Managing Grief, Stress and Loss for Special Needs Parents
Workshop Presentation From the 2011 SOFT Conference in Chicago
My name is Maraline Mattke and I am a Licensed Clinical Social Worker. That means I have a Masters Degree and special training to help people deal with their individual situations and life challenges. Many times I have been humbled by the magnitude of the life situations that people have to deal with and so it is when I address caregivers. I am an individual as a woman, a mother who has faced some of the challenges but one who has never been faced with the enormity of the situations that you have to deal with. Consequently, I also need to give credit to the many caregivers that I have watched and listened to and whom have shared with me their experience of being a caregiver. Thank you!
In other words, how to move forward when what we know how to do does not match what is being asked of us.
What we are going to achieve
• What Stress “Is” and “Is Not”
• History of our experience of stress
• History of Acceptance
• Stress: The Loss of a Dream
• Stress Management Areas
• Parent of a Handicapped Child
• Stress Relief for Caregivers
All kinds of relaxation tapes, massaging tools and different service occupations have sprouted up to help us deal with stress. In the beginning of time, our ancestors were thought to have experienced the “fight or flight” response where, when threatened by a wild animal for example – their body would release hormones such as adrenaline to help them survive. Today few of us encounter wild animals but this stress reaction continues.
How many of you have tension headaches? How many of you feel tension in your shoulders or in your back? How many feel it in a different area of your body or all of the above? You have been placed into a very difficult caregiving role.
Stress and Caregiving
In the caregiving role flexibility and resiliency are required – 24 hours a day 7 days a week. A key ingredient is building on your current level of flexibility and resilience.While parenting a Special Needs Child, parents have a normal, adaptive, grief response to a “loss of a dream” (Dr. Ken Moses)
How do we build our Stress Management skills?
ACTION ORIENTED SKILLS – Where we seek to confront the problem causing the stress – often learning a new skill or seeking the assistance of another or changing something in the environment causing the stress. Examples include Learning how to balance a check-book, or price comparing companies to get the best price on replacing a hot water heater are examples.
EMOTIONALLY ORIENTED SKILLS – Where we do not have the power to change the situation, but we can manage stress by changing how we look at the situation and/or how we feel about the situation. Realizing that with your child’s illness playing baseball or going to college are not an option but instead to enjoy every smile and every day as a gift.
ACCEPTANCE ORIENTED SKILLS – Where something has happened over which we have no power and no emotional control, and where our focus must be on surviving the stress.
Stress, Grief and Care-giving
With your child’s diagnosis you experience grief and loss. Most interventions focus on the loss of a loved one but losses are many and varied and all change the focus and the well being of those affected. Every individual experiences loss differently. The trauma and intensity of the loss also changes the experience
A common list of losses include:
• Death of a loved one
• Divorce/ Loss of Family
• Loss of Job
• Loss of Home
• Loss of Health
• Loss of Body Image
• Loss of Money
• Loss of Security
• Loss of Status
• Loss of Safety
• Loss of Belongings
• Loss of a “Dream”
This is the area of greatest change for a caregiver; you have no power to change the diagnosis of your child, no power to change the new role you have to now fulfill and initially no emotional control over your reactions.
History & Process of Grief
The most familiar model of acceptance is the one set forth by Dr. Kubler-Ross in 1969 in her classic book “On Death and Dying” that delineated her now famous “Stages of Acceptance of illness.”
Sometimes you may find yourself getting angry for no apparent reason- possibly crying or feeling very sad when you encounter a certain song-or smell – or with an upcoming holiday.
Insight into where you are in these stages is critical. Guilt reigns supreme. Many broken marriages occur and many medical emergencies arise in weathering the care-giving role.
Remember to be realistic with what you are expecting of yourself and others. It is not selfish but instead a survival technique to put yourself first.
Keep things in perspective – your home does not need to look perfect, you are not perfect – go with the flow and remember to appreciate the small things.
Stress, Loss and Care-giving
• Normal, adaptive, grief response to a “loss of a dream” (Dr. Ken Moses)
• DO NOT TRY TO PREVENT OR STOP GRIEF!!!!!
• Give permission to yourself as a caregiver to grieve as one of the 5 Stages of Grief (Elizabeth Kubler-Ross) which must be worked through before acceptance
• Denial, Depression, Anger, Bargaining, Guilt/Shame
See the light – how each piece intertwines, fits together and compliments the other – so do the different aspects of our life.
Sleep needs change as we age but if you are dragging in the afternoon you may not be getting enough. Know what your body needs. Not getting enough sleep – lessens our immunity to fight off infections and leaves us irritable and unhappy.
We all have our own “comfort foods” and as part of a sensible diet these are what they are called – comfort foods. Eating in moderation of comfort foods is okay unless you are suffering from a chronic condition and should not eat certain items. Remember alcohol is a depressant and may add – not subtract -from a depressing situation.
How many of you walk, jog, play tennis or another sport? Exercise helps your body to secrete hormones that help your body to stay strong. You do not have to be “body beautiful” – to take a walk and get outside- especially in the morning “to stop and smell the roses” can set the tone of the day! When you can – exercise with another person, because that can help you to continue your exercising and to support each other. Exercise combined with relaxation such as Yoga is helpful. Mediation or prayer can also be enriching and healthful.
Relaxation & Pleasurable activities
• AROMATHERAPY- The use of essential oils or an aromatic candle can be helpful.
• The therapeutic massage or allowing an aromatic bath – is also helpful . There is substance to the Calgon commercial of “take me away”.
Spiritual and Religious Participation
Acceptable “Acting Out” Sports, martial arts, setting up safe “acting out” environment to break things, punching bag, pillow fighters.
Keeping a journal in writing form or drawings is also very therapeutic. Closing the journal and putting it down helps shelve the negative things that have happened.
Smiles and hugs – Children laugh an averageof 127 times a day- adults much less.
Pet Therapy – The unconditional love that a dog gives wagging his tail and greeting you, even if you have only been gone for 10 minutes, is difficult to match. The “purring therapy” of a cat is also therapeutic. Watching fish swim in an aquarium is soothing to others. Make sure though that for those who have experienced a loss that to have an animal decreases rather than increases stress.
Last but certainly not least is:
SMILE THERAPY – The old song “Gray skies are going to clear up- put on a happy face” has a lot of substance in the biological sciences.
Maraline Mattke is a Licensed Clinical Social Worker who has special training to help people deal with their individual situations and life challenges. This presentation discusses Stress and Care-giving and provides an understanding of how stress impacts nearly everything we do. This understanding helps immensely in dealing with the myriad of problems we encounter daily.
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