Chapter 8
New Realities
IT IS BY GOING DOWN INTO THE ABYSS
THAT WE RECOVER THE TREASURES OF LIFE
Cancellation: Insurance, Friends and family
One frequently hears about, or, more frequently reads about cases where
friends and family come together to aid the victim of a major illness, perhaps
take turns ministering them back to good health, etc. For the most part
these are either fairy tales or extraordinary occurrences. The reality is
far different in the land of dysfunctional families and something that both caregiver
and patient must learn to deal with successfully or
succumb to.
It is better to take control of the situation and move on to new relationships than to dwell on regrets about the failures of past relationships. It is natural for the caregiver to hope for some assistance from family and friends or even from the patient's colleagues at work, especially in areas where they may have special knowledge. However, being loved, in the case of one's family or well thought of by friends and colleagues is just that for the most part and has little more of any practical value.
While old relationships may cool, new and even more valued
relationships are just around the corner. It is not necessary and also not
a good thing to withdraw, to tough it out and to try to face your problems and do
everything on your own.
Recovery may be a long term proposition and, if it is to be successful all the
things you do and the people you know have to facilitate recovery and not drag
you down. It would be nice to have help from your family but if they are
too busy or put off by illness or cannot understand the profound nature of brain
injury and, especially if they cannot deal positively with aphasia,
perseverance, and the other difficulties and needs that the patient experiences
then you have to put those relationships aside at least temporarily.
Insurance papering, underwriter review, cancellation and non-payment
The insurance aspect of major illness may include several unexpected and
unpleasant surprises leading to the ultimate termination of the insurance
policy. As has been pointed out earlier health insurance is just that and
not sickness insurance. Also a lot depends on how your coverage is
handled. The worst is an individual policy; the best is a group policy
with a corporation or governmental agency where an administrator provides
liaison and the group policy provides clout.
When claims reach a certain level, underwriter review kicks in especially with individual policies. This may result in demands being made on the patient by the insurance company that must be met within a specified period or by a fixed date to avoid cancellation. At the same time the company begins the papering campaign which results in reams of indecipherable statements outlining conditions for payment and non-payment. Payments must be made to unknown service providers based on insurance company decisions to pay or not to pay and these payments must be made to avoid cancellation, collection and litigation.
The insurance policy may state that any treatment or medical services provided to the patient will be reimbursed subject to pre-certification. Failure to obtain pre-certification releases the company from its obligation to reimburse. But pre-certification does not mean that the company is therefore required to pay. In a typical case, pre-certification for at-home therapy was obtained by the staff social worker at the hospital for a patient being discharged. Several years later the service provider notified the patient that the insurance company had refused to pay and the bill would be sent to collections if the patient refused to pay.
These extensive notifications and requirements cover a lot of procedures and come at the time that the patient is unconscious or otherwise vulnerable. But the patient must respond to requests for information by deadlines established by the insurance company or risk cancellation. Requests for pre-certification must be received and processed by the company before the procedure is initiated or the company may refuse payment.
If these are difficult conditions for trained and experienced hospital administrators to understand and deal with, they are simply impossible for a patient acting alone, especially one with a head injury. The amount of paper generated by the company containing notifications, rules and requirements is overwhelming and appears to grow exponentially with the number of treatment procedures.
Look for love in all the right places
Friends and family may be
concerned with your health but probably not interested in your infirmities. Try
telling someone about your problems with athletes foot or PMS when they ask
about your health. They will be less than interested in your major brain
injury. They will be even less interested if you are "needy." Think
about how interested you are in the chronic problems of others to get some idea
about how much attention you can expect from them.
This is a serious problem for someone who needs a lot of help but who's spouse, children and closest friends decide to bail. But it is important for the patient and the caregiver/partner (if there is one) to cut their losses and let these people go. To do otherwise is counterproductive. One individual who was totally devastated by the reality of her brain injury and by being left, for the most part, to deal with it alone, stated, " I must find people who will love me and accept me the way I am." She was able to rejoin a group house where she had lived in the past. Later on she bought a house that included a small apartment and arranged for someone to live there in exchange for the assistance she needed.
Who can help
There are people who are accessible and loving but they
must be sought out because they are not necessarily where you might expect them
to be. In a case that is not at all unusual, a woman who lived alone at
the age of 80, was dying of Congestive Heart Failure. When she turned to
the parish church where she had been a member for over 20 years no one could be
found to help her except one member who was a social worker and offered to help
her for a fee. The parish priests declined on the grounds that direct help
was not included in their job description. But she did get some help. A
church member came by to take her to the doctor and help her straighten out her
address book and find her living family members, someone who lived nearby and
did freelance bookkeeping helped straighten out her accounts, the local
community center provided meals on wheels, VNA provided for case management and
her lawyer, who later became executor of her estate, notified the family.
All of these people served her needs with compassion and love.
It may help as a starting point to consider that all of our social interactions function within the economic system. The "free" help one might expect from friends and family is available only to the extent that they are willing and able to step outside the economic system or to modify established arrangements. In terms of the system, assistance that is "free" is provided by government agencies and mostly nonprofit organizations as part of their mission. In addition, moderately priced or low cost resources are available.
These sources are substantial and have the potential of meeting the needs of recovery. Fortunately, the sources you need are also completely accessible because, due in large part to the Americans With Disabilities Act, complete accessibility is also part of their mission. Because so many people with disabilities can expect only limited assistance from family members, these organizations provide assistance to those seeking assistance. There are even organizations whose mission is to provide assistance. Organizations such as centers for independent living and supportive services programs at educational institutions become focal points for disabled individuals during at least part of their recovery.
Unlike the family members who are reluctantly called to duty, the individuals one finds providing assistance in dedicated organizations are trained and fully committed to helping. Their commitment goes beyond the paycheck to a desire to serve that the paycheck makes possible. Whether in the intensive care unit of the hospital or later in the folk dance program at the community center or the guidance counselor in the students with disabilities program at the community college, there is a kind of "functional" love that is as profound as it is gratifying.
Things to Do Checklist
Check out local community centers, YMCA centers, community colleges, church
and service programs for activities. Visit the centers and meet with
recreation directors in order to find out about special activities. Some
community colleges conduct exercise and arts and crafts programs in retirement
and nursing home locations that are open to the general public. If you are
the caregiver/partner you need to participate with your patient. Don't
just drop them off and leave; they need you to be with them in order to get the
most out of the activity. Walking, dancing and other forms of exercise are
most beneficial in recovery but persons with head injury lack motivation, focus
and stamina and need encouragement and rewards. Dancing is especially
suitable because of its social aspects. While it is difficult for the
brain injury patient to concentrate and follow, the challenge is exciting and
beneficial. Participation in program activities is a source of new and
rewarding relationships.
Find a qualified personal trainer. This may be an independent contractor affiliated with a community center or a trainer at a health club or college PE program. This is another activity that the patient and caregiver/partner can participate in together. Community colleges usually have easy access to the exercise equipment once you have taken an introductory course and consultation is usually available as well. It is essential for this to be a joint activity. When the caregiver/partner works out with the patient both will get more out of the experience and it will strengthen the partnership. Staff members will be helpful to you in developing your conditioning goals.
Get an automatically inflating blood pressure/heart rate monitor and take it with you to the gym. The patient's blood pressure should be measured before and after exercise. Keep a running record on an index card or small notebook.
Sign up for a Hatha (integral) Yoga class once or twice per week. This type of Yoga emphasizes stretching, breathing and focused relaxation. The teacher can be expected to be sensitive to the special needs of the patient. You should find that Yoga practice will have a beneficial affect on your attitude and ability to deal with stress. It will help the patient's ability to focus and, ultimately, it will help both of you in your relationships with others.
Join a support group. Patient and caregiver/partner should should meet with a counselor at a center for independent living and attend support group meetings together. Join the local chapter of the Brain Injury Association and plan to attend the annual conference and any other conferences or workshops available.
Start a list of travel possibilities--destinations and ways of getting there. Travel is useful to both partners because it is something that can enjoy together. Use a USA map book to identify places including friends and relatives and tourist destinations.
Review best places to relocate permanently or temporarily. Sunbelt locations are best for recovering patients. California is best for community colleges with disability programs and may be best for amenities as well. In general it is best to move from a northern city to a southern town. Because of difficulties with orientation, the best living arrangement for a recovering brain injury patient is a condominium within a small town laid out according to the New England town plan. Everything is then within walking distance, townspeople are accepting and friendly; it is more difficult to get lost and easier to get found.
Put orientation cues in your house. Because the patient probably will not know where they are when they first wake up for the first period of recovery (possibly several years), put automatic night lights from bedside to bathroom. Put a lighted calendar clock on the bedside table and another one in the living room where a permanent daily orientation workspace can be set up. In this space put a daily calendar (agenda).
Constructing Your Team
Personal trainer
Dance instructor
Useful Publications
To browse additional selections click on
Books.
Best Places to Retire Magazine
Disabled Rights: American Disability Policy and the Fight for Equality -- by
Jacqueline Vaughn Switzer
Disability and the Family Life Cycle: Recognizing and Treating Developmental
Challenges -- by Laura E. Marshak, Milton Seligman and Fran Prezant
Living With Brain Injury: A Guide for Families (2nd Ed.) -- by Richard Senelick, MD and Karla Dougherty
Living With Stroke: A Guide for Families (Rev. Ed.) -- by Richard C. Senelick, MD; Peter W. Rossi, MD and Karla Dougherty
Passages: Predictable Crises of Adult Life -- by Gail Sheehy
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer's Disease,
Related Dementing Illness and Memory Loss in Later Life -- by Nancy L Mace,
M.A., and Peter V. Rabins, M.D., M.P.H.
In the Shadow of Memory -- by Floyd Skloot
First You Cry -- by Betty Rollin
In Love with Daylight: A Memoir of Recovery -- by Wilfrid Sheed
Help Me to Heal: A Practical Guidebook for Patients, Visitors, and Caregivers --
by Bernie Siegel, M.D. and Yosaif August
When Bad Things Happen to Good People -- Harold S. Kushner
Useful Websites
Check Directory