To start, i would love to share a story about something that happened during one of our StoriesLoveMusic Events at an Alzheimer's unit of a Brooklyn Elder Residence. We had just played our song called Traveling and i was asking if someone thought about a special place and wanted to tell us about it? A man spoke up, that the song has made him feel loneliness. That he felt loneliness but he also felt it was still ok, it has beauty in it. And i thought to myself and then said out loud to him, that traveling does make us feel lonely sometimes, so i really understood what he meant.
This is a perfect example of something i am learning in my dementia care research. Remember to be flexible when you ask a question, as response may not be exactly what you asked about but who cares?! They are sharing something that is their truth and very often holds a meaning that just as true.
The other care givers in my class are alot of fun to be around and have a great sense of HUMOR, which is VITAL in this work. The levity they and the teacher Nancy brings is great. The other day the women in the class got very excited planning a secret feast that we will all bring to graduation day. They are all from different countries and will bring a dish that represents their background! I am excited for this!
I learn so much in these classes and the other day something our teacher said blew my mind and helped me understand what dementia is like for someone. She said, "for someone with Dementia "The Other Room" does not exist. What? We learned that in certain moments and for those in later stages of dementia, that the moment, the here and now is all they see and "the other room next door" does not exist to them. That is why they don't remember what they did a few hours ago, SO when you ask about something that is not right in front of them right now, you may get an answer that does not make sense to you. You know the way we must suspend disbelief to watch certain theater pieces or films? If you can do this, and stay POSITIVE, BE PLAYFUL, HAVE EMPATHY, HAVE HUMOR, and most of all just ACKNOWLEDGE them, they will feel seen and heard and will share what is happening for them and not feel scared that they should share something LINEAR that makes sense to you. When you are scared or worried they feel it, they know.
Thanks for reading and always leave me a comment or question, love to hear from you. ~Ilyana
After the 2nd class of Dementia care training for care givers, i see what my main goal in here is. Not just to create my StoriesLoveMusic program, but to really wrap my head with compassion for what is really happening here. People you and i know and love, may lose their mind, their memories and sense of SELF. They will be AFRAID and they will need our understanding and love, NOT our fear and impatience. My focus as i learn, is about how i can improve the Art of communicating in this situation and how MUSIC, which for someone with Dementia is the LAST memory to leave, can spark their stories and understanding of how they FEEL. Sitting with professional care givers and knowing that when they understand the power in "telling" their story, it will impact their patience to listen to the person with Dementia and hear their story. That story may come out in bits and pieces, in a non-linear process but it's their story. SO i am learning in this course that with the person with Dementia you must: First and foremost: Bond, Talk and Move. Be in agreement, see them, hear them, understand what they are feeling, ask them questions that are simple and direct and allow them to move toward something they feel they need to move toward. Don't fight, don't try to strong arm them into submitting to your truth. Be there with them in what they are going through.
I chose to use this photograph again, the one from the march in Washington, to show the same need in Dementia and Alzheimer's community.
The need to feel SEEN and HEARD. Yesterday was my first day of training and research on those with Dementia and the amazing care givers who take care of them.
I will share what i learn here, as i know there are so many who are affected by this.
Why am i doing this research and training? I am creating a program that marries music and story telling for those with dementia and Alzheimer's and for those affected by it; their families and care givers.
The first day began with a quote from Willa Cather. "Where there is great love, there are always miracles". Could not be truer. I sat in a room with men and women who are professional care givers and are from around the globe. They come from places like: Ghana, Phillipines, Jamaica, Sardinia, Guatemala and so many more. Today was an ice breaker and introduction to the keys to working with those with Dementia. When you have a disorder that robs your memories, stories and eventually your sense of SELF; then the art of Communication becomes even more VITAL. The energy from my fellow classmates was amazing, they are giving loving attention and so much energy in VERY difficult scenarios. In coming blogs i will interview some of these men and women and share their stories.
"I fear i am not in my perfect mind" -King Lear.
The emotional imbalance, the sudden unfamiliarity of your surroundings and fear that it causes, can take the VOICE of a person with dementia and render it SILENT. Especially when they see that the family and care givers around them are ignoring or are made upset by what they are trying to EXPRESS. We learned that being able to tell something to someone and have their loving attention, gives the gift of connection and engagement.
My program will help with just that. Taking two things that have been such a HUGE part of my life MUSIC and Story telling, to enhance connection to the SELF and to those around you.
I will share more in my next blog. Thanks for reading and please share any stories and experiences you have had with Dementia and Alzheimer's in your life, here in the comment section, so others can share your experiences and concerns.
Executive Director of Stories Love Music, Singer, Story Teller, Coach and Activist.