Caregiver Tip: It's all right to accept help

·         When people offer help, accept the offer and suggest specific things that they can do.

About Hospice by Healther Ligus, Provider Relations, Crossroads Hospice

Hospice is a philosophy of care. It treats the person rather than the disease and focuses on quality of life. It surrounds the patient and family with a team consisting of professionals who not only address physical distress, but emotional and spiritual issues as well. Hospice care is patient-centered because the needs of the patient and family drive the activities of the hospice team.

Roles and responsibilities of a hospice team:

Physician. The physician is responsible for identifying the patient’s need for hospice and making the referral for hospice services. They are encouraged to remain involved as a member of the patient care team, and to actively participate in the hospice plan of care.

Hospice Medical Director. The hospice medical director provides an oversight of patient care and support to the hospice team. The hospice medical director attends a team conference to discuss the plan of care by assisting in establishing goals, and participating in decisions regarding patient care.

Registered Nurse Case Manager. The registered nurse case manager coordinates the plan of care with the physician and hospice medical director through initial and ongoing nursing assessments. The nurse visits the patient two or three times a week, or as needed, to ensure all distressing symptoms are effectively managed and that patient and family needs are being met. The RN supervises all care provided by the licensed practical nurse and home health aide, and coordinates care with the other members of the hospice team to ensure patient and family spiritual and psychosocial needs are met.

Social Worker. The hospice social worker provides initial and ongoing psychosocial assessments of the patient and establishes a psychosocial plan of care. The social worker normally sees the patient once or twice a month to provide emotional support and ensure patient and family psychosocial needs are being met. The patient/family or any member of the hospice team can request additional psychosocial visits as needed. The social worker can provide assistance to the patient and family such as helping the patient with a Do Not Resuscitate (DNR) order, assisting with finding community resources, and making arrangements for nursing home placement or transfer to inpatient care facility. The hospice social worker can also provide counseling to the patient or family in times of crisis.

Chaplain. The hospice chaplain provides spiritual support to the patient and family as needed. The chaplain visits once or twice per month or more often if requested. The care provided by the hospice chaplain can address religious issues, however the focus of care is more spiritual, in nature, than religious. Care by the hospice chaplain is non-denominational.

Bereavement Counselor. The bereavement counselor not only supports and guides the family through the bereavement period after the loss of a loved one, but can also help the patient deal with the grief associated with declining health. The bereavement counselor can provide bereavement services to the family up to a year, or longer, after a loved passes.

Home Health Aide. The home health aide assists the patient and family with personal care needs and light housekeeping. They also teach family members the correct and safe method for providing personal care to the patient. The home health aide supplements the care provided by the nurse case manager.

Hospice Volunteer. The hospice volunteer provides companionship and support to the patient and family. All hospice volunteers are required to attend volunteer training at the hospice. The volunteers frequently perform needed errands and light housekeeping for the patient and family.

Hospice Myths and FAQ's:

There are many questions, and myths, about hospice. Below are answers to some the most common questions asked. They will give you get a better understanding of what hospice is and how it can benefit patients and their families.

What is hospice care?

Hospice is a philosophy of care. It treats the person rather than the disease and focuses on quality of life. It surrounds the patient and family with a team consisting of professionals who not only address physical distress, but emotional and spiritual issues as well. Hospice care is patient-centered because the needs of the patient and family drive the activities of the hospice team. 

Is hospice only for people who are dying?

Hospice is for people who have a limited life expectancy. (Actually, we all have a limited life expectancy, so it is more specific than that.) Hospice is for patients whose condition is such that a doctor would not be surprised if the patient died within the next six months. This doesn't mean the patient is going to die in the next six months--it simply means that he or she has a condition that makes dying a realistic possibility.

Who is best suited for hospice care?

Hospice patients are those with very serious medical conditions. Usually they have diseases that are life threatening and make day-to-day living very uncomfortable—physically, emotionally, or spiritually. Some are in pain. Others experience difficult symptoms such as nausea, extreme fatigue, and shortness of breath. These symptoms may be caused by the disease, or they may have been caused by treatments intended to cure the disease. Often patients turn to hospice because they are anxious or depressed, or they are feeling spiritually distressed because of their medical condition. Hospice specializes in easing pain, discomfort, and distress on all levels. The care provided by hospice is often helpful for conditions such as cancer, heart disease, COPD (emphysema), advanced dementia, or a general weakness and "failure to thrive." Seriously ill patients who have decided that their priority is to have the best quality of life possible are the people who are best suited for hospice.

Isn't using hospice the same as "giving up"?

Not at all! Although your loved one's condition may have reached a point that a cure is not likely—or not likely enough to be worth the side effects of treatment—that does not mean there is nothing left to do. In fact, an emphasis on quality of life and easing pain and distress often allows the patient to spend his or her last months focusing on the things that are ultimately the most important and meaningful. As one man put it, "I'd rather spend my time with my children and grandchildren than waste my limited time and energy driving to the treatment center and recovering beside the toilet bowl." With the expert guidance of a nurse and case manager, as well as the assistance of bath aides, social workers, and chaplains, patients and families find they can focus on their relationships, healing old wounds and building wonderful memories together. Far from giving up, hospice helps families truly live well and support each other during a stressful, but, in the end, very natural family life passage.

Should we wait for the doctor to suggest hospice?

You can, but oddly enough, doctors often wait for families to bring it up. This is part of the reason that people often receive hospice care so late in the process. If you think your loved one and family might benefit from the support of weekly home visits from staff who specialize in pain control and the easing of distress, ask your doctor if hospice might be something to consider now, or in the near future. If, when you are truly honest with yourself, you realize that you would not be surprised if your loved one were to die in the next six to twelve months, ask the doctor if he or she would be surprised. If the answer is anything close to "No, I would not be surprised," then maybe it's a good time to begin a discussion about hospice. If you would like more information, please feel free to call us toll-free 1-888-603-MORE (6673). We would be happy to talk with you or to do an informational home visit—no obligation or strings attached.

When is the best time to start hospice care?

Most patients and families who receive hospice care say they wish they had known about it earlier, that they needed the help much sooner than they received it. Research has shown that hospice can increase both the quality of life and how long a patient lives. Families who receive hospice near the very end--just a few days to a week--have been shown to have a harder time adjusting during the bereavement period than do those whose loved one receives hospice care for weeks and months before passing on. If you even think that your family and the person you care for could benefit from pain or symptom management, assistance with bathing and grooming, emotional and spiritual support, and telephone access to caregiving advice, ask your physician if hospice might be a service to consider. Experts agree that at least two to three months of care is optimal. It is better to ask sooner rather than later so you do not regret having missed the support that hospice has to offer.

Who pays for hospice?

If the patient has Medicare and meets hospice eligibility requirements, then the government will pay as much as 100% of the cost. In such a case, there is no deductible and no copayment. Not only are the services of the hospice staff entirely covered, but medical supplies and prescriptions relating to pain and comfort management are also covered. Individuals who do not have Medicare coverage but have coverage from private insurance should talk with their insurance company to find out about eligibility and what deductibles and copayments may apply. Medicaid provides coverage, but it varies by state. 

Once you begin hospice care, you cannot leave the program?

A person may sign out of the hospice program for a variety of reasons, such as resuming aggressive curative treatment or pursuing experimental measures. Or, if a patient shows signs of recovery and no longer meets the 6 moth guideline, he or she can be discharged from hospice care and return to the program when the illness has progressed at a later time.

Is hospice a place?

Hospice is not just a place – it’s a service. Hospice brings physical, emotional, and spiritual care and support to wherever our patients call home.

Does hospice only care for cancer patients?

Hospice is not just for cancer patients. Crossroads Hospice cares for patients with any life-limiting illness. Among the illnesses our patients have had are cardiac and respiratory diseases, renal disease, and neurological illness including Alzheimer’s disease, Lou Gehrig’s disease, AIDS, Cirrhosis, and others.

Is hospice only for housebound or bed-ridden people?

Hospice is not only for those who are housebound or bedridden; most are living their day-to-day lives.  Care is given where ever the patient lives; in their home, long-term care facilities, assisted living or retirement communities, rest homes and hospitals.

Hospice over-medicates so they become addicted or sleep all the time.

When patients have a legitimate need for pain medication, they do not become addicted to it. Crossroads Hospice has the expertise to manage pain so that patients are comfortable yet alert and are able to enjoy each day to the fullest extent possible, given their medical condition.

Heather Ligus

Provider Relations

Crossroads Hospice

216-654-9300

www.crossroadshospice.com

Signs of Caregiver Burnout

Caregiving has many different definitions.  You do not need to be providing direct care to be called a Caregiver.  Caregivers have so much on their plate that they typically don't remember what they just ate for lunch.  From shopping, medication reminders, managing finances, helping with personal care to transportation, Caregivers are non-stop from the time they wake up to the time they go to bed and sometimes even in-between.  Because of this it is important to know warning signs of caregiver burnout.  Here are some of the warning signs: depression, sense of ongoing and constant fatigue, decrease interest in work and productivity, withdrawal from social contacts, increase in use of stimulants and alcohol, increasing fear of death, change in eating pattern, feelings of helplessness, much less energy, decrease in immune system, neglect own needs, trouble relaxing, life revolves around caregiving, and increasingly impatient and irritable.  If you see any of these signs in a friend, colleague or loved one, provide help, whether it is making dinner or taking a shift.  The smallest help is always gratefully appreciated. 

Unique and Bizarre Days in April

When I was doing research on what to talk about in the blog today, I looked up April Month, Bizarre and Unique Holidays.  I came across multiple websites all saying what is to be celebrated in April. 

April is National Poetry Month and National Humor Month. 

Sick by Shell Silverstein

Sick "I cannot go to school today,"
Said little Peggy Ann McKay.
"I have the measles and the mumps,
A gash, a rash and purple bumps.
My mouth is wet, my throat is dry,
I'm going blind in my right eye.
My tonsils are as big as rocks,
I've counted sixteen chicken pox
And there's one more - that's seventeen,
And don't you think my face looks green?
My leg is cut, my eyes are blue -
It might be instamatic flu.
I cough and sneeze and gasp and choke,
I'm sure that my left leg is broke -
My hip hurts when I move my chin,
My belly button's caving in,
My back is wrenched, my ankle's sprained,
My 'pendix pains each time it rains.
My nose is cold, my toes are numb,
I have a sliver in my thumb.
My neck is stiff, my spine is weak,
I hardly whisper when I speak.
My tongue is filling up my mouth,
I think my hair is falling out.
My elbow's bent, my spine ain't straight,
My temperature is one-o-eight.
My brain is shrunk, I cannot hear,
There is a hole inside my ear.
I have a hangnail, and my heart is -
what? What's that? What's that you say?
You say today is ... Saturday?
G'bye, I'm going out to play!"

April is also Stress Awareness Month.  Stress can be both physical and emotional.  It can take a toll on your health.  Remember to relax, take a deep breath, and 1) avoid the things that stress me when I can, 2) listen to my body, and when it feels under stress, I will try to identify the cause, 3) practice the relaxation techniques that have worked for me in the past, and remain flexible and try different things to reduce my stress.

There were many unique and bizarre holidays in April.  I chose a few to share with you.  If you would like to look at the rest or at another month, go to www.holidayinsights.com.

April 1^st is April fool’s day but it’s also International Fun at Work Day.  Tell a joke or share some of the ridiculous laws from the Laughter blog at work.  But remember, don’t believe anything you are told.

"How was your game, dear?" asked Jack's wife Tracy. 
"Well, I was hitting pretty well, but my eyesight's gotten so bad I couldn't see where the ball went," he answered. 
"But you're 75 years old, Jack!" admonished his wife, "Why don't you take my brother Scott along?" 
"But he's 85 and doesn't play golf anymore," protested Jack. 
"But he's got perfect eyesight. He would watch the ball for you," Tracy pointed out. 
The next day Jack teed off with Scott looking on. Jack swung and the ball disappeared down the middle of the fairway. "Do you see it?" asked Jack. 
"Yup," Scott answered. 
"Well, where is it?" yelled Jack, peering off into the distance. 
"I forgot."
Read more:http://www.ajokeaday.com

April 5^th is National Walk to Work day.  This may be hard for some people to do because they live farther from their work.  I am not able to walk to work, but I may walk around my work at lunch time.

April 7^th is No Housework Day!!  This is my kind of a day!  My advice would be to clean your house on April 6^th so on No Housework Day it doesn’t look like a disaster.

“I can’t clean because I get distracted by all the cool things I find.”
“Cleaning with kids in the house is like brushing your teeth while eating Oreos.”

April 13^th is Scrabble Day.  If you don’t like to play scrabble, pick any game to play.  Playing a game with friends is good for your emotional and mental health. 

April 20^th is Volunteer Recognition Day.  Thank you to all the volunteers.  You offer your services at your own free will. You are giving a gift to your community. 

April 23^rd is Take a Chance Day.  Is there something that you have wanted to try but haven’t?  Today is the day to do that!  Go on a balloon ride, try a new sport, ask someone out to dinner.

April 27^th is Tell a Story Day.  Tell your children or grandchildren your story.  Write it down so they are able to tell their children and grandchildren.  If you have a loved one with dementia, show them an object to see if they will tell you story about it from their past!

April 30^th is National Honesty Day.  Did I mention April 4^th is Tell a Lie Day?  I like April 30^th much better. 

"If you truly want honesty, don't ask questions you don't really want the answer to." proverb quote

No matter what day it is in April, don’t forget to slow down, take in the sights, have fun, and stop to smell the roses.