Throughout our lives we will experience many transitions; from school to work, a move across the country, becoming a parent, and so many more. One of life’s transitions that many of us don’t think about is the day we may not be able to live on our own, and will need the services of a nursing and rehabilitation facility. While a nursing home can be a great option and provide excellent care, there are many individuals that wish to transition from a nursing home and back to a community-based setting. The barriers facing an individual wishing to transition back to the community are numerous and unique; the Nursing Facility Transitions (NFT) program at Disability Advocates works with each participant to develop their own Person Centered Plan to address their barriers to improve the transition process, avoid re-hospitalization, and any other issues that can arise without proper planning and attention to detail.
In July, Disability Advocates Transition Navigator, Jeanette Tibstra, worked to successfully move two individuals out of nursing homes and into their own apartments. Doug and Julia have two very different stories, but each of them faced barriers to finding appropriate and accessible housing to meet their needs in the community. Earlier this month we met Julia. Doug wanted the opportunity to share his story from his own experience, so let’s give it up for Doug!
My story begins on January 6th, 2018, when I woke up in the morning with no feeling from my belly button down. At the time, I was living in an apartment and doing pretty well on my own. I was especially worried, because I’d already had two previous back surgeries in 2002 and 2016 to treat arachnoid cysts in my T2-T7 vertebrae. I was admitted to a local hospital for testing, where I stayed for 4 days. After a three hour, full body MRI found nothing urgent, the doctors decided to send me to a nursing home for rehab. They thought that might help get me stronger.
When I went to the hospital in January, I thought, “Not this again, why is this happening to me?” When I first learned I was going to rehab for therapy I thought it was okay, but I was scared about the outcome. I just knew I needed help.
I was in rehab for about two months, and worked with PT and OT everyday on my balance, strength, cooking, and more. I also saw another surgeon in Grand Rapids who recommended we get a second opinion because nobody could figure out exactly what was wrong and I still didn’t have any feeling in my lower body. He suggested that we go to Henry Ford in Detroit, because they specialize in Neurological Disorders.
In mid-March, we set out to Henry Ford in the ‘Big D’. We met another neurosurgeon who ordered another MRI and a Myelogram. Those tests found another arachnoid cyst, and that 8 inches of my thoracic spinal cord was tethered to my spine. They wanted to operate right away, and three days later I had a nine hour surgery on my back. From there I went to intensive care, the neuro floor at Henry Ford, a different rehab hospital in Detroit, a nursing and rehabilitation facility in Livonia. I finally arrived at my final nursing home in Grand Rapids in early May; it had been a long four months!
I had mixed feelings when I got back to Grand Rapids. I wondered, how was everything going to work out? I had both a negative and a positive outlook. In mid-February I received notice that I wasn’t receiving enough care to stay anymore, and I had just 90-days find a place to live.
I was also diagnosed with a learning disability in second grade. A learning disability is hidden. That was hard to deal with, but I handled it. Now I also have a physical disability, and I use a wheelchair and a walker; I can’t walk far, and I have to use this medical equipment to get around. Sometimes I feel like people might look at me funny, and I know I have to ignore the looks. I shouldn’t care what people think, but I do because I am a sensitive person. I know I am the person God meant me to be, and that means I am the person I should be.
In the middle of all this, I met Jeanette from Disability Advocates, so we could work to try and find me a place to live. I was sad about leaving and didn’t know if I could do it because I was still getting help with a lot of things. I really couldn’t have done it without Jeanette. She is a really outgoing lady. She makes me feel great about myself. I know I couldn’t have moved out of a nursing home without her help. Jeanette spent 2 hours with me every week from the beginning of March until the end of June. Together we called at least 183 Adult Foster Care homes, which is a lot of AFC homes! When I met Jeanette I was negative about how this was going to work out, and I wanted to stay at the nursing home. Jeanette encouraged me and told me I could do it on my own, and I think she is great at what she does. With her help, I realized that the nursing home wasn’t for me anymore.
Jeanette helped me to furnish my apartment, buy the things I needed, and helped me move in. Disability Advocates is great at helping people with disabilities like me. They are on my team to succeed in the community. If you have a disability and you need help, call them and they will take care of you and your needs. Thanks to Jeanette and Disability Advocates. I have enjoyed working with them!
Doug, it has been my pleasure to work with you!
Jeanette Tibstra, Transitions Navigator