Source: JournalNow.com

Bea Ackenbom-Kelly and her husband, Sid Kelly, are both dying.

But in the past few months, their house off Country Club Road has brimmed with life with the frequent comings and goings of family and friends.

Friends from their church, St. Anne’s Episcopal, and from Ackenbom-Kelly’s book club have come over and brought food. Their children and grandchildren have visited. And people they haven’t talked to in years have called.

“It feels like little miracles everyday when you hear from somebody you haven’t heard from in 30 years,” Ackenbom-Kelly said yesterday.

She said she has had a chance to mend estranged relationships and deepen other ones.

Both she and her husband, Sid Kelly, a founder of Crossing 52, a group devoted to improving race relations, have been getting care from Hospice & Palliative CareCenter in Winston-Salem.

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Did your mom teach you to “do what the doctor says”? If she’s not following doctor’s orders for medications now, you’re probably feeling confused. And concerned.

It’s common for patients not to take pills as directed. Some reasons include:

- “It’s too costly.” One quarter of new prescriptions are never filled because of cost. Make sure the drug is on the insurance plan formulary. Or ask about generics. Find a discount pharmacy, or consider mail order.

- “I feel fine.” Many illnesses lack noticeable symptoms. High blood pressure and high cholesterol, for example. These prescriptions often go unfilled. Many people don’t finish their antibiotics for similar reasons: the symptoms went away. Ask the doctor or pharmacist to review with your loved one why a medication is necessary.

- “It made things worse.” Consult with the doctor or pharmacist. Reducing the dose or changing from morning to evening may fix the problem. Or taking a different medication may be advised.

- “It was too complicated.” Some drugs require multiple doses in a day. Others are restrictive (“30 minutes before eating”). Ask the doctor or pharmacist about alternatives.

- “I can’t get the bottle open” or “I can’t read the label.” Arthritic hands and poor eyesight can make it difficult to follow directions. Ask the pharmacist for large type on the label and a NON-child-proof container.

- “Why bother?” Hopelessness and depression are common reasons why people don’t take their medications. If you suspect depression, ask the doctor to do an evaluation.

- “It won’t do anything.” Perhaps your loved one has an entirely different interpretation of what is wrong. Consider using the motivational interviewing techniques described in our article, “Your changing role: Becoming a partner-in-care.” The discoveries you make in the conversation can help you increase the likelihood that he or she will follow the doctor’s orders.

- “I forgot.” Simple memory lapses are a fact of aging. Look for solutions to forgetfulness in next month’s newsletter.

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It’s a little known fact: men represent at least one third of family caregivers across the nation. In some respects, they are more likely than women to face challenges. But they are less likely to ask for or receive the kinds of support all caregivers need.

Researchers report a number of issues that complicate the lives of male caregivers:

* Household tasks. Most men face a learning curve when they take over household tasks (things such as doing the laundry or cooking three meals a day). They have to learn on the job.
* Personal care. When it comes to bathroom activities, the intimacy of personal care is especially challenging for sons. But even husbands can feel inadequate handling daily needs, such as fixing hair. When possible, men tend to hire others to do these tasks.
* Identity challenges. The mundane chores of caregiving can seem emasculating. And the inability to “fix” a loved one’s disease may feel disempowering. In addition, men in the workforce report feeling they must hide their caregiving role. A caregiving man is considered less serious about his career.
* Emotional demands. As a rule, men prefer to keep their world steady by avoiding talk about emotional issues. Meeting an ill loved one’s emotional needs can be taxing.
* Emotional losses. Men traditionally get their emotional support from someone close at hand. But that very person may now be the family member needing care. Men tend to feel less comfortable turning to alternative sources, such as support groups.

It is for these reasons that male caregivers are especially subject to isolation. If you know a male caregiver, consider reaching out. Offer to do a household task together. Working together may lead to more personal conversation. At the least, he, like any other caregiver, will appreciate not feeling so alone with the job.

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We all want to maintain our brainpower for as long as possible. If you are caring for a family member who already has memory problems, you may feel especially at risk.

The good news is that, regardless of age, simple changes in lifestyle can help keep a brain strong and resilient. The key ingredient is exercise for the mind and body.

Although adults can’t make new brain cells, we can make new neurons. Neurons are the connections between brain cells. And mental exercise sparks the creation of new neural connections. With more connections, the brain has back-up options, or “cognitive reserve.” And cognitive reserve helps a brain do better for longer.

Is a “brain game” the best exercise to help preserve clear thinking? Not necessarily. Brain games improve a person’s ability to do specific tasks, but they have not been proven to enhance a person’s ability to navigate the complexity of everyday life.

Instead, engage in mental activities that stimulate the brain to think in new ways. Consider these options:

* Volunteering, playing games, and doing crafts
* Attending lectures, theater, or musical events
* Reading, writing, and searching the Internet

What you want to avoid is repetition, and hours in front of the TV. The goal is novelty and challenge!

Physical exercise is also important. Research shows that people who are physically active stay “with it” longer. Aerobic activities such as walking, biking, and swimming increase blood flow, which supports the development of new neural connections. As with mental exercise, the upshot is lower risk for mental decline.

Beware of products that promise to delay or prevent diseases such as Alzheimer’s. Research has not yet discovered any “magic pill” or strategy. Instead, scientists encourage a focus on overall health, keeping blood pressure and blood sugar in check, and getting plenty of physical and mental stimulation.

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Perhaps you’ve heard of “adult day care.” Although you may be reluctant to consider it for your parent, research shows the benefits are undeniable.

Three basic kinds of adult day programs are offered across the country.

• Adult social programs provide activities, meals, and personal care.
• Dementia-focused programs are like social programs but are geared for individuals with memory loss.
• Adult day health programs provide activities and meals, as well as therapeutic and social work services. They serve individuals with serious medical concerns and/or dementia.

Most programs provide transportation to and from the center. The average cost is $67/day, although you may be eligible for assistance. (If your loved one spends at least 8 hours a day living with you and is financially dependent, you may be eligible for Dependent Care Tax Credits from the IRS.

Day programs create a win:win for you and your parent. Researchers report:

• Reduced stress for family caregivers.
• Increased quality of life for program attendees.
• Fewer dementia-related behavior problems over time.

Concerned that your parent will say “no”? Studies of dementia-focused programs find this is not a common problem. Still, follow these tips for a successful transition:

• Start slowly. Have your loved one attend for a few hours at first, then a full day. Build up to several days a week.
• If your loved one has dementia, new places and faces may cause anxiety or resistance. Stay with them initially to ease their adjustment.
• If your loved one does not have dementia, be sure the program has other non-impaired attendees.
• Discuss your concerns with center staff. They are experienced at helping newcomers fit in.

See our Community Programs page on adult day centers for more details.

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It’s difficult to know what to anticipate when traveling with a frail family member. Here are tips from experienced, disabled travelers to reduce your road-trip stress this summer.

If your travel includes hotel lodging:

• Talk directly with the hotel. Many chains have a centralized reservation system. Get a direct, on-site number instead. Then ask to speak with the head of housekeeping or engineering. With their intimate knowledge of the building, you can ask them to describe the disability features: How wide are the doorways? Does the bathroom have grab bars? And don’t forget to ask about access to the hotel from the street!
• Reserve the room. Confirm that you are guaranteed an “accessible” room. Reconfirm a few days in advance of your arrival. If your room is not available or not accessible, ask to speak with the manager. It is the hotel’s responsibility to find you suitable alternate lodgings.

You might also consider bringing these items. You’ll find them sold online or at medical supply stores.

• A folding ramp. An easy way to eliminate a short flight of stairs.
• Safety items for the bathroom. Consider a lightweight toilet seat extender. For bathing, look for a suction-based grab bar, or folding shower bench and slip-on shower hose. Add nightlights to improve visibility after dark.
• Chair comfort. Bring a lap blanket and special pillows if your family member will be spending a lot of time sitting. Or a small fan to help with cooling. A swivel seat cushion may help a lot with getting in/out of the car.

To help your loved one join in excursions, consider a wheelchair. A wheelchair can preserve your family member’s energy. All transport chairs fold, but some are made for travel and pack easily in a small bag.

For more, Visit us online at: http://hospicecarecenter.org!

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We’re all aware that diet affects health. But did you know that people with COPD (chronic obstructive pulmonary disease) can help themselves breathe better by making simple changes to their eating habits?

What we eat

The food we eat combines with the oxygen we breathe to create energy and carbon dioxide. Our body needs the energy to function. The carbon dioxide is a waste product we need to dispose of. Too much of it is toxic. But having to exhale a lot can be tiring.

• Limit sugar and sugary foods such as candy, cake, and soft drinks. Carbohydrates (sugars and starch) produce more carbon dioxide than fats or proteins. They make more work for the lungs.
• Fats produce the least carbon dioxide. The best fats are polyunsaturated fats such as vegetable oils and soft margarine (look for those labeled “zero trans fat”).
• Protein is necessary to maintain the respiratory muscles. At least two servings a day is recommended: eggs, dried beans, dairy products, and meats.
• Limit foods that produce gas, such as carbonated beverages, dried beans, cauliflower, and broccoli. They cause the stomach to expand which puts pressure on the diaphragm.
• Limit salt. It can cause the body to retain fluid, making it harder to breathe. See our January 2010 article on reducing salt.

The way we eat

• Consider eating four to six small meals a day and minimizing fluid intake at mealtime. It’s harder to breathe when your stomach is full.
• Eat earlier in the day. If energy is generally low by dinnertime, focus on consuming more of the day’s calories in the morning and afternoon.

As always, check with a doctor or dietitian to determine the diet that is right for your loved one. You can search for a registered dietitian near you at www.eatright.org.

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With periodic flare-ups and dashes to the ER, it’s easy to feel overwhelmed when caring for a loved one with a lung condition, such as chronic obstructive pulmonary disease (COPD).

The COPD Management Tool, developed by the American Lung Association, empowers you to help your loved one prevent crises through better management of the disease. Several simple forms guide you in communicating with the doctor so you are all on the same page. Best of all, the forms take the guesswork out of decision making on those days when symptoms start to flare.

The tool has two components:

• The COPD Management/Action Plan. Complete this one-page document with the doctor. The first section, in blue, summarizes your loved one’s current lung conditions and the doctor’s basic treatment plan. The “COPD Action Plan” section provides at-a-glance descriptions of what to do, depending on how your loved one is feeling. It groups symptoms into good days (green), bad days (yellow), and emergency situations (red). Review these descriptions with the doctor so you and your loved one will know what to do in each case.
• The COPD Report Card. This two-page form helps you give your care providers a quick snapshot of how things have been going since your last visit. Before a routine check-up, use it to summarize symptoms. During a flare-up, refer to it to describe recent symptoms for emergency personnel.

The forms take only minutes to complete. And once the management and action plans are in hand, you and your loved one will find it much easier to know what to do when symptoms get worse. Now that’s a plan for staying out of the ER!

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