Jadene Sloan Ransdell
Originally published April 11, 2015
About a week ago, I was asked what would be the most help to me as I learned about Matt possibly having Alzheimer's Disease. My response was not clear, I am sure because my thoughts aren't necessarily clear. I remember those days last summer as I came to realize that Down syndrome and Alzheimer's eventually go hand-in-hand. But, where was Matt on this intrepid trail? I didn't know which doctor to approach with the questions I didn't yet know to ask.
I have come to learn that Alzheimer's Disease looks the same in everyone who has it, while, at the same time it looks different. I have read everything I can find to learn about what lies ahead. And it scares me. When I read about someone's parent saying, "I don't belong here. I don't belong anywhere," my heart breaks. If Matt ever has those thoughts, he won't be able to tell us.
Wow! Those words were written in January. They were a second attempt to create another blog entry and for some reason, I just couldn't complete it. I was going through a period of processing what I had been discovering...and spending way too much of my time in the future. I was visualizing the difficult life that is ahead for my beloved son. It reminds me of those early years when I first learned that Matt had Down syndrome. Every thought seemed to be filled with sadness and fear.
And, as it happened when Matt was young, I have bounced back with more resolve to continue to create a happy, healthy life for the person who enriched my life beyond any measure. In the days and months since those incomplete attempts to write, I have continued to read everything I can find that will help me support Matt in a dementia capable environment. I have focused on Matt as he is now and made a promise to him that I will never give up, I will never stop advocating for the best life he can have.
Shortly after the switch to daylight time, Sandie and Kandie reported to me several serious incidents. During those times, he was self-injurious, and charged at the ladies. It appeared we were all in for a repeat of the painful period he had last spring and summer. Only, we couldn't let that happen...to him or his capable, caring and loving staff. Fortunately, I had an opportunity to attend an incredible two-day training with Joe and Matt's Behavior Analyst, Tera. We learned even more strategies to support Matt and we are hopeful that we can put things in place that will help him stay calm, help him remember daily living skills he worked extremely hard to learn, and help him enjoy his life.
Yesterday I met with his incredible team. We also were gifted with the participation of two fine, young men who are Dementia Care Coordinators for people with intellectual and developmental disabilities. Drew and Ben conducted a home assessment to help us find places that we can adapt or make simple changes to create a safe, environment for Matt as he travels this Alzheimer's path. As the Alzheimer's progresses, Matt will need more support. Currently, we are struggling with the Agency for Persons with Disabilities, the entity that provides Medicaid Home and Community Based waiver funds. Matt has had an increase in doctor visits and we have been successful in getting additional hours for the staff who accompanies him to those appointments. He has a need for additional supports so that he can be engaged in some activity during the day. Without that support he chooses to just sit in his chair and watch a movie over and over. We have learned that for optimal brain functioning he needs hydration and movement. In addition, he needs those hours so that Sandie can have a break from the care that is continuing to intensify. Research shows that respite for care givers is essential to a safe and healthy outcome for a person with Alzheimer's.
Unfortunately, the state doesn't yet understand this. Matt is also needing more support time from his Behavior Analyst. She has a pretty intense behavior plan in place; previously we were attempting to reshape his behavior and now we are focusing on helping him maintain skills and communication that will lessen frustration, anxiety and depression. As his condition worsens and he loses more memory, it will be necessary to provide more visual cues for him. It is Tera's job to develop those picture cards and train all of the staff who work with Matt on how to use the cues and support him most effectively. We have been denied an increase in the behavior services and I know it is because the state does not fully understand the connection between Alzheimer's and Down syndrome and how it is definitely a medical issue. Every aspect of Alzheimer's is related to brain function that touches on every system in Matt's body. If that isn't a medical issue, I don't know what would be.
So our team met, we discussed strategies we can put in place now, ideas for the near future and touched on what we will do as the Alzheimer's diminishes Matt's abilities even more.
And, I have had some personally fulfilling moments, as well. I have mentioned the National Task Group (NTG) on Intellectual Disabilities and Dementia previously. This very dedicated group of professionals is a part of the American Academy of Developmental Medicine and Dentistry. The NTG works to ensure that people with Intellectual Disabilities are included as part of the National Plan to Address Alzheimer's Disease. The NTG is the group that my mentor, Tom Buckley has been working tirelessly with and where much of my "schooling" has come from. The training that we attended was developed and presented by this group, as well. Following the training, I decided it was time to join them. I am hopeful that by the end of June I will become a certified trainer of this curriculum. The day after I completed my membership application, I received a call from Dr. Seth Keller, co-chair of the NTG. One of their work groups is focused on advocacy and caregiver support and he wanted to know if I would be interested in joining a conference call of a core group of people interested in this area. Would I? Oh my yes! My entire professional life was devoted to supporting families as they navigated the world of disability and I am immensely excited to pick up the torch of advocacy and support once again.
Just a couple of days before I joined the NTG, I created a closed group Facebook page for caregiver support. It is called Down syndrome & Alzheimer's Dementia Capable Support. It is my hope that this will be a forum where those who are providing care to persons with Down syndrome and Alzheimer's will feel safe to share their feelings, ask questions and provide support to each other. Check it out and if you would like to join the discussion, request membership in the group. I am checking the profiles of people before I accept them in the group; it's the only way I know to make sure we aren't getting trolls or unsavory types.
So that brings you up to date on our travels down the Alzheimer's highway. In future blogs I will share with you some of the excellent strategies and great information the NTG has created.
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