The following are articles that we think may be helpful to you from the National Hospice Foundation�s Caring Connections website www.CaringInfo.org
Caring for Someone
Caregivers provide support to someone who needs help. Caring for a family member or friend is not easy, nor is it something most of us are prepared to do. Learning about being a caregiver may help you provide the care your friend or loved one needs.
Spiritual Questions
There
are certain questions that are regularly asked at Hospice of Santa
Barbara that simply do not have concrete answers. These questions
usually begin with, "Why?" "Why me?" "Why her?" "Why us?" "Why now?" Click Here for an article about these questions written by Clay Napier, Chaplain at Hospice of Santa Barbara, Inc.
Preparing for Giving Care
Caregiving often comes with new responsibilities and unfamiliar tasks, yet most caregivers never receive education or training. In this section you will learn about the decisions you may need to make; ways to enhance your loved one's quality of life; where you can go for help and support; what kind of physical and emotional support you may need to provide to your loved one; and caring for a child with a serious illness.
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Home Safety
Many caregivers are supporting and caring for loved ones in their own homes, while others are caring for loved ones who are living in their own homes. Typically, most homes are not designed for caregiving.
Take some time to look closely at each room where your loved one or friend may spend time, paying special attention to the bedroom, bathroom, and hallways. With advice from your loved one or friend�s healthcare team, you may need to make some changes for the comfort and safety of all who live there, keeping these points in mind:
Safety
- Are there handrails to help move from one room to another?
- Is there a raised toilet seat for easier sitting?
- Are there grab bars near the toilet and bathtub for safety in standing and lowering?
- Are there nonskid mats on the bathroom floor and in the bathtub to prevent slipping and falling?
- Are there nightlights for safety in moving around at night?
- Are there working smoke alarms and fire extinguishers throughout the home? Do you periodically check to ensure they are operating properly?
- Are emergency numbers - Fire, Hospital, 911 - and contact numbers by the phone or a convenient location?
If your loved one or friend is disabled, you will want to ensure that he or she:
- Uses a cane or walker, if needed.
- Has a clear path through each room, that there are no rugs or raised room dividers to trip over, and no slippery floors. You can carpet the bathroom with all weather carpeting to help prevent falls. This can be pulled up in sections, if it is wet.
- Is secure in his or her wheelchair. If your loved one or friend is weak, a tray that attaches to the wheelchair can prevent falls and provides a place for your loved one or friend's drinks, magazines, etc.
- Cannot fall out of bed. If the bed does not have guardrails, you can place the wheelchair or other guards next to the bed, and position your loved one or friend in the middle of the bed so that she or he can turn over without fear of falling.
Equipment
- Does your loved one or friend need:
- A hospital bed or other special type of bed?
- Walker and/or cane?
- Wheelchair?
- Bedside commode?
- Lift?
- Oxygen?
Mobility
- Can a wheelchair fit through the doorways?
- Is a ramp needed on stairs?
- Is it easy to walk or move from room to room without running into furniture?
- Is there a nightlight for safety in moving around at night?
Communication
Quick, easy, and readily available ways to communicate with others are a must for you and your loved one or friend, especially in an emergency. You may borrow or purchase:
- A cordless speaker phone with speed dial memory so that you can simply hit one button in an emergency and get help without compromising the safety of your loved one or friend. Also, phones with a large digital display for easy reading, and ring and voice enhancer, are helpful for people who have hearing problems.
- A cellular phone, if you and your family member or friend travel or spend time outside the home.
- A medical or home alert system which will summon help with the push of a button, if you occasionally leave your loved one or friend alone.
- An intercom or baby monitor so you may listen to your loved one or friend when you are in another room.
- A bell that your loved one can ring to ask for help without yelling.
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Quality of Life
In addition to helping your loved one with decision making and providing physical care, as a caregiver, you can help enhance your loved one's quality of life. The following suggestions can help improve or maintain your loved one's physical and emotional well-being.
In the last weeks of life as the body naturally shuts down, your loved one will need and want less food. Offer small amounts of the food they enjoy. Since chewing takes energy, they may prefer milkshakes, ice cream or pudding.
Meals
As people age, their taste buds diminish so their appetite and desire for food changes. Also, they can experience problems with chewing and swallowing. If this is a problem, please contact your doctor and ask for a nutritional consultation to help you and the person you are caring for.
Clothing
Regardless of our age or physical condition, we want to look and feel our best. Today�s clothing options make that a much easier goal to reach. When buying clothing, consider the following:
- Slacks and skirts that have elasticized waistbands or tie waistbands are easier to get on and off and are more comfortable.
- Clothing with snaps, zippers and/or buttons down the front are easier to manipulate.
- Shoes that will not slip off easily, and have a non-skid tread.
- Interchangeable and color coordinated clothing. For example, slacks and tops that be worn with several others.
- Clothing that is washable and wrinkle-free saves on dry cleaning bills and ironing time.
Exercise
In consultation with your loved one�s or friend's physician and physical therapist, you can plan a routine of exercises.
Exercise, even for bed and wheelchair-bound persons, helps to improve:
Getting and Staying Organized
Keeping track of the many responsibilities of caregiving can be daunting. Organization can help you care for your loved one or friend and maximize the amount of quality time you can spend together.
Making lists of important information helps to keep you organized and will be very useful in case of an emergency. These lists and other needed information can be put into a clearly marked notebook and kept where others can easily find them. This notebook should contain enough information so that someone filling in for you will know exactly what is needed and what to do.
For example, you might make a list of all the things you need for morning and bedtime routines such as bathing items, medications, and clothing. Buy several of these items, and have them close at hand. This saves time and keeps you from having to search or leave the room for them when you are helping your loved one or friend. If you use items in several different places, such as the bathroom and bedroom, have duplicate items stored in these rooms.
You might also make lists of:
- Medical personnel with their area of expertise, addresses and telephone numbers
- Home healthcare agencies
- Other people who can help or fill in, if you need additional help
- Lawyers and financial advisors
- Where needed items are kept, such as thermometers and blood pressure monitors
- Medications, when they are to be taken, and where they are stored
- Exercise schedules and directions
- Emergency contacts in addition to 911
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Planning Ahead Checklist
- Discuss your thoughts, concerns and choices with your loved ones.
- Talk to your doctor about different treatments.
- Establish advance directives (a living will and medical power of attorney) for your state.
- Talk to your healthcare agent, family and doctor about your choices.
- Discuss your choices often, especially when your medical condition changes.
- Keep your completed advance directives in an accessible place.
- Give photocopies of the signed originals to your healthcare agent, alternate agents, doctor, family, friends, clergy and anyone else who might be involved in your healthcare.
- Assess your financial situation, create a financial inventory and determine what end-of-life goals you want to accomplish that involve money.
- Learn about the cost of end-of-life care, how medical bills and expenses will be paid for if you are not able to.
- Make financial decisions such as how you want to give your money and possessions to others upon your death.
- Prepare for the time when you cannot handle money matters; appoint a durable power of attorney.
- Plan your funeral/memorial service.
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Providing Care
As a caregiver you may need to provide for all aspects of your family member or friend�s comfort. This section will help you learn more about the types of care your loved one may need from you or others.
Physical Care
Part of caregiving is providing physical care to your loved one or friend. Ask your family member or friend's doctor, nurses, and other healthcare professionals about the types of care that may be required of you. To help you and your loved one�s healthcare providers, we suggest keeping a log of medications and reactions, physical therapy, other treatments and all physical symptoms such as pain or tiredness.
Some important questions to ask the healthcare team about providing physical care:
- Lifting and Moving: Ask about proper techniques.
How can I protect my back while lifting and moving my uncle?
- Bedpans: Ask about the proper techniques for using and cleaning.
How do I help my mother use a bedpan and how do I clean it?
- Pressure Ulcers: Ask about avoiding bed sores.
How can I prevent my father from getting pressure ulcers or bed sores?
- Incontinence: Ask about protecting the loved one from discomfort.
How can I help my sister with her incontinence?
- Skin Care: Ask about maintaining cleanliness and preventing dryness.
How can I help my brother take care of his skin so that it is clean and doesn�t become dry?
Additional physical care tips:
- If possible, have someone help you with the morning and bedtime routines, if your loved one needs a lot of assistance, since getting up and going to bed often are the most challenging times of the day.
- Practice good oral hygiene that includes tooth brushing, denture cleaning, and cleaning around the gums, preferably after every meal. Good oral hygiene helps to prevent tooth decay, tooth loss and gum diseases, as well as secondary infections that can result from poor dental care. Persons with disabilities or medical problems may need special care in addition to daily hygiene routines.
- If your loved one is disabled, has poor eyesight or problems with memory, you may need to remind them about personal hygiene and/or assist them.
- Older persons with limited movement should be turned in bed on a regular basis to prevent pressure sores. Correct bedding, such as sheepskin or egg carton bed coverings and/or an air mattress, helps to prevent pressure sores. It is important to move older persons with disabilities at least once an hour, even if it is just to reposition them, to do range of motion exercises, and to have them sit in various chairs that offer sufficient support.
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Comfort Care
As a caregiver you may need to provide for all aspects of your loved one or friend�s comfort. In addition to ensuring your loved one�s physical comfort, you can also provide emotional and spiritual comfort.
Your loved one or friend may experience emotional and spiritual pain. They are experiencing many losses including the loss of control over their own life. It is important for you to continue to explain what is happening with your loved one or friend's care, condition, and any other changes. Talk with a social worker, clergy, or spiritual caregiver to help you find resources for additional emotional and spiritual support.
Take some time each day to talk to your loved one or friend about their feelings. Be patient and listen to what they want to share with you. Whatever feelings they have - let them know that they have a right to feel that way; do not try and talk them out of their feelings. Your loved one or friend may wish to discuss their fears or concerns with someone else - encourage them to do so. Offer to contact a friend, counselor or chaplain, and give them privacy when they discuss these issues with another.
The following suggestions are for you, the caregiver to help you enhance your loved one�s quality of life and are some examples of providing emotional and spiritual support.
Meal times
Meal times can be pleasant social events, when you can be together and talk. If your loved one or friend is confined to bed, you can sit and talk while he or she eats and bring a tray in for you. There are a host of eating utensils and accessories that make eating easier for persons with disabilities.
Use an attractive plastic tablecloth or place mats that are easy to clean and a towel, apron or other covering for your loved one or friend�s clothes, if there is a tendency to spill food. Use light-weight, plastic easy-grip glasses, or cups with handles. If there is a lot of spillage, try a drink holder with a lid and plastic straw insert.
Consider having a vase of flowers on the table or next to the bed, if your family member or friend is confined to bed, and open the curtains and let the sun shine in.
Entertainment, Entertaining and Travel
The following is a list of activities that can also enhance the quality of life of your loved one. These suggestions may be activities that your loved one will look forward to sharing with you and others.
- Check the TV listings and choose your favorite programs to watch each day rather than having the TV on nonstop.
- Get large print and talking books from the library and read together.
- Check for special events that are low-cost or free. Invite a friend or family member to join you, preferably one who can drive or help you if your loved one or friend has a disability.
- Go out to lunch or the early- bird specials at restaurants.
- Visit an art-hobby store and see what is available in the way of arts or crafts projects that you can enjoy together.
- Invite family and/or friends for dinner or lunch. If you have limited funds to entertain or do not have time to prepare food, have them over for dessert or snacks; ask each of them to bring something, or to chip in on a carryout meal.
- Plan day trips to local places of interest. Again invite a friend or family member to join you.
- If you have the room, invite family member or friends to come and stay with you for awhile in your home.
- Check colleges, religious organizations, and community centers for free courses and other activities.
- Visit museums, galleries, botanical and zoological parks or a petting zoo.
- If appropriate, get a pet. Your local shelter or Humane Society has many pets available for adoption.
- Get a computer with Internet access so that you can e-mail friends, join in chat rooms, learn about things that are of interest, and enjoy computer games.
- Many fraternal, religious, and social organizations have activities specifically for older people. This can be a great way to extend your circle of friends and supportive network.
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CAREING FOR A CHILD WITH A SERIOUS ILLNESS
Talking with Your Child about His or Her Illness
No matter how young or old a child is, each child handles illness and treatment in unique ways.
You may feel like there is so much to talk about with your child that you don�t know where to begin. You may also have difficulty getting your child to open up and share how he or she is feeling and coping with the news about the illness.
The following are tips that may help you talk with your child about illness and treatment:
- Let your child know you will always love him or her no matter what he or she may might say or think. Repeat this often.
- Use comforting language and a tone of voice that expresses confidence and warmth.
- If you don�t feel completely comfortable talking about goals and hopes, take a few moments to think about how you have talked about other difficult issues with your child and draw upon that experience. Try to use those same ways to engage your child so he or she feels safe.
- Trust your instincts to help you determine how much to say and when. The right moments will appear and when they do, you can talk with your child lovingly and confidently.
- If your timing is off, just be patient. Your child will let you in when he or she is both able to talk and needs to do so.
- Young children naturally focus on more concrete information. Make sure your child understands the plan for today and what�s going to happen in the next few hours or the next couple of days.
- Older kids often try to go it alone. They may find it easier to talk to peers with similar medical conditions. Talk to your child�s medical team about appropriate chat rooms and making contact with other children with similar experiences.
- Reassure your child that you will do whatever you can to prevent pain and help him or her cope with any changes.
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Talking to Your Child's Doctor: When Your Child Has a Serious Illness
Before an appointment, write down your child's symptoms and your observations, such as:
- Has he or she had a fever?
- Does he or she have new symptoms?
Make a list of your own questions and concerns before the visit. Help your child prepare a list of questions for the healthcare team before visits and practice going through the questions to help your child become confident about speaking up when something is not understood.
Take a pad and pencil with you to your appointment so that you can write down what your doctor says and review it later when you have more time to digest the information. A tape recorder is also helpful. Better yet, have a friend or family member go with you to take notes.
Make sure you understand the illness or symptom and the treatment options. Ask your doctor questions, such as:
- Does my child need any new testing, rays, cultures, blood work?
- How do you know he or she has [diagnosis]__________?
- Are there other names for my child's condition?
- How will this condition affect my child's body?
- What treatment do you recommend and why?
- What are the side effects of treatment?
- Are there other alternatives?
Keep communication open during healthcare visits. How much and when to share information regarding your child's condition is an important topic. Ask your doctor and the team caring for your child for guidance as they begin to know and understand your child. Discuss ways to help your child feel in control at a time when so much seems beyond control.
Don't be afraid to give the healthcare team feedback if they are not getting through or are confusing or frightening your child. Medical talk confuses most adults, let alone children who may be scared by their doctor and other healthcare workers.
Remember, you don't have to get it all in one visit. Most illnesses, especially serious ones, evolve with time and so does the doctor�s understanding both of the illness and of your child. Ask if the doctor doesn't offer when you call or visit with more questions.
If you need things repeated, ask again. Don't be afraid to ask to have information repeated as many times as needed. Your child's doctor will want you to have a good understanding of the diagnosis and recommended treatment.
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When Your Child is in Pain
No matter what age your child is, when he or she feels pain, you hurt too. As a parent, you know your child best and are most familiar with any changes, or signs of discomfort and pain. It is important that you give this information to your child�s medical team, and make them aware of the changes you have noticed, as well as subtle differences that you can�t quite put your finger on. This information will help ensure that your child gets the pain relief he or she needs and deserves.
- When your child is in pain, try to distract him or her from the discomfort. One way is to help your child imagine a peaceful or special place using his or her senses such as sight, sound, and touch to relax.
- Use stories and books to distract and redirect your child's thoughts. Let him or her choose one from home or bring several if he or she is hospitalized.
- Allow him or her to have a comfort object, such as a bear, doll, animal or headset with music while getting tests, procedures, etc.
- Play tapes or CD's with relaxing sounds of nature or music-nature combinations.
- Comfort your child with gentle massage, or hold his or her hand quietly.
- Maintain a positive outlook for your child and offer encouragement no matter how you are feeling.
- Give other caregivers information about what they can do to make your child comfortable when you are not there.
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CARING FOR THE CAREGIVER
Acknowledging You Need Assistance
As caregivers, we sometimes become so involved in the day-to-day efforts to keep things going we may forget to let others know we need additional assistance with providing care, or just need a break from the work of caring for someone.
Some ways to make your needs known include:
- Work Options. If you are a working caregiver, it is important to discuss your needs with your employer. Telecommuting, flextime, job sharing or rearranging your schedule can help to minimize stress. Increasingly, companies are offering resource materials, counseling, and training programs to help caregivers.
- Involve Older Children. Older children living at home may be able to assist you and/or your loved one. Such responsibility can help young people become more empathic, responsible, and self-confident and give you needed support.
- Ask Others to Help. You can and should ask other family members to share in caregiving. A family conference can help sort out everyone's tasks and schedules. Friends and neighbors also may be willing to provide transportation, respite care, and help with shopping, household chores or repairs.
- Create a list of things that need to be done, such as grocery shopping, laundry, errands, lawn care, housecleaning, or spending time with your loved one or friend, and put it on the refrigerator or near the front door. If someone says, "let me know if there is anything I can do to help," you can point to the list.
- Take a break from caregiving. Even if it is only 15 or 20 minutes a day, make sure you do something just for you.
- Exercise. Whether it is a 20 minute walk outside or taking a yoga class, exercising is a great way to take a break, decrease stress and enhance your energy.
- Eat healthy. Your health and nutrition is just as important as your loved one's, so take the time to eat well. If you are having difficulty doing that, ask for help and get others to fix meals for you.
- Subscribe to caregiving newsletters or list serves for support.
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Respite-Taking a Break
Respite provides caregivers a break from their daily responsibilities. Respite can cover a wide range of services based upon the unique needs of the caregiver.
Respite might mean:
- Medical or social adult day care for the loved one or friend
- A short-term stay in a nursing home or assisted living facility for the loved one or friend
- A home health aide or home health companion
- A private duty nurse
Respite for the caregiver might be:
- Giving the caregiver a short break for a doctor's appointment or to go shopping
- Allowing the caregiver the opportunity to nap, bathe, or otherwise rejuvenate
- A break to attend a church service or see a movie
- Taking a much needed vacation
- Pampering oneself with a hair appointment or manicure
- Scheduling elective surgery
- Simply visiting friends or other family members
However you choose to take a break, make sure you do it often enough to maintain a healthy balance between caregiving and your personal needs.
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