrolled seizures his entire life. He is physically and cognitively impaired and seems to have an additional diagnosis of a new problem every couple of months. He has gone from an energetic young boy who was able to graduate high school and even take a few college courses to living independently as a young adult to now needing full-time care.
Robert’s brain has been traumatized by two brain surgeries, numerous concussions and countless seizures. He was recently given additional diagnoses of Restrictive Lung Disease, Parkinsonism and Cumulative Traumatic Encephalomyopathy (CTEM).
After living independently and then a few attempts at living in an Assisted Living Facility and a Board and Care home, Robert now lives with me and my husband. This living situation is the best for all of us although with Robert’s declining mobility we may eventually need to place him in a facility that can provide him all the care he needs as his needs increase.
For now, my husband and I do our best to keep Robert healthy, happy and safe.
Sometimes it seems as if Robert loses just a little bit more of something all the time. Yet every time I am disheartened that he is in a wheelchair now more than he isn’t or that he is frequently in the hospital with pneumonia or getting a new diagnosis of Parkinsonism, I am reminded of his positive attitude and ability to make a joke out of everything.
Robert loves to laugh and to make others laugh with him although he hasn’t always been this way. In fact, he was a moody, withdrawn and angry teenager and young man. His uncontrolled seizures as well as the side-effects from his medications took its toll and Robert lashed out and was very unpleasant to be around.
This behaviour and attitude affected our relationship and I only talked to Robert on occasion – not nearly as much as I thought I “should.” He seemed to be stable living with a companion who also had epilepsy. Our dad lived in the same city as Robert and provided a little bit of assistance. Robert and his companion (whom he would have married if their benefits wouldn’t have been affected) spent their time taking care of each other, attending church and going to doctor appointments on their own.
Six years ago, it became apparent Robert was not making safe choices in his living situation and his memory was failing. He was forgetting to go to doctor appointments, fell prey to several financial scams, and even allowed a homeless woman to move in with him and his companion. Robert also developed a life-threatening infection during this time.
Time to step in!
Since caring for Robert, I have learned a great deal about Robert, my husband and myself. With regards to Robert, his faith never waivers and he never ceases to inspire me with his nightly prayer for his seizures to stop. Robert’s sense of humour keeps people smiling as he likes to joke about drinking whiskey or traveling to New York City (we live in California and, of course, he doesn’t drink).
My husband and I work well as a team and he continues to amaze me with his willingness to continue to help while dealing with his own chronic pain.
Robert has shared with me his belief that his purpose in life is to educate people about epilepsy. Robert had a near death experience as a teenager and has been extremely devout and devoted to spreading awareness ever since then.
I’m happy to be his “spokesperson” so we can help others in caregiving situations as well as spread awareness and education about epilepsy. I write our stories at www.RobertsSister.com and can also be found on Facebook and Twitter @RobertsSister1.
Robert, Richard and I will be doing a series of videos about epilepsy and the effect it has had on Robert’s life during Epilepsy Awareness Month in November. I hope Robert’s messages inspire others not to give up on a cure for Epilepsy!
About Trish Hughes Kreis:
Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who advocates on behalf of her disabled youngest brother, Robert, in order to keep him as healthy and happy as possible.
Trish’s advocacy work includes working to expand the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act. Trish has also participated in a number of interviews on managing life as a working caregiver.
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 steady supply of Jeopardy and Family Feud shows recorded for him as the simple things are what make Robert truly happy