Welcome to this ‘home’. It’s a place to take a deep breath, find resources and hope, and have company on the journey with Alzheimer’s.
Please settle in this chair, put your feet up, wrap an afghan blanket around you like your grandmother made, have a virtual cup of tea…
and have hope.
Tryn Rose Seley
trynrose@gmail.com
You, the caregiver, are the Story Starter. When you start the conversation, you get things rolling.
via Alzheimer's Story Starters – Android.
Androidians, download this free App! It gives you something great to talk about when you need it. Let me know how it goes.
iPhonians, take heart. It will be ready for you soon.
I read a question from a caregiver, asking about family visits to a care community. I learned as a Life Enrichment Coordinator to invite families to share stories about their husband, sister, or friend so we could know, appreciate and learn to love that person as much as they did. Families brought in quilts she made, medals of honor he earned, pictures of treasured cars or doll collections or rose gardens.
This is how it affected all of us:
1) It brought the wonderful life stories back to life, right then and there, and gave us something to talk about. When the listeners heard one story, they added their own stories to the conversation.
2) It gave the family caregiver a way to celebrate his or her family member, renewing feelings of pride and joy about their loved one.
3) It spruced up a regular day, and made it extraordinary.
We all have stories to tell. If we tell them, it can generate life for all who are there to hear them. Create a featured presentation, any day you need one.
My friend in Colorado, an oral historian, shared this with me: her husband went to a storytelling workshop when their son was young. The leader’s advice was, tell the stories now, no matter how young a kid is. My friend agrees, they followed this advice, and is also very glad her grandparents kept telling their stories as she grew up. Now she can write them down and pass them on to future generations.
May we all do the same, for the benefit of your own heart, the heart of the one you care for, and those who join you in care. Type up the best stories, or hand-write them, and leave them on the coffee table, the refrigerator, the dining room table, for all to tell, and to enjoy.
Caregivers can feel guilty that their family member or friend can’t golf 18 holes, or garden the back 40 anymore.
Don’t let guilt stop the creativity.
Go to the restaurant at the club and tell the best golfing stories you have. Bring a bowl of tomatoes onto the screened-in porch, or the dining room table. Notice, adjust, and explore.
Once a group of men who played golf together for years noticed one friend fading energetically. Eventually he received the diagnosis of Alzheimer’s. His friends adjusted. They played 10 holes, then 5, and ended up on the bench, swinging clubs, describing the holes-in-one stories. Beautiful.
A friend of mine brought her mother into the kitchen while she prepared supper, bringing in fresh vegetables from the garden. She sometimes put on The Cooking Channel. By the time they served up at the table, her mom believed she had made supper herself. Let her believe.
Let your creativity get the better of you. Give yourself the widest possibilities for delight today. If you need to, pop over to the grocer’s and buy some tomatoes to go with the gardening stories. They’ll taste just as good, and the story from long ago will come to life today.
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.
I am very excited to share “15 Minutes of Fame” with you. It’s a guide that empowers you to know what to do for a family member or friend with Alzheimer’s or a related dementia.
You can download the PDF, which is viewable on any computer or device, by clicking the above “Add to Cart” button. For those of you who prefer Amazon Kindle versions, Click Here.
These strategies work for me, and I look forward to hearing how these strategies work for you. Please share them at: care@caregiverheart.com
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.
Happy Holidays – DivineCaroline.
Thanks DivineCaroline for sharing my post about the holidays. They can be simpler and more satisfying for any of us, particularly when you’re a caregiver.
What is Sundowning? If you have heard someone say, “They’re a sundowner,”or talk about “sundowner syndrome,” this means the person with dementia is prone to a state of stress that can come over them, often in the early afternoon or into the evening. It often involves pacing, getting locked in a loop of concern about a particular topic, and can last for hours.
I have a story to share about working with this state of being.
As a Life Enrichment coordinator at a care community, I and others observed a woman who, every day at about 2:00, started to stir with anxiety. She paced the halls, and I thought she might be pacing because she was anxious, and wondered if I could discover something that could alleviate that anxiety in some way. When I walked with her, and listened, she said, “When are the children coming home? I have to prepare their supper, and I don’t know where the kitchen is..Do we have enough groceries? I don’t have a car..I’m in charge of supper, but how can I cook if I don’t even know where the kitchen is?..”
So I learned to find her at 1:30-before the stressful state began-and offer her a cup of tea, a visit, ask her about her children, walk in the garden with her. We did any or all of these activities, and one of them almost always worked to bring more contentment and reassurance, and less anxiety. Sometimes I would address her concerns directly and help her resolve her thoughts, for example by sharing that ”the chef will be making a wonderful meal, and that if your children are here, they’re invited to eat with us.”
The effects for her and for others:
1) She was less stressed, less lost, more comfortable with something enjoyable to do (conversation, physical activity).
2) She felt reassured that she was not neglecting her responsibilities.
3) We the caregivers had more success, both by creating enjoyable time with her, and having less concern about her well-being, because she was happier, more settled in her day.
Sometimes she just needed to walk and ponder things, and could sit and listen to music briefly, or sample the homemade desserts others created.
I recently read an article about dementia that said “You can’t change Sundowning.” I say you can. I and other caregivers did change the dynamic for a stressed person. We gave people connection when they needed it, rather than leaving them to float and wonder. Do this for your own sake and for hers.
Be gentle with yourself and your expectations around holidays, which are challenging for anyone. Plan with care, enjoy your family and friends, and adjust the schedule to suit a person’s energy. Don’t miss them, change them up.
Know that you can also *create* a holiday, any time you need one. A birthday when you need a celebration to lift the mood, Christmas in July…show the photos, sing the songs, tell the stories, and you’ve got a holiday.
Some further suggestions:
1) Have a party early in the day, when energy is best.
2) Create a quiet room for 1:1 visits, and film the rest of the festivities to re-play for days, months, and years to come.
3) Leave a journal for family and friends to write memories of this gathering, or ones from the past, to read aloud in March, or August, or any time you need a good story.
4) Set the clock to Midnight at 6pm on New Year’s Day, sing, celebrate, and go home early!
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.
