Caring for the Caregiver

Are you part of the “Sandwich Generation”–caring for growing children and aging parents?

Being the care giver can be both difficult and rewarding. But it is often taxing physically and emotionally.

Emotionally, you are always on alert: when the phone rings, or always listening for that sound of distress. Your life is no longer your own, especially when you have to drop what you are doing or planned for the day to do for others.

Physically, you may not be sleeping well worrying about what needs to be done. You may be lifting from bed to chair to car and back. Or have to be available 24/7.

And who is taking of you?

I am sure you have heard this before, but it is true … You need to take care of yourself to be able to be at your best to care for others!

Here are some helpful suggestions:

Don’t be afraid to ask for help and take help when offered–you cannot do everything yourself
Practice good sleep habits to ensure plenty of good quality sleep
Set aside time for yourself, if it is only sitting quietly for several minutes a day
Exercise regularly to relieve stress and rejuvenate yourself
Feeling sad, scared, tired, angry and stressed is normal–find a good listener to share these feelings with
Let the little things go and focus on the big issues that really matter
Realize that no one is perfect and making a mistake is human
Be flexible and remember that there is more than one way to do things
Keep connected to your spiritual or religious foundation

We all tend to place our needs last, especially when there are others depending on us. You can sustain this for a short time, but the healthiest way for those you are caring for and for yourself is to try to make time to take care of you. Give yourself permission to make one small change for yourself and you’ll find that everyone wins!

Waking Up Confused: Postoperative Delirium in the Elderly

Preparing for surgery is stressful enough, with all the potential complications associated with a fix of whatever’s wrong. But add to the mix, the possibility of postoperative delirium and it’s downright scary. For reasons we don’t quite know, this condition is most associated with joint replacement and heart surgery, particularly in the elderly.

Postoperative delirium occurs in 1% to 61% of patients following anesthesia. It’s characterized by confusion, disorientation, fluctuating levels of consciousness, altered psychomotor activity, and disturbed sleep-wake cycles. These symptoms usually occur on the first or second day after surgery and worsen at night. Underlying dementia can complicate the situation, as symptoms are often confused by the treatment team. This happened to a client of ours with early stage Alzheimer’s disease. He underwent joint replacement surgery and woke from anesthesia experiencing hallucinations and agitation so severe he required restraints. In the following weeks, he slipped into critical confusion and depression. Fortunately, with aggressive advocacy on our part, his symptoms of dementia were distinguished from the delirium and he is now on the mend.

Age, dementia drugs, and certain metabolic diseases increase the risk of postoperative delirium. Approximately 30% of cases are related to drug toxicity, an often preventable risk factor. Before surgery, disclose all medical conditions and drugs and ask the anesthesiologist about your risks. While it’s impossible to prevent postoperative delirium in all surgeries, being prepared will help you and your family pave the way for your best recovery.

Choosing Your Health Care Advocate

Going it alone is NEVER the best choice when it comes to health care. Especially if you have time-sensitive treatments, a complicated diagnosis, or insurance issues to consider. When you need someone on your side — supporting your well-being, getting medical appointments, managing treatments plans or fighting for your benefit rights — you need a health advocate.

A relatively new response to today’s complicated health care system, health advocacy is considered a critical service by CNN and other news sources. Knowing when to hire an advocate, and how to choose one that’s right for you, is key to a successful outcome.

What’s the Problem?

Define your needs before looking for someone to help resolve issues. For example:

Do you need someone to oversee care being provided to yourself or a loved one?
Are your needs related to developing a plan of care for a particular diagnosis?
Is it an insurance issue? Are your benefits being denied?
Do you need help researching the latest technologies and treatments for a disease?
Are you worried about mom and dad living alone?
Will you need the advocate to be onsite at a hospital or facility?

Locating a Private Advocate

An internet search, using the key words “health care advocate” will direct you to advocate websites. Review their areas of expertise; narrow your choices and examine how their services meet your defined needs. Ask for referrals from friends, family members and physicians (use the terminology “case manager”).

Consider the Fit

Like physicians and health problems, advocates come in all shapes and sizes. Some have a “take charge” style” others are more laid back. Finding the right fit is critical. Things to consider:

Have they helped clients with similar issues?
If so, what do they consider a successful outcome?
How many client cases do they work on at the same time?
Do they have a resource network?
How easily can you reach them during the week? Off hours? Holidays?
How do they keep clients apprised of progress?
How does the advocate charge for services: hourly or set rate?

Health advocacy is typically private pay, with fees ranging from $100 – $200/hour. The right advocate will guide you through the health care maze and so that you get the benefits and treatments you need when you need them. And that’s priceless.

Palliative Care: Managing Your Well-Being During Serious Illness

You have an illness that is not going away. And every day it seems to get a little worse. Maybe you have unrelenting pain. Or reduced strength and ability. Maybe just getting around the house requires too much energy. You feel alone, tired and scared. What kind of care will help you live your best life while acknowledging the debilitating effects of your disease?

The answer is Palliative Care. This sub specialty of medicine provides compassionate medical care, helping to manage symptoms and drug side effects while working with you and your family to achieve a quality of life that addresses body, mind and spirit. Contrary to common belief, palliative care is not only for those who are terminally ill and in hospice; it’s widely available to patients suffering from debilitating symptoms of serious illness and those who are aggressively managing the disease.

According to the Center for Advanced Palliative Care, “Palliative care (pronounced pal-lee-uh-tiv) focuses on relief of the pain, stress and other debilitating symptoms of serious illness.” The palliative care team may consist of physicians, nurses, social workers, pharmacists and hospital chaplains. Anyone helping to advocate for your well-being should consider palliative care an essential component of your treatment plan.

Palliative Care —

Can be provided along with treatment focused on curing the disease or illness.
Is appropriate at any time during an illness and does not depend upon a prognosis.
May help control treatment side-effects
Focuses on control of pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping.
Is individualized to the needs of each patient and their families and changes with the patient’s needs.
Provided by a team of doctors, nurses, social workers, chaplains, and other professionals to provide comfort and support for both the patient and family.

No matter where you are along the journey toward managing a serious illness, palliative care can help you achieve your goals for a fuller quality of life. For more information, visit www.getpalliativecare.org

Choosing End-Of-Life Care

Choosing End-Of-Life Care

There are no words to adequately express that moment when we fully realize our life — or that of a loved one — is nearing the end. If life follows a “traditional” pattern, it means sons and daughters are caring for aging and dying parents. While we struggle to make sense of the inevitable, we also need to make compassionate and practical decisions. One of those is centered around end-of-life care and when to call upon hospice for help.

From its beginning in 1967 in England, hospice was designed as a philosophy of empathetic care, rooted in the idea of offering shelter and hospitality to weary and sick travelers. It is both an approach to managing end-of-life care and a health benefit provided by insurance plans and Medicare (for those who qualify for Medicare Part A and meet other requirements).

Hospice Care . . .

Requires written orders from a physician, for individuals with a life expectancy of six months or less. In the case of a Medicare beneficiary, the hospice order can be renewed after six months for 90 days at a time.
Provides palliative care to terminally ill patients who have decided not to seek a cure for their disease. While medical treatments continue, including use of antibiotics, the primary objective is providing comfort to the patient.
Is family-centered, helping families cope with the physical and emotional process, while encouraging patients to live as fully as possible during the end stages of their illness.
Can be provided in a variety of settings: home or a residential facility, such as extended care facility, or nursing home. Some acute care hospitals even have dedicated hospice units.

With hospice, patient and family members benefit from palliative care delivered by a coordinated team of caregivers that includes doctors, nurses, spiritual counselors, pain specialists, social workers and specially-trained volunteers.

Learn more about hospice care:

Healthfinder
Consumer healthcare information from the U.S. Government, with selected online publications, databases, web sites and support groups.
http://www.healthfinder.gov.

Hospice Foundation of America
Phone: 202-638-5419
http://www.hospicefoundation.org.

Medicare & Hospice:
www.medicare.gov/publications/pubs/pdf/hosplg.pdf

National Hospice and Palliative Care Organization
www.nhpco.org/templates/1/homepage.cfm

Leaving the Hospital – Part Two

After reading the true stories in last week’s blog (part one), you must be wondering how to prevent discharge horrors. You realize that the term “discharge planning” is, in many instances, an oxymoron.

The discharge part is true. The planning? A little less so. It’s typically brief and fraught with gaps in communication between hospital caregivers and family members who often take over that role. All you want to do is get your loved one home. But you also want to know what you need to know. And in clear, precise terms.

Ask for a preliminary discharge meeting before the day of discharge. This allows time for you to process information and identify issues or gaps in the planning. Will you need to rent a hospital bed, for instance? Do you need to arrange for outside care? These things take time. What services and equipment will be covered by insurance?

Get a list of medications your loved one is currently taking; compare it to the ones taken prior to admission. Make sure you understand what’s been added, changed or modified. To avoid confusion, or waiting around on discharge day, call your pharmacy in advance to see if they stock the new prescriptions.

Your Discharge Planning Meeting should be with health care professionals (usually a social worker or nurse, or both) in which they:

Assess the patient’s needs: physical, social, and emotional.
Clarify the discharge plan so that the patient and family members understand each element.
Identify what resources (family, friends, community) are available to assist the patient in meeting identified needs. Are these resources sufficient?
Educate family members and friends on their new responsibilities.
Monitor and modify the plan, as appropriate, and in response to family/caregiver feedback before discharge.

Remember: You don’t have to accept a discharge plan. Express your concerns. Don’t leave without a full understanding and comfort level of your loved one’s condition and your role as caregiver. And if you feel anxious, or you’re worried about understanding everything, bring along an advocate as a “second pair of ears.”

Leaving the Hospital: Part One

Home Again. That’s all you and your family think when it’s finally time to leave the hospital. But once you’re home, reality sets in. You’re not really well, just well enough to be discharged. Just well enough to know there should have been better discharge planning.

True Stories:

(1) A surgical patient was sent home with a nasogastric feeding tube, a long narrow tube that goes through the nose and into the stomach, designed to carry liquids. Until he was better, this would be his source of nourishment. The patient’s wife was given written instructions on how to feed her husband through the tube; she practiced in the hospital, demonstrating her new skills to a satisfied nursing staff. Once home, she prepared the ultimate comfort food — chicken soup — and began feeding her husband. She never realized — and nobody ever told her — that the tube would handle only liquids. Hours after being discharged she had to call the nurses for help in dislodging the blocked tube. “Half information” filled with gaps and misunderstandings could have resulted in disastrous consequences. Upon discharge, she should have been told, not only what to do, but what NOT to do.

(2) As an elderly man was about to be sent home, the social worker quickly reviewed the discharge papers with him and his son. Health Champion was also there as an advocate. The son was thrilled to hear that his ordinarily agitated father — at risk for falling — was now “sleeping though the night,” and not attempting to get up. This felt wrong to us. At our insistence, the social worker checked deeper and discovered that the patient did, indeed, need to get up to use the bathroom at least twice nightly, and he required assistance. This is critical discharge information that requires home planning. We then discussed medication management, especially of the client’s psych meds. The social worker offered a plan that did not set right with us and we refused to accept the discharge plan until it was appropriately modified to cover issues of safety and physician oversight.

These real life stories show what can happen, even when you’re vigilant. Next week — in Part 2 — we’ll talk about how to ensure discharge planning that works in your best interests.

Who’s On First?

Following up on our blog from a few weeks ago — having “double the benefits” with two working spouses and two health plans — we’re adding Medicare to the mix.

Sample Scenario —

Husband: takes retirement, is 65 or older (and/or is disabled), and has Medicare as his primary health insurance coverage.

Wife: continues working, has employer based health care benefits for her and her husband.

He goes to the doctor and assumes Medicare will cover the visit and any treatments or tests. But it ain’t necessarily so! And that’s why he MUST let his health-care providers know about his wife’s employer-based plan.

In a nutshell . . .

As a non-active employee (an individual who is retired, on COBRA or Long Term Disability), the husband would typically be covered by Medicare as his primary insurance. However, as a dependent on his wife’s insurance, the size of her employer’s group will determine primacy: if there are fewer than 20 employees, Medicare pays first; more than 20, her health insurance pays first and Medicare pays second.

The rules for coordination can be complex. Keep your health plan administrators informed of changes or other coverage. Make sure your doctors know about the dual coverage and present both cards at the time of your visit.

Questions? That’s our specialty — finding answers, determining solutions. So, call if you need us. You can also contact the Medicare Coordination of Benefits Contractor at 1-800-999-1118.

Meanwhile, just remember, the answer to Who’s on First? can be a tricky one!

A Sun-Friendly Reminder

After a bleak winter and damp spring, we naturally crave sunshine, whether at the beach, on the golf course, or in our own backyard. At the same time, we’re warned that excessive sun exposure is responsible for nearly all skin cancer, with more than a million people diagnosed each year. Summer isn’t even here officially, but the sun has been high and hot and we’re all ready for a little fun. Just remember . . .

Use sunscreen.

Choose one that blocks both UVA and UVB rays, with an SPF 15 or higher. Apply about 2 tablespoons of sunscreen to your entire body 30 minutes before going outside; reapply every two hours.

Avoid direct exposure to midday sun.

The sun’s rays are strongest and brightest between 10 a.m. to 4 p.m., causing the most skin damage. If you have to go outdoors at those times, be sure to lather on sunscreen.

Spend time in the shade.

You’ll be cooler, while lowering your risk of skin cancer. But don’t be fooled: you still need to wear sunscreen. Sunlight bouncing off reflective surfaces (like water) can reach you even beneath an umbrella or a tree.

Monitor children’s sun exposure.

Did you know that many cases of skin cancer link back to bad sunburns as a child? Keep newborns out of the sun completely. Babies (over six months) and all children should wear sun block and protective clothing, like hats with brims, and stay out of the sun, enjoying the outdoors in shaded areas as much as possible.

Wear protective clothing.

Wear hats and cover exposed skin with tightly-woven light clothing. Because eyes are also susceptible to sun damage, be sure to wear sunglasses with UV protection.

Check your skin often.

Early detection of skin cancer gives you the greatest chance for successful treatment. Check your skin monthly — from head to foot — looking for any changes. If you suspect anything, see your doctor.

Enjoy your summer. Have Fun in the Sun. Just remember the basics. Especially the sunscreen!

The Truth About Pain

Don’t let anyone fool you: pain is good. It’s not fun, but it is good. Necessary. And helpful. Pain is actually a protective mechanism — our body’s way of saying, “hey, pay attention; there’s an injury going on here!” Without pain, we’d keep our hand on the hot stove, walk on a broken leg and keep abusing an injured back.

Sudden, acute pain signals a new injury; chronic pain, however, is long term, decreasing the quality of our daily life, often making us anxious, agitated and depressed. The people around us seem to have compassion for our acute pain and little patience for chronic pain. They want us to get over it (so do we, those of us who are suffering!), but it’s not always easy.

There are a lot of myths and half-truth about pain management. Let’s sort a few of them out.

Myth:
My doctor — and others — will think I’m a wimp or complainer or worse — an addict — if I ask for something stronger.

Truth:
Pain is real and needs to be aggressively controlled, often with several different drugs, at initial high doses, to enable you to function at your best. Depending upon the type of pain you’re having, drugs other than “traditional” pain relievers may be effective, such as those used for seizures or depression.

Myth:
All of the good pain medicines are addictive; I’ll instantly become addicted if I take them.

Truth:
If you need to take narcotics for your pain, it is unlikely that you will become addicted. Typically, addiction occurs when you continue taking the drug long after you need it for pain relief. It’s critical to take the drugs as prescribed.

Myth:
I should wait until the pain becomes unbearable before taking anything.

Truth:
Pain is easier to avoid and harder to treat. Translation: if you wait until the pain is intense, you will never be able to relieve it; but if you take your medicine at the first sign of the anticipated pain, you’ll be able to avoid it.

Myth:
Because over-the-counter pain medicines are safe, I can take as many as I want without hurting myself

Truth:
Over-the-counter pain medicines like acetaminophen (Tylenol®), aspirin, naproxen are very effective pain relievers, but can be just as dangerous as prescription pain medicines if you take too many or too often.

Take care of yourself: Don’t listen to the myths; listen to your body. Heal it with rest and appropriate medicine. Don’t be shy about seeking stronger relief. And if you have questions, ask until you’re satisfied with the answers.

Health Champion Blog

"In Your Corner"