(Editor's Note: At the time of the original writing of this article, I did not own a computer; didn't even know what was meant by "using a mouse." As an update, if I had known how helpful e-mail, websites, and surfing the web, could be at the time I first composed my article on Caregivers, in the early 90's, I would definitely have put in a paragraph long ago about the internet as a means of communicating and interacting with the outside world for both the care-receiver and care-giver, together and individually. If use of a computer or Notebook is available to either, then imagine the added plethoria of opportunities to ease boredom, frustration, loneliness questions answered via the search engines, crafts, recipes, e-books, writing, even publication on line, so much easily available...)
OF HUMAN DIGNITY
by Paula Freda
"Care-Givers, Guardians of
Human Dignity," resulted from my experiences as a Caregiver and I would
like to share what I learned over the years to help both the care-giver
and the receiver. Caregiving is not an easy task, and neither is being the recipient of that care. Only
a true spirit of charity and trust in the Lord can see both parties through the
emotional wear and tear.
your freedom gone, your independent spirit stifled with "Do's" and "Don'ts";
your home, furnishings, and memories categorized as to what you can keep and
what is superfluous. Imagine these decisions made not by you but by a
well-meaning relative or friend. That, in various degrees, is what inability to
continue living on your own and moving in with your children or into a nursing
home normally requires. And it hurts, desperately.
I have seen it, over and over, with the frail old and infirm, with those whose mind is still active if somewhat forgetful, but with enough memory to feel the loneliness and the violation of the simple rights to everyday living we the self-sufficient take for granted.
I have never forgotten hearing about an old woman and her small dog. She had survived to a ripe old age, but could no longer care for her home. Her niece wanted to sell the house. The old woman held out. The niece obtained power of attorney, took the woman to a nursing home telling her it was just a visit, then left her there. I remember hearing through neighbors how the woman cried, asking for news of her little dog. Today the home has been renovated; it is a beautiful home, but each time I pass it I think of the tears and the pain of the old woman. I never knew her name or any of her kin, but it still hurts to think of what she must have endured and perhaps still endures to this day.
From what I learned over the years, I want to share some small actions that can make that loss of freedom a little less painful. At the same time, I'm well aware that well-meaning sincere caretakers need plenty of understanding as well, especially when the live-in is an in-law. Your freedom as well is now curtailed by someone with whom you are basically a stranger. So what I have to say is for both.
It may take some explaining to the one receiving care, but they need to understand that privacy is equally important to the care-giver.
To lessen friction in a home, the live-in should have their own room, their own television, VCR, a recliner or upholstered chair and footstool, a small table, a spare chair, furniture that they can individualize in order to re-establish some of their independence and sense of individuality; and if possible a bathroom close to their room.
Choose a moment to spend visiting your charge, a moment outside of your usual care-giving. In other words, have a cup of coffee or tea together, and chat, like friends. Reminisce about old times. If sad memories are brought up, then subtly introduce happy ones. Use tact. Such a visit between care-giver and receiver can ease tensions and strengthen relationships.
If you and your charge do not speak the same language, perhaps you can get a friend or a neighbor who does, to visit your live-in a few times a week and just chat with them over refreshments. What a relief to have a third uninvolved party to whom to talk and let loose. For the care-giver as well.
When a neighbor, friend or relative of the dependent visits, let the live-in entertain them in his or her room. This will restore some of the liberty lost, invoking the feeling of continuing to retain some control over their own life. At the same time this avoids their being underfoot. The care-giver can also now entertain his or her friends in his own home as freely as before.
Many old people will repeat stories over and over. Just nod and change the subject by telling them one of your favorite stories. They probably won't remember hearing it before, and you finally have an audience to whom you can repeat the story.
Love and respect for the human spirit are as necessary to both care-giver and receiver as the very air we breathe. So much pain and resentment can be lessened with just a benevolent word or action of small significance to those who are not involved. For instance:
When you or others in your family leave the house to go to work or shop, say "good-bye," to the live-in, "I'm going (wherever). See you later." Answer one or two questions they might ask you. Give them a peck on the cheek. It makes your dependent one feel like maybe someone cares, especially if they are from the "old school" and worry a lot about their loved ones. Those few words will ease their minds. Those few words will make them feel that they matter as "persons." "No act of kindness, however small, is ever wasted." (Aesop).
Take a few minutes each day to fuss over your ward, compliment him or her on an outfit, even if it is years old. "How nice you look today... your hair... how fresh and clean you smell (especially if they have incontinence problems).
If the live-in is a diabetic, get them sugar-free foods (cakes, candies, ice cream, etc.). Of course, be sure to check with their doctor on what he or she is allowed to eat. There are so many tasty low fat, low salt, fat-free, salt-free and sugar free items in the supermarkets today, that the restricted live-in does not have to pine while you enjoy eating your favorites, especially in their presence. I know of sugar-free, fat-free angel food cake, sugarless chocolate, "no added sugar" ice cream, sugar-free cookies, so much. Exercising moderation, the restricted live-in can enjoy these foods and you don't have to feel guilty enjoying your foods.
Allow your charge to do as much as possible for themselves. If they like to do light washing by hand, their underwear for instance, buy them a drying rack. Check with them first; some prefer a line, others use hangers. Remember the elderly, like anyone, can be eccentric. Compromise and a sense of humor are indispensable to the care-giver.
Build up the live-in's self-esteem by giving them small chores they can handle; in other words, make them feel needed, useful. Make them feel they are in part paying you back for your care-giving. Again, self-respect, self-worth. The old woman I visited for two years until her passing, sewed beautifully. Her family and even I gave her our mending. She stayed busy and felt needed and useful. She became a contributor.
Often I hear how much the live-in has lost in the move to the care-giver's home. Whenever possible, begin to replenish and replace those lost items and memories with new ones. Tell your charge, "We're going to start anew, rebuilding your life and replacing your losses as much as reasonably possible." Then follow through, even if it's only a little at a time. Don't worry if their room looks a little cluttered. You are rebuilding a life. Inexpensive, light-weight, smart looking closets with doors that will hide the "necessary" clutter are available at most department stores. Be creative. You will be surprised what you can accomplish when you put your mind and your heart to work for both of you.
Family photographs, both new and old, are very important to the frail elderly. These paper images are proofs of their past fulfillments and future hopes, reasserting individuality and self-worth.
All this advice is meant to be helpful, but the most giving and charitable intentions eventually moss over with resentment as time passes and care-giving escalates. Find new ways of increasing the care-giver's and receiver's freedom and self-esteem. Each can come up with new individualized ideas, no matter how absurd they may sound to those not actively involved in the situation. George Eliot is quoted as saying, "What do we live for, if not to make life less difficult for each other." A true spirit of Charity and trust in the Lord together form the strongest foundation for care-giving.
Brainstorming for the
Respite - time-off. Both care-giver and receiver need time away from each other to see new faces, hear new voices, time for renewal. Here friends and relatives can be invaluable. Also fully-referenced, experienced nurse's aides (Medicare, Medicaid, Health Insurance).
Care-receiver - patient, frail elderly, aging loved ones, elderly dependent, survivor.
Care-giver - provider, helper, donor, contributor, benefactor, defender, shielder, safeguard, guardian.
Reminisce - about old days, sense of humor.
The TV Walton family - Unfortunately, I doubt I could ever fulfill that role.
Family Pet - a comfort. If possible welcome the live-in's pet into your family as well.
Update (8/17/2006): E-mail, websites, and surfing the web, the internet as a means of communicating with the outside world for both the care-receiver and care-giver, together and individually. If use of a computer or Notebook can be made available to either, then imagine the added plethoria of opportunities to ease boredom, frustration, loneliness questions answered via the search engines, crafts, recipes, e-books, writing, even publication on line, so much easily available... Where there is determination, there is a way.
"...the care of sick relatives can be transformed into an irreplaceable therapeutic instrument for the ill and become an occasion for everyone to discover precious human and spiritual resources.... The Christian, in the awareness that the glory of God is living man, honors God in the human body both under the captivating aspects of strength and vitality and beauty, and under those of fragility and decline." (Pope John Paul II, Long Island Catholic).
Human Dignity is an inalienable right of all humankind. One day we the care-givers may become the ones needing care. And hopefully our children will remember how we dealt with our charges. We may then hope to reap what we have sown.
by Paula Freda
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