|LIFE is the childhood of our immortality.
- --Johann Wolfgang von Goethe
The Way Up Newsletter
Vol. 36, 01-05-04
NAMASTE! AND WELCOME TO THE WAY UP NEWSLETTER FOR WHICH YOU HAVE REGISTERED!
|MAY YOU EXPERIENCE A HAPPY, HEALTHY, PEACEFUL, PRODUCTIVE NEW YEAR!
This issue is long overdue & I apologize.
But the reason it is overdue relates to our current topic which is:
|WHO WILL CARE FOR THE CAREGIVER?
My heart, mind, & wishes for healing blessings go out to the caregivers of this world. Theirs is a difficult & sometimes disappointing lot. Even if you are not now an active caregiver, you may know someone who is, or you may be called upon to fulfill that role at some time in your life.
It is always a revelation when a new life experience opens our eyes to a segment of the population we may have previously given inadequate consideration. There is no learning equivalent to that of experience, though there are certain experiences we would rather forego.
Through the years, I have supported patients during their caregiving of loved ones & seen their stresses, struggles, & anguish while we worked together to try to ameliorate the physical, emotional, & spiritual toll of their usual ultimate loss & grief. Too often, I have seen caregivers become completely depleted & ill because of the tendency to put their own needs last & to neglect the self.
Yet I could not truly grasp the complexity of handling the conflicting emotional responses of hope & despair, helpfulness & helplessness, hanging on & letting go, endlessly giving, then giving even more, but still being able to receive. I could not know the agony, hope, fear, frustration, ambivalence, & sense of abandonment coupled with deep love, compassion & caring that is the role of the caregiver. How can you serve, give, be strong & supportive while your own world may be crumbling?
How do you prepare for opposites?
At the same time preparing for
Life, and for death?
How do you maintain faith and hope?
While steeling for loss?
Herculean emotional gymnastics
While time stands still
You are suspended
Between here and there
Not knowing which direction
Fighting dread and uncertainty
You reach out and touch a star
Then plunge to earth again
Reaching, stretching, plunging
Until you are again able to feel
The beauty of a sunrise.
Yes, caregiving can be a make-or-break life situation. An extreme example is the mother in Georgia. This distraught exhausted mother & long-term caregiver shot & killed her ill adult sons to put them out of their misery. The final trigger was her helplessly watching one of her sons experience pain.
The shooting occurred after many years of caregiving for her husband, then her sons, all of whom had the fatal virulent, relentless hereditary disease of Huntington's Chorea. The sons wanted to die & had unsuccessfully attempted suicide before when they were capable of taking action. Now they were completely helpless & she simply could not bear to see them suffer any longer. This mother obviously did not have enough of her own support system & ultimately crossed the line.
Caregivers need extraordinary inner resources. The caregiving process tests your abilities, faith, character, physical & emotional strength & endurance. Though untrained & unprepared, caregivers must be multi capable. Not only are they called upon to personally minister to the sick one in every way, but they must adequately communicate with medical personnel ( which is difficult all by itself), understand & handle medical & insurance billing, stand up for the rights of the patient as well as their own, ask for help & try to receive help from others, organize time & tasks, & learn as much as possible about the health condition of the one for whom they are caring- just to mention a small part of the responsibilities. All the while they need to continue to tend to other family members, jobs, & household responsibilities while trying to adequately look after themselves to maintain their own health & strength. This is not always the outcome.
Caregiving is a high risk activity. Minimal time, energy & motivation are left for self care. I often wondered how do those who feel weak & without many resources manage to get through the ordeal?
It is easy for the caregiver to eat poorly, to not get enough sleep or exercise, to grapple with worry & anxiety, to feel disappointed & rejected when there is a lack of support & availability from others & to become utterly exhausted. The ultimate truth is the caregiver HAS to muster the motivation & wherewithal to take care of the self. Who else is going to? Try to clarify where you need help, how much & from whom you can get it, and then ask for it. You can also be helped by the beneficent powers of the universe to the degree you ask & believe.
|WHAT DO I MEAN BY CAREGIVER?
There are many ways of caregiving, such as caring for children, & other family members or friends in various ways. But I am speaking of the caregiving of a loved one who is chronically or terminally ill.
Taking care of healthy children or other loved ones in your everyday life, though time & energy consuming, is still generally rewarding as you see them positively respond & develop.
But taking care of someone when you are only able to maintain the status quo or when they are slipping away is obviously an entirely different emotional & physical experience.
Some caregiving may go on for years. Approached from a certain perspective, this can be a spiritual privilege, but only if the caregiver has that life view coupled with powerful residual emotional, physical & spiritual resources. Many don't and are inexorably pulled in to seemingly endless demands without the chance for adequate refueling.
The statistics as to who is involved were surprising to me. In America, the family caregivers provide over 80% of all home care services. These services have a market value of 207 billion dollars. Over the span of one year, at least 54 million Americans are involved in some sort of caregiving activities of either tending to an elderly or disabled or chronically or terminally ill relative or friend. Most are thrust in to this challenging overwhelming role suddenly & unexpectedly.
|CAREGIVER STRESS AND OTHER HEALTH RISKS?
The common bond & most stressful part of caregiving is the emotional pain & grief the caregiver feels while watching the decline of the loved one. And the greatest stress is watching a loved one suffering relentless agonizing pain. I recently read in a psychiatric newsletter a fascinating reference to a study done comparing the brain activity of caregivers with the brain activity of their loved ones who were suffering pain. Remarkably, the same areas of the brain were stimulated in the caregivers as in the suffering patients. Not that the caregivers were "physically" experiencing the pain, but they were mentally & emotionally experiencing it. The caregiver goes through their own torture, even more so when there is "intractable pain", not amenable to usual methods of pain control.
University researchers have discovered that caregivers of those with cancer experienced higher levels of stress than the patient did.
The second greatest stress is the difficulty arranging help from other caregivers besides the self, then supervising that help. Yet most heavy duty caregivers do not get consistent help from other family members or professional caregivers. The elderly often end up alone caring for their spouse. So those who have the luxury (though stress) of supervising other caregivers are better off than most.
Help from other family members or friends is most welcome. But when couched in the phrase "What can I do to help?" the caregiver may be so besieged as to not be able to give practical answers. Also some may ask what they can do while not really wanting an answer, or to follow up with anything concrete. As if the asking is the doing. So when the caregiver does express their needs to those idly offering support & it is then not forthcoming, this can set up more sense of anger, disappointment, isolation, abandonment & conflict in the primary caregiver. The true/sincere supporter of the caregiver is around enough to SEE what needs to be done to provide support & to go ahead & do it with no questions asked.
Sixty one percent of family caregivers providing at least 21 hours of weekly care end up suffering from depression. This can be insidious & difficult to pinpoint, but there are short tests one can take to see if depression has developed. One excellent such test is the Zung test. If you test as depressed, you may want to get help for this condition.
Stress can trigger any illness to which one may be genetically predisposed. Stress can suppress the immune system allowing greater susceptibility to a myriad of disorders. Stress, in general has been called America's number 1 health problem even in those who are not caregivers. Whether you are an active caregiver or not, if you are feeling stressed, you can take a test to determine your stress level. you need to institute a stress reduction program.
Whenever there is overwhelming stress, the negative effects are far less if one has a sense of potency, usefulness, knowledge, & control. When there is a feeling of helplessness or impotency, the emotional & physical damage is much greater. If you are reading this newsletter, you no doubt have access to the internet. Use it to arm yourself with stress relieving knowledge & resources. . You can find practical & emotional support at http://www.strengthforcaring.com or http://www.nfcacares.org. You can also order a book titled Caregiving: An Errand of the Heart: Survival Tips for Caregivers by going to http://www.4therapy.com/consumer/life_topics/item.php.
Another way to exercise a critical sense of control is to be given Durable Power of Attorney by the one for whom you are caring. This should designate you to make medical decisions & to take care of all medical issues, if & when your loved one cannot. While they are still able to participate in the decision making process, you can clarify with your loved one as to how they would want you to administrate their care. What kind of life support intervention do they want, for how long & under what circumstances?? When would they want it to be discontinued? Under what circumstances would they they not want a "Code Blue" which is a heroic resuscitation effort, the effects of which can be quite traumatic.
Being closely related does not necessarily guarantee these rights. Witness the case in Florida where the husband has not had the right to discontinue long term life support for his wife- with even the Senate & the governor of Florida intervening to stop the court decision giving him that right. Make sure your wishes & all adult loved one's health care wishes are clearly stated in a simple legal document so you never have to live that nightmare. Don't take anything for granted. Protect your loved ones & your rights with a clear legal document.
|WHAT OTHER WAYS CAN THE CAREGIVER CARE FOR THE SELF?
If you even have one friend or person you can talk to about your experience & feelings on a fairly regular basis, this will help much from the emotional perspective.
There are caregiver support groups. But does the care giver have the time & energy to discover & to attend these?
When inundated & overwhelmed it is useful to repeatedly say certain positive words to yourself to help you get through until the most trying time passes. You may choose any phrases which give you some sense of relief such as "This too shall pass", "I choose peace", "I choose love", "Peace be still", & so on. Depending upon your spiritual persuasion or not you may choose certain comforting prayers. Whatever it is you choose, it is important to fill your mind repeatedly with the same affirmation over & over to both calm & support you by keeping away negative damaging thoughts & to help you avoid wallowing in the rigors of your plight.
It is healing, soothing, & useful to play a self help healing/meditation type audiotape or CD each night when you go to bed. Then there is not the excuse of not having time during the day. But play them any time you can. You can get the most out of these kinds of tapes by playing them over & over until you have accomplished the desired goals. It would also be helpful for the one receiving the care to hear the tapes, so you can share the experience, whenever possible.
Any of the following would be useful:
* "The Principles of Everyday Grace"
* "Changing Emotions: A Stress Management Program"
* ProHypnosis.com - any of the music tapes with subliminal messages. I studied hypnosis with Richard Sutphen, who makes these tapes, & can vouch for his capability & integrity.
* The Holosync meditation /stress reduction tape or CD set
When you follow the suggestions outlined in this newsletter you can at least get some fortification for the very grueling, but loving experience of caregiving. Remember to call upon the empowering forces of the universe to sustain you through your trials.
Until the next newsletter,
Keep a green tree in you heart
And perhaps the singing bird will come. -----Chinese Proverb.
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how fortunate are you and I, whose home
is timelessness: we who have wandered down
from fragrant mountains of eternal now
to frolic in such mysteries as birth
and death a day (or maybe even less)
Peace and Blessings,
Priscilla Slagle M.D.
Please email me with your suggestion for future newsletter topics at firstname.lastname@example.org
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