When the Mind Goes Blank

Today, May 8th is a day that is sandwiched between two anniversaries. Yesterday, May 7th would have been my grandparent’s 72nd anniversary. Tomorrow, May 9th is my parent’s 31st anniversary. For my entire life, it has been a time of celebrations and family. It is a time when stories that reflect the past come up yet it has not always been a time when questions were asked. Now that my grandparents are gone, as well as many that would have attended their wedding back in 1946, some of the stories are gone, and questions come up sometimes daily that are left unanswered. I think of my parents, still alive and well with years left to live yet my mind draws a blank on the questions I want to ask, and about the stories I want to hear. We can learn so much from our families past, yet how can we learn when we can no longer hear the stories, or think of the questions to ask? There is knowledge out there to be gained, floating somewhere in the abyss. The same is true for my other set of grandparents who the past January would have been married 56 years. I want to know, but where do I start? 

This cycle of thought reminded me of what we might need to help families when they are caring for a loved one. Speaking from experience, as dementia progresses the questions surface and you wish had months or even years left to ask those questions. We want to remain connected to our loved ones until they no longer are with us. By knowing their story in color and detail we can not only better provide for and understand what they might want or need, but we can feel whole when the loss comes. In this meandering of thoughts this day, I took time to take a step back and come up with questions you might want to ask your loved ones no matter how old, no matter their current state of health. From the joyful to the serious, to the playful, to the sad, let us work to learn the story of those closest to us.

1. Where did the two of you meet? (When talking to your mom or dad)

2. What was a song you loved to dance to or sing along to together?

3. What was your greatest struggle when you were young?

4. What was your greatest triumph growing up?

5. What is your favorite month of the year?

6. Where would you have loved to live? Visit?

7. What was/is your favorite hobby?

8. What was one struggle you had with your parents?

9. What is your favorite moment spent with your parents?

10. What is your greatest fear?

11. What brings you the most joy?

12. What was a favorite game you played or toy you had when you were little?

13. What was your school experience like for you?

14. What were your feelings on your wedding day?

15. Did you ever have any pets?

16. If you could get a pet today, what would it be and what name would you give your new pet?

17. Where were you baptized?

18. What were your grandparents like and did you spend a lot of time with them?

19. What is your favorite flower?

20. What do your dream for your life tomorrow? 

Hopefully, this gets the gears in your mind turning during your next family gathering and opens up your time together to the sharing of great and meaningful stories.

Note: As I was about to hit publish on this post I thought I would do some digging to see what else is out there. I found this list that has 150 questions you should ask your family members, and this Over Share card set that I remember hearing about from Mindy Bolton of Playscriptions. Both of these options offer more of the silly and serious. 

True Experts

This week I want to highlight Brian Kursonis as this our True Expert. He is the founder of Faith2care. I first learned about him via a DemenitaRaw FacebookLive interview which you can watch via the link below.

Join me in learning more from Brian Kursonis.

 

 

Read More about Brian: https://www.withalzmyheart.com/about.html

DemenitaRAW interview: https://www.youtube.com/watch?v=dcNGQgw7Nec

Let Us Run…or Walk

May we no longer run away, but rush towards those who are diagnosed with dementia and their loved ones.

The story is common, someone, a friend or family member, is diagnosed with dementia but instead of the community rushing towards them, starting GoFund Me pages, and becoming advocates for dementia, they scatter, leaving the person with the diagnosis and their closest family alone, feeling another loss they can add to this journey. Why is this? I suspect that, unlike cancer, other illnesses and diagnoses, dementia has a terrifying stigma. We fear the journey, misunderstand the disease, research is confusing and at times conflicting. It causes us to come face to face with the mortality and fragility both of mind and body, forcing us to admit that our loved ones, and even ourselves, are mortal. For those of us who boldly face dementia, our mission is to provide the best care and life for those who live with the disease. This somedays can take all that we have in us, leaving little room for anything else, much less trying to build friendship and community. That is where those of us who are not currently caregivers or have a vocation to support those living with dementia can come and tap you out, if not in direct care, in education, and in advocacy. We can “hold the bucket” and allow you to do what you need to do in order to be your best self, in care and in life. We are here saying, “May we be a member of your community?”

Our job as individuals working with dementia and having lived through it in some form is to make ourselves known to speak up and let others know we are here. Let all of us, who have lived with dementia help bring back family, friendships, and community where we can, and be present in place of those whom you have left your side because of dementia. This journey may be about loss, but it can also be about growth. May the shared stories of dementia continue, and may we all create joyful connections where gaps are found.

The True Experts

If I am honest, everything I know about dementia I know from the science/medical perspective. If I am honest, everything I know about dementia is an interpretation of what has been shared with me by someone who has dementia. If I am honest, everything I know about dementia I know from what I wish I knew when my grandmother was first diagnosed.
If we are honest, we only know second-hand stories of dementia. That does not diminish the medical understanding, the continued research, or our caregiver experience, but it reminds us that we must listen to those with dementia; to hear their wishes, their needs, their sorrows, and their joys. Each time I read a blog post, hear a podcast or watch someone with dementia give a presentation, I am humbled by their stories. I am reminded that while I may be knowledgeable, and seen as an “expert” they are the true experts. They are the individuals that call us out when we waver and teach us each day what living with dementia really means. This month I have focused on sharing with others the programs and resources I follow, facilitate, and use, but starting on Monday I want to also introduce to you individuals with dementia, those in the public eye. They are the experts that make us all better care partners, better family members, community members, and better individuals. May we all learn from them, to see and hear them. To make sure that they are the always included in our work.

To Change the Landscape

I have always been interested in the connection between emotional memory and a theatre experience. Why can it at times tap into a part of oneself more than music? Yes, I dared to share that, MORE than music. My parents first took me to the theatre when I was 3 years old to see Rodgers and Hammerstein’s Cinderella. By all logical means, I should not remember this experience the way that I do, but it tapped into my emotional memory that was then built upon by every experience that occurred after that moment. Now you could argue that music played a large part in this as I saw mostly musicals, but I don’t think it was the music alone that did it or the rhythmic dance of dialogue. I saw my first movie in the theater I was 4, one year older, yet I have no memory of the experience, and music was involved as it was Disney’s Aladdin. Somehow A Whole New World didn’t stick, by In My Own Little Corner did. It was this particular form of storytelling, theatre, that found a way into my emotional memory.
As my interest and work in dementia progress, I become more curious about how theatre and dementia can work together. That same emotional memory that pushes forward my experience when I was 3, is that same emotional memory that helps us connect with loved ones with dementia, helps us become relational with them, that same memory that is untouched by the disease. All of the arts have the potential to use emotional memory to help someone living with dementia live well, and music and dance are getting a lot of attention right now in the field for this very reason (and rightfully so!) however, how can we best use theatre and theatre storytelling techniques to tap into the emotional memory to create valuable life enrichment programming? How can we use it to create an educational tool for children to teach them about dementia? How can we use it to teach others to become relational with dementia, and to not fear dementia which further engrains the stigma and doom and gloom narrative that has existed for decades?
As I have stated before, the arts have the greatest potential to shift the negative view of dementia. We listen to stories, to music, and view art, and while theatre is maybe not the strongest (read: most popular) player in the bunch it is one of the most versatile. Through the creation, exploration, and participation (passively or actively) in theatre, we can create training and workshops that can have a long-lasting impact on caregivers, children, and students who will potentially enter the field of aging. By engaging in a wide array of storytelling approaches we can become relational with those living with dementia, changing the landscape. With arts-based research and a larger emphasis on creative engagement and artful aging, I hope to see more imaginative processes blossom in the field of aging and dementia, in how we care for, in how we educate, and in how we support those living with this disease.

Communication to Become Relational

Even for the most introverted amongst us, we desire connection to another human being. It is through this connection that we learn about who the person is before us. We see and learn about what brings this person joy and what brings them pain. We find an emotional level to connect to find a common space that we carry with us through our time together and apart. To do this we must become relational, but to become relational, we must learn how to communicate.

I am pleased to announce that I am now a Certified Dementia Communication Specialist. This certification is through the Silver Dawn Training Institute of DementiaRAW. I recommend anyone who works with dementia and in a care community become a CDCS. It is an invaluable training for all who wish to become relational with those they care for each and every day.

Click this link to start your journey to become a CDCS: https://www.cdcsdementiaraw.com

An Introvert in a Care Community

This afternoon it was brought to mind how extroverted our care communities are by design. As an introvert, I have been able to recognize the different personalities of others I encounter and adjust to their needs, but not all recognize the differences or that a blanket statement about what the community’s needs might be is an inaccurate approach.

As a former Life Enrichment Specialist who worked in several communities, this was one thing that always bothered me, and I worked to encourage the expansion of our offerings. It ultimately was more like trying to mold a block of stone instead of a ball of clay. We see the obsession our society has with Myers Briggs, the Enneagram and the many personally tests created for both meaningless fun and scientific research, but we don’t do anything about what they tell us. We obsessively take these test to find out that I am an INFJ, I think I was a 4, 2, 9, on my enneagram, I am more of an Jane Bennet more than an Elizabeth Bennet, and my “real” age is 56. None of this matters unless we know how to sift through this information, to understand what is fun and what is real, to understand how this information informs our interactions and needs. I am not a fan of these tests for that very reason. We take them, we see the results but it does not change things on the larger scale or long term. It becomes a crutch, an excuse to not truly get to take the time to know someone, yet we don’t know what that crutch is saying. It is much better to realize that we will come across many different types of personalities in care. This should encourage us to truly see, hear, and understand the person in front of us and decipher how we can best serve this individual without a personality label. With that said, we like to put people in columns, to label, and to organize because it makes life easier, maybe more predictable, and fills a desire for order in chaos.

Just as our educational system and our world at large are designed for the extrovert, so too are our care communities. Music can be loud, people come towards us and pick up our hands and move them around while we sit in the wheelchair and they dance. Games are played as large groups and at times get rowdy. Meals are served in a packed dining room. Funny hats are put on us and we are put in the spotlight. And we don’t speak up about any of this because we know your job is hard at times, that there are not enough staff on duty at times, and we don’t want to hurt your feelings. These activities and way of life can be great fun and pure life enrichment for those who thrive off of others and spending time in social environments. For the introverts, this is not fun, but draining, uncomfortable, maybe even brings feelings of embarrassment and feels demeaning. The individuals that are introvert may not participate in bingo, music programs, and may not often speak with others at dinner because they are drained, their needs for time in quiet, spent by themselves, are not met. Unfortunately, they are quickly labeled as problematic, uncooperative, or in weaker (poor) health than they really are because our care communities are designed for the extroverts amongst us to excel, thrive, and live.  They, in addition to being labeled, are frequently ignored by staff when making the rounds inviting the residents to programs, or they are thrown coloring pages and iPods, then it is recorded that staff provided art therapy, music therapy, and life enrichment to these individuals. In addition to this not being art or music therapy as it is formally developed, this is also not life enrichment. We cannot change our care system overnight, but we can change the lives of the introverts in our communities starting this moment.

How? Well, here are some ideas:

1. Get to know this person as an individual, not as a chart, as a label other staff have given them, or as the form their family might have filled out upon moving into the community. DementiaRAW has a wonderful form call, My Soul Purpose, that can start this conversation. I have linked to their name. I also have one that I will upload soon.

2. Coloring pages and iPods are good, but make sure the person likes to color, likes listing to music and having headphones stuck in/on their ears.

3. If they like pets, make sure the community’s cat or dog comes for a visit. If a therapy dog comes with a volunteer, make sure they visit this person.

4. Schedule time for you, yourself, to visit, just you and that person. Or you can set it up for two or three residents that get along to sit with each other, talk, watch a movie, listen to music, play a game, do something they will enjoy together that is low key, calm, and re-energizing for introverted individuals.

5. Be okay with them sitting in their room or apartment and/or not talking to anyone at meal times.

6. Even if they turn you down every time, always invite them to each and every program. And if they do say, “Yes!” to joining you, allow them to determine the level of participation. Be okay with them sitting and watching all that is going on without active participation. Be okay if they don’t want to dance or sing along. Be okay if they leave early or come late. Don’t put them in the spotlight, allow them to walk into the spotlight.

7. Invite them to compose the thank you, birthday, and celebratory notes you might send to staff, residents, families, and volunteers.

8. Don’t be afraid to engage in conversation with them, but don’t be offended if they don’t participate the way you wish they would. Ask them questions, but be okay with one-word answers. Ask them if they need help, but be okay with being ignored. Follow their lead. Make sure they know that you care about who they are and are here if they need/want you.

9. If they appear to want to get involved and help, find ways for them to help out with something, from the typical folding of napkins to waiting to turn off the DVD player and TV after the community movie has ended. These are not the greatest examples, but listen to how they want to help and be apart of the community, then find ways that are safe for them to do so.

10. When you approach them, match how they interact with you. Don’t barge into their room, but knock, ask if you may enter, speak calmly, speak cheerfully (just not cheerleader cheerful!)

This list only scratches the surface and will need to be revised for each person you interact with, but if you can remember the following you will be successful in care.

Introverts gain their strength in the quiet solitude, in their time alone often cut off from the outside world. They lose energy through participating in large social programs and spending time with others (especially extroverts.) Don’t label them, but see them. Socializing is crucial to living a full, vibrant, healthy life but make sure that what you are offering does not simply fill a quota or put into action the research you have read, but is catered to the individual, who they are and what they truly need and seek.

Living in a care community is not easy. I have yet to meet someone that is there by choice but are there because of doctor’s orders, family decisions, or they feel it is best but not what they want. This can be difficult for anyone as the life you worked to create for yourself is stripped away. Each and everyone of us will sort through this process in unique ways and sometimes, for introverts, when in this situation our batteries simply die faster than they might otherwise so be patient, know we are not wanting to be rude, cold, snobs, ungrateful, or any of the other labels that get pinned to our name. We care about you and seek for you to care about us.