Take Your Oxygen First
Protecting Your Health and Happiness While Caring for a Loved One with Memory Loss
By Leeza Gibbons, James Huysman, Rosemary DeAngelis Laird, Victor Starsia, Richard Day Gore
LaChance Publishing LLC Copyright © 2009 Leeza Gibbons, James Huysman, PsyD, LCSW and Rosemary DeAngelis Laird, M.D.
All rights reserved.
Why "Take Your Oxygen First"?
"Take your oxygen first!"
All of us who have traveled by airplane have heard this phrase during the pre-flight instructions, when the flight attendants explain the use of the emergency oxygen masks. When the masks fall, it's a warning that there will be only a few seconds before every person on board will lose consciousness. If you're traveling with a young child or an elderly person, your natural reaction is to make sure he or she is safe first, before you help yourself. But if you think about it for a moment, you realize that if you ignore your own need for oxygen, there is a good chance you may be unable to help your loved one, and if that happens, you may put both yourself and your loved one in danger of serious injury or worse. The meaning of these instructions then becomes crystal clear: if you don't take care of yourself first, you'll be unable to care for your loved ones in their time of need.
To learn that a loved one has a progressive memory loss disorder can be as shocking as seeing that oxygen mask suddenly fall from the ceiling. It's a signal that your life is about to change; that a tremendous responsibility is about to be thrust upon you and that frightening decisions must be made. Most of all, it's a signal that you must act fast to ensure your own well being so that you'll be able to give the best care possible to your loved one in the coming years.
But how do you put your own needs ahead of your loved ones? After all, most of us have been raised to believe that self sacrifice is a virtue. While raising our families, self sacrifice is automatic: we put the needs of our families first. In fact, in our society, self-sacrifice is expected. We're taught from a young age that we are "bad" or "selfish" if we help ourselves before we help others. To be sure, in nearly every respect, taking responsibility for others and putting others first is a wonderful human quality, a positive attribute that nurtures our personal relationships and enhances the well being of society as a whole. But in the context of giving care to a person with a chronic illness, and in particular, to a person with a memory loss disorder, a rigid belief in the idea of self sacrifice actually prevents one from giving the best care one possibly can.
When you neglect your own physical, emotional and spiritual needs, you cannot possibly give effective care to a loved one. Ask yourself this: if you are not feeling well or you have neglected your own physical fitness and have no physical energy, how will you be able to keep the extra hours you'll need for all the additional work caregiving requires? If you're depressed to the point where you can't face getting out of bed, how can you keep your loved one and the rest of your family positive and moving forward? The enormous demands placed upon caregivers often result in their own serious illnesses and even in their deaths; frequently, the death of a caregiver means that no one is left to care for the person who needed care in the first place. That's why the expression "take your oxygen first" is so appropriate to the world of caregiving, particularly when caring for one with a progressive memory disorder. The oxygen mask drops with the diagnosis. If you don't take that oxygen, your life can careen out of control, ending with a disaster to your health, emotions, and spirit that reaches far beyond the individual with the diagnosis.
To make matters worse, there can be a great deal of shame and stigma attached to the idea of caregiving. Caregivers are often described as "martyrs" and "victims." To many, caregiving is often associated with codependency, a mental health challenge in which a person cares too much for another's struggles, often enabling bad behavior (e.g., excessive drinking) in the one being cared for. These associations cause caregivers to avoid being labeled a "caregiver" and, as a result, they fail to seek help for themselves.
Unfortunately, in our society very little is being done to educate and support caregivers and their families, perhaps because of the negative stigma associated with caregiving. It's an enormous problem. There are currently over 50 million Americans whose well being is being seriously compromised by the burdens of caregiving. This number will grow as the baby boomer generation ages. By 2020, we expect the ranks of caregivers to expand to some 80 million. If burnout, fatigue and illness become the norm for this group, medical costs will skyrocket. The potential toll this will take not only on the individuals and their families, but on society in general, is truly monumental.
At Leeza's Place, we find this as shocking as it is unacceptable, and we want to reverse this trend. Arming yourself with knowledge and support right away can reduce the strain on your entire family by helping you understand your role and the issues you'll face. Once educated, you are less likely to become so demoralized, isolated and overwhelmed that the well being of everyone around you suffers. A strong and healthy caregiver can significantly improve the quality of life for everyone: the individual, the family and society.
You may be feeling overwhelmed now, but by applying the practices we use at Leeza's Place to your own life it's possible for you to become a healthier person while giving care to someone else. Leeza's Place follows what we call the "Three E's": Education, Empowerment, and Energy. Education increases your knowledge about the disease you are facing, about better ways to manage your loved one's illness and about the need to nurture your physical, emotional and spiritual well being so that you can meet the challenges of giving care to your loved one. Knowledge frees us from unnecessary and destructive anger, guilt, depression and other negative emotions so typical of caregivers and gives us the confidence we need to move forward.
Once you are Educated, you'll be able to Empower yourself through specific actions. Empowered caregivers have the strength to take responsibility for their own well-being and do something with their knowledge. Together, Education and Empowerment lead to Energy. Energy is the basis of life; it's the means by which we all can live rich and fulfilling lives no matter what is thrown at us; without it you are unable to keep up, let alone find meaning and joy every day. By making The Three E's part of your life, you can rebuild your energy and discover a richer experience for your loved ones and yourself no matter what challenges you face.
Take Your Oxygen First will show you how the three Es can be applied to your own caregiving experience. You'll join with Leeza and the Gibbons family on their journey of caregiving for Jean, and see how many of the situations they faced mirror your own — a moving example of the universal needs, challenges and potential triumphs of caregivers like you.
We'll begin by exploring the disorders suffered by our loved ones, how they are diagnosed, how they affect the mind and body, and the treatments available to fight them. We'll also give you information and advice on the best way to get the proper care for your loved one, how to navigate the health care system and how to make sure you are doing all you possibly can for your loved one.
Next, we'll show you how to take care of your body through proper exercise, good nutrition, brain fitness and getting a good night's sleep so that you can face each day with more confidence, greater strength, energy and alertness, and avoid the bad habits that can lead to illness, emotional distress and ultimately impact the life of your loved one.
We'll then turn our attention to taking care of your emotional health and show you how you can avoid the common problems of denial, guilt, anger and depression that so many caregivers face, to help you retain a vital sense of yourself even as you are assailed by the day to day rigors of caring for your loved one. You'll find out about the problems faced by Leeza and her family during the emotional roller coaster of caring for Jean and how they found ways to make the experience a positive one.
Finally, we'll help you learn how to find meaning in your life as a caregiver; the great comfort and joy that can be found in caring for a loved one with a memory loss disorder. We'll face with you the many challenges to the family that a memory loss disorder can bring, and show you how to bridge the generations of your family with creative and interesting activities that can enrich your life and the lives of those around you.
Throughout, you'll find useful tips from Leeza's dad, Carlos, Sr., called "Carlos, Sr.'s O2 for Caregivers," which he learned while taking care of Jean.
Ultimately, you'll learn how caregiving for someone with a memory disorder — potentially one of the most physically, emotionally and spiritually catastrophic experiences anyone will ever know — can actually turn you into a stronger and more capable person, with a clear sense of meaning and purpose in life. By the time you finish this book, we hope you'll see that when you care for yourself first, you ensure that your loved one gets the best possible care you can give.
So go ahead, take your oxygen first! You need it. And what's more: you deserve it.
Understanding Memory Loss Disorders
Leeza: Mom first began showing symptoms of the disease when she was in her late 50's. Mom was in charge of paying the household bills every month, and she always kept a calendar of which bills needed to be paid when. I remember Dad telling us Mom had confessed to him one day that she had paid the same bill three times. So, in a way, it was really Mom who forced the family to begin to think that something was wrong.
After that, we all started noticing things about her behavior that just "weren't Mom." She began repeating things she had just said over and over. Then her personality began to change. Mom, who had never cursed a day in her life, started using profanity. She began raging and screaming at Dad with paranoid and outlandish accusations, saying he had never loved her and that he was trying to kill her. You can imagine how crushing these words were to hear. She would say the most horrible, hurtful things to Cammy, just out of the blue. They just destroyed my kid sister. I remember one Easter, when the family put together an egg hunt for the kids at my home. Mom, who lived for her grandchildren, just stood in the yard, pulling on her lower lip, ignoring the kids and seemingly in another world. Another time, I took her out to lunch at a local café. While I was paying the bill, Mom walked out to the front of the restaurant. I found her sitting in the back seat of someone else's car. But one of the most frightening things I remember from those days was the fearful look in her eyes she sometimes got, like she didn't know where she was or who the people around her were.
Still, we weren't able to bring ourselves to believe that Mom had the same disease that had taken her mother. We all thought that Mom, who was quite a social drinker, may have crossed over the line into alcoholism. I recall being on the phone with the family one night, talking about Mom's behavior and what to do about it, when she picked up the extension and said, "Leeza Kim, I know what you're doing. I know you're going to send me to that Henry Ford place." We were talking about sending her to the Betty Ford Center for alcoholism.
The really sad part of the whole situation was that we waited so long before we finally took her to the doctor and got a diagnosis, which didn't happen until she was 63. I guess it was a combination of Dad covering up for her behavior whenever one of the kids raised the issue, our not really understanding what was happening to her, and I guess not wanting to believe that our wonderful mother might have such a terrible illness. But knowing what I know now, if I had to do it all over again, I would have taken her to the doctor at the first sign of trouble.
As the Gibbons family and countless other families experienced, the diagnosis of a degenerative memory disorder is a life-changing event, for the person diagnosed as well as for that person's spouse, family and friends. It creates a whirlwind of emotion: an acute sense of loss, grief for the afflicted loved one, anger about one's lack of control over the disease. But a diagnosis can also bring a sense of relief, the relief of knowing the cause of the problem. Understanding the disease means we can act, rather than flail about in the dark. Knowledge enables the caregiver to adjust more easily to the changes the illness will bring, allows all concerned to better prepare for the future and can help improve the present and future quality of the lives of everyone involved. Learning what the disease looks like, what to expect, and what steps to take can also help our loved ones manage their own experience with less anxiety and allows them to take a more active role in their own care.
Leeza: I always love it when Oprah says, "When you know better, you do better." I think that's especially true of caregivers. That's why we encourage people to get educated early and get a diagnosis as soon as possible. Rather than creating more hopelessness, knowing what the condition is allows you precious time to hear your loved ones' wants, needs and desires and allows them to participate in their own care. It also prevents a lack of knowledge from creating situations that we might later regret. For example, many people tell me they wish they'd known their mother had Alzheimer's earlier because they would have spent far less time correcting her and trying to convince her to do things differently. Alzheimer's patients cannot join us in our world. We must join them in theirs.
In this chapter you'll learn about how we think, how memories are made and about the disorders that cause memory loss. In particular, you'll learn about the most common cause of memory loss, Alzheimer's disease, how it affects those who have it and how to best manage its effects. Caring for someone with a degenerative health condition presents intense demands and challenges. Learning how to meet these challenges is a process; it doesn't happen right away. But understanding more about the disease can help you better take the caregiving challenges in stride. Remember, knowledge is power!
The human brain is a four pound collection of nerve cells with three main components: the cerebrum, the cerebellum, and the brain stem. The brain communicates with the rest of the body through the brain stem's connection to the spinal cord and its collection of nerves that extend to all parts of the body, all of which together are known as the nervous system. Through these connections, the brain controls all of our activities, including our intellectual processes, our emotions, our physical actions, and our behaviors.
These activities are controlled by different sections of the brain. The cerebrum consists of the cerebral cortex (grey matter), where thinking processes reside, and white matter, which helps transmit nerve impulses between brain sections. The cerebrum is divided into lobes which each have a specific set of functions. The frontal lobe, located in the front of the brain, is associated with personality, problem solving, abstract thought, and skilled movement. The parietal lobes, located just above and behind the frontal lobe, receive sensory input such as pain, taste and touch. They are also responsible for visuospatial abilities, such as understanding the distance between oneself and another object. The temporal lobes, along the sides of the brain, are involved with hearing and language comprehension, perception and parts of the process of memory. The occipital lobe, located at the back of the brain, is responsible for vision. Certain internal sections of the cerebrum also provide special functions. For example, the processes involved with making and retrieving memories are managed in an area called the hippocampus. (Continues...)
Excerpted from Take Your Oxygen First by Leeza Gibbons, James Huysman, Rosemary DeAngelis Laird, Victor Starsia, Richard Day Gore. Copyright © 2009 Leeza Gibbons, James Huysman, PsyD, LCSW and Rosemary DeAngelis Laird, M.D.. Excerpted by permission of LaChance Publishing LLC.
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