New Horizons is a nonprofit newsletter published three times a year by and for ventilator users, their families and those that care for them. Articles and comments are welcome. New Horizons is not and has never been associated with any other newsletter, product, or company.
If people can change, why not society? Many of us who grew up as disabled children find ourselves struggling with similar situations as adults. Lack of accessibility, discrimination and attitudinal barriers are still a viable part of our lives. To achieve equal political status, we disabled have become visible. We fight against imprisonment in nursing homes as well as fight our way OUT of a nursing home. Our disability has become a political rather than physical condition. We have become the nucleus of a political condition. ADAPT (Americans with Disabilities for Attendant Programs Today) is a case in point. ADAPT is seeking to shift 25% of Medicaid funds used for nursing home care, into nationwide attendant programs. These young disabled people are speaking loud and clear for alternative and much less expensive care in their home.
In an open society, we should not have to live prefabricated lives. It is our constitutional right to choose and chart the course of our own lives, not have it chosen for us. Independence, freedom, dignity. These should be our choices. Unfortunately many states do not recognize the need for 24 hour care in our own homes. Yet it is mandatory that ALL states fund for nursing home care. We must be "cost effective" and not exceed the cost of nursing home care. Those of us who are vent users and require total care are especially venerable to this trap of money threats. One on one care in ones own home is a right that should be available to all Americans. We cannot and will not be forced to except a lower level of care and be subjected to staph infections from other patients, bed sores, and patient abuse or neglect. Assisted living with 24 hour care in a community based setting is rightfully ours. By law those of us who are vent users 24 hours a day must insist that states provide us with 24 hour CARE to match our ventilator needs. Ideally, a combination of skilled nurses and medically trained attendants can greatly reduce the cost of care. Those of us who are alert and can direct our own care do not need a licensed nurse with us 24 hours a day. An attendant who is well suited to work with a vent user, are worth their weight in gold not only for the client but for reducing the cost of care to the states. Are you listening Nevada?
Many of you who have been readers of New Horizons since its birth in 1993, know that I have the infantile form of FSH Muscular Dystrophy and have been a trach-vent user (24 hours a day) since 1983. I started writing New Horizons out of a need to communicate with other vent users as well as fight for advocacy rights to educate the states in promoting independent living programs.
Many years ago I met a young man named Keith. Keith was injured in a swimming accident when he was 9 years old. A complete quad and vent dependent, Keith lived with his father Ben in a modest mobile home in Nevada.
Keith was 31 years old when I met him. He rarely ventured outside and lay prone on an electric tilt table bed. Keith was a highly intelligent young man. He was an avid reader and well versed on many subjects. He was also a computer whiz operating his computer with a chin switch. Keith had nurses 40 hours a week but it was his father Ben who did his care daily. Father and son were very close. They were also isolated and alone having no family or friends. Sadly, Keith died 6 months after I had met him. His father had been diagnosed with cancer and Keith did not want to be in a nursing home. Tragically., Ben gave his son pills and ended his life. One week later, Ben himself died.
It is for Keith and all the other Keith's that I write this newsletter. Independence, not institutions.
"Program to Help Americans Obtain Prescription Drugs"
Senate Special Committee on aging
Dirks Senate Office Bldg., Rm. G-31
Washington, DC 20520
I write this on behalf of anyone with cancer, paralysis or any other catastrophic illness which keeps them shut in temporarily or permanently.
We were normal, everyday average human beings. We had jobs, friends and social lives. We were close to some people and just mere acquaintances with others. But we were surrounded by people. Then one day, like an atomic bomb hitting, our lives turned upside down and inside out. An authority figure people call a doctor, handed us a sentence. Some may consider it a life sentence and for some it is a death sentence. Within a very short period of time, we lost our health, independence, jobs, finances and for each individual, a whole long devastating list of other things. But there is one thing we should not have lost: our friends.
Through our illness, we have become winners and heroes. Our illness is a gift and we treasure it. We have learned so much about life and how to live it. Who is the loser the one to be pitied? Is is that individual who has run for cover when they found out someone they care about is ill. And why do they run? Is it because they don't care? No. In fact they do indeed care very much. They are doing what they can to protect themselves. From pain and loss and the fact that one day they too must face death. They are scared. They don't know what to say or how to express their emotions. They fear that worse than saying nothing is to say the wrong thing. So they remain silent. Hidden. What can the lost friend do? Above all, remember that your friend did not lose their feelings and emotions when they became ill.
They still remain very interested in you and your life, as well as in things going on outside their home. They feel your silence and absence very keenly. You do not have to know what to say at all. No one said you have to say anything. Just be there. Listen. Maybe try being honest with yourself and your friend by expressing how you feel. If you can't go visit, send a let ter. Pick up the phone. Offer to run an errand.
A word of warning to those who hang around the seriously ill: you might learn a lot. You might become encouraged. You may find meaning and joy in your own life. You will find someone who has a lot of time to listen to you and deeply cares for you.
Above all else, learn all you can from their experience You may never have the privilege to be in their shoes.
General body washing Whenever a caregiver is giving a wash-up, whether it be morning, evening, or bed bath, the object should be to get clean. I say this because it frequently seems more of a ritual to get through, than a purpose to accomplish. As far as the nursing assistants I've seen, I can usually tell how thorough their training, by the technique they use. Shortcuts in washing show shortcuts in training, supervision, or possibly even in personal cleanliness.
A real pet peeve of mine is inadequate rinsing of soap. This most often occurs with an over abundant use of soap on the washcloth and a half hearted attempt at rinsing the washcloth with the use of one wash basin. This is a through back to the days before running water. Today, if one were using a washcloth in a sink with running water most thinking people would thoroughly rinse the soap out of that washcloth with running water. The problem of inadequate rinsing of soap is that it can be so drying to the skin, as most people should recognize. For many people with disabilities, such as I have, the skin may be both fragile and already dry. When soap residue is left on such skin, the problems are compounded. Therefore, the solution to the soap problem when washing elsewhere than next to running water is threefold. First, one cannot apply the amount of soap to the washcloth that would be used with running water. Second, two wash basins should be used, one for washing, and one for rinsing. Third, the water in both basins should be changed as necessary. I use the term, as necessary, under the assumption that the caregiver will use reasonable judgement.
Another wash-up pet peeve, that I have is that the genitals should never be washed, with the same cloth, after the rectal area. No well informed, self respecting woman would do this to herself. But it's surprising how many female nursing assistants have tried to do this with me. And I'd surmise that there are many young males who are so unfamiliar with this precaution against infection. A male patient can be almost as susceptible to this type of infection as a female.
It should go without saying, but must be mentioned, that the face should be washed first. Then the progression should be down the chest to just above the pubic area, with the arms included in this frontal area. Next the back, and the feet. Under normal progression I'd say the pubic area , then the rear end. However, there may be circumstances where it would be highly undesirable to go from feet to genitals.
....And That's A View From My Chair!
Disable Hotline, http://members.gnn.com/graphking/disable.htm. - offers help to all people with disabilities, their friends and families. Contains excellent web links, access to instructional videos, a 24 hour-telephone hotline, calendar of events and more.
Ability Network, http://www.istar.ca/ability- is Canada's disability magazine that contains useful articles, resources, photos and other web links.
Ability Online Support Network, http://www.ablelink.org/index.htm -is an electronic mail or pen pal system that connects people with disabilities or chronic illnesses.
ADA Central at Iowa State, http://www.public.iastate.edu/~sbilling/ada.html - contains excellent information about the Americans with Disabilities Act, as well as a wide range of resources and topics of interest to anyone with a disability.
The Family Education Network, http://www.familyeducation.com -provides valuable information about educational resources, child development, college planning, resources for children with special needs and more.
Disabilities Opportunities, Internetworking and Technology (DO-IT) organization, http://www.weber.u.Washington.EDU/~doit/ - resources in science, engineering and mathematics programs.
NEW HORIZONS STAFF
Copyright 1997 Paula M. Howaniec