Families need to understand how to be with their loved ones.
We MUST give families the knowledge and tools they need to understand how to communicate, understand behaviors, grasp the emotional side of caring, self-care, body mechanics and other techniques so that all involved may have a BETTER QUALITY OF LIFE.
We completely agree that families need
- to be socially connected
- ways to sing, dance and be creative with their loved ones.
- local resources
- help with clinical care such as appointments, treatments and medications.
- tools to assist the early diagnosed person with being independent.
- and so much more.
YET, if families have these things but don't understand how to really BE with their loved one, their frustration, depression, exhaustion will wear them down.
We need to do THIS first.
Let's build a strong FOUNDATION for CARE
Being in the Moment will give a strong foundation and then we will help get the walls up
and the floors and strong beams and posts.
This is what we are good at and know how to make the information that families need understandable, relatable and relevant.
Then we will be happy to steer families to vetted resources to help them with the rest of the caregiving home; all the other pieces that are important to be a healthy caregiver.
In the Moment (a 501c3 non profit) was founded by Karen Stobbe, a caregiver for both of her parents; Manfred and Virginia.
Manfred passed away from Alzheimer’s in October of 2000. Virginia was diagnosed a year and a half later. This changed the course of Karen’s life from a theater trajectory to an Alzheimer’s path.
For more than twenty years, Karen has been fortunate to work and learn from many of the top dementia experts in the country. They all agree that the most pressing need in Elder care for families as well as professionals is relatable, real life, training in person-centered dementia care.
Families need to understand how to be with their loved ones. And a way they can share the information with everyone in their family and those who are on the care team. It needs to be free and accessible.
There are ways to communicate with those with dementia. Ways to see actions and reactions (behaviors) as a form of communication. What at first looks like disconnection in context is seen as an expression of needs. This point of view can be taught and it makes life better.
Being in the Moment is a project of the non profit In the Moment. It will be an online FREE portal that will be the home for solutions to issues caregivers see everyday. Being in the Moment will help caregivers adapt to make life easier for everyone involved. These videos will be layered in their information. Although one video may be about understanding why Mom does not want to take a bath or shower, it will also show correct body mechanics, a correct way to cue a person, how to read non-verbal communication and how to speak with a person living with dementia. Think of an onion with all the layers or even better like my Mom dressed me for winter, sooooo many layers!
We know that being able to actually SEE something instead of just reading or hearing about it allows for the information to be easier to understand and share with all members of the family.
Being in the Moment will also be a home for:
- PDF’s you’ll want to share
- Videos how to move and lift correctly. It’s constantly overlooked.
- A focus on the and emotional state of caregiving how others have navigated these changes
- Meditation and Inspiration
- The Grandchild’s point of view
- Fellow caregivers, care partners and persons living with dementia. Sharing what they know.
- A question forum that will supply answers from an experienced family caregiver and national speakers on the topic of dementia, with an advisory group providing answers and perspective too.
Here is The How of the manner in which we will present the information on the site:
and here is The What of the type of information we will be starting with on the website
(NEW INFO) Speaking of questions & answers, here are 4 we have received offline or in the Open Ideo world that may be of interest to you.
1. Why is this Idea important?
This is foundational. Think of this information like the foundation of a home. We can build a house with rooms of wonderful communication activities, engaging things to do and apps to see or speak or find one another. YET if we don't SUPPORT those rooms with a strong foundation of education through person centered information then the rooms will not be as useful. We MUST help families understand how to communicate or why a person may be behaving in a certain way and what we can do to change, what are body mechanics and so much more. Let's build a strong foundation.
2. What makes this unique from other programs? trainings?
It will be FREE.
It will be person-centered in the utmost way. We are sticklers for looking at the person not the task or the disease. We believe we are just like persons living with dementia they are just seeing and experiencing the world in a different way.
The videos will be done by actors in a home setting and will not just show how to approach situation in a different way but the why behind "behavior" or actions and reactions.
The Director of the project is a Family Caregiver.
We do not want to be EVERYTHING for Families. We want to be a place for learning and inspiration.
We will have the opportunity to grow. Add in videos in different languages or answering cultural questions. Add in a way to feature Adult Day or Respite or Home Health Programs that have been vetted by In the Moment. To add in community resources in each state. BUT First education.
3. What makes you qualified to decide and write the content of the videos?
The Chief Purpose Officer has been a family caregiver for over 20 years to both of her parents. Her Mom Virginia lived with her and her family for over 10 years.
She was also one 1 of 2 Subject Matter Experts, content developer and writer and scriptwriter for the only dementia training produced by CMS and sent free to every nursing home in the country. The Hand in Hand Toolkit.
We also have a strong Board of Directors with dementia background and an amazing Advisory Panel from all facets of healthcare.
4. What are the topics you will start with and how will you decide what's next?
I have been traveling the country speaking to those who work where our Elders live and those who are family members and friends. Sometimes when I present to only families I ask them if they have any questions - I know when I started caregiving I had lots of questions and it was hard to find straight honest answers. I have been keeping track of the questions from families in Susanville, CA to Birmingham, AL to Asheville, NC.
Here are some of the top questions from families.
1. What's the difference between dementia and Alzheimer's?
2. Why do I need to get a diagnosis of what type of dementia?
3. What makes my loved one seem to spike in their symptoms?
4. Why do they seem so sad/angry/frustrated/etc?
5. Why won't he/she do anything - he/she just sits there?
6. Why do they keep repeating over and over?
7. I can't get him/her to shower/bathe. What do I do?
8. When do they get to the agitated stage?
9. What are the stages?
10. She/He won't listen to anything I say. What do I do?
11. My loved one is now non-verbal how do I communicate?
12. I don't know what to do with my Mom when I go visit her.
13. How do I get her to take her meds?
14. Why is she so frustrated all the time?
15. I need help what do I do?
16. Why is she/he doing XYZ?
One thing that is for sure is that we have a tendency to put band-aids on situations instead of finding out they why behind it. . There are answers. Families must be able to communicate and understand behaviors before they can do anything else. And that is what I am going to strive to do. Help families and friends of persons living with dementia to have more tools and understanding to hopefully keep their loved one at home longer and for everyone involved to have a better quality of life.
Being in the Moment wants to give families and friends the information that they would receive if they were able to attend dementia training courses, but in their home. Caregivers need information that is easy to navigate, easy to obtain, and easy to understand.
In the Moment has a background in theater and improvisation and use those skills in our work and life with persons living with dementia. The guidelines are parallel such as; Say Yes And, Step into Their World, Go with the flow, Listen Fully, etc…
We also will be making sure to use person-centered language and uphold the dignity of the person living with dementia. Nothing will show the person living with dementia as childish or in a poor light. We will present an unspoken respect and honor at all times.
We are focusing online because we know more people will be able to access and share the information in this way. We want to reach those unreachable families who are in very rural areas, who are isolated because of the caregiving rigors or who are forgotten because of lack of family and assistance. In order for the broadest possible reach the mobile version of the site will on par with the desktop version.
The BeingintheMoment.org portal will use an Agile Methodology approach.
In the software world: Agile is an iterative approach to software delivery that builds software incrementally from the start of the project, instead of trying to deliver it all at once near the end.
We will build the portal due to caregiver demand and listen to them as they give us feedback and requests from more information. We don’t see an end to the information. It will be a living site, always shifting and adding new information.
In using the agile method we will continually get feedback from caregivers, make sure we are meeting people’s needs, create even more innovative material, and keep getting better.