Caregiver Heart

This spring, I drove to Tucson to direct a church choir for the weekend. I live in Phoenix, 2 hours away, and was starting to get used to the heavy truck traffic on Route 10. One truck barreled by me, close and threatening. My first reaction was, “Watch out! What are you doing?” Then as I traveled forward, I saw that the truck had moved out of a lane to avoid hitting another driver who’d had an accident. So my second reaction was, “What a careful, thoughtful driver.” It was a complete change of state for me, from feeling frustrated to feeling thankful, because I changed my perspective.

Sometimes I don’t know what motivates the actions of a person with Alzheimer’s. My first reaction might be, “Watch out! What are you doing?” But when I think about that someone as a person who is navigating the world with less ability to explain his or her actions, I realize it’s *my* turn to create a careful, thoughtful answer for that person’s actions. It’s a change of state for *me*, from feeling frustrated to feeling thankful for this person, staying active in life, doing his or her best to make choices about life.

Safety is a consideration, but often a person is just trying to figure out what’s happening today, and what he or she is supposed to be doing to engage in this day.

When I change my perspective, it expands my ability to give support to people, rather than acting from frustrated energy, or trying to change someone. the energy I bring to the day affects me, him or her, and those around us. I like creating the place in myself where I can give respectful, generous energy and attention to another. It benefits both of us.

Take care, and stay in touch,

Tryn Rose Seley,

[email protected]

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Jane Fonda: Life’s third act | Video on TED.com.

“Everything you have in life can be taken from you except one thing: your freedom to choose how you will respond to the situation. This is what determines the quality of the life we’ve lived, not whether we’ve been rich or poor, famous or unknown, healthy or suffering.” Victor Frankel, “Man’s Search for Meaning”

Jane Fonda says, in her third act of life, she is happier, more content, not declining but ascending, and implores our culture to appreciate those who are in their “third act” as vital and valuable people.

Take care, and stay in touch,

Tryn Rose Seley,

[email protected]

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The essential is this: if you tell a person his or her best stories of life, and make them available (written, photo-displayed, posted on the ‘puter), then everybody wins: 1) you the caregiver, because you have great stories on your mind and on your lips; 2) the person you care for, who might just surprise you with a story of his or her own; and 3) the people who join your circle of care, who now know how to start the conversation. Everybody wins.

Take care, and stay in touch,

Tryn Rose Seley,

[email protected]

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I taught an art class this spring. We started the session by singing patriotic songs (it was Memorial Day weekend). These participants of few words

sang every word of every song with love in their eyes

and told stories of brothers who came home from war

and more

and then they started to paint. They didn’t want to stop after an hour and a half. Their creative fire was ignited!

One I worked with said, “Wonderful..but we shouldn’t have it as an expectation that this (coming to life) will happen every time.” It struck me when it was said, and I realized that there’s a difference between ‘expectation’ and ‘mind frame’.

The difference is to not have an ‘expectation’ of the person with dementia, but to have a ‘mind frame’ that invites and allows his or her creativity to show up, to be expressed.

My mind frame of respect and regard for people allows me to create an environment of encouragement and excitement around these things. And I don’t expect a ‘thank you’, yet it’s given in the form of singing, the telling of life stories, the creating of a flurry of artworks.

When I believe people will sing, share, and create art, then I set the stage, open the door and invite them in. I’ve seen it happen every time, this emerging back into oneself, in one way or another. I ‘expect’ it because I welcome it; my ‘mind-frame’ is “Yes, creating this kind of time and place full of these experiences matters.”

It does me good, and it seems to do good for those around me. I’ll spend more of my life creating these experiences, without expectation, but with a mind frame that says “Why not? It’s a great way to spend time.” Provide the possibility of joy and connectedness, so it can find its way into your life, and the life of the one you care for.

Take care, and stay in touch,

Tryn Rose Seley,

[email protected]

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MVI_6248 from Tryn Rose on Vimeo.

Tryn Rose (Clark) Seley: Channel 3 News filmed “With Art in Mind” art class. Click on the purple link above to see the video.

I am privileged to spend this kind of time with people.

Music, stories, and arts engagement can bring people back to themselves. It also brings a caregiver to a place of regard and respect for a family member or friend. A wife said to me, “After art class, he is happier, for days.”

Even if you can’t see the effects outwardly for him or her, it has a positive effect on you to spend time this way. Please do.

Try this at home. Put out photos, song lyrics, life stories that remind you of your loved one’s strengths. This will remind them of their strengths. Provide colored pencils, or watercolor paints, and paper, and see what happens.

One husband said he makes sure he has a good supply of sticky notes in pretty shapes – hearts, apples, stars – so his wife, who used to do freehand drawings easily – has somewhere to start. She colors them in every day, wherever she finds them; on the dining room table, on the coffee table, wherever. It gives her joy to create art, and I thank her husband for recognizing the desire, and making it happen for her.

In my classes, I always provide blank greeting cards so we can add a quote, an original picture, or a black-and-white version of a photograph on printer paper that can be embellished as desired.

I am not teaching art. I am providing an opportunity for artistic expression. When we sing, and tell stories, we generate good energy to create art. It works every time. We come out smiling, happier, for days to come.

Take care, and stay in touch,

Tryn Rose Seley,

[email protected]

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I read a recent LA Times article about aggressive behavior that can sometimes happen for a person with dementia. Usually I’d share strategies that might soothe a struggling person. But I’m here today to say, please get help if you need help caring for a person who is frustrated, unpredictable, larger than you, upset and showing it. I advised a tiny woman in a class, “You don’t need more strategies, you need to be safe if you’re feeling threatened.”

Do not promise a family member or friend, “If you need extraordinary care, I’ll do it, and I’ll be the only one.” DO promise that “I’ll always be here for you,” and “I’ll find the best ways to support you.” This is an expanding promise you can keep.

Take care, and stay in touch,

Tryn Rose Seley,

[email protected]

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May this home provide a place for you to take a breath, to sit awhile, to know you’re doing the best you can as a caregiver, and know that you can create a spark of life in yourself and in the person you care for.

I don’t feel the need to add volumes of information to your world. I do feel the need to tell you that you already know what to do with your family member or friend who has Alzheimer’s or a related dementia. Please, tell your family member or friend their best stories, and write those stories down, frame them for the wall, leave them on the coffee table or the refrigerator or the bathroom mirror or the piano bench-for any and all to read who join your circle of care.

Human kindness, pluck and verve, humor and compassion; add these to the daily tasks of caregiving. Match her mood, catch that spark in her eye, fan the flame with the story that makes her laugh or cry or say, “That’s right! That’s who I am. Thank you for remembering my life for me!”

She may not be able to say it out loud; say it into your own ear, know that it’s true.

Doing this every day will change everything. Remember a person’s life, tell it out loud, and share it with everyone you know who will tell it too. This is the cure for Alzheimer’s.

Take care, and stay in touch,

Tryn Rose Seley,

[email protected]

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“When you remember me, it means that you have carried something of who I am with you, that I have left some mark of who I am on who you are. It means that you can summon me back to your mind even though countless years and miles may stand between us. It means that if we meet again, you will know me. It means that even after I die, you can still see my face and hear my voice and speak to me in your heart. For as long as you remember me, I am never entirely lost. When I’m feeling most ghost-like, it is your remembering me that helps remind me that I actually exist. When I’m feeling sad, it’s my consolation. When I’m feeling happy, its part of why I feel that way. If you forget me, one of the ways I remember who I am will be gone. If you forget, part of who I am will be gone. “Jesus, remember me when you come into your kingdom.” the good thief said from his cross Luke 23:42. There are perhaps no more human words in all of Scripture, no prayer we can pray so well. ” BJRuhe

via Faithful Moderates – Frederick Buechner.

Remember the best stories of his or her life. Live inside of them. Share them with all who join you in the circle of care. Then everybody gets a lift of spirit, the joy, the aha of celebration. Choose to spend your time here.

Take care, and stay in touch,

Tryn Rose Seley,

[email protected]

Purchase PDF version of 15 Minutes of Fame

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