For Caregivers

i. Caregiver Stress

When someone close to us starts to face the realities of an illness advancing, many of us will begin to indicate ourselves as a caregiver. Hospice can allow us to do just that, for one of the many choices available with hospice care is the option of a family member serving as a caregiver.

With the end goal of ensuring the greatest possible care for your loved one, support from others will be very important. Consider pursuing help from other family members, friends and even neighbors who may be willing to help. Though asking for help may be tough, the benefits for you and your loved one will overshadow your hesitations. You are likely to find that many are glad to help, and may be waiting for you to need them.

It is important as a caregiver to remember to set some time for yourself and to take care of your own needs. Remember, the care that you give your loved one suffers if you are not in the best possible place, both physically and mentally. It is vital that you remain healthy and able to provide your loved one with the best care you can and that begins with taking care of yourself.

Tips to Relieve Caregiver Stress

Recognize the signs of caregiver stress: sleeping or eating problems, anxiety, headaches, depression, guilt, and muscle fatigue or tension are just a few.

· Ask for help from friends and family. Some would–be helpers hesitate to offer because they don’t know your needs.

· Stay connected. It is important to maintain relationships with others and not just the loved one in your care.

· Keep a journal. Talk or write about your feelings, whether they are good or bad. A regular record of events and emotions will help you recognize stress before it becomes a problem.

· Learn all you can about the illness. What can you expect and what new issues might arise.

· One thing at a time. Break a challenge into smaller parts.

· Take time away. It may be difficult, but try to find time for you. Don’t completely isolate yourself in the caregiving role. Take time for your hobbies, they will help take your mind off the situation and responsibilities even if it is just for an hour or so a day.

· Talk to others. Look for support groups. It often helps to speak to others who are in a similar situation and can share your frustrations, feelings and concerns.

· Celebrate your successes. Allow yourself to feel good about your efforts. This is not a role that demands absolute perfection, take pride in what you are doing for someone else; it really is a big deal.

· Breathe. Take a deep breath, gain perspective. You are giving the best part of yourself to help someone you love. One day you will be able to look back and know what you contributed.

· Humor. Stay in touch with your sense of humor. Sometimes laughter really is the best medicine.

ii. Avoid Feeling Overwhelmed

We all have the greatest intentions when taking on the position of a caregiver for a loved one facing advanced illness. In different ways it is a gift we can give to them, one that exhibits our compassion, love, concern and connection. It also lets us, as caregivers, feel that we have some sense of control, that we took on an active role and did our part. Though we may try very hard to be a superhero, in reality caring for someone facing a life-limiting illness will not be a cake walk. But you can be prepared yourself for this important role by considering concerns you will face and finding out various ways to keep everything in balance. Taking care of yourself will help you care better for your loved one.

Consider a Dose of Reality

An evaluation of all your daily demands will help you set caregiving objectives you can realistically maintain. Between the demands of family and work, you simply will not be able to be everything for everybody. And even though it may seem that your loved one’s needs are more significant than the needs of your own home, spouse, or job, it is important to maintain balance.

It is important to be realistic about your daily level of involvement when taking care of your loved one. You do not want to ignore your family or put your work at risk. Additional stress could begin to take a toll on you personally. It is understandable to want to be by your loved one’s side every day and personally provide for every need, but it is important to maintain your day-to-day life as well.

Scheduling For Needs

Scheduling that works for both you and your loved one will be a vital part of planning for long-term care. While it may seem vital for you to be with them for every doctor appointment consider letting friends, other members of the family, and church members take your place when you need them to.

Even if you live with the one in need of your care, set schedules for regular time apart. This will help you regain your perspective and make you better at caring for them when you are together. It will also give your loved one time to speak to others, share feelings and emotions they may not be able to share with you and allow them to feel less of a constant burden. Remember, they may need interactions with others as well.

Plan Conservatively

In the beginning of long-term care of a loved one, be conservative. You can always increase the frequency and/or length of visits if you find that you or your loved one needs more time together. You don’t want to start out with an overwhelming amount of time and attention, and most likely neither does your loved one. Start off slowly, and determine any changes needed as you go. You can’t do everything, but you can do what matters most: give the loving attention that your loved one needs.

Ask for Help

Although it can be difficult to ask for help, and just as difficult to accept offers, it is critical to ask for help when you need it. Learning when to ask can be difficult also, since women often tend to take on too much and give too much of themselves. Likewise, now is the time to learn when to say ‘no’. Eventually, the need will arise for you to say ‘no’ to a request made by your loved one, or even another family member. You simply can’t do everything and saying ‘no’ to what you consider to be less important will allow you to better handle the things that you find more important. If saying ‘no’ has always been difficult for you, try practicing in front of the mirror, just begin getting the word out. Then find a solution to the problem, a solution that doesn’t involve you and your time, mind, and resources. Finding other solutions will help you say ‘no’ without feeling guilty something went undone.

Stay with Your Plan, Keep Your Resolve

Sticking to the plan can be hard. And it is often made more difficult by loved ones who may question you or criticize you for not ‘doing more.’ It is easy for others to look from the outside in and have no real clue about the difficulties and demands of the caregiving role. Don’t be influenced by what others say or how they feel unless they are directly involved in your loved one’s care and their concerns are relevant.

The care you provide for a loved one may become their emotional equivalent of love and care, a sign that they are a priority in your life. Remember it is really about being the best you can be in this often new and unexpected role. And that means staying balanced. Take comfort in knowing you are in fact doing your best, don’t let the impressions of others or feelings of guilt throw off the balance that you need or lose your perspective.

In the end, embarking on the role of caregiver will be a journey that brings you joy and peace. You will capture memories you can take comfort in, reflect on the time it gave you together and gain a sense that you provided something special to someone you love.

iii. Accepting Support

When people ask family caregivers, “What can I do to help?” many caregivers don’t know how to answer. Many of us are pretty reluctant to actually assign work to others, even others who are more than willing to really help. Because of this we miss out on much needed help and support.

You may admittedly be feeling overwhelmed with juggling work, children, and the responsibilities of your own home while caring for a loved one with an advanced illness. But moving from feeling overwhelmed to actually accepting help is often something many of us never do.

There are many reasons why it may be hard to accept support. One of the main reasons is the fear that those who are offering really don’t mean it. Many people want to contribute for no other reason than they simply get great satisfaction by helping others. It actually benefits them in a way that might not be apparent. Many may be looking for ways to fill their day, maybe they miss working full time, are dealing with empty nest syndrome now that the kids are grown or just looking for new ways to feel like they are contributing. They’re not viewing helping as a burden, but as an opportunity.

When someone offers to help, take a baby step. Begin by asking them how they’d like to help. Let them suggest possible ways for them to be involved and how they feel they can best contribute. Start a list of who can help, their contact info and what they’d like to do. Then consider what tasks you’d feel OK to give up. For instance, you might not have to take your loved one to every doctor appointment or be there for every visit of the hospice nurse. Letting someone run errands for you is a good way to begin accepting help. You are not giving up something that is important and only you can do. Have someone come sit with your loved one. This will free you up to do other things and gives your loved one someone else to talk to, allowing them to feel more connected to the outside world.

Accepting help may become the only way for you to provide the care you not only want to give but that your loved one deserves. Your loved one will benefit from your ability to say ‘yes’ to those who offer to lend a hand. They may feel like a burden and begin to restrain from letting you know their needs. Allowing help from family, friends or church members lets your loved one feel a little less dependent on you. It allows them to feel less of a burden.

Accepting help will also most likely help your relationship with your loved one. If you become over-burdened you may become less patient, less in tune to their needs and less able to provide good care. Being overwhelmed will hamper your ability to enjoy your time together and rob you of special moments you will come to cherish in the days ahead. Accepting help will let you be better for them.

iv. Respite Care, Have a Break

Whether you understand it or not, when becoming a caregiver yourself, you are living someone’s illness and living it almost every waking minute. Though many caregivers feel living this role was one of the best things they ever did for themselves and for their loved one, you cannot entirely sacrifice yourself in the process.

You need to get help and get help early. Many experts in caregiving advise that if you’ve been caring for a loved one more than a month or two, it is time to consider respite care. Tell your hospice nurse that you are interested in planning for respite care. If you are worried about leaving, your hospice nurse can comfort you by giving you an honest assessment of your loved one’s condition. Do they have months, weeks, or only days left? Of course if it is days, you’ll want to stay. But if it is weeks or months then taking a break may be the best plan.

Respite care, in reality, is care for you—the caregiver. Respite care is short-term, temporary relief provided for those who are caring for a family member and is offered by hospices. When respite care is arranged, it can either be provided in the home or, sometimes your loved one may be moved temporarily to a higher care facility. Respite care provides the much needed, temporary break from the often exhausting challenges the family caregiver faces. Respite has been shown to help sustain family caregiver health and well-being, and avoid or delay out-of-home placements. Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous caregiving.

There are several types of respite care that may be available to you and your loved one.

In Home Respite

If keeping your loved one at home is practical and important, you can arrange for in-home respite care. A temporary caregiver would come to your home and take over your responsibilities, your loved one, what their needs are, and their normal routine. In this model, friends, relatives and paid professionals may be used. Depending on the state, Medicaid or Medicare may be used to help cover costs.

Higher Care Facility

Another option is to use a specialized, local facility where your loved one may stay for a few days or a few weeks. Many higher care facilities provide temporary respite care.

Emergency Respite Care

Since life is unpredictable it is good to pre-plan for emergency respite care. This allows you to have options if you suddenly have to be away for things like work-related issues, funerals, or if other family members or friends may need you, etc.

Many adult day care, health centers, and residential care facilities provide emergency respite care.

Sitter Companion Services

Sitter companion services are sometimes provided by local civic groups, the faith community, and other community organizations. A regular sitter companion can provide friendly respite care for a few hours, once or twice a week. This service will allow you to get away for a few hours and take care of other things or just have some much needed ‘me time.’ Most likely your hospice provider can arrange for sitter companion services. Many hospices have highly-trained volunteers available to sit with your loved one.

v. Adult Children Become Caregivers

Human nature dictates that we often experience child-parent struggles. The blurring of identities as our parents advance in age and we become their caregivers frequently intensifies these struggles. This can create tremendous strain on our ability to manage the day-to-day stresses of these new roles. But there are some relatively simple ways to handle the changes in your relationship and make the transition easier on you both.

Simply stopping and counting to 10 before responding to your parent will afford you precious seconds to calm yourself and potentially avoid an unnecessary argument. Those moments of deep breathing and hesitation can also give you an opportunity to more fully understand your reactions to stresses in your relationship. This, in turn, will help you transform your fight-or-flight instincts into more positive responses that can ultimately strengthen and deepen your bond with your parent.

If your parent has a tendency to use verbal negative cues to trigger you into offering an angry response, consider turning the avoidance of these “hooks” into a personal contest. See how many times you can refuse to take the bait, considering each time you pass up a negative hook an internal private victory. Understand that the best way to win an argument is by peacefully and calmly ending the discussion altogether.

Sometimes old patterns and routines can lead to falling into the same old traps and ruts. Try changing things up with new scenery and unexpected activities. This might refresh your outlook and help you and your parent see each other in a different, more compatible light where communication is easier and calmer. Along these same lines, introduce your parent to the adult you by involving them in your work, professional interests and colleagues if possible. By helping them see you as an adult instead of a child, it may be easier to break the old parent-child trap and talk with one another rather than at each other.

As your parents age, it’s important to maintain an open mind about your interactions with them. Understand that the aging process is difficult on them as well. Their lives are changing, as is yours, and these changes are often frightening and complicated. The fewer expectations you have on your relationship, the easier it will be to remain flexible and adaptive as you both journey through this unfamiliar territory. To remind yourself about the good times during those moments when things are less pleasant, keep a record of any positive interactions you have with your parents. You might even want to write a note to them during these times, to share your good feelings and happy experiences as a part of their lives.

vi. When They Won’t Eat

Food plays such an important role in American life, not only for sustenance, but it is a huge part of our social framework. During the most important milestones in our lifetime, food becomes central to our gatherings. Picture in your mind birthday parties, Thanksgiving, New Year’s parties, and Memorial Day picnics. What do you see? Friends and families gathered around enjoying each other’s company, laughing, and telling stories while sharing a meal. When you return home after a long time being away, what do Moms want to do? Feed you. Meal preparation and eating keeps us together as families and is so central to our social gatherings that food takes on a new meaning during illness.

Since eating is such an important activity for families, the slightest change in your loved one’s appetite may be upsetting to you. A change in eating pattern can stem from something quite simple, like room temperature, or it could be from a complex medical problem, so it’s important to discuss eating pattern changes with your loved one’s doctor or hospice nurse.

Here are a few factors that may be affecting your loved one’s appetite along with some suggestions that may help:

· Impaired vision makes food appear bland and boring. Using colorful foods with different textures, separated on a plate will increase the visual appeal of the meal. Keep the food as whole as possible when first presenting the plate. Cut, chop or mash the food after it is presented. As they say, presentation is everything.

· Reduction in smell and taste again makes food seem bland and boring.

· Adding very aromatic spices, herbs, extracts, lemon and garlic will help stimulate an appetite.

· Medications may alter your loved one’s taste or reduce their appetite. Ask your loved one’s doctor or pharmacist to review their medications for these side effects and request substitute medications, if possible.

· Difficulties chewing may come from teeth, gum or denture problems. A dentist should be consulted to look at problems and make corrections or adjustments made. Chewing problems can be resolved by replacing raw vegetables and fresh fruits with cooked vegetables, canned fruit or juices. Substituting tough meat with soft foods including ground or shredded meats, cooked dry beans, fish and eggs may increase intake. Also mashed potatoes, mashed sweet potatoes, oatmeal, egg salad, and custards are good choices if your loved one is having issues with chewing.

· Constipation causes a feeling of fullness, which reduces the appetite. If your loved one is already constipated let your hospice nurse or doctor know. Constipation may be caused by medications, reduction in activity level, and decreased fluid intake. There are many good, over-the-counter laxatives which they can recommend. Constipation can be prevented or lessened by increasing fluid intake (limit caffeine which can worsen constipation through dehydration). Increasing fiber intake through fruits, vegetables and grains (20-35 grams daily), limiting low fiber foods, daily exercise, establishing a bowel routine, and adding fiber supplements if fluid intake is good may also help.

· Dining alone does not stimulate an appetite. Eating is a social event and is best when enjoyed with another person or group. Recruit family members and neighbors to bring in meals to share.

· Nausea can be caused by medications or even by certain nutritional supplements. If nausea is limiting intake the following suggestions may help:

· Increase fluid intake between meals, but limit fluids with the meal, especially cold liquids. Sipping hot tea may help.

· Limit foods with strong or lingering odors (fish, fried foods).

· Ask your loved one to ask for what they want and when they want it.

· Encourage them to eat small portions several times a day.

· Sometimes liquids are better than solids.

· Sometimes solids are better than liquids.

· Do not force your loved one to eat.

· Try soft foods like gelatin, soup, broth and sherbet.

· Try bland foods such as BRAT diet for severe nausea (bananas, rice, applesauce and toast).

· Avoid heavy desserts and sweet syrups.

· Hard candy, popsicles and ice chips help produce saliva and keep the mouth moist.

Finding the cause of a loss of appetite and correcting it is key to maintaining wellness. A reduced intake of calories, vitamins, minerals and fluids contribute to malnutrition and dehydration.

However, as difficult as it is to deal with a loved one’s decrease in food and fluid consumption, it is a natural occurrence at the end of life. The body is no longer in a survival mode so patients typically do not experience hunger or thirst and stop eating and drinking naturally. When a loved one stops taking in food, it is the family members who struggle most with accepting the situation. Allowing the loved one to go without food and fluids go against everything we know to be true for recovery thus we are forced to face the inevitable loss of our loved one. Various values and belief systems lead some patients and families to choose artificial nutrition and hydration. It’s important to find out early what your loved one wanted at this juncture and communicate those wishes with their healthcare provider.

vii. Have a Secure Home

Preventing Falls

A primary safety concern with the elderly is the prevention of falls. Falls are the leading cause of injury or even death among the elderly.

Fortunately there are many ways to safeguard your home against potential falls.

· Remove all tripping hazards such as books, shoes, toys, electrical cords, etc., from the floors.

· Remove all throw rugs.

· Remove furniture from high-traffic areas if possible, and pad any sharp edges with plastic bumpers.

· Remove the casters to stabilize movable furniture items.

· Remove unstable tables and stools to avoid tipping, and put fragile or breakable items away.

· If your parent uses a cane, you may also wish to attach a loose wrist loop to the handle. This will prevent your parent from having to bend down to retrieve a dropped cane.

· Polish linoleum and wood flooring using only non-slip floor wax.

· Textured strips can also be placed on linoleum to provide better grip, and all spills should be cleaned up immediately.

· Add grab bars or handrails along staircases and hallways to help prevent falls, and grab bars next to closet doors to support your parent while dressing.

· Place colored, non-slip strips along areas where floor levels change, such as stairs and doorway thresholds, to help clearly identify where your parent will need to step up or down and prevent stumbles.

· Make sure the bed and chairs are easy to get in and out of, and that chairs have solid and supportive arms and backs.

Lighting the Way

Lighting is another important safety consideration in the prevention of falls. It is easier for elderly eyes to adjust if there are consistent lighting levels throughout the house, using low-glare bulbs and shades. Night lights are helpful to guide your parent along stairways as well as from the bedroom to the bathroom and kitchen. Light switches placed at both the top and bottom of stairs will ensure good visibility. Install a light switch that can be reached from the bed to prevent your parent from fumbling in the dark if they awaken in the middle of the night. Illuminated light switches are much easier to locate in the dark, or you may choose a clap-on, clap-off lighting system. Flashlights should be easily accessible in all rooms of the home, especially the bedroom.

Bathroom Safety

The bathroom can be a particularly treacherous room for the elderly, but is easily adapted for safety. Consider taking these safety measures:

· Adding an elevated toilet seat with handgrips on both sides, and toilet tissue within easy reach can ease the strain on an aging parent’s back and legs, thus reducing the risk of falling.

· Equip the tub with a bath chair, grab bars, or a handrail placed at both sitting and standing levels.

· Use secure non-slip mats in the tub or shower, along with a wall-mounted liquid soap dispenser to keep your parent from having to bend down to retrieve a dropped bar of soap.

· Consider changing to hand-held shower devices. They are easier to use when mobility is limited.

· If your parent does happen to slip in the tub, a shower curtain securely mounted into the wall will offer more support than a pressure-hung curtain that will pull away easily.

Temperature Concerns

As we age, our sensitivity to hot and cold temperatures may wane. Anti-scald devices can be installed which will automatically shut off the water if it gets too hot. Faucets with a single control for hot and cold water may be easier to adjust for temperature. You should also ensure your parent has sufficient robes, blankets and warm clothing available to maintain their body temperature without the use of dangerous space heaters.

Staying Safe Outdoors

Outside the home, make sure all walkways, paths, steps, decks, porches, and entryways have good lighting, solid traction and handrails for support. Keeping sand or rock salt by the door is a good idea for potentially icy weather. If your parent is wheelchair-bound, ramps can be installed for easier access. Exterior motion sensing floodlights will light your parent’s way and avoid the necessity of fumbling with keys in the dark.

When it comes to safety in the home, prevention really is the best medicine. Elder-proofing your home before your aging parent moves in will ease the transition, helping them maintain a sense of independence and affording you the peace of mind that comes with knowing you’ve provided every safeguard for their well-being.

viii. Additional Caregiving Techniques

If you are preparing to care for a loved one, here is a list of some things you may want to have on hand to prevent running to the store at the last minute:

· Dressing supplies as instructed by the discharge planner at the hospital

· Skin lotion for back rubs and to keep the skin from becoming dry and itchy

· Prescription medications filled ahead of time (yours and your loved ones)

· Over the counter medication for mild pain and fever (acetaminophen, ibuprofen)

· Disposable gloves

· Egg crate mattress pad if bedridden

· Thermometer

· Juices (citrus may be hard on the stomach and may interact with certain medications)

· Gelatin cups, pudding cups, popsicles

· Quick to prepare foods—freeze meals ahead of time if you have plenty of notice

· Bendable straws

· Bed protection pads

· Heel protectors if bedridden

· Extra pillows especially if bedridden, for helping to position them on their side

· Flashlight

· Electric company number at hand if loved on is on oxygen or other electrical devices, in case of outage

· Have emergency plan in case of inclement weather

· Electric shaver, if caring for a man

· Small, soft toothbrush and toothpaste

· Pre-moistened oral swabs and mouth rinse

· Lip balm

· Bath water tub, washcloths, towels, non-drying soap, if unable to get to shower

· Dry shampoo if unable to wash hair

· Shower stool and hand held sprayer if able to get to shower

· Heating pad for the caregiver

Tips to help you keep your loved one comfortable:

· Help them changes positions often (every 2-3 hours) if bedridden to prevent bedsores.

· Massage the skin over bony areas to increase circulation and prevent bedsores. Make sure there are no bumps or wrinkles underneath them. The egg crate goes between the mattress and the sheets.

· Encourage your loved one to get out of bed and to a chair for meals if possible.

· Use heating pad only on fully awake loved ones and never place a heating pad between the patient and the bed, only on top of the injured area.

· Use body powder sparingly, if at all. Do not use if she or he has a urinary catheter.

· Keep skin clean and dry at all times.

· Oral care is important for health and comfort. Brush your loved ones teeth and tongue twice a day with a small amount of toothpaste. If they are unable to assist, you may need to use pre-moistened swabs.

· Remove soiled clothing and bedding as soon as possible.

· A change in position in bed may help with anxiety, discomfort and tension.

· Elevate the head of the bed or have your loved one sit up in bed, especially when drinking liquids.

· Encourage as much independence as possible. Offer choices so they are active in their care.

· Offer fluids, water, juices, and gelatin cups throughout the day. Make sure to get enough liquids to prevent dehydration. If you wait for them to ask due to thirst, they are probably a little dehydrated. Limit caffeinated drinks (coffee, tea, dark soda) as they can cause dehydration.

Tips for taking care of yourself:

· As a caregiver, you courageously and lovingly face each day with tasks which can be overwhelming at times. Each day brings new challenges as you cope with changing levels of ability as the illness progresses. Research demonstrates that caregivers often have an increased risk for depression and illness, especially with inadequate support from family, friends and the community. You must take care of yourself to continue to help your loved one through their illness.

· Caregiving is a job. Reward yourself with breaks throughout the day. Fresh air and a few quiet moments can recharge you.

· Keep a list on the refrigerator of things that need to be done. Add to it as you go through the day. When people offer to help, accept the offer and go to your list on the refrigerator and select those most pressing or let them choose from the list. This method will help you remember what needs to be done and is very helpful to your friends. You may find your friends go straight to the list when they come to help out.

· Take care of your back as all the turning and pulling may aggravate back pain. A heating pad may help.

· Nap when your loved one naps.

· Ask for help from neighbors, friends and family.

· Watch for signs of depression and seek help when you need it.

· Trust your instincts. Most of the time they’ll lead you in the right direction.