CARING AT HOME

Ellen Caruso, RN

LaGrange, NY

Author of:

Keeping Them Healthy, Keeping Them Home: How To Care for Your Loved Ones at Home
...

Health Information Press donates a portion of all sales to "Kid Care" which provides meals on wheels to pre-school children.

I've been busy with interviews and presentations so I thought that right now the best I can offer is my most recent presentation which describes generally what I have written about and why. Feel free to print it and pass it along and as always, comments are welcome.

.....The book that I have written provides basic hands on instruction and skills for the informal caregiver at home. Statistically speaking, that person is forty-something, female and caring for a parent.

Early on in nursing school, I learned that the art of caregiving involves not only rolling up your sleeves, but opening your heart as well as your eyes.
With this foundation I have written a book directed at interventions and approaches to home health care and hope to gently remind the reader throughout that each person will receive and render care in their own unique way, at their own pace and according to their individual beliefs and understanding.

Enhancement in medical technology has extended the life expectancy far beyond that of our grandparents.

State of the art diagnostic testing allows for early diagnosis followed by a spectrum of procedures, medications and treatment options.

The advancement allows for more precise treatment of what were once rapidly debilitating and often fatal diseases.

Paradoxically, while technology furthers life expectancy, the financial support to improve or at least maintain life quality does not keep pace. The custodial care issues of daily function have little recognition and few solutions.

Patients are sent home from the hospital sicker and quicker, with vague instructions in what to do, but not how to do it. And so, they may be stable, but still weak, no longer confused, but still forgetful. What results is a group of frail elderly or those with chronic illnesses, many of whom can likely feed themselves, but no longer drive to the grocery store. They can shower unassisted, but cannot safely step over the edge of the tub. Family members now find themselves responsible for obtaining those groceries and making daily visits to supervise bathing. Yet they themselves are unsure of what foods to buy for dietary compliance, or what equipment to purchase to aid with showering.

Imagine your 70 year old loved one, lying in bed at home recovering from a recent hospitalization. They are wearing a diaper, which is soiled and the sheets underneath them are damp.

You realize that the diaper needs to be changed and so do the sheets. You may have been instructed that their skin can become irritated or breakdown if not kept dry. Yet more than likely, no one has instructed you or demonstarted for you how to change the diaper and the sheets for your loved one who is too weak to get out of bed.

And so, I have provided that instruction for the caregiver, taken you step by step through the preparation and actions needed to approach the task with confidence. This knowledge will allow you to perform effectively, wasting little time. In return, you will use less energy and most importantly, ease discomfort and the potential for complications.

Personally, I am not trained as a public speaker, yet it is something that I am now required to do, a task for me to master. I know my subject and have passion for it and so I can approach it with some confidence. And that is what caregiving is: a series of actions that become easier as you practice and apply expirience through trial and error. If you have the desire to help a loved one maintain their quality of life at home, you will seek the answers and more importantly, learn what questions need to be asked. And just as I practice and refine my presentations and speeches, the caregiver needs to assess what actions they take, how their loved one responds and how they can improve their approach for the next time. And just as I have sought guidance through books to learn how to prepare and deliver, I have written the same type of self-help book for the caregiver.

There are mamny interventions for the very young that can be applied to elder care, yet the sheer size of an adult creates the need to alter the approach. And caregivers don't generally have nine months to prepare for the changes that their own lives will undergo when they take responsibility for meeting the needs of another life. There are no parties and gifts for the new caregiver where they are given the diapers and bibs that they may need. No hand me down clothes with Velcro fasteners to hasten dressing. Few emloyers who will make allowances for when the sitter doesn't show-they don't often understand that some adults really can't be left alone. And there are not the easily recognizable allies that a new parent has with whom you can strike up a casual conversation about bowel habits or sleepless nights.

And yet, these are the very issues that face 52 million caregivers each year.

I address also the emotional support issues that are so essential to caregivers, many of whom are sandwiched between the needs of their own familes and careers and those of their parents or loved one's. There is the patience that is needed to cope with wool sweaters worn in July. And particularly if caring for a parent, there may be some strong resentment when time is spent applying lipstick for a doctors visit by the very parent who never had time to read that child a book when they were young. Yet if the caregiver can access some support, they may find comfort in hearing from others who are also trying to cope with the tapestry of habits and notions that survive as we age. They may learn that some of what they perceive as stubborn rituals are simply the acts of that loved one trying to maintain some control of their lives, a way to preserve a trace of independance.

I hope to convey that caregiving should only be done by choice, not by default because you live closer or have fewer commitments than your siblings. And that neither any person or professional is in a position to judge or question you if you are unable or unwilling to be the informal caregiver. You must consider not only the mental and physical commitment but the economic and environmental ones as well.

When a doctor discharges a patient from the hospital, they return home a person and you who were once the child have become the caregiver. You can not be expected to know every answer but you do need to know your resources.

You must ask every question as often as you need to until the answer makes sense to you. You have become that loved one's advocate as well as provider of healthcare. And yet, you can not stop being the child.

To paraphrase Mother Theresa, a dedicated caregiver and health educator: You can not expect to do great things, simply to do small things but with great love.

last updated April 21, 1999

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