Caregiving Language – Use It to Uplift and Embrace

Caregiving Language - Use It to Uplift and EmbraceIf you are caring for someone who is living with Alzheimer’s disease, maybe you can relate to this experience:

“Are you with me or not?” my father asked sternly.

“Yes, I’m with you!” I replied without hesitation.

Alzheimer’s disease had progressed between the mid- to late-stage of the disease for my father.

I scanned his face and the area for clues. None. I had no idea what he was talking about.

He looked annoyed at me – at my inaction. “We have to get going, now!”

“How about you take the lead? I’ll be right beside you.”

He walked to the front door. We stood there and waited.

It turned out, we were waiting for the train from California to England to fight with our “fellow countrymen.” My father’s never been to England. His fellow countrymen are Armenian, not English. And, of course, no train travels from California across the ocean, but none of that was important.

Even when someone is making so little sense, how you respond as a caregiver matters to your relationship with them. Even when a person with dementia can express himself, we might still be left asking ourselves, “What is he talking about?” You can’t be a mind reader, and you don’t have to be. Choose your words carefully with kindness to help this person feel secure and safe in your company.

The Negative Nature of Our Language

The words we choose impact how secure we help our care recipients feel. Oftentimes, we don’t realize how our language affects others.

After initial mishaps, I learned to align with my father’s requests.

When he says he wants to drive somewhere, I hand him the keys. Like the improvisational artist, I try keep the scene moving, having no idea what to expect. The fact is, he cannot legally drive anymore.

After he moved to California from his Wisconsin home of 45 years, I knew the new setting would be disorienting and he no longer had a car to drive. With some confidence I’d reply, “You had the car last. I don’t know where you parked it.” My strategy was to go along with him, not argue or correct.

He’d take the car keys and walk rapidly, pause, look at the car keys – two postal box keys, two house keys and a car key fob. Confusing to a man who was used to plain similarly sized keys. Distracted by something else, he set the keys down. Each time, I thought, Phew, that was a close call!

Ask yourself, “Do my words push people away or do they bring them closer?”

Our goal is to give verbal hugs with language that embraces. I aligned with my father’s request to drive and even handed him a set of keys. We want to uplift those we care for with our remarks.

It’s quite a challenge, because the English language limits our choices.

We speak mainly in either-or, black or white and yes or no. There are few words to describe the greys, the in-betweens and the maybes. Furthermore, our use of language tends to skew negative.

For example, consider one deflating yet all-too-frequent response to a compliment. A server, receptionist or a customer-care employee, may reply, “No problem.” After I uplift a person with words of praise, hearing “no problem” is deflating. I wonder, when did this become a “problem?”

It might feel more uplifting to reply with, “You’re welcome” or “My pleasure.” These words can feel more like an embrace.

Consider practicing these three tips to embrace and uplift with your words.

Language-Use Tips

Say what is.

Instead of saying what we don’t want or what isn’t –

“What did you think of that?”

“Not bad!”

“What would you like to eat?”

“Not ham!”

Practice using words to express what we want.

“I’m really in the mood for a small piece of roast beef. That would really hit the spot, right now.”

We spend so much time on the exception or what we don’t want, we can lose sight of the plentiful buffet of options before us.

Keep things positive with encouragement such as, “I’m in the mood for…” and keep a conversation going rather than shutting it down with a negative. Reread the italicized replies, above and take note of how you feel.

In general, this negative slant in our language-use, may be one reason our goals are elusive. When we focus on excluding or what we don’t want, that’s what we often get. When our attention and efforts are aimed toward what we want in life, we’ll have a better chance of achieving it.

Habits are hard to change. When we muster the courage each day and commit to apply these skills, we’ll have a better chance of success in day-to-day care of our loved one. Adding an improvisational tool will help, too.

Improv
The goal with improvisation is to keep the scene moving. The primary way to accomplish this is to respond affirmatively. Improvisational artists will say, “Yes.” They’ll also add “and” followed by a new piece of information.

While presenting a keynote recently, I briefed a volunteer and then asked her, “May I have $5.00?” She replied, “Yes.” As she reached into her pocket, she asked, “And may I have a $20?”

The audience laughed. She kept the scene moving, instead of refusing with “No” or “I don’t have a “five.”

Practice responding in such a way that you align yourself with your care recipient’s interests. Instead of shutting down communications and creating feelings of insecurity, you’ll strengthen your relationship and find space to add a touch of humor.

Add Humor
When the conversation is flowing, it frees-up creative energy. In the example above, the attendee’s response was a win-win. I got what I wanted and her clever response got her even more. Plus, we entertained the audience.

Interactions that include laughter (even smiles) bring people closer and strengthen feelings of security.

Are You with Me?

As my father and I stood at the door waiting for a train that would never come in our lifetimes, I remained clueless. I had no idea what he had in mind. Without challenging his resolve, I asked tangential questions.

“Do you think the train will take us from California to England?”

He looked at me quizzically.

“I mean, will we need to board another train?”

Trying to assess my sincerity, he replied, “We’ll be traveling through the night, making many stops to pick up others.”

Oh my! This is going to be a challenge. What the heck is he talking about? I tried another approach.

“Since we’ll need our strength, shall we eat, first? I’ll check the schedule to make sure we don’t miss the train.”

“Sure, let’s eat. Let’s make sure we don’t miss the train.”

After all that, I learned we were in the midst of WWIIHe had been paging through an issue of LIFE magazine.

In my personal experience as a caregiver, I have found that using these strategies results in uplifting and embracing communications and improving our relationships.

Source: Homewatch Care Givers – By Brenda, Avadian, MA, The Caregiver’s Voice

8 Facts to Know About Lewy Body Dementia

Most people mistakenly believe that all types of dementia share similar symptoms, like the hallmark signs of forgetfulness and confusion that are associated with Alzheimer’s disease (AD). However, Lewy body dementia (LBD), the second most common type after AD, is characterized by unique symptoms that make it difficult to diagnose and treat.

It’s important for family caregivers who are looking after aging loved ones to familiarize themselves with some of the basic signs of various age-related diseases like LBD. Noticing strange new behaviors or quirks early on can help ensure a senior gets the medical attention they need in a timely manner.

Facts About Lewy Body Dementia

  1. It affects millions of seniors. 
    According to the Lewy Body Dementia Association, LBD affects approximately 1.4 million individuals and their families. Although it is widely unknown, it is the second most common form of dementia after Alzheimer’s disease.
  2. LBD is not Alzheimer’s disease.
    Many people use the terms “dementia” and “Alzheimer’s disease” interchangeably, but dementia is an umbrella term used to describe a progressive neurological disorder that affects cognitive function, of which there are many different kinds. Alzheimer’s is one form of dementia that is characterized by impaired memory, issues with decision making, trouble with problem solving and difficulty learning new skills.
    There are crucial differences between AD and LBD. For one thing, people with LBD experience unpredictable changes in cognition, regardless of the time of day, whereas people with Alzheimer’s tend to have more trouble in the late afternoon and evening—a symptom known as “sundowning.” Those with LBD also tend to have more visual hallucinations and movement issues, while the hallmarks of AD include memory loss and trouble performing familiar tasks. Furthermore, abnormal alpha-synuclein protein deposits in the brain called Lewy bodies are the hallmark biological marker of LBD, unlike Alzheimer’s, which is caused by the accumulation of beta-amyloid plaques and tau tangles in brain tissue.
  3. LBD is difficult to diagnose.
    As with Alzheimer’s, LBD can only be conclusively diagnosed through an examination of brain tissue after a person has died. However, medical advancements have significantly improved the certainty with which doctors can diagnose living patients.
    Doctors consider the person’s symptoms, interview their family members, perform physical and mental evaluations, obtain a family and personal medical history, and conduct blood tests and brain imaging tests like MRI, PET and CT scans. Symptoms of LBD include problems with depth perception, hallucinations (often visual), delusions, paranoia, Parkinsonism (body stiffness, tremors, trouble walking), and physical issues like heart rate and blood pressure fluctuations, constipation, and fainting spells. To be diagnosed with LBD, an individual must have dementia as well as several of these symptoms.
  4. Medications and LBD can have adverse interactions.
    An accurate, timely diagnosis of LBD is essential to avoiding dangerous medication reactions. Many drugs prescribed to people with Alzheimer’s disease and Parkinson’s disease—especially antipsychotic drugs used to control hallucinations—can have a dangerous effect on people with LBD. Neuroleptic malignant syndrome (NMS) is a neurological disorder brought on by a negative reaction to antipsychotic medications that often occurs in people with LBD. Individuals who develop NMS can experience muscular rigidity, high fever, variable blood pressure and severe sweating. Anticholinergic medications, benzodiazepines and over-the-counter sleeping pills can also have negative effects on seniors with Lewy body dementia.
  5. Parkinson’s disease and LBD are very similar.
    People with LBD often exhibit the same symptoms as those with Parkinson’s disease dementia (PDD). While the two conditions start off differently, their biological underpinnings are closely related, and people with Parkinson’s disease can be diagnosed with either PDD or LBD. The factor that physicians use to distinguish between these two conditions is the timing of the onset of cognitive symptoms. People who develop dementia within a year of their Parkinson’s diagnosis are thought to have LBD, while those whose dementia symptoms start beyond the one-year mark are thought to have PDD.
  6. LBD affects sleep quality.
    Sleep issues and dementia often go hand in hand, but there’s a specific sleep condition that appears to disproportionately affect people with LBD. Studies indicate that as many as two-thirds of LBD patients struggle with REM sleep behavior disorder (RBD). RBD is an ailment that causes movement, speaking and gesturing during the REM (rapid eye movement) stage of sleep, which is usually characterized by paralysis in healthy individuals.
  7. Like most dementias, LBD is unpredictable.
    One of the biggest challenges facing seniors with LBD and their families is the fact that symptoms of the disease tend to worsen and improve erratically. Periods of mental fog, aggressive behavior, movement issues and vivid hallucinations can last seconds, minutes, hours or days. Fluctuations in symptoms can be caused by underlying infections, medications or general progression of the disease. Because of this, it can be nearly impossible to determine how far LBD has progressed in a given individual. However, if the exacerbating factor is capable of being fixed (like a urinary tract infection), then the person with LBD can often return to their prior level of functioning after receiving treatment for the secondary issue.
  8. LBD has no cure.
    There is currently no way to cure or halt the progression of LBD. Instead, treatments are aimed at controlling the cognitive, psychiatric and motor symptoms of the disorder. Those who have been diagnosed with the condition may benefit from palliative care, which focuses on using drugs and nonpharmaceutical treatments to manage symptoms and improve a patient’s comfort and quality of life. For instance, cognitive issues may be addressed with cholinesterase inhibitors, a type of medication that promotes brain cell function by regulating the neurotransmitter acetylcholine. To improve sleep quality and minimize the effects of RBD, careful treatment with clonazepam (Klonopin) or melatonin might be prescribed. Levodopa may be used to mitigate the motor effects of severe Parkinsonism. Occupational, speech and physical therapies are the most common nonpharmaceutical approaches to helping people with LBD manage their condition and maintain day-to-day functionality. Average life expectancy after diagnosis is about 8 years, with progressively increasing cognitive and functional disability.

Source: AginCare by Anne-Marie Botek

When to See a Doctor for Sleep Problems

When to See a Doctor for Sleep ProblemsIf you consistently have trouble sleeping at night, you may be one of millions of Americans who suffers from a sleep disorder. Almost everyone has had trouble sleeping at one point or another, but a sleep disorder occurs on an ongoing basis. Because there are more than 100 types of sleep disorders, it can be difficult to figure out what is causing your sleepless nights.

Here are the most common sleep disorders:

  • Insomnia is the inability to fall asleep or stay asleep through the night. It is the most common sleep disorder in the United States. About 15% of U.S. adults report having chronic insomnia.
  • Narcolepsy is excessive daytime sleepiness with sudden muscle weakness. Sleep attacks is another name for this condition.
  • Parasomnias are emotions, behaviors and activities that take place while a person is sleeping. Sleepwalking, sleep talking, sleep aggression, sleep eating, teeth grinding, and nightmares are parasomnias.
  • Restless legs syndrome (RLS) is the overwhelming urge to move your legs at night. This is usually in response to unpleasant sensations, such as creeping, crawling, tingling, burning, achy or itchy feelings. Moving the legs often relieves these sensations.
  • Sleep apnea is breathing pauses during sleep that last at least 10 seconds. Loud snoring, gasping, and choking noises are also typical symptoms. The most common form is obstructive sleep apnea.

Common Causes of Sleep Disorders

For most people, sleep debt is due to busy lives, shift work or “night owl” syndrome—staying up too late. Poor sleep may also stem from napping too much, depressionanxiety, caffeine or other stimulants, or simply getting older. However, sleep disorders can occur on their own. This is true for narcolepsy, RLS, sleep apnea, and even insomnia in some cases. Sleep scientists know that sleep is controlled by our genes, and many sleep disorders run in families.

Sleep Disorder Treatment at Home

Treatment and prevention strategies depend on the exact sleep disorder, but in general, making a sleep a priority and good sleep habits are essential. This includes having routine sleep times, keeping your room cool and dark, and limiting caffeine, nicotine and alcohol. Doctors also recommend limiting daytime naps, getting regular exercise, and not eating close to bedtime. Your doctor may have more suggestions based on your specific habits.

When to See a Doctor for Sleep Disorders

Talk with your primary care doctor or provider if any of these situations applies:

  • You have trouble sleeping at night for 30 days or more.
  • You find yourself drowsy or dozing off during the day, with impaired memory, alertness or concentration.
  • You have tried good sleep habits (good sleep hygiene) and sleep problems persist.

Who to See for Sleep Disorders

It is important to explore the possible causes of your sleeplessness and try to find a solution. Your primary care doctor will be able to talk about solutions, but may also recommend seeing a sleep medicine specialist for a full evaluation and diagnosis. A sleep specialist is also the best choice for advanced care and treatment if you have a clinical sleep disorder.

Source: Healthgrades. by Kate Kling

Take Time for You!

WHY YOU SHOULD TAKE TIME TO FOCUS ON YOUR HEALTHTake Time for You!

The United States spends more money by a wide margin than any other country on health care.  Our health care system is set up to keep us from dying, not thriving.  Our average life span barely makes it in the top 30 when compared to other nations.  As it stands now, the American health care system is poorly equipped to help us maximize our health span.  Health span is defined as a period of time in which a person is generally healthy and free from serious disease.

Health care costs in America continue to increase without actual positive change in our health status as consumers.  It is imperative that we take a leadership role in our own health care by continuing to be proactive.  Part of being proactive is learning how to care for and manage common non-life threatening injuries and illnesses.  The medical system is not designed to help you to maximize your health and well-being.  It is designed to prevent you from dying and to maximize profits for the corporatocracy that controls our health care system.  It is imperative that we manage our health by learning how to self-treat non-life threatening and non-emergent injuries and illnesses.

6 Reasons Why You Should Take Time to Focus on Your Health:

  1. Money – Health care is expensive. Many of the most common treatments and fancy diagnostic methods are not necessary.  Costs are only going to rise more in the future.  As this occurs, it will be even more important to be able to take care of the simple common place injuries and illnesses.  It will save you a lot of time and money!
  2. Empowerment – There is nothing more important than your health. You have control of most of the aspects in your life that affect your health status.  Taking care of yourself and your health needs leads to a sense of empowerment.
  3. Improved Care – If you understand how to be healthy and take care of yourself, you will be able to assist your medical practitioner in making the best decision on how to manage your care. Remember, it is your body and your health.  Being your own advocate will insure that you receive quality care.
  4. Quicker Recovery Time – Often by taking out the middle man, you can help to increase the speed of recovery. You can address the condition and help your body to initiate the healing response to insure a faster recovery.
  5. Emergency Situations – You never know when an emergency, such as a motor vehicle accident or inclement weather, may occur. You may experience an injury or illness during a camping trip when resources are a far distance away.  In the event of an emergency situation, you will be knowledgeable and equipped to take care of yourself and your loved ones.  (If necessary, please seek appropriate medical assistance as soon as possible.)
  6. Healthy Living – Take the time to focus on your health. Often, small changes in your diet, activity level, and relationships can make a big difference.  You can take control of your health and your life!

There is nothing more important than your health.  You have control over most of the aspects in your life that affect your health and well-being.  Take charge, and empower yourself.  Youmust be your greatest advocate.  Western medicine is designed to keep you alive, not to help you thrive.  Taking a passive role in your health is not a wise choice in America’s current health care environment.  Only you are responsible for your health.  Decisions now will determine how successful you age in the future.

Source: Age Gracefully America, By Ben Shatto

No Small Roles in the Fight to End Alzheimer’s

Actress Nikki DeLoach is best known for her role on the series “Awkward” and her television movie roles on the Hallmark Channel. In the past year, her family has faced both her father’s diagnosis of Pick’s disease, a type of frontotemporal dementia (FTD), and the open-heart surgery of her newborn son Bennett.

Tell us about the last year and your experiences with your son and father.
In my house, we call the past year “the best and the worst” year of our lives. In the past year, I’ve experienced two open heart surgeries with my baby and the diagnosis of my father with Pick’s disease.

Both experiences were extraordinarily challenging and traumatic, however, my faith has grown exponentially. I am reminded daily of all of the miracles that have happened, the times we’ve been given mercy and grace as a family. We have hundreds of angels surrounding us — dropping off food, taking my oldest son on playdates and sleepovers, prayers … lots and lots of prayers. We are very blessed to be surrounded by an incredible community of people who have lifted us up in our time of need.

We live in times where there is still a stigma around sickness. My husband was hesitant to share information about my son’s heart defect with others. My mom felt the same about sharing my dad’s diagnosis. I knew from past experience that it is critical to not only reach out and ask for help but to share your story. When I gave birth to my first-born, Hudson, I didn’t want to admit to myself that I was going through severe postpartum depression. The shame I felt about not having those warm, fuzzy feelings other mommies felt after giving birth was palpable. I was struggling, and I waited a very long time to seek help, which was detrimental to me and my family.

I approached Bennett’s heart condition differently. I knew I would need help. After getting the word out about what we were dealing with, we had a referral for an appointment with the top children’s heart doctor in the country within a week. I have seen firsthand the power of asking for help when you need it; I no longer wait to ask. Also, by you sharing your story, you empower others to open up so that they no longer have to move through their pain in isolation.

When it came to Dad’s diagnosis, I said to my family: “People want to help us. People want to reach out. There are other people going through this, and we will never know how sharing our story may help another family.” When I know someone else is going through what I am going though, it helps me as much as it helps them. It helps us all feel less alone. I want people to be able to speak more openly about the help they need, because I have been there, and I know how important it is.

Dad’s diagnosis of Pick’s disease is very rare and affects the frontal lobe of the brain. It is fatal, and very aggressive. This illness completely changes the person. My dad is not the same person he once was. He was my touchstone, my moral compass … the most kind, loving, honest, patient and emotionally available human. I always used to say that he was so calm that he was one step above being asleep all the time.

There is not an ounce of that in him now. His patience is nonexistent. He can’t sit still; he sits down for five seconds and then begins pacing or heads out the door again. His memory doesn’t seem to last more than 60 seconds.

Dad always prided himself on “looking sharp”, as he would say. He wore nice cologne and loved to put on a crisp, ironed shirt. Now, we have trouble getting him to shower and wear clean clothes. One morning my mom discovered that he had put on four different shirts and two pairs of pants.

Although Dad was diagnosed just last summer, his symptoms have swiftly progressed. He may not even know who his kids are in six months.  We saw this with my grandfather, who passed away with Alzheimer’s disease. In that case, however, grandpa progressed slowly, and my family was able to wrap our brains around each transition. With Dad, it has been dropped at our doorstep. “Boom! Dementia is here.” Oh, and did I mention that he is only 64 years old? Yes. 64 years old. It’s devastating and so painful to watch and experience.

How has your mother been coping as a caregiver since your father’s condition has progressed?
It has been so hard. She is not only losing her husband, she is losing her friend. She has to be ten steps ahead of him all of the time, which is exhausting. She often lives in fear of him hurting himself or someone else because he is losing his ability to understand safe behavior.

We have to be super mindful of the spouses of people with the disease. They often experience a decline in health as well. The wear and tear caregiving does on the body and mind is substantial. It is a 24-hour job.

My mother has risen to the occasion in such a way that nothing short of heroic. However, heroes also need a team of people that lift them up and support them. This is why I encouraged her to reach out to her local chapter of the Alzheimer’s Association. The people who have been supporting her there are angels. They are helping her learn how to cope with what is happening to her and how to help my father.

Soon after reaching out to The Alzheimer’s Association for help, my mom did something incredible. Working with the Association gave her the wings to create a support group in her community, somewhere she felt safe talking about Dad — her local church. She is bringing in speakers and people involved with the Association who can help anyone and everyone who needs it. I am beyond proud of my mother for doing this. She has turned her pain into purpose, which is so courageous. I hope the group will grow as more people see how important it is to talk about what they are going through.

Can you talk a bit about your experience as a long-distance caregiver? How is your role different from those of your other family members? How do you all work together?
I live in Los Angeles, and to be away from Dad has been gut-wrenching. My dad does have support, as my whole family lives on our farm in south Georgia. This includes my mom, dad, brother, sister and her husband, their kids, my cousins, uncle, grandmother – my entire family.  But because I have a baby who has had two open heart surgeries in the last year, I have not been able to travel back home the way I used to. This has made everything even more difficult. In the past, I would fly home every other month.

There is nothing more I would love than to be able to be home, helping both my mom and dad. He did so much for me as a child. He was an amazing dad. I am desperate to give back to him for all that he has done for me. It’s just not possible right now, not until Bennett is completely well.

However, I support my family in other ways — phone calls, connecting my mom with people who can offer her local support making sure everyone in my family is on the same page and connected, or having my mom come stay with me in L.A. to give her a break. By staying connected, I can also track how my mom is coping and stay ahead of her needs at all times.

I am flying home with my older son in a few weeks to see my dad, and while it never feels like enough, I have to remind myself that I am doing the best I can given the circumstances facing my family.

At the end of the day, we have each other’s backs and stand together as a family. If you don’t have that family support, ask friends if they can be part of your support system. I’ve found that ten times out of ten, people will raise their hands to help.

What are some of the ways you’ve been spreading awareness of Alzheimer’s and dementia?
I’ve brought awareness to Alzheimer’s and dementia by starting a Walk to End Alzheimer’s team, posting blogs on my website “What We Are,” and speaking at events and on television. For Alzheimer’s and Brain Awareness Month in June, I hosted Hallmark’s morning show “Home and Family.” I wore purple and spoke on air about my dad, his illness and how people can help.

In the film industry, there are no small roles. Whether its hair and makeup, grips, PAs, an actor with one line or the lead, every role matters. I believe in this outside of the industry, too. There are no small favors. There are no small acts of service. In raising funds for the Walk to End Alzheimer’s with my friend Ashley Williams, we started by asking for small donations. After all, if 100 people give $5, that is fantastic. Every dollar raised, every friend that showed up to the walk, every person who posted on social media — it all makes a difference.

I’ve overcome so much in my own life. And now I am certain that that entire struggle was just preparing me not only for the last two years of my life, but to be able to use my platform for good. Between Children’s Hospital of Los Angeles and the Alzheimer’s Association, I feel a tremendous sense of purpose in my life being able to help others.

How do you share the life lessons you’ve learned and your bond with your dad with your own children?

It’s my dad’s mind that has a disease, not his soul or spirit. We have to just keep finding ways to connect with his soul. Music is a really big part of our story. He has always loved music and it has helped tremendously in his struggle with dementia. It’s like the music passes right through the disease into his spirit and being. My dad and I always bonded over music and I’ve passed that along to my children. We always have music on in the house and it brings great joy to our lives. And, in a way, I feel like I am passing along the legacy of my dad through music.

Every day I teach my boys about kindness, patience, giving back and being responsible – all the things my dad taught me. And I don’t just teach it, I live it. My philosophy is that you live your beliefs not through your words but through your actions. Walk the talk. I also am very involved in their lives. Just like my dad was my basketball coach and drove me to voice lessons, I am on three committees at my son’s school. I am there all the time.

What advice do you have for others grappling with Alzheimer’s or dementia in their family? What advice do you wish you had been given?
I recently completed a movie in Vancouver, and it was no accident that my driver to and from set was a woman whose dad also had Pick’s. For us to be paired together every day on that project was divine. We were meant to meet in that van. She gave me a really amazing piece of advice. She told me to love my dad, but not just with my heart. She said: “Touch him, hug him, kiss his face, give him all the physical contact and love you can possibly give. It’s not just for him; it’s also for you.” I thought that was beautiful. Every time I am with my dad, I hug him, I hold his hand, I rub his back and comfort him. In those moments, he connects with me. It’s almost as if our physical connection, like that with music, reaches his spirit.

Another piece of advice came from my dear friend Ashley Williams. Ashley and her sister, Kimberly, would text all the moments they experienced with their mom to each other – the difficult, heartwarming, and hilarious. They wanted to remember it all … together. I loved that. It’s like sharing a journal with your siblings. Sometimes you neglect to recall these stories when you are in the midst of the disease, but if you keep a text message chain going, you stay connected.

What lessons have you learned along the way?
I’ve found that you have to find the humor in the more difficult moments. I remind my mom of this daily. She was recently belaboring over her grandkids eating too much sugar. “These kids are going through Pop-Tarts like crazy!” Then she went out to my dad’s truck. There were piles of boxes and boxes of Pop-Tarts that he had been stockpiling; one of his many odd behaviors due to his disease. Yes, it is heartbreaking. But at the same time, it’s a 64-year-old man hoarding Pop-Tarts! You have to laugh.

Surprisingly, working in the entertainment industry has helped me cope with everything that comes with Dad’s diagnosis. I know not to take anything personally. You can only control your reaction to something, not other people’s behaviors. Especially when they have this disease. He or she will forget your birthday. You may not get a Christmas gift. You will be sick and they won’t think to make you soup or take your temperature. You will get yelled at or called names. It comes along with the territory. When someone you love with Alzheimer’s says something hurtful, you have to remember that it’s the disease speaking, not the person.

I’ve also been given great purpose in the last few years. I used to believe my purpose was to be an actor, producer, writer. Now I know that those things are my job. My purpose is greater than any job. You can definitely live out your purpose through your job, but it is not your purpose. My purpose is to become the best version of myself in this lifetime and to leave the world in a better place than I found it. I want to help make people’s lives better. I want to make a difference. Being a spokesperson for the Children’s Hospital of L.A. and a champion of the Alzheimer’s Association has given me tremendous purpose, and I couldn’t be more grateful. Life can be devastating and heartbreaking and you can also find great purpose and so much good in that pain. Miracles are all around us. A fantastic support system is just one call away. There is goodness all around us. We just have to be vulnerable and brave enough to open our hearts to it.

About Nikki: Nikki can be seen in the Hallmark movie “Reunited at Christmas,” which she also executive-produced. She also participated in the Los Angeles Walk to End Alzheimer’s on November 3 with friends and family.

All photos are courtesy of Nikki DeLoach.

Source: Alzheimer’s Assocition

Person-Centered Care at the Heart of Aging Life Care Managers® Work with Aging Adults

 Person-centered care is the idea that a person’s perspective, goals, and values should be at the forefront of their medical care. This method focuses on providing “thoughtful, systematic, and incremental” approaches to a patient’s health plan. It is now being recognized that placing the patient at the center is one of the more effective ways to promote positive health outcomes, as highlighted in two new articles published in the Journal of the American Geriatrics Society (JAGS).

Aging Life Care Managers® have promoted person-centered care in their own field for decades, working with families to create care plans that have the client’s goals at heart. These professionals, also known as geriatric care managers, help older adults and those with disabilities to coordinate the resources and funding needed to support their desired care plan. This can mean bringing in caregivers so that the client can continue to live at home, or finding the right assisted living facility to meet their needs. Aging Life Care Managers can help families who need a variety of services, including:

  • Health and Disability – From physical problems to mental health and dementia-related problems, Aging Life Care Managers interact with the health care system effectively and frequently. Aging Life Care Professionals attend doctor appointments and facilitate communication between doctor, client, and family.
  • Financial – Services may include reviewing or overseeing bill paying or consulting with a client’s accountant or Power of Attorney. Aging Life Care Managers provide information on Federal and state entitlements, connecting families to local programs when appropriate. They also help clients and families with insurance concerns, claims, and applications.
  • Housing – Aging Life Care Managers help families and clients evaluate and select appropriate level of housing or residential options.
  • Families – Aging Life Care Managers help families adjust, cope and problem-solve around long-distance and in-home caregiving, addressing care concerns, internal conflicts and differences of opinion about long-term care planning.
  • Local Resources – Aging Life Care Managers know the local resources in their communities and can help connect clients with the appropriate services.
  • Advocacy – Aging Life Care Managers are strong and effective advocates for clients and their families, promoting the client’s wishes with health care and other providers, ensuring that client’s needs are being adequately addressed.
  • Legal – Aging Life Care Managers refer to legal experts, like elder law attorneys, estate planners, and Powers of Attorney. Some provide expert opinion for courts in determining level of care and establishing client needs.
  • Crisis Intervention – Aging Life Care Managers offer crisis intervention when it is needed, helping clients navigate through emergency departments and hospitalizations, rehabilitation stays, and ensuring that adequate care is available to the client. For families that live at a distance, this can be a much-needed 24/7 emergency contact.

If you or your loved one needs care management services, visit the Aging Life Care Association® at http://www.aginglifecare.org to find an expert near you.

ABOUT the Aging Life Care Association ® (ALCA): ALCA (formerly known as the National Association of Professional Geriatric Care Managers) was formed in 1985 to advance dignified care for older adults and their families in the United States. Aging Life Care Professionals® have extensive training and experience working with older adults, people with disabilities, and families who need assistance with caregiving issues. They assist families in the search for a suitable nursing home placement or extended care if the need occurs. The practice of Aging Life Care™ and the role of care providers have captured a national spotlight, as generations of Baby Boomers age in the United States and abroad. For more information or to access a nationwide directory of Aging Life Care Professionals, please visit http://www.aginglifecare.org.

Source: Aging Life Care Association 

How You Can Help Seniors Facing the Holidays Alone

How You Can Help Seniors Facing the Holidays AloneImagine waking up alone on Christmas morning, with no one to share in the joy of the holiday with you. Imagine getting dressed the way you always do, having breakfast the way you always do, and watching TV as you always do—nothing special about this day, no grandchildren squealing with delight as they tear open packages under the tree, no family dinner to look forward to later.

That is the scenario faced by tens of thousands of seniors who have no living family members or whose relatives who live far away and can’t visit at Christmastime. These seniors may come from a variety of faiths or backgrounds, but what they have in common is an estrangement from the holiday season, their faith traditions and all the seasonal merriment.

According to the National Center for Health Statistics, as many as half of all long-term care residents have no living relations. Of those who do have family, around 60 percent of them never receive a visitor.

If that statistic makes you feel sad, consider it may be just the tip of the iceberg. It’s possible a similar number of seniors who reside at home or outside a care facility also lack regular visitors, either because they have no relatives or because their families are disengaged.

This holiday season, you have the opportunity to make a positive contribution to the lives of these forgotten seniors. Here are some ways you can make the holidays merry for them.

Problem: Family members live far away and can’t travel to visit during the holidays

Solution: Go high-tech

Help arrange a real-time video chat between the senior and his or her family members using a tablet computer. Software programs like Skype and FaceTime offer free or low-cost options for video conversations.

If the video chat goes well, don’t restrict it to the holidays. Offer to facilitate regular face-to-face teleconferencing each week or month.

Problem: Seniors receive no gifts or greetings during the holidays

Solution: Be a Santa to a Senior

The Be a Santa to a Senior®  program, sponsored by Home Instead Senior Care®, makes the holidays merrier for those who will not be receiving gifts or visitors during the season. You can submit the senior’s information to a local participating Home Instead Senior Care office and allow him or her to be surprised with a personally delivered present. And while you’re at it, don’t forget to pull an ornament off the giving tree yourself to provide a gift for a lonely senior.

If your area doesn’t have a Be a Santa to a Senior program, look for similar opportunities through retailers and faith communities.

Problem: Isolation during the holiday season

Solution: Take a drive

Many seniors face the challenge of being isolated throughout the year. Physical frailty and giving up the car keys can keep a senior cooped up at home. This can be especially depressing during the holiday season.

If you are a private one-on-one caregiver, you can help alleviate the senior’s isolation by taking him or her for a ride to view holiday lights and decorations or to tour the fall foliage. If the senior gets around reasonably well, take him or her to the food court at the mall to sit and view the bustle of shoppers and the beautiful decorations.

If you work at a facility, try to arrange a holiday lights field trip for your residents who are capable of participating. You might be able to find a community sponsor to provide vans and additional supervision.

Problem: Seniors can’t share family memories because relatives are absent

Solution: Pull out the photo albums

One of the best parts of gathering with family during the holidays is sharing the “family lore”: funny or poignant stories of past events. When seniors have no living relatives, it means they can no longer share that story of the time the dog tipped the Christmas tree over or that time when Uncle Joe’s Santa beard fell off and revealed him as a fraud to the shocked young cousins. You can step in and act as a surrogate family member by asking to see family photos and encouraging the senior to tell you stories about the people and events pictured.

Problem: No way for a senior shut-in to volunteer during the holidays

Solution: Perform acts of charity from the living room

Many people volunteer for charity work during the holidays. If a senior you care for was one of the people who volunteered, he or she may feel they are missing out on a key part of their traditional holiday experience.

You can help them by participating in acts of charity right from their residence. They can buy a box of holiday cards and address them to troops stationed overseas. Or they can crochet blankets for babies at the children’s hospital. When you help them perform an activity that ‘gives back’ to the community, you let them engage in a meaningful way with the holidays and may boost their self-esteem and overall sense of well-being.

Of course, while caring for a lonely senior during the holiday season, it can be difficult to maintain professional boundaries. You may want to “go the extra mile” to express your fondness for some of your clients, but do not give or accept gifts if your employer’s policy prohibits it. Remember your presence in a senior’s life may be the greatest gift of all—no other present necessary.

How do you brighten the holidays for your clients? What challenges do you face? Tell us more in the comments!

Source: CaregiverStress.com

How to Stay Sane During the Holidays as a Sandwich Generation Caregiver

If one can believe the old Westerns, frontier women were the ultimate multi-taskers. They could rock a cradle with their foot to quiet a squalling baby while pounding out bread dough with their fists, minding a full crew of young kids and maybe dodging a few bullets in the process. Oh, yeah, and since it was just days before Christmas, these women would also be knitting gifts for the family during odd bits of time.

That scenario sounds like a walk in the park compared to the lives of some modern caregivers, especially those who belong to the sandwich generation. These men and women work overtime to raise children while caring for their aging parents. During the holiday season, nearly every parent has one, if not several, school holiday performances to attend and church or other religious programs to participate in. Many have a full-time job, which often requires attendance at office functions outside of work hours, not to mention festivities during work time that require a big smile and a batch of homemade cookies. Sound familiar? All of this is expected in addition to maintaining traditions and holiday cheer at home.

Prior to an aging parent’s health issues, the busy season described above would be a “normal” Christmas for you and your family. Things would be rushed but still mostly pleasant. Not now. The house sits undecorated, your favorite cookie recipes have been swept into a corner on the kitchen counter, you’re behind on your holiday shopping and when you attend your kids’ programs, you fight to make yourself look like you actually want to be there. The addition of caregiving is often the tipping point between enjoying the holiday season and teetering on the edge of insanity.

Caregivers Tend to Spread Themselves Too Thin

You think back. Mom had always been helpful, doing some of the baking and stepping in when you needed help with the kids. Dad was good natured and would even pitch in with some decorating tasks when your husband was traveling. Now your parents both need help. Lots of help. Your kids still need you. Your spouse needs you. You feel like everyone wants a piece of you. You feel angry and that leads to guilt. Why does this feel so unfair? And where is the will to celebrate? What’s a caregiver to do?

You know this is your new normal, at least for the present. And it’s still the holiday season. Somehow, you must carry on and make it special for your children and your parents. It’s tough, but it is possible to find a balance and stick to it.

Getting used to this new normal will take some sacrifices from everyone in your family. It’s important to have a frank discussion with your kids and your spouse. If your parents are still cognitively sound, it’s important to talk with them, too, even if they aren’t keen on hearing you out. Tell them that you love them and that this holiday season will still be fun and special, but that it’ll be a little different compared to previous years.

Accept That the Holidays Have Changed

Your kids will understand if you only make a few different types of cookies this year rather than your usual massive spread. Just focus on the favorites. When decorating, don’t let storage bins full of lights and ornaments overwhelm you. Pick out your favorite decorations that mean the most to your family and ask the kids to pick out a few of their favorite items as well. Even if the holiday celebrations have been downsized, you’ll know that the most important traditions are still intact.

Include your kids in the cooking, decorating and visiting with your elders. If you can convince them to do something for their grandparents, that is even better. Having a few extra pairs of hands to help is a game changer, so dictate a few tasks for your kids to do around your house and your parents’ place(s).

Learning to say no to invitations or at least scale back on your commitments is important, too. Consider allowing someone else to host the big family dinner, purchasing your dish for the office potluck instead of making it yourself, or asking other close families if your kids could tag along for holiday activities like the tree lighting ceremony or ice skating.

Because I had so many elders to care for at once, I had several apartments and rooms at long-term care facilities to decorate. My house got less attention. Baking got whittled down to the classics as well. My own Christmas cards got short shrift. But my sons, my elders and I enjoyed this time together and that is what’s most important.

Likely, you will find you must follow a similar pattern. You can’t do everything the same as you did when the kids were young and your parents were healthy. Life has changed. Accepting that change is your first step toward keeping your sanity. In the end, you may find that a more low-key approach to the holidays leads to the development of new traditions. The upside of focusing less on the food, frills and gifts is that you have more time to spend with the people you love.

The Holidays Will Go On

If you find yourself feeling guilty or running low on holiday spirit, it may help to reflect on holidays past. How did your parents cope with the aging of their own parents? Remember when you were in grade school and Grandma had a heart attack? You weren’t stunted for life because your mom couldn’t complete all the traditional duties for the family that Christmas. You instinctively understood. Maybe this peek at real life even helped you grow and learn how family steps up to care for one another.

Holidays are undeniably hard work. When you add elder care to the mix, the most wonderful time of the year can seem like anything but. The only way I know of to avoid feeling overwhelmed is to determine what really matters to you and your family and only do those things. Do as much for your parents as you can, but if they have in-home care or live in a long-term care facility, let the professional staff do their part. Do as much as you can for your kids, but let them grow up a little and witness the cycle of life and the demands that elder care places on you. It’s likely that your family doesn’t truly understand the lengths you go to to ensure everyone is healthy and happy. A glimpse behind the veil might awaken in them a whole new sense of appreciation for all that you do.

Source: AgingCare by Carol Bradley Bursack

Debunking Myths ABout the Aging Brain

7 Myths About the Aging Brain

Debunking Mythgs About the Aging Brain

Taking up new activities such as painting or learning to play a musical instrument can boost your brain health.

When it comes to what happens to the brain as it ages, don’t believe everything you hear. There are many myths about the ability of older people to keep their memory and concentration in tip-top shape.

There is no evidence that brain games, for example, live up to their promise of better mental acuity. That’s one finding in a new report by the Global Council on Brain Health (GCBH), an independent collaborative of scientists, health professionals, scholars and policy experts that was convened by AARP.



 

Here are some of the myths the GCBH examined and why they’re wrong:

1. Older people can’t learn new things. Not so. Trying new activities can actually stimulate cognitive skills. Seeking out new social connections that involve learning names and information about the people you meet, going back to school and taking up a new musical instrument are just a few examples of activities that can boost your brain health.

2. You’re stuck with the brain you were born with. Also not true. Brains are made up of cells called neurons. While it’s true that most of the neurons are created before birth, studies have shown that new neurons can be created in the area of the brain that deals with learning and memory. Researchers hope that by better understanding how new neurons are created, they can help individuals with brain injuries and neurodegenerative diseases.

3. Experts don’t have a clue about how the brain works. Actually, scientists are learning more about the brain every day. Granted, it is a complicated organ. But new treatments for neurological conditions are coming to light, and researchers expect exciting breakthroughs down the road.

4. It’s inevitable that older people will get dementia as they age. Not true. Dementia can be caused by Alzheimer’s disease or age-related events, such as a stroke. But getting older doesn’t automatically mean you will get dementia. And it doesn’t mean you are developing dementia if you can’t remember the name of an old acquaintance you run into at the grocery store.

5. Learning a new language is for the young. It is usually easier for children to pick up a new language, as sentence structure tends to be less complex for them — and they tend to be less self-conscious when trying something new. But adults also can learn a new language. In some countries, such as Sweden, it’s common for retired people to take classes for a third language.

6. Older people are doomed to forget things. Being forgetful about details such as names and facts happens to everyone, no matter his or her age. Poor memory can often be attributed to lack of attention. Some helpful tips on remembering include writing things down (such as shopping lists) and taking note of visual details associated with your surroundings.

7. Just take memory training, and you’ll be fine. Not exactly. While it’s a good idea to look for ways to fine-tune your memory, if you don’t practice those skills and keep challenging your brain, all that hard work will be wasted. It’s the ultimate “use it or lose it” advice.

Debunking Myths About the Aging Brain

 

 

 

 

 

 

 

 

Source: AARP.org/Global Council on Brain Health

How to Console a Senior Who Is Afraid of Dying

“I’m dying.” These are words that most of us dread hearing from the people we love. However, death is an inescapable part of life. If it hasn’t happened already, chances are you’ll be called upon to help a parent, spouse, friend or other loved one through the valley at some point. Yes, it can be a terrifying prospect, but it is also an honor. This is a valuable opportunity to help your loved one make the most of their remaining time on earth, to assist them in taking the next step without regret, and to create priceless memories for you to cherish once they’re gone.

There are some hurdles throughout this process, though. The end of life often stirs up many powerful emotions, among the most poignant being anxiety. Because death is different for everyone and we know so little about what happens after a person passes, patients and family alike are often overwhelmed by fear of the unknown. Below are the seven most common fears associated with dying and how caregivers can help console their loved ones at the end of life.

Fear of the Dying Process

Apprehension about the actual dying process typically stems from a fear of pain and discomfort. People at the end of life may wonder, “How will I get through this?”

Make sure your loved one knows that they will experience little or no pain unless they choose to. Hospice care providers specialize in providing pain and symptom management for terminal patients. Staff members are trained to interpret what patients need by reading verbal and nonverbal cues, and they will discuss the benefits and drawbacks of each option with patients and their families.

Fear of Losing Control

Some individuals who are dying are able to continue leading a relatively active and normal life until the very end. But those who are very ill typically must rely on family members and caregivers to help them with activities of daily living (ADLs) in their remaining months, weeks or days. Many patients are uncomfortable with the thought of depending on others for supervision and assistance, and this is normal.

To help dispel this fear, encourage your loved one to stick to their usual routine for as long as possible. A life-threatening or terminal diagnosis does not change who the person fundamentally is. When it becomes clear that they will need to accept care from others, arrange for them to meet with and get to know their caregivers in advance, especially if medical professionals are involved. Becoming familiar with nurses and aides before their full services are required can alleviate discomfort and fear.

Furthermore, if you haven’t already discussed end-of-life wishes with your loved one, time is of the essence. Most people execute a living will, do-not-resuscitate order (DNR), physician orders for life-sustaining treatment (POLST) form, or other legal document to spell out the type of care they DO and DO NOT wish to receive. Discussing these matters and putting them into writing while your loved one is still competent to make decisions will help them feel more confident that their wishes will be respected even if they are unable to convey them.

Fear of Leaving Loved Ones Behind

Some people at the end of life wonder less about their own predicament and more about how their loved ones are coping and how they will handle the loss. They may wonder, “What is going to happen to my family? How will they manage after I’m gone?”

Only those closest to the dying person can alleviate this fear. Be willing to frankly discuss with your loved one what will happen to everyone once they die, and do everything you can to reassure them that you will all be okay. If children or dependent adults are involved, help to formulate a detailed plan for their future care.

Fear of Others’ Reactions

The focus during a loved one’s end-of-life experience is to keep them as comfortable and relaxed as possible. This is not an easy process to go through or to witness, and emotions usually run high. It’s natural to feel fear and sadness, but after the initial shock has worn off, try to behave normally. Relish this time together instead of dwelling on the inevitable loss. It is okay to express your true emotions but remember that this experience is not about you. Be respectful of your loved one’s need for peace and support.

Make sure that all caregivers and family members (yourself included!) are getting enough sleep, healthy meals and emotional support. The effects of going without these necessities is evident in both appearance and demeanor and may cause your loved one additional worry. Lastly, ensure that all caregivers and visitors are told in advance what to expect. This will help to avoid reactions of shock or fear that can be unsettling for the dying person.

Fear of Isolation

Fear of any kind typically causes us to long for the company and reassurance of those we love most. The possibility of facing the end of life alone would cause anyone considerable anxiety, and this is a common concern for many seniors. They wonder if their friends and family will come to visit them and if they will continue being attentive and supportive until the very end.

Quite simply, make sure that regular visits with close friends, family members and volunteers are scheduled. Ensure the senior feels loved and important, but avoid exhausting them with nonstop visitors. If you don’t live near your loved one or cannot commit to frequent visits for other reasons, consider taking advantage of hospice care providers, volunteer organizations or church ministries. End-of-life care from these groups may include regular visits from nurses, aides, clergy, musicians or volunteers that can dramatically increase a patient’s quality of life.

Fear of the Unknown

Will there be life after death? What can I expect? Everyone has dwelt upon these questions at one time or another. Even the greatest self-professed skeptic wonders what will happen after they take their last breaths. Addressing this concern has physical, emotional and spiritual implications. Even if your loved one is not religious, consider asking a priest, rabbi, minister, pastor, etc. to come speak with them. Outside resources such as these can offer a gift of peace, regardless of past doubts and skepticism.

Fear That Life Has Been Meaningless

People who are leaving this world need to hear that they are valued, that their accomplishments had a positive impact on the world and that they won’t be forgotten. Don’t miss the chance to tell your loved one how much they mean to you and remind them of all the good they brought to your life. Reassure them that their life had purpose and meaning, and encourage others to do the same, either in person or through cards and letters. Also, take time to go through photo albums, share memories and absorb life lessons from your loved one.

Source: AgingCare – Donna Authers