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Caregiving

How to Love Your Loved One When They Have a Life Limiting Illness

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By: Peg Carmany

When someone you love is diagnosed with a life limiting illness, it may be a time when the kaleidoscope of your life suddenly snaps into focus. Or it may be a time when the laser focus of your life becomes scattered. And very likely, there will be some of both. Of the research I have done, and the practical tips I can share from my own experience, these are my favorite pieces of advice:

1. Remember there is no right answer on how you’re supposed to act, and you should not assume that you are supposed to know exactly what to do and exactly how to act. It’s OK to fall apart, but one word of caution about that: try not to let the person who is ill be your primary source of comfort when you do hit a wall.
2. When trying to follow Tip 1, remember that your established role with this loved one doesn’t necessarily switch at the moment of diagnosis. Perhaps only one of you has ever been good under stress? It’s okay to keep it that way. Both of you may take great comfort in continuing on with familiar patterns.
3. Make it a priority to show your love as your loved one is facing what may be overwhelming and scary. It’s not all roses and chocolates – be authentic, be honest, and be yourself. Express gratitude to them for how they have positively impacted your life – and share happy memories – and don’t be afraid to say goodbye, tenderly.
4. Respect their authority to make their own decisions, whether you like it or not. These are their choices, not yours.
5. Keep things as normal as possible. Continue watching your favorite tv shows together or listening to their favorite music, it can be a very meaningful thing.
6. Laugh when you can, and don’t be afraid to poke a little fun at the whole situation. A sense of humor will lighten any mood!
7. And perhaps most importantly: listen, and give advice only when asked. This one can be the most challenging. Often, we are great talkers, but not the best listeners.

Remember, your loved one needs your emotional support. If you are feeling overwhelmed, don’t be afraid to ask for help. Often family and friends who live near by are more than willing to help with errands. And, if you need further support, Wesley Hospice can visit your home, the community you live in, and even hospitals.

We send our deepest condolences to the families who are faced with a loved one being diagnosed with a life limiting illness. And, we hope that with these tips you’ll be able to better love your loved one during this time.

Who’s Involved in Hospice Care?

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Typically, hospice teams work alongside your caregivers to develop an individualized comprehensive care program.  The hospice team usually consists of:

RN Case Manager

This is the person who will coordinate the various elements of your care. Their goal is to coordinate care in the most effective way possible for each individual, and their family.

Hospice Aide

This person can provide care in the home, community or hospital. This can include overnight stays, bathing, and other care to ensure that the individual, and their family, is comfortable.

Social Worker

Social workers often start by assessing the situation. They determine the wants and needs of the families we serve. They also educate individuals and give advice on the dying process. But, they also advocate for the patient’s final wishes.

Spiritual Counselor

Spiritual care can be an important aspect to emotional support. The spiritual counselor is there to develop a plan for each person’s beliefs. Then, they act as resource to carry out this plan.

Medical Director

Any medical needs will be handled by the medical director, in collaboration with the individuals’ physician. This person will ensure that the medical wishes are fulfilled for each person. But, this person’s duties may also extend to the families, and/or caregivers.

Volunteer Coordinator

This person coordinates the volunteer schedule. They match volunteers where with the people they believe they will work best with.

Bereavement Coordinator

This person provides counseling services to those who have been affected by a death.

Volunteers

Hospice volunteers are an important part of the hospice team. They are there to provide a helping hand, support and compassion to the people served. The volunteers may provide transportation, preform household chores, and prepare meals.

Administrative and Support Staff

The administrative and support staff is there as a resource if families need any assistance, or if they have any concerns. These are typically the people to call if you have general questions about insurance coverage, or services.

Hospice care requires a full team working toward a common goal. All of these people are equally important to providing quality hospice care.

How to Keep Your Loved One Comfortable in Their Last Days

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When your loved one has been diagnosed with a life limiting illness it’s important to understand their wishes. One of these wishes may be where they would like to spend their last days. For many people, this is at home or at a close family members house. But, this can be a challenge when it comes to care.

If they wish to be at your home, many challenges present themselves. Even though you would love to, you may find yourself asking, “how am I supposed to take in a family member when I have my own emotions and responsibilities to deal with?” And, this is a completely common and valid response. It can be hard enough to raise a family and continue working, knowing your loved one has a life limiting illness. And, even if they are comfortable in their own home, care is probably necessary.

But, don’t worry. Hospice Care can help. Hospice Care allows individuals with a life limiting illness to stay happily where they are comfortable, while obtaining care. This often takes a weight off family and friends who are already battling the emotions of the situation.

Hospice Care is often available 24-hours and, Hospice Care can visit homes, hospitals, and nursing facilities. Often, Hospice finds that people want to stay where they are comfortable. This could be the retirement community they have lived at for 5 years, your home or their own home. But, no matter the situation, Hospice Care should be considered to help keep your loved one comfortable, and you at peace.

When You Should Start Thinking About Hospice Care

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It’s never too early to begin thinking about end-of-life (EOL) care. Delaying the conversation means that families must make heart-wrenching decisions during a time when the stress may be too much to bear. Starting the conversation about hospice care begins with knowing what hospice care offers and dispelling the myths about what happens when a person is under hospice care. Here are a few tips to help you begin your discussion.

First, it helps to know how hospice works. Hospice uses a team approach that includes doctors, nurses, social workers and others to provide comprehensive care to people with life-limiting illnesses and their families. There are hospice care services that are available in health care communities, or in the home. The purpose of hospice is not to cure an illness, but to provide pain management and compassionate care that allows the individual who is ill to die with dignity.

Thinking about hospice care before you need to can make EOL planning easier. If you or a loved one should develop a life-limiting condition, and a physician tells you that there is no cure, you will already know what to expect from hospice care. It’s also important to note that hospice care is covered by Medicare and Medicaid. Many private insurances also cover hospice care.

Hospice has been beneficial for many families.  It’s not unusual to hear families praise hospice. Hospice staff will go the extra mile to take care of the ill person and provide supportive services for the family. Hospice volunteers help with everything from sitting with a patient while the family takes a much-needed break, to running errands.

Learn all you can about hospice programs in your area. Share the information with your family. Have the discussion about hospice now. When a family member needs it, all a doctor will have to do is make a referral for hospice care, and everything else will be in place.

Things to Know Before You Look for Hospice Care

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When an individual is seriously ill or unable to provide self-care, nothing is more comforting that having a caregiver who is patient, loving, and who has the care recipient’s best interest in mind. However, most people would agree that caring for an ill person for an extended period can result in a caregiver neglecting his or her own care. Family caregivers often experience stress, illness, and burnout after months or years of self-neglect, which is why hospice care is such an important service for families.

When should families consider hospice care?

Hospice care may be an appropriate option when a life-limiting illness results in multiple hospitalizations, or when a health care provider has told you or a loved one that a condition is progressing, and there is no cure.  Hospice care should be considered when caregiver burnout or declining health means that an individual can no longer provide effective care for a terminally-ill loved one.

What you should know before you look for hospice care?

It’s not difficult to set up hospice care, once the physician makes a referral for hospice care. Care begins within a day or two after the referral.

Hospice agencies offer care at home, in long-term care facilities, and at hospice centers.

Hospice care is typically covered by Medicaid and Medicare.  Most private insurances also cover hospice care.

Hospice care is not meant to cure the person receiving care. Hospice provides compassionate care and pain management that enables families and their ill loved ones to make the most of their time together.

Hospice also cares for the family. Hospice staff and volunteers can offer tips for reducing stress, link families to resources, and provide bereavement counseling.

Our hospice service offers on-call care 24 hours-a-day. A nurse can visit the home to provide assistance with medical issues, and volunteers are available to sit with a loved one while family members run errands or take needed breaks.

Things to Consider When Choosing a Hospice Care Center

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Many people don’t fully understand hospice services. In fact, to some people, hospice means a place that people go to die.  Rather than a place, think of hospice is a system of compassionate and comprehensive care for people with life-limiting illness and their loved ones. Services may be provided at a hospice center, health care facility or in the home.

Hospice is not only for the individual who is ill; a hospice medical team creates an environment that helps families and seriously ill loved ones make the most of their time together.

Hospice provides supportive counseling for families and links them to needed resources. Hospice also reduces the financial burden for families. Both Medicare and Medicaid provide coverage for hospice care and most private insurances cover hospice services.

Even if hospice care is not an immediate need for you or your family, it is never too early to discuss future care needs. It helps to know if hospice may be the solution if you or a loved require care for a life-limiting illness before the need arises. Therefore, consider the following tips for questions to ask about a hospice center:

Will the hospice center provide care for me or my family member at home?

If receiving care at home, will I or my family s be able to contact hospice staff for in-home assistance if there is a 3:00 a.m. emergency?

How is the cost of care covered?

When hospice provides care at a facility what types of care will the patient receive?

What is expected of family members when hospice care is provided in the home?

In addition to these questions, you will want to know if the center has a good reputation. The hospice care center you choose should be able to provide references from families who have used the center’s services.

 

Caregiver Stress Relievers During Work

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Those who care for persons who are ill are very susceptible to stress-related illnesses. Whether you are a professional caregiver or a family caregiver, you need to take some “me” time. We’ve all heard the analogy of the flight attendant who warns passengers to put on their oxygen masks before helping others during an emergency. If you feel guilty about having some “me” time, consider the oxygen mask warning–if you want to do your best in taking care of others, take care of you first.

Stress Relievers for Caregivers

If you want to be your best at caregiving, you need to engage in some caregiver care. Whether you work as a caregiver in a facility or care for a family member at home, find ways that you can relieve stress during the times that you are providing care. Try building some activities into your daily schedule that will allow you to relax and break the cycle of stress.

A meal break can make all the difference when you are exhausted from giving care. When you take a break for a meal, use it to the fullest. Eating is one of life’s pleasures. Take time to savor your meal. If you work in a facility, make sure you have another employee cover your patients during your lunch break.  Even if you only have 30 minutes, a meal break is not just time to eat; it is time to rest your mind and body.

Take a brief walk. Taking a 10-minute walk outside provides an opportunity to get some fresh air and clear your mind. As a matter of fact, if you schedule a walk each day, you will look forward to it, and you will return to your caregiving duties with a fresh perspective.

Confide in a friend. Most of us know someone at work who will lend a listening ear without being judgmental. Sometimes you need to vent your frustrations to a friend who can offer you some positive encouragement. A burden shared is half the burden.

Columbus Ohio Hospice Caregivers

Caring for the Caregiver

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Many baby boomers are learning the true definition of the word caregiver.  As your parents, and in my case grandparents are requiring more than just a quick visit every other day or so.  My grandmother is 96 and lives on her own in the family home I grew up.  That sounds great and trust me it is, but all that is required that goes smoothly can be draining, especially when only a few of many family members help out.  You quickly find yourself stressed, and both mentally and physically drained.

Caring for a loved one can be very rewarding, but it also involves stressors.  Caregivers stress can be particularly damaging, since it is typically a chronic long-term challenge.  If you do not get the physical and emotional support you need, the stress of caregiving leaves you vulnerable to a wide range of problems, including depression, anxiety, and burnout.  Moreover, when you reach that point, both you and the person you are caring for suffer.

Learning to recognize the signs of caregiver stress and burnout is the first step to dealing with the problem.

Common signs and symptoms of caregiver stress:

  • Feeling tired and rundown
  • Difficulty sleeping
  • New or worsening health problems
  • Overreacting to minor nuisances
  • Anxiety, depression, irritability
  • Trouble concentrating
  • Feeling increasingly resentful
  • Cutting back on leisure activities

Common signs and symptoms of caregiver burnout:

  • You have much less energy than you once had
  • It seems like you catch every cold or flu that is going around
  • You neglect your own needs, either because you are too busy or you do not care anymore
  • Your life revolves around caregiving, but it gives you little satisfaction
  • You have trouble relaxing, even when help is available
  • You feel helpless and hopeless
  • You are increasingly impatient and irritable with the person you are caring for

Taking on all the responsibilities of caregiving without regular breaks or assistance is a recipe for burnout.  Never hesitate to ask family and friends for help.  Be sure to schedule regular check-ups for yourself to stay on top of lurking health issues.  Be willing to relinquish some control.

Patient and Caregiver Stress Relievers

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When a family member or a dear friend is diagnosed with a terminal illness and hospice has been recommended, stress levels tend to rise. Before you allow stress to take over the time you and your loved ones have left together, remember staying positive is not only important for the patient, but can be equally as important for those involved in providing care to a loved one.

Here are some ways to keep things upbeat and positive at a time when finding the positive in life can be difficult. Trust me, leaving the stress at the door is best for everyone and can help in the healing processes for loved ones in the future.

  • Art therapy – Art therapy can help individuals explore their emotions through the use of various art mediums. It provides an outlet for creative, non-verbal expression of their feelings.
  • Aromatherapy can provide many benefits to patients and family members; some essential oils may help alleviate nausea or fatigue, while others may help with anxiety and depression.
  • Guided imagery, meditation, or other relaxation techniques can help patients and family members reduce anxiety and depression.
  • Music therapy – Music can be soothing, relaxing, nurturing, energizing, and comforting. It may provide the following benefits:
    • Promote relaxation
    • Strengthen family bonds
    • Trigger memories or initiate reflection on one’s life
    • Improve alertness
    • Reduce one’s perception of pain or nausea
    • Create joyful experiences

My mother’s hospice nurses advised that as death nears, it is normal for your loved one to experience anxiety. It is helpful to reassure your loved one that you are there in support, and that although you will miss him or her, it is ok to let go. Receiving permission from loved ones can relieve distress for the patient.

Hospice Services at Methodist ElderCare has a fantastic hospice team available to help you and your loved ones with questions on alleviating stress and anxiety when you are not sure how to move forward. Kenya George at Hospice Services at Methodist ElderCare can be reached at 614-705-0892 or email her at kgeorge@mecsrc.com. She will be able to assist you with any questions or concerns you have.