Archive for the ‘Caregivers’ tag
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.
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!!
The 3 Hottest Red Flags to Note when Caring for an Older Family Member
If nothing else, spouses and/or their adult children of older adults should make note of these three most critical areas which, if changes are noticed, next steps need to be planned.
Safety...have there been fires in the kitchen, calls from a parent who has gotten lost in their car, unreported accidents or more than one fall in the bathroom??
Mood..have you seen your older family withdrawing from previously enjoyed activities, or increasingly isolating themselves? Are they blue, eating less, sleeping poorly, and appear to feel hopeless?
Cognition…have they shown signs of losing skills they once were capable of (washing the clothes, setting the security alarm, setting up and/or taking their medications as prescribed?)
These are examples within the top 3 most important changes that should alert you to call a family meeting, observe these changes more closely and see if professional assistance…geriatric social worker, geriatrician, neurologist…might be needed to do a preliminary evaluation.
Waiting will only narrow your options….act now!
The Importance of Early Dementia Diagnosis
Today’s St. Louis Post Dispatch had an interesting article on the topic of the importance early diagnosis of Alzheimer’s Disease and the possible treatments available, that can reduce some of the early symptoms. It goes on to speak to the fact that over half of those struggling with this or a related condition do not seek professional guidance, nor do they bring this to their doctor’s attention for referral to a geriatrician. See the full article here.. http://tinyurl.com/ngk8ma
Caring for family members who are showing signs of memory loss can be very difficult. This article points to the fact that over half of those struggling with this condition do not get help. Avoidance of a diagnosis has two downsides. Firstly, medication and referrals to community resources are less likely accessed if the person with the memory loss is not seen by a geriatrician or multidisciplanary team of geriatric professionals. Secondly, the family is unnecessarily struggling alone, until they reach out to the Alzheimer’s Association or other local eldercare resource.
For both these reasons, I hope this excellent article has helped at least one family make up their mind to make an appointment with their doctor sooner than later. Everyone wins. Staying in the dark only extends the period of time a family unnecessarily goes through this alone. Sylvia Nissenboim, LCSW
