The most important members of the hospice team are the patient and family. They pick the care plan. Treatments are based on their wishes. And loved ones are usually the main caregivers.
Physical Grief
Grief affects us all in a variety of ways we may not expect. Feeling sad is a normal reaction, but there are often physical side effects that show themselves after a loss. Some of the symptoms are:
- Trouble Sleeping
- Eating Problems
- Headaches
- Etc
These are normal physical reactions to grief. It does not mean you are crazy or have an illness. Physical symptoms should improve as your emotions level out. See your doctor if you are suffering from serious pain or prolonged pain. He or she can find out if this is a symptom of grief or something else.
What you can do:
- Rest. Your body needs rest to bear the physical symptoms of grief. If you can’t sleep, try herbal teas or soft music to help you relax. Avoid taking sleeping pills every night.
- Go easy on yourself. Limit your “To Do” list. It’s okay if you can’t stay focused. Be patient with yourself if you forget things.
- Get regular exercise and eat a healthy diet. Drink plenty of water. Healthy living helps both body and mind.
- Cry. Crying helps let the pain out. Tears help relieve stress, lower blood pressure, and promote healing.
- Avoid negative habits. Alcohol and drug abuse, overeating, or other negative habits will only mask grief. This delays the grieving process. It may be even harder to face the pain later. Seek help if you start turning to these types of things to handle your grief.
Withdrawal
Often times people begin to withdraw from friends, family and the world around them as a normal part of the dying process. This process may begin as early as a week before the death. The person may stay in bed all day and spend more time asleep than awake.
With the withdrawal comes less of a need to communicate with others; touch and silence take on more meaning. People at this point may seem unresponsive and difficult to arouse or may appear to be in a coma-like state. This detaching from surroundings and relationships may be preparation for release and letting go.
How to Manage Withdrawal:
- Plan activities and visits for times of day when the person seems most alert.
- Because hearing remains intact to the end, speak to the person in your normal tone of voice.
- Identify yourself by name when you speak. Tell the person what you are going to do before you do it. For example: “Bob, this is Karen. I’m going to clean your mouth now.”
- Remember not to say anything in front of the person that you wouldn’t say if he or she were awake.
Once a Loss Happens
The time after death can be frantic. Often the journey starts with family, visitors, and a plan. The stress combined with the grief can be too much some days.
A the feeling of loss can come at any time after a passing. At times it can seem unreal or you may feel that you are just a passenger in your life as your body brings you from one day to the next. With all the chaos it can be hard to find time to grieve.
Often having a ritual like a funeral, wake, or memorial service can help the grieving process. Some events are small and personal or even completely unique. If there is no ceremony you can even take the time to remember them in a way that you feel is right.
Holiday Tips for Caregivers
The holidays are ideally a time to connect as a family and celebrate traditions, however, this time of year can be challenging for many families, especially caregivers. While the holidays can be stressful for people caring for a loved one with a terminal illness, they can also be the most rewarding times to express your emotions and share memories.
We’ve compiled a list of “holiday do’s” for caregivers that we hope help make your holidays a little less stressful and a little more joyful
Let it flow
- Do allow your emotions to flow. Accept and don’t be ashamed of whatever emotions may arise at the prospect of not having your loved one at the same event next year. By the same token, please don’t feel guilty as you laugh whole-heartedly at the re-telling of funny family stories.
- Do allow the person in your care to freely express their emotions as well. They are fully justified in feeling whatever they are feeling at this stage of their journey. They may be overjoyed to spend time with a relative they haven’t seen for years and may cry the next minute at the prospect of not seeing their college-aged grandchildren again.
Let it go
- Do let some things go this year…or revise them a bit. Ask someone else to host Thanksgiving this year. You don’t have to put out all 78 Santas and wrap lights around the front trees. Ten Santas and lights around the door is more than enough this year!
- Do delegate holiday tasks that you may have taken care of in the past. Ask a neighbor or your grandkids to hang up those lights around the door. Your brother can make the fudge this year. You already have a full plate. You deserve to enjoy the holidays, too.
- Do allow yourself to miss a few family activities if that alleviates some stress. You don’t have to participate in everything. Check in with the person in your care and see which activities are important to them.
- Do allow yourself to not feel bad about arriving late or leaving early to any family functions.
Share and record
- Do tell the wonderful and silly stories about your loved one that are treasures to share.
- Encourage your family to listen to (and record!) the stories your loved one may want to share.
- Do consider compiling recordings of each guest sharing a favorite memory into a video to share with your loved one. Enlist help for this – a great job for tech-savvy grandkids!
Embrace the moment
- Do take lots of photos and/or videos of your family celebrating with the person in your care.
- Do cherish the small, intimate moments that happen during the larger celebrations.
It’s important to care for yourself and keep your limits in mind during the holidays. Be gentle with yourself and don’t do more than you know you can handle. Let yourself feel the feelings, don’t hold them in for “a more appropriate” time. And don’t be afraid to ask for help. Others should be glad to be there for helping with tasks or just for comfort.
Happy Holidays from our family to yours.
Understanding Hospice
We’re pleased to provide Understanding Hospice, an educational series we plan to post over the next few months that will outline different aspects of hospice care such as:
- What is Hospice?
- Key Questions and Concerns About Hospice
- Truths About Hospice
- Importance of Self Care for Caregivers
- and more!
Be sure to Like our FaceBook page where we’ll let you know we’ve posted a new Understanding Hospice article on our blog.
The Idea of a Good Death
No one likes to think or talk about death and dying. But it’s a reality we all face-more and more people are taking charge of how they will live out their final days. This becoming known as the “good death.”
Through life, we want to have as many new experiences as possible but in the end what really matters are the simple things. This is found in many cultures and known as socioemotional selectivity theory. We simply want companionship. Most importantly, the patient must be content with the decision. Which means, as hard as it may be, ask them what would make them comfortable-giving a sense of control. A “good death” can be achieved just by talking about it.
In recent research, patients and families claim there are three important factors to consider.
Being pain free
Being in a good head space
Patient is in an environment comfortable for them
Hospice’s main goal is helping with all of these factors. With legislation changing constantly, hospice care is becoming easier to choose. Nearly all insurance (private and public) covers hospice care. 80% of patients are cared for at home, making them feel as comfortable as possible. In return, making for a “good death.”
All in all, comfort and being content are the top priorities. Hospice care professionals take pride in honoring the wishes of the patient.
So take the time to think about how you would prepare for your “good death.” What would make you most content at the end?
The History of Hospice
The term hospice is derived for the word “hospitality.” Dating back to medieval times, it was know as a place where ill travelers could stay during their journey. It was until 1948 was the term “hospice” used in medicine. Dame Cicely Saunders created the first modern hospice in London, St. Christopher’s Hospice.
Here is a timeline of the history of hospice.
1965: Florence Wald, then Dean of the Yale School of Nursing, invites Saunders to become a visiting faculty member of the school for the spring term.
1967: Dame Cicely Saunders creates St. Christopher’s Hospice in the United Kingdom.
1968: Wald takes a sabbatical from Yale to work at St. Christopher’s and learn all she can about hospice.
1969: A book based on more than 500 interviews with dying patients is published, entitled, On Death and Dying. Written by Dr. Elisabeth Kubler-Ross, it identifies the five stages through which many terminally ill patients progress. The book becomes an internationally known best seller. Within it, Kubler-Ross makes a plea for home care as opposed to treatment in an institutional setting and argues that patients should have a choice and the ability to participate in the decisions that affect their destiny.
1972: Kubler-Ross testifies at the first national hearings on death with dignity, conducted by the U.S. Senate Special Committee on Aging.
1974: Florence Wald, along with two pediatricians and a chaplain, founded Connecticut Hospice in Branford, Connecticut. The first hospice legislation is introduced by Senators Frank Church and Frank E. Moss to provide federal funds for hospice programs.
1979: The Health Care Financing Administration (HCFA) initiates demonstration programs at 26 hospices across the country to assess the cost effectiveness of hospice care and to help determine what a hospice is and what it should provide
1982: Congress includes a provision to create a Medicare hospice benefit in the Tax Equity and Fiscal Responsibility Act of 1982
1993: Hospice is included as a nationally guaranteed benefit under President Clinton’s health care reform proposal. Hospice is now an accepted part of the health care continuum.
2005: The American Heart Association and the American College of Cardiology release new guidelines about treating heart failure that includes recommendations that hospice care education be provided early in the course of an illness.
2014: Forty years after the creation of Connecticut Hospice, NHPCO and its affiliates celebrate 40 years of hospice care in the US.
Hospice and Cultural Consideration
Houston is known for being the top city for cultural diversity, passing New York City and Los Angeles. Understanding how different cultures approach death is very important. Through hospice, we provide grief services for everyone involved, but cultural practices are often overlooked. There are many transitions that happen at the end of life and through these transitions there things you should consider.
- a patient’s perceptions of health and suffering;
- a patient’s perceptions of death and dying;
- accepted health care practices and remedies;
- accepted religious and spiritual beliefs, practices, and rituals;
- communication patterns and common forms of expression;
- the role of family, relationships
Once these things have been observed, the hospice provider can give the patient the proper care. The patient may believe that pain and death are a part of the journey of life. They may also believe that their family must be involved in all areas of their care. Some have religious limitations or rituals important to their end of life process.
Some may want nondisclosure about the serious illness of their loved ones. The reasoning behind this is discussing death is impolite in some cultures, or they don’t want unnecessary anxiety felt by their loved one. However, in 1990 the Federal Patient Determination Act and Patient Self Determination Act were passed, emphasizing the need for the patient’s consent.
The way to handle these situations is to be respectful of different cultural practices. By having respect and appreciation it will be easier to form a relationship with the patient and their family. Expanding your knowledge of different practices is important as well. The goal of hospice is to bring comfort to the patient and understanding their beliefs is a big part of that.
7 Hospice Myths and Misconceptions
Hospice care isn’t always the easiest thing to talk about and many people don’t have a clear idea what hospice actually is. Even after 25 years, most Americans aren’t aware of the advantages hospice brings. This mostly comes from our country’s resistance to talk about death. However, hospice is undoubtedly this best choice for end of life care. Not only for the patient, but the family as well. It’s so important to talk about and dismiss the myths that surround the hospice community.
The definition of hospice is a type of care and philosophy of care that focuses on the palliation of a chronically ill, terminally ill or seriously ill patient’s pain and symptoms, and attending to their emotional and spiritual needs. Here are seven of the most common myths of hospice
Hospice is a place– Actually, hospice care takes place wherever the patient needs. 70% of hospice patients are cared for in their homes.
Hospice is only for Cancer patients or AIDS patients– Statistically, more than half of hospice recipients are diagnosed with other terminal conditions. Serving families coping with the end-stages of chronic diseases, like emphysema, Alzheimer’s, cardiovascular, and neuromuscular diseases.
Choosing hospice means you have given up– The beautiful thing about hospice is that it helps families share in the end of life process, through personal and spiritual connection. Many families find immense comfort when looking back, knowing they did everything possible to make their loved ones final hours peaceful and comfortable.
Hospice is just for the patient– Hospice is a family-centered program, focusing on the grieving families just as much as the patient. Many hospice providers reach out the community as well.
Hospice is only for the elderly– Hospice care is for all ages. However, most patients are seniors.
Medicare won’t cover services– Beneficiaries can use their Medicare hospice benefits anytime they choose.
Hospice isn’t for people who need a high level of care– Most hospices are Medicare-certified, requiring that they employ experienced medical and nursing personnel with skills in symptom control.