1. Ask for help when you need it.
2. Eat healthy foods.
3. Join a caregiver support group.
4. Take breaks each day.
5. Spend time with friends. 
6. Keep up with your hobbies and interests.
7. Get exercise as often as you can.
8. See your doctor on a regular basis.
9. Keep your health, legal, and financial information up-to-date.

Visit the website of the National Institute on Aging (NIA) for self-care tips for Alzheimer’s caregivers.

Reprinted with permission from the National Institute on Aging.

Just about every night, Carol and I awoke from our slumber at least five times to make trips to the bathroom. We spent endless nights in hospitals and long days in doctor’s offices.

If given the chance to do it all over again, I would. Those years of being a caregiver constitute the best seven of my life. I learned a ton about myself and my family, became a more fulfilled man, and had the incredible chance to fall in love with my wife all over again.

While I could easily list twenty wonderful things about serving in a caregiving role, here are five very important and unexpected rewards:

1. A Better Relationship

When I started being a caregiver, time slowed down. Because the role can be so demanding, you must focus on the person. In the process, you learn what makes them tick – maybe things you hadn’t noticed before. Putting these nuggets of wisdom to use can make that person so happy, which in turns makes you feel good.

For Carol it was pancakes. When she needed a boost, a single pancake could do the trick. Every once in a while, she’d be down in the dumps. The minute I saw this, we were on the way to our local breakfast joint. Carol’s smile would make my day.

2. Precious Moments

Similarly, you get to be a part of some very special moments. Before my wife’s strokes, we’d spend some time together but did our own thing most of the time. After Carol got sick, I spent 90% of my time with her and I got to be a part of so many meaningful moments.

Her father had come to live with us for a few years during her illness. He was around 90 at the time. Every night the Pittsburgh Pirates played on TV, they stood, held hands and sang Take Me Out to the Ballgame every time. You could just feel the love and joy between them. I’ll never forget those moments.

3. Discovering Humility 

This might be the most hidden of rewards. Before my wife became ill, I was a decent man and generally thoughtful of others, but my world had veered towards self-centeredness. I was set in my ways and had been accustomed to the order in my world.

At first, out of necessity, I began taking care of her needs. Soon thereafter, I started feeling good when I did things to help her.  Then something tremendous occurred, I began to derive sustained joy when making her life better. By the time she passed away, I’d committed my life to completely serving her and felt total fulfillment. Why? I had become entirely selfless. There may not be a better feeling in the world.

4. A Deeper Relationship

As I gave myself over to her, my wife started to really feel the love. And in turn, she began outwardly show her love and appreciation. A day wouldn’t go by when she would tell me that “You’re too good to me,” or “Thanks for all that you do for me.” I never sought these assurances but when she’d offer them, it would light up my day. It was then I realized that we were falling in love all over again.

It was during this rekindled time that we showed our truest selves. From her, I got to see a hidden sense of humor and sharp tongue that often had me belly-laughing. For her, my wife saw a much more tender side and the softer edges of my soul.

5. A Stronger Family

Only one of my siblings and one of our three sons lived in Pittsburgh when my wife got sick. At first, I felt sort of alone in dealing with her health crisis but that didn’t last very long. The one son who lived the closest moved in for a year. My other two kids came in regularly and showered their mother with love. My siblings came in all the time and called when they couldn’t.

I’ve lived my life abiding by the philosophy that what happens to you isn’t as important as how you responded to it. My entire family respond with love, concern, help and support. Each time, their acts and deeds made Carol and I feel wonderful. I took great pride in seeing my family come together.

Don’t get me wrong, it wasn’t always easy. Yet, at the end of each day of caregiving, I always received a small gift – a sense of fulfillment. And now, when I look back at those seven years, I am reminded that my life had purpose which is the greatest reward of them all.

George Shannon is the co-author of The Best Seven Years of My Life: The Story of an Unlikely Caregiver, which he wrote with his son, Chad Patrick Shannon. George was the caregiver for his wife, Carol, for seven years. While George was taking care of Carol’s health, Carol was quietly showing the way to a humble and loving relationship. The entire experience transformed George’s approach to accepting himself as he is, the circumstances as they are, and those around him as they are. Humility and unconditional love were the result.

Over the years, I learned to adapt to life with brain injury. He lived at home with me for 15 years, until he passed away six months ago. “Why do you stay?” I was often asked by acquaintances. I have to admit that I occasionally thought about placing him in an institution and walking away. But even though he couldn’t remember what had happened to him that day or the week before, his deep-seated, long-term memories remained. He never forgot his love for me and our two sons who were teenagers at the time of his brain injury. His face would light up at the sight of me or the boys and he would always smile and say, “I love you.”

His capacity for love is what sustained me through the years of disability. How could I possibly leave such a gentle, kind soul who wanted nothing more in life than to love and be loved by his wife and sons? I stayed with him because of who he was before his brain injury, for the devotion he had for his family and the respect he showed me and our sons. I wanted to keep him at home to make sure he was treated with the dignity and respect he deserved. I feared that he would become just another patient or another bedpan to change if he was put in a nursing home.

It was not easy during those 15 years. Caregiving for a brain injured husband while working full-time and raising two sons filled me with exasperation and hopelessness at times.

How did I keep faith in our marriage? Here are some ways that I learned to cope after becoming my husband’s caregiver.

1. I reminded myself that it’s the brain injury and not him. There were times when I felt hurt that he didn’t remember the date of our anniversary or my birthday but I knew it was the brain injury, not that he didn’t care. Yet when I was in the throes of caregiving, it was hard to remember that his emotional responses were not intended to hurt me. The brain injury prevented him from remembering.
2. I tried not to wallow in the past. I missed our old life filled with travel and hiking and camping. Rather than brood for the old days, I learned to travel and still enjoy the outdoors with accommodations for disability. I used wheelchairs and walkers and sought out paved paths in wilderness areas to get a glimpse of mountain peaks and the scent of pine trees.
3. I let myself get frustrated with caregiving. I acknowledged that caregiving was stressful and that it was normal to feel angry at times. I was not a saint who could handle everything and I didn’t have to act like everything was under control. When I felt too overwhelmed, it was time to reach out to others for help.
4. I took breaks from caregiving and carved out time for myself. I felt guilty each time I left my husband with the caregiver to spend an afternoon alone shopping or travel on my own. But I always felt rejuvenated afterwards and better prepared to meet the demands of caregiving. I had to remind myself that it was okay to experience life without disability once in a while.

Just as each recovery from brain injury is individualized, each caregiver has a unique story. My story affirmed for me that caregiving is the ultimate expression of love.

Here are ten dos and don’ts to help you better care for a senior and avoid caregiver burnout.

1. Do plan out difficult conversations ahead of time: You might have to discuss taking away driving privileges or moving to a nursing home. These types of major changes can dramatically impact the wellbeing of an elderly person. Loss of independence and routine can trigger emotions like anger, frustration and depression. Carefully plan out your approach. Choose key points to emphasize ahead of time.

2. Do act and speak with compassion: Diminishing independence is often a rough transition for many seniors. The impact can take a toll on both their physical and mental well-being, so it’s best to always lead with compassion. At times, this may not be easy. Some elders will protest things like in-home care or handing over the car keys. Even when you have to make tough decisions, be compassionate.

3. Do offer alternatives: Alternatives can help those with diminishing independence develop a positive outlook. Come up with a ride schedule if a loved one has to stop driving. Work to find a compassionate caregiver who can help keep them healthy, happy and comfortable if in-home care is now a necessity. Do whatever it takes to give them as much freedom as possible.

4. Do give yourself a break: You love mom and dad with all your heart and would do anything to help them, but don’t neglect yourself when caring for them. Caregiver burnout is very common because people devote every moment to the person in need and forget to take care of themselves. Eat right. Exercise. Take time to relax and unwind.

5. Do encourage them delicately: Know when to give them a slight push or words of encouragement to try new things and get out of the house. At the same time, know when to keep your mouth shut and let them do their own thing.

6. Don’t get frustrated when they forget things: Many illnesses in the elderly bring about both short and long-term memory problems. Even if you’ve told them something 10 times, don’t get upset, angry or frustrated when they forget things, whether it’s important or personal dates like birthdays and anniversaries or less meaningful but still important items like paying a bill or missing an appointment.

7. Don’t skip doctor appointments: If your elderly mom or dad is being treated by a psychiatrist, psychologist or any other mental health professional and starts to show improvement, don’t think they are cured and cancel your appointments. Mental illness can come and go at times. Patients can make significant progress and also have setbacks. Elderly patients need to be monitored very closely, especially if they are taking medications for other conditions.

8. Don’t assume you know what to look for: As the caregiver to an elderly patient, you need to know the less-talked-about symptoms to look for that can indicate a psychiatric condition such as unexplained fatigue, change in appetite, no longer enjoying things that used to bring them pleasure, difficulty sleeping, confusion, nervousness, avoidance behavior, weight loss or gain, and the inability to make simple decisions.

9. Don’t assume depression in the elderly is normal. You may have been led to believe that depression tends to set in as we age. It’s just not true. Seniors should be able to live every day to the fullest and enjoy each stage of life. Being upset once in a while is normal. Constantly living in a depressed state is not normal, regardless of age.

10. Don’t assume they are taking their medication properly: The reality is that many medications look alike or have similar names. A good idea is to get a pill organizer that separates medication by days of the week. You may want to write out specific instructions and even watch them take their meds when you can.

Here are ten dos and don’ts to help you better care for a senior and avoid caregiver burnout.

1. Do plan out difficult conversations ahead of time: You might have to discuss taking away driving privileges or moving to a nursing home. These types of major changes can dramatically impact the wellbeing of an elderly person. Loss of independence and routine can trigger emotions like anger, frustration and depression. Carefully plan out your approach. Choose key points to emphasize ahead of time.

2. Do act and speak with compassion: Diminishing independence is often a rough transition for many seniors. The impact can take a toll on both their physical and mental well-being, so it’s best to always lead with compassion. At times, this may not be easy. Some elders will protest things like in-home care or handing over the car keys. Even when you have to make tough decisions, be compassionate.

3. Do offer alternatives: Alternatives can help those with diminishing independence develop a positive outlook. Come up with a ride schedule if a loved one has to stop driving. Work to find a compassionate caregiver who can help keep them healthy, happy and comfortable if in-home care is now a necessity. Do whatever it takes to give them as much freedom as possible.

4. Do give yourself a break: You love mom and dad with all your heart and would do anything to help them, but don’t neglect yourself when caring for them. Caregiver burnout is very common because people devote every moment to the person in need and forget to take care of themselves. Eat right. Exercise. Take time to relax and unwind.

5. Do encourage them delicately: Know when to give them a slight push or words of encouragement to try new things and get out of the house. At the same time, know when to keep your mouth shut and let them do their own thing.

6. Don’t get frustrated when they forget things: Many illnesses in the elderly bring about both short and long-term memory problems. Even if you’ve told them something 10 times, don’t get upset, angry or frustrated when they forget things, whether it’s important or personal dates like birthdays and anniversaries or less meaningful but still important items like paying a bill or missing an appointment.

7. Don’t skip doctor appointments: If your elderly mom or dad is being treated by a psychiatrist, psychologist or any other mental health professional and starts to show improvement, don’t think they are cured and cancel your appointments. Mental illness can come and go at times. Patients can make significant progress and also have setbacks. Elderly patients need to be monitored very closely, especially if they are taking medications for other conditions.

8. Don’t assume you know what to look for: As the caregiver to an elderly patient, you need to know the less-talked-about symptoms to look for that can indicate a psychiatric condition such as unexplained fatigue, change in appetite, no longer enjoying things that used to bring them pleasure, difficulty sleeping, confusion, nervousness, avoidance behavior, weight loss or gain, and the inability to make simple decisions.

9. Don’t assume depression in the elderly is normal. You may have been led to believe that depression tends to set in as we age. It’s just not true. Seniors should be able to live every day to the fullest and enjoy each stage of life. Being upset once in a while is normal. Constantly living in a depressed state is not normal, regardless of age.

10. Don’t assume they are taking their medication properly: The reality is that many medications look alike or have similar names. A good idea is to get a pill organizer that separates medication by days of the week. You may want to write out specific instructions and even watch them take their meds when you can.

In reality, the PH balance of the mouth is important to make sure those we care for are able to get the strength they need for therapy and understanding proper nutrition.

Here are a few of the tips:

• It goes beyond brush, floss and mouth rinse. When a victim has facial paralysis, swishing isn’t going to happen. Brushing is more difficult and what about flossing? Hard to do on your own.
• Finding the right brush and toothpaste. I recommend an electric toothbrush with a wider handle. I also recommend a child or youth toothbrush head so that the caregiver can go further back in the mouth and disturb any bacteria. Also, it’s important to use a paste with fluoride.
• Flossing is hard. There are dexterity issues involved after stroke. I recommend going with an interdental pick in between teeth. The caregiver should ask the one receiving care what they’re comfortable with and offer assistance.
• Wipe the inside of mouth. It’s important to wipe the inside of the mouth to remove any food that may have been lodged. I suggest using an index finger baby wipe with Xylitol to wipe out the vestibule.
• Spray instead of rinse. Rinsing is going to be nearly impossible. I recommend using a spray like Lubricity instead. The idea is to stimulate saliva so it can help with chewing and processing food to the body for strength.

Anastasia Turchetta is a health empowerment conversationalist with 30 years in the healthcare profession.

She has been a YouTube personality since 2009 and is the host of the popular Coffee ChatTM with Anastasia, where she delivers rich content about how to align your emotional, physical and financial health and lead a productive and successful life.

You can learn more about Anastasia at her website, on Facebook and Twitter. 

Children often can’t wait until a parent fixes dinner, but getting the youngsters involved in helping to prepare those meals could do more than help mom and dad out. It also could lead to life-long healthy eating habits, nutrition experts say. And that in turn could have a profound effect on their well-being, because childhood obesity in the U.S. is on the rise. The percentage of obese American children and teens has more than tripled since the 1970s, with nearly one in five categorized as obese, according to the Centers for Disease Control and Prevention.

Learning how to eat healthy can start at an early age in the family kitchen.

It’s so important for kids to eat healthy, more so than ever with all the alarming facts about obesity and the related health issues throughout life. Cooking with your kids is a great way to help them build healthy eating habits for life. When you involve your kids with the kitchen process and they know they are contributing, they respond in a positive way.

Here are four ways to get you kids in the kitchen and put them on the road to healthy eating:

• Let them participate. Kids can perform all sorts of kitchen tasks while learning the importance of good nutrition. When you let them be a participant in the preparation process, it makes all the difference. They feel a sense of importance and pride. Younger children can pour ingredients in a bowl, practice counting in cups or teaspoons, and learn to mix ingredients. Kids a little older can learn culinary skills like mincing, chopping, dicing. And you should make them all accountable for cleaning up.
• Make it fun. Play games in the kitchen to make learning about nutrition more enjoyable. These could be contests like making lists of healthy and unhealthy foods or snacks, and naming vitamins or ingredients that contribute to good health. As they get more advanced, let them have friendly cooking competitions with prizes. They should want to cook well for each other and respect the efforts their siblings are making.”
• Help them choose healthy recipes. Kids can learn healthy recipes from a young age by reading them aloud, which also provides reading practice. It’s important for the parents to steer them to healthy recipes, which often starts with the grocery store and letting them pick out vegetables. They need to know the purpose isn’t just good taste, but good health.
• Give them ownership. Kids can identify with the kitchen when they have their own box of favorite recipes, their own aprons and their own kitchen towels. Let them help create the family menu for the week. Empowering them to do the whole meal should be a goal.

The kitchen is the heart of the home. And time together making meals is wonderful quality time.

The nation’s aging population is presenting new challenges to terminally ill patients and their loved ones, who must manage chronic pain, disability and questions over when to engage palliative or hospice care, and to health care providers who help them navigate the end stages of life.

To advocate for health care that maximizes quality of life and that minimizes unnecessary suffering in end-of-life care, Rutgers School of Nursing has partnered with Barnabas Health Hospice and the Visiting Nurse Association of Central Jersey Home Care and Hospice to educate nurses, physicians, social workers and other professionals on how to improve the end-of-life experience for patients and their families through the “Hope and Resilience at the End-of-Life” conference in New Brunswick on March 7 and 8 2018. 

How can palliative care and hospice improve the quality of life for the terminally ill and their families?

Palliative care assists a person who has been diagnosed with a life-limiting illness who might die within the next one to two years. It provides an additional layer of support and symptom management as the patient continues with disease-modifying treatment and provides bereavement support for families as well as addresses the patient’s physical, psychological, social and spiritual needs. Studies have shown that people who start palliative care early in the  advanced stages of their illness can prolong their lives and have a better quality of life.

Hospice, which is engaged when disease-modifying treatment has ceased, is appropriate when the patient will most likely die within six months and the focus turns to making the patient comfortable and maintaining quality of life.

How can family members help a terminally ill person continue to live a full life with a chronic illness?

People don’t stop being who they are just because they are dying. They can still enjoy a full life by focusing on the small things that make a difference: wearing clothes they love, eating favorite foods, listening to music, reading books and spending time with friends and family.

Palliative care can help by supporting the patients’ family and friends, who often are grieving the illness and eventual loss of their loved one. The team can help family members come to terms with their confusing emotions and understand what the patient is going through. They also help with addressing pain and managing distressing symptoms as a patient goes through treatment and physical decline. They assist patients in expressing their decisions as to the kind of treatment they want at the end of life. They even can help patients live their dreams at a time when they need their dreams the most.

Can pain be controlled when you have a terminal illness?

Pain is one of the most frequent and feared symptoms in advanced disease. For many families, the last memory of their loved one may either be that of a “peaceful” and comfortable transition or that of a painful end. Most pain can be relieved or controlled. Effective pain control requires good communication among patients, caregivers and health care providers. Pain control plans are tailored to meet the patient’s particular needs and are adjusted as these needs change.

How can caregivers and family members combat “compassion fatigue?”

Compassion fatigue has been described as the “cost of caring” for others in emotional and physical pain. It is characterized by physical and emotional exhaustion and a pronounced change in the caregiver or family’s ability to feel empathy for the patient and can lead to depression and stress-related illness. Signs of compassion fatigue include feelings of exhaustion, reduced ability to feel sympathy or empathy, anger and irritability, increased use of alcohol or drugs, and impaired ability to make decisions and care for the patient. Once compassion fatigue sets in, a caregiver should receive assistance through a health care provider and counseling. Compassion fatigue counseling should screen for and treat depression and secondary traumatic stress as well as provide an early detection system to prevent relapse.

Self-care is the cornerstone of compassion fatigue prevention. Often family members or caregivers put their needs last and feel guilty taking extra time for themselves to engage in stress-reduction strategies, such as exercising, taking a long bath, sleeping well, meditating, doing yoga or getting a massage. It’s important for caregivers and family members to put their own health and wellness at the top of the priority list while caring for loved ones.

Judy Barberio is an associate clinical professor at Rutgers School of Nursing. 

A release from Florida Atlntic University quotes Xu Han, assistant professor in the Department of Information Technology & Operations Management within FAU’s College of Business, who co-authored the study with Niam Yaraghi and Ram Gopal from UConn’s School of Business, as saying, “We were able to empirically demonstrate that inflation does exist in the current system. So many nursing homes have a five-star rating; they look like they’re luxury hotels, but it’s difficult to see through that and determine what kind of service they’re actually providing. In reality, many of them are not really providing five-star services.”

The five-star rating system that Medicare uses to compare nursing homes is made up of three components: employing a base score from an objective, on-site inspection, along with two scores from information on staffing and quality reported by the facility. Patients, physicians and payers rely heavily on these overall ratings, which have climbed higher as self-reported scores have trended upward.

The study, recently published in the journal, Production and Operations Management, investigates whether these rating improvements reflect actual quality gains or unjustified ratings inflation. Among the study’s findings:

• Nursing homes that have more to gain financially from higher ratings are more likely to improve their overall rating through self-reporting.
• Little direct correlation exists between self-reported measures and on-site inspection results, either contemporaneously or over time.
• The number of resident complaints is similar for nursing homes with the same inspection rating but varies noticeably between facilities with the same overall rating, which suggests inflation in self-reported measures.
• At least 6 percent of the nursing homes inflate their self-reported measures, which include quality measures on patient health, as well as staffing numbers.

The study provides systematic evidence that some nursing homes are inflating the self-reported measures in Medicare’s star rating system. By showing that there is a manageable number of facilities that are likely inflators and identifying key predictors of being an inflator, the researchers said the findings can help Medicare focus its future audits more strategically and improve its inspection process and ratings system.

“We know there are issues with the rating system, but what can we do to improve it?” asked Han, who continues to study nursing home ratings. “We need an effective audit system and to conduct more research on how we can use technology to improve nursing home operations and the rating system.”

The study uses data from 2009 to 2013, the first five years after the rating system was implemented in 2008. The researchers examined data from more than 1,200 nursing homes in California, the largest system in the U.S., including the facilities’ star ratings and other characteristics from Medicare files and information on facility finances and resident complaints from other databases maintained by the state.

A release from the university explains that “Living Apart Together,” or LAT partnerships is a growing phenomenon among older adults. The term refers to an intimate, committed relationship that exists between two partners without a shared residence. While the trend is well understood in Europe, it remains lesser known in the U.S. This means that certain family issues that become important in later life, like caregiving or medical decision-making, could be difficult to navigate for LAT couples and their relatives.

The release quotes Benson as saying, “The societal standard for elder caregiving in the United States is to expect spouses and adult children to step in as primary caregivers; however, we do not know how these expectations apply in LAT arrangements. In our research we are learning that, while living apart seems to be almost universally viewed as a necessity for maintaining relationship satisfaction for these couples, paradoxically couples also are willing to make changes in living arrangements to provide caregiving support to one another.”

Benson interviewed adults who were at least 60 years old and in committed relationships but did not live together. She found that for most of these couples, living apart and being independent was considered ideal.  Participants in the study recognized that keeping separate homes was the simplest strategy for safeguarding their autonomy.

Benson cautioned against making any conclusions about actual caregiving behaviors. “Most of the individuals we interviewed had not been tested by the realities of caregiving within their current LAT partnerships. It will be important to follow LAT partners over time to see if their willingness transforms into action and understand the mechanisms that explain these care provision decisions,” she said.

Benson acknowledges that further research is needed to better understand repartnering in later life. She is seeking older adults from around the country in committed, monogamous relationships who are choosing to live apart (in a LAT relationship) or living together and unmarried (cohabiting). Those willing to participate in her research can email loveafter60lab@missouri.edu. To find out more about Benson’s research, visit www.loveafter60lab.com.

“Living apart together relationships in later life: Constructing an account of relational maintenance,” was published in January 2018 inContemporary perspectives in family research, Vol. 11. Intimate relationships and social change: The dynamic nature of dating, mating, and coupling. Benson is an assistant professor of human development and family science in the College of Human Environmental Sciences and also is the Missouri state specialist in gerontology for the College of Human Environmental Sciences Cooperative Extension.