Archive for the ‘Caregivers’ Category
New Article Published in National Alzheimer’s Magazine
See p. 20 for article on Working Caregivers, Balance and Self Care tips
http://www.afacareadvantage.org/issues/ca_fall10.pdf
A Message to Caregivers from a Young Woman with Dementia
Please read this letter by a young woman with early onset dementia who could not be present for a keynote at a caregiver recognition ceremony we in the Missouri Adult Day Services Association coordinated a number of years ago.
It is meant for the caregivers of persons with dementia. Clearly, she is an eloquent woman, who at too young an age, is facing dementia with strength and energy, and playing a leadership role with the Dementia Advocacy Support Network International, in helping express the interests and concerns of those afflicted with memory impairing conditions.
I have her permission to share this with you. You can share this, with acknowledgment of the writer, with your colleagues and family caregivers.
No Place Like It
It is a privilege to be able to speak to you on behalf of an international group of people who have dementia, the Dementia Advocacy and Support Network International. Because of our early diagnoses and of the improvement the new cognitive drugs have given us, we consider ourselves to be among the fortunate few who are still able to speak on behalf of others with dementia who no longer can. On behalf of people with dementia in the United States, Canada, Australia, New Zealand, France, England and Brazil, please let me tell you what dementia is like and therefore, how much we appreciate you, our personal caregivers.
Those of us who have dementia have experiences much like Dorothy’s in the Wizard of Oz. You remember Dorothy? A tornado came up in Kansas and scattered everything at Auntie Em’s farm. It blew poor Dorothy and her dog, Toto, all the way to Oz. In Oz, everything was different. Witches and Munchkins lived there. Flowers glittered strange ways, and the apple tree griped when she tried to pick an apple. The bewildered Dorothy confided in Toto. She lamented, “We’re not in Kansas anymore.”
As she struggled to understand her much-changed world, Dorothy became desperately Homesick for the familiar old Kansas farm and her familiar, loving Auntie Em’. She missed them so! Dorothy’s only goal became to find her way Home.
Dementia is like that. Those of us who have dementia are different. The world is different. People relate to us differently. We feel scared and very much alone. Whatever frustrations our former lives held, at least they were familiar. Like Dorothy, we — desperately — want to go Home. At Home, we knew our way. At Home we held valuable jobs. At Home we had friends. At Home we had families. We want to go Home. But how to get there?
We also need a yellow brick road. And maybe that is why we wander. We wander and rummage and hoard whatever we find that reminds us of home. We can’t find the yellow brick road, and we can’t find the ruby slippers to travel it.
Dorothy discovered that she had always had within herself the brains, the heart and the courage to get home. We don’t. In fact, if you could only see how shrunken and shriveled our brains have become and how much we despair, you would be very proud of us for having the courage to carry on at all. We know we will not get better, but we do carry on, and mostly because of you.
You see, you are our scarecrow, our tin man, and our lion. You lead us along our way. More than that, you are our Yellow Brick Road; you are our Ruby Slippers; and you are our Wizard who leads us so very close to our Home.
We are aware of how much your world has changed as well. We are aware of the pain we have caused you. We know you miss us, and we would be different for you if only we could. We would give you back your life, your partner, your lover and your farm. We would set you free and give you all of Kansas. And we would work for the rest of our lives to fulfill your every dream. We will thank you eternally for your care and self-sacrifice. We love you as always – and more!
Carole Mulliken, VP
The Dementia Advocacy and Support Network International
Dementia Patients Find Comfort in Telling their Stories and More
I was heartened to read the article in a recent New York Times blog regarding the comfort and joy that can be experienced by persons with dementia. I know I have witnessed music, movement, reading and oral history recording as activities that can be developed for the improvement of mood for many people dealing with dementia.
Over the last 25 years, my work in adult day has proven to me, my staff and the clients that when properly prepared, staff can elicit powerful video or oral recordings of our clients’ histories, even those with dementia. The client with help from their families provide the names, places and other trigger words that can be helpful when eliciting stories.The preparation for this project is intense, but similarly is the joy experienced by the older adult both during the recording and after viewing the tape.
Studying the client’s social history, knowing their life story well enough to be able to trigger memories is core to the success of an oral history project with persons with dementia. We know that word-find ability is limited, so the oral history is created through the use of words that elicit colorful memories.
Born in Tennessee? Lived with parents on a small farm in Kansas? Milked cows by hand? Rode trains with uncle who was a porter on the Pacific train line?
Each of these are examples of trigger words or phrases that the interviewer knows will elicit a story or reminiscence. In adult day centers, an approach referred to as ‘person-centered care’ obligates the staff to know the stories and details of each client’s life so that our interactions with persons who have more difficulty managing the details of the present can be engaged. We help them reengage with their life stories. Recording oral histories is another way to bring joy to the person with dementia. It is also a powerful gift for families to cherish long after their loved one is no longer able to share their memories.
For more information, please contact me at 314-477-3144.
Caregiver Groups Starting
Focus on the Caregiver Group
- Do you have an aging parent/spouse with chronic, disabling conditions?
- Are you struggling with guilt, grief or anger?
- Are you feeling alone or misunderstood in your caregiving role?
Most support groups offer camaraderie, education, and community resource information. This group will advance to the next level by helping you develop and practice coping skills and identify the tools needed to reduce the emotional challenges you face as a caregiver.
The Focus on the Caregiver Group will:
- Take the support group model up a notch by addressing the emotional issues tied to your caregiving role
- Provide therapeutic interventions by licensed counselors in a small group setting
- Give you a safe setting to share your challenges with other caregivers
Location: Tempo Medical Building (across from TGI Friday’s)
12401 Olive Blvd, Creve Coeur, MO 63141
Cost: $100 for the four-week group
Day and time : to be determined by group members (days and evenings available)
Facilitators
Two counselors with over 25 years’ experience working with caregiver will facilitate this 4-session group.
Sylvia Nissenboim, LCSW, her career has focused on caregivers and families since 1982. She is also a published author and national trainer/consultant.
Nancy Mesey, PLPC, 25 years’ experience facilitating caregiver and related groups. Specializations in Gerontology and Chemical Dependency
Call 314-477-3144 today to register, or send email to Sylvia@sylvainissenboim.com.
Caregivers: Maintain Your OWN Well-Being
It is well- known in the field of aging, that too often, caregivers of persons with Dementia, Alzheimer’s, Stroke, Parkinson’s Disease, for example, overlook their own health and wellness while taking on the care of a family member. “You can’t take care of others if you don’t take care of yourself” is a common reminder that you will burn out if you don’t improve your life balance, and expand your supports and resources, so you are able to continue for the duration.
A simple to question to answer:
Are you being driven by your caregiving responsibilities, or are you at the wheel??
- “There’s nothing I can do about it….”
- “It’s just the way it is…”
- “I have no time for my own needs…..”
If these sound like your response to that question, its time to get back in the driver’s seat!!
Have you overlooked increasing the following activities, which will help you maintain your health and strength for the long run?
- Exercise
- Nutrition
- Sleep
- Friends, social support
- Enjoyable activity
- Family cooperation and collaboration
- Updated resource information
Getting a handle on these areas will help you maintain your own health, and sense of balance and well-being.
Coaching to improve YOUR health and wellness while caring for an older family member is critical if you want to be the best you can be.
Telephonic coaching is a great way to start because it doesn’t require leaving the house to start taking care of your own well-being!!
