Welcome to Nevadacaregivers.org!

Welcome to nevadacaregivers.org!

The Community Foundation of Northern Nevada’s Caregiver Support Initiative is directed at the needs of unpaid family caregivers to seniors.

We are proud to share the launch of our new and improved resource directory, nevadacaregivers.org, formerly known as washoecaregivers.org.

The user-friendly website will help ease the confusion that caregiving can sometimes bring.

Getting started as a caregiver can be challenging. Caregiving jargon like respite care and community-based care can be a puzzle. Many have contacted the Community Foundation saying they don’t know how to start as a caregiver.

To guide through the maze of resources and complex topics, we created the “Not sure where to start” section and “I need help with…” drop-down menu to help people navigate common caregiver scenarios, including needing a break and finding living arrangements for an aging family member.

Another new feature is the most popular searches list section, which gives you 6 of the most frequently searched resources caregivers have looked for on the website. This can help you narrow down the best options for your needs.

Before nevadacaregivers.org went live, we invited family caregivers to test the website for feedback with Mesh Creative Web Developer Milan Sperka. Caregivers shared feedback to make the website easier to navigate, which Milan incorporated into the site.

All of our other resources such as the Nevada Caregivers Guidebook, Caregivers’ Compensation Guide, important documents, and more are available on the website.

We invite you to visit nevadacaregivers.org and share with anyone in need of caregiving resources. For any questions or for more information, call the Community Foundation at 775-333-5499.

The Importance of Self-Care

In this edition, Christy Pappas, family caregiver, discusses just how important self-care is and how it makes a big difference in the lives of caregivers.

The last few years have been a challenge.

My parents moved in with my husband and I in 2014. My dad was falling and had the beginning stages of dementia. In 2015, my mother was diagnosed with cancer.

A few years later, my husband suffered a stroke. I was all alone and could not afford help. I also could not bring myself to consider assisted living. So, for the past 7 years, I was on my own.

But it did not have to be. I never understood when people told me I needed to take care of myself and I, honestly, would get upset when people suggested it. They have no idea how ridiculously impossible it is for me to even think about myself.

But I’m here to let you know that there is a way to take care of you. Because if you do not, you will suffer, and the people you are caring for will suffer with you. I know many caregivers throw up their hands and may think, you walk in my shoes.

Well, I think I can safely say, I have walked in your shoes, I know, and I care.

I am reaching out to caregivers to help make possible, what feels “impossible.” My father passed in Jan. 2021, and my mother lost her last bout of cancer in Nov. 2021. My husband still needs care, but I have learned to take care of me, and I no longer lie in bed crying when everyone is asleep at night. I finally opened my eyes and now I really do see.

Now, for self-care, I do yoga every morning, exercise outdoors, once again, and pray every day. Patience, faith, hope and love are a huge part of my everyday being. And I forgive myself for not being perfect, because I know I do everything I can do- the best I can do- for others, always.

But I know it’s a different journey for each of us getting to this place. And finding the path to take to get there was crucial for me. I’m grateful for my experiences. I’ve grown much stronger; humbler.

There are always people to support you…you just need to ask.

For more information on support groups, please call the Community Foundation at 775-333-5499.

By Christy Pappas

How to Make an Appointment During COVID-19

How should you prepare for an in-person appointment in this time of Covid?

If you are living with one or more chronic medical conditions, it may seem you are constantly seeking the help of a medical professional.  The pandemic of COVID-19 has many people concerned about leaving their home and going to a health care facility and many offices have been encouraging virtual medical appointments.  These are helpful but often not as comprehensive as an in-person appointment.

If your doctor recommends an in-person appointment, know that healthcare facilities, such as hospitals, doctors’ offices, surgery centers and all sites of care are taking precautions to ensure your care is safe and that you are protected. Therefore, you should not postpone necessary care or preventative care such as physical exams, immunizations or cancer screening. Do not hesitate to reach out to your provider if you have any questions about when to seek treatment.

When you make an appointment to be seen in the office, check the visitor policy before you go. Because of the pandemic, some offices are limiting who can come inside.  Let the office know if you need special assistance of any kind!

If caregivers are NOT able to be in the room during the appointment, ask if you canjoin the appointment via phone call on “speaker” or videocall (such as Facetime).  This can be extremely helpful especially if there are any medication changes, procedures scheduled, or important questions needing answering.

These are some tips to prepare for the appointment of the person you are caring for:

  • Arrive on time and make sure the person you are caring for has their insurance cards and ID. 
  • Bring a current list of medications — names, dosages and frequencies, as well as any refills needed.
  • Bring the person’s symptom history that includes where they are hurting or having problems, when their symptoms started (with dates), how long they last, what makes them better, and what makes them worse. 
  • Bring a list of any changes in their routine such diet, exercise or activity, sleeping patterns.
  • Bring their daily monitoring log if you use one (blood pressure/heart rate log, diet log, activity log, blood sugar log).
  • Have written list of questions so that you don’t forget a key issue and you can take notes of the answers provided.
  • During the appointment, don’t withhold information.  Their physician cannot help if you do not honestly give the whole story of what’s going on.
  • Get clarification of anything you don’t understand.
  • Write down the physician’s answers and directions. Make sure you can hear and understand what the physician is saying.
  • If there is a new test, medication or treatment planned, be sure you understand the risks and benefits.
  • Ask for patient education materials if available to read when you get home.

Remember medical providers want to help you to the best of their abilities.  But YOU are your family member’s best advocate and are an important partner in getting the best care possible for them.

You can find more resources on Parkinson’s Disease by visiting Nevada Caregiver’s Chronic Conditions and Diseases resources.

By Mindy Lokshin

Preparing to Care for an Aging Parent

Preparing to care for an aging parent ahead of time is important for everyone to do.

The year I turned 42, my mother became depressed. She had to say goodbye to her beloved dog with whom she shared with my father.

The night Mom lost her companion, she felt truly alone and realized it was time for a change.

She decided to move to Reno to be closer to family. Eventually, we found a large home for an active family of three and her. Living with my mother was an adjustment I was not eager to make.

At that point in time of my life, if I had thought of mortality or aging at all, it was from a distance, like when my grandparents died or my father’s unexpected death from a brain aneurism. I assumed that my athletic, curious and adventuresome mom would die peacefully someday, but not in the immediate future.

Mom made good friends in Reno, adjusted to retirement and explored her artistic leanings, traveled and got another dog.

But she was different. We discovered later on that she had dementia.

During the 18 years that Mom had lived with us, her caregiving needs ranged from common needs that most people experience at every age, such as acute care after surgery, brief illness or injuries, and emotional support. However, the last 7 to 8 years became intense as her dementia manifested and progressed. Her all-encompassing care needs became the primary focus of my life.

Was I prepared for my caregiving role? No, and I didn’t accept it easily. I couldn’t talk or even think about what was in store for us. We did not discuss her advancing needs or our expectations earlier before she was diagnosed. When I felt the need to have the conversation with her years later, she was unable to think clearly and was driven by fear and confusion. We had missed an opportunity to help us both prepare for caregiving and receiving care ahead of time.

Now, am I wiser? Am I prepared to be a caregiver again or be cared for? I will need to lean on someone, and it will mean leaning hard one day. Who will that person be? My husband? Our children? Because of our family’s experience, these questions are less mysterious, less fraught with fear and denial, though still uncomfortable.

Discussing caregiving, caregivers’ expectations and accepting care is easier after realizing it is intrinsic to life as a human being. We are all connected species from birth.

If you are embarking on caregiving, or feel you need care, I suggest visiting the planning resources on the Nevada Caregivers site.

Additionally, connecting with caregiver support groups are also helpful and essential. Reach out and start conversations with people.

Remember, you are not alone.

Click here for more Alzheimer’s and dementia resources. You can also call the Community Foundation at 775-333-5499 for additional resources.

By Margaret Stewart 

How to Avoid Caregiver Guilt

The majority of the time, the caregiver will set high expectations for how they can help the care recipient. In reality, their goals are unrealistic, and as a result, this may lead to disappointment, frustration, and guilt. Making realistic goals is important. A caregiver should develop an action plan for making attainable goals, which should include a checklist with questions to ask. For instance, questions should include assessments like ‘is the goal realistic’ and ‘what is the intended outcome.’

By setting realistic goals, you will be kinder to yourself without the feelings of guilt. You will realize that you are not responsible for other people’s feelings, and you do not factor as much in someone’s life as your guilt would lead you to believe. Guilt makes you think you have more power than you do. You do not.

So how do you stop the guilt cycle? You eliminate one powerful word from your vocabulary: Should. Only you know the circumstances, the time constraints, the resources, and the relationships that impact you as a caregiver. Others may judge; but that’s not your issue. In order to overcome harmful caregiver guilt, lose the shoulds.

In a nutshell, caregiver guilt is a feeling of inadequacy. You feel like you are not doing as much as you should, and then judge yourself for apparent inadequacies. Caregiver guilt can manifest itself in the forms of exhaustion, pushing yourself too hard, negative self-talk, anxiety, and other negative emotions.

Five Ways to Deal with Caregiver Guilt

  • Accept and own. Most people are going to feel some guilt for being healthy when someone they love is sick;
  • Identify the why. Why are you feeling guilty?
  • Stop comparing. Connecting to other caregivers is important;
  • Take it easy on yourself. We can be our own worst critic;
  • Talk about it with others, especially family and make a plan.

It is often difficult for many caregivers to accept aid from others offering their assistance for many reasons. Some caregivers do not want to be a burden to others. Many caregivers are wary of outside help or have privacy issues. However, it is essential for caregivers to practice learning how to accept help from others. Accepting help does not mean the caregiver is weak or unable to handle their situation, they can delegate tasks and still be in charge. Having an extra pair of hands to help out gives the caregiver a chance to recharge and relax. When the caregiver receives help from others, stress levels will be decreased, and chances of burning out will be greatly reduced. It is important, therefore, for caregivers to take care of their own body and mind.

To help manage caregiver stress and guilt:

  • Plan and accept help. Be prepared with a list of ways that others can help you, and let the helper choose what he or she would like to do. For instance, a friend may offer to take the person you care for on a walk a couple of times a week. Or a friend or family member may be able to run an errand, pick up your groceries or cook for you.
  • Focus on what you are able to provide. It’s normal to feel guilty sometimes, but understand that no one is a “perfect” caregiver. Believe that you are doing the best you can and making the best decisions you can at any given time.
  • Set realistic goals. Break large tasks into smaller steps that you can do one at a time. Prioritize, make lists and establish a daily routine. Begin to say no to requests that are draining, such as hosting holiday meals.
  • Get connected. Find out about caregiving resources in your community. Many communities have classes specifically about the disease your loved one is facing. Caregiving services such as transportation, meal delivery or housekeeping may be available.
  • Join a support group. A support group can provide validation and encouragement, as well as problem-solving strategies for difficult situations. People in support groups understand what you may be going through. A support group can also be a good place to create meaningful friendships.
  • Seek social support. Make an effort to stay well-connected with family and friends who can offer nonjudgmental emotional support and help. Set aside time each week for connecting, even if it’s just a walk with a friend.
  • Set personal health goals. For example, set goals to establish a good sleep routine, find time to be physically active on most days of the week, eat a healthy diet and drink plenty of water. Many caregivers have issues with sleeping. Not getting quality sleep over a long period of time can cause health issues. If you have trouble getting a good night’s sleep, talk to your doctor.

Above all – Take care of yourself

Click here for more information on support groups or call the Community Foundation at 775-333-5499.

By Lawrence J. Weiss

A Day in the Life of a Compound Caregiver

Tod Sherman is a family caregiver for his wife, Dawn, and his son, Doug. He shares his story on what it is like to live day-to-day as a compound caregiver, and how he balances taking care of himself:

Compound caregiving is a balancing act. Having to care for family is truly a part of life. Thankfully, there are a few things that I have in my back pocket that I run to when I need some time for self-care. Through yoga and mindfulness, I am able to find my center.

My day-to-day tasks involve preparing medicines and breakfast for my wife and son. Then, I prepare for any doctor’s appointments scheduled for the day. I learned from when I first started caregiving that it is important to write everything down, including who I’ve talked to, doctors I’ve talked to, what we have discussed, and when I have to take them to appointments.

I am happy to do this for my family. It can be grueling, but I pride myself that I have the mental acuity and that I can function at this level. It is life and death every minute, with dealing my wife’s disabilities and my son’s cancer. But with all this, I make sure I don’t burn myself out. I hope this is something all caregivers do as well: find the time to take care of themselves! 

For all the other compound family caregivers out there, reaching out and asking for help is going to be just as important as caregiving. Your questions may be multi-dimensional if you are taking care of more than one person. Don’t be afraid to ask questions and ask for help when you need it.

Yes, we are all battling drama and trauma with our own unique situations, but we learn how to cope and balance it. You have to be able to have the opportunity to take care of yourself before you can take care of others. If not, you are going to battle yourself and your emotions are going to go haywire.

Before the day gets going, take some time for yourself to breathe, put things in a good perspective, and go somewhere positive before you start taking care of others. Find something convenient that doesn’t become a burden that you can do to get away physically where everything is going on, a few minutes away physically and emotionally from what you are wrapped into. You need to distance and take a break. 

Lastly, try to keep your chin up during the difficult times because the opportunity for darkness is too great. Every day is joy to have our family here with us.

Click here for more information on support groups.

Special Thanks to: Tod Sherman

Interview conducted by: Luiza Benisano

Why Humor is Important When Caregiving

As a caregiver, you face many challenges on a day-to-day basis. You may feel overwhelmed and isolated with how you are feeling. You may also deeply care about the person you are caring for and feel anxious about dealing with the potential heartbreak of loss. These everyday stressors can take a toll on you. Every once in a while, humor can serve as a break, helping you to be better equipped to tackle the everyday situations with your family member, together.

They say humor can be one of our best surviving tools. Humor is an absolute must-have if we want to survive the everyday situations life can bring. Sometimes, it forces you to deal with things that are of a somber and more serious nature, like family going through a terminal illness. 

William Palmer, family caregiver, shared when his aunt was on her dying bed, he told her he would have more jokes to share with her once they are both in heaven. According to William, he uses humor to comfort people around him who are sick or dying.

He shares his take on humor:

When you use humor when interacting with people, whatever serious situation they may be in, they get the chance to forget for a bit the dire situation they are actually in. They don’t have to think about something that is already on their minds all the time. They get to have a laugh and a sense of relief, even if it is only for a while. 

Aside from the comforting lightheartedness humor can bring, he said, having humor can serve to disarm yourself as a caregiver from the disease, leading you to become more comfortable with understanding the disease better.

When someone is terminally ill, it can be uncomfortable for some people. Approaching the usual heavy topics with a bit of ease can make a big difference, especially to the family member who might be afraid and stressed out about their own diagnosis. 

It’s okay. It’s okay to laugh. It’s okay to make light of an otherwise serious situation from time to time. Dealing with heavy situations can be overwhelming. It’s okay to have an escape once in a while by laughing about it and sharing a joke with someone who could use one.  

If you find yourself feeling overwhelmed, there are plenty of support groups available in the community.  

Click here for more information on support groups. You can also call the Community Foundation at 775-333-5499 for any questions.  


Special thanks to: William Palmer III
Interview conducted by: Luiza Benisano

Fun Activities to do this Holiday Season

Looking for fun ideas to do this holiday season with the person you are caring for? Read on to learn more fun ideas from Deanna Hearn.

Deanna Hearn, President of the Nevada Caregivers Coalition and former family caregiver, shares how she made the holidays a fun time for her mom. She said the biggest thing she kept in mind was to make sure her mom did not feel excluded during the holidays.

Here are a few things you can do with the person you are caring during this holiday season!

1. Christmas Lights

One of the things that Deanna’s mom enjoyed during the holidays was seeing the Christmas lights. They would go out and make an evening of it! Go for a drive and make your rounds in your neighborhood to see festive lights and decorations!

2. Baking

Deanna likes to bake during the holidays. She would invite her mom to bake Christmas bread with her. Her mom loved to help with making any kind of preparations, so this is one of the tasks her mom participated in. If you like to bake or make a special treat for the holidays, ask them to help you to prep! A simple task can be something they enjoy and appreciate being a part of.

3. Meal Planning

As with any big festivities go, meal planning is definitely a necessity for the holidays. Deanna suggests to also include the person you are caring for in meal planning. If there are things they can help with, ask them if they are up to the task, even if it is something as simple as setting the table.

4. Decorating

One of the most fun things about the holidays is decorating to make your home look festive! Ask the person you are caring for to help you decorate the tree and your home!

5. Holiday Party

Every year, Deanna throws a holiday party at her home. “Mom was a big help! She helped with the food prep and decorations. The best part was that she also felt like a guest at the holiday party – interacting with everyone. I could tell she enjoyed herself.”

6. Picking out a Christmas Tree

Do you and the person you are caring for prefer a real Christmas tree? If so, this can be another fun activity for you both to do. It is also a great opportunity to spend time with the person you are caring for.

7. Shopping for Gifts

Shopping for gifts is also something that you can do as a fun holiday activity with the person you are caring for. If they are comfortable, take them with you to go shopping! If the person you are caring for is usually at home, this would be an opportunity for them to get out, get some fresh air, and see holiday decorations outside!

8. Celebrating the end of Hannukah

In honor of the end of Hannukah, there are plenty of fun activities you can do to celebrate. The most classic game being, spinning the dreidel. There are also other activities you can do, like making a cupcake menorah, or a Star of David sculptures out of popsicle sticks.

9. Dance!

In honor of Kwanzaa, it is tradition to dance! Ask the person you are caring for to join you! If your family member is not up to it, you can ask them to drum, instead.

10. Invite a fellow caregiver and their loved one to spend a holiday together.
Plan an activity and include a meal/potluck.

11. Deanna’s biggest tip for those who are caregiving for someone is to make sure that you include them as much as you can – whether it is decorating your home or deciding what to have for meals, asking for their opinion or their help is something they will appreciate.

For any questions on caregiving resources, call the Community Foundation at 775-333-5499.

Special thanks:
Deanna Hearn

Interview conducted by:
Luiza Benisano

Safety Tips for the Holidays

The holidays are around the corner. It is an exciting time for everyone – for some, it is the time families and friends celebrate with one another. With the holidays being a time of celebration, sometimes it is easy to forget the potential hazards that can surround it.

For family caregivers, the holidays can also be a stressful time with having to worry about the person they are caring for.

Margaret Stewart, family caregiver, shares her experience:

I wanted a perfect Christmas with all of my children being home. I felt my mom would love and appreciate it. Well, she did not. Because of her difficulty dealing with a progressively worsening dementia, she was irritable and on edge. By pushing myself, I was not calm, and it just made everything worse. There were a few “almost accidents” that did not need to happen.

I realized mom would enjoy the holidays in her own way and that the rest of my family did not need or appreciate me handing Christmas to them with a bow on it. In the following year, I asked my family to think about how they could participate.

My daughter took mom to Macy’s to see the decorated trees, and then they stopped at a bakery for coffee and a cookie.

That less than 2-hour break was restorative.

Another day, she brought a gingerbread house, my daughter and mom relaxed and had fun decorating together.

On Christmas Eve, my husband drove us through a beautifully decorated neighborhood, and the three of us enjoyed the glowing lights.

In an inspired move, my son strung a few string lights outside the windows facing the backyard where mom could enjoy them every night. We put up a decorated tree on the outdoor patio table and moved it near the windows. It was a cheerful and simple night.

My oldest son then appointed himself chef on Christmas Eve, chose the music playing in the kitchen, and relegated me to sit with a glass of wine and chop vegetables. For dessert, we opened a gift tin of family recipe cookies sent by my aunt from the Midwest.

The holidays can be a stressful time for family caregivers, but it does not have to be.

Asking help from family and friends while doing your due diligence can go a long way.

Here are my tips for a safe holiday:

  1. Lighted candles
    Candles and a fire in the fireplace bring a sense of coziness and comfort but can be a hazard to people with dementia, those who move with a walker, and to young children. Light your candles on the fireplace mantle or a high shelf where they will not be knocked over, consider battery-operated candles, and commit to sitting by and enjoying that roaring fire alongside your care partner. 
  2. Christmas tree
    Consider the placement of the tree. Is it securely in front of an electric outlet so the extension cord will not be a tripping hazard and the tree wont tip over if brushed?
  3. Considering your family member’s condition
    Are you taking care of someone with a condition such as Alzheimer’s or Parkinson’s? How will they feel being surrounded by people during the holidays? This might be a good time to plan ahead on what your care recipient would be most comfortable with.

I encourage you to enjoy your holiday in ways meaningful to you and to allow all the loved ones in your life to engage and create a simple holiday that each person can hold in their hearts.

We realize that not every family caregiver may have the same situation as the story above. Some caregivers may not have family who is available or is willing to help immediately. We hope what you take from the story is asking for help is key. If you do not have family available or willing to help, you can still ask for help from other sources, like church groups, or support groups for family caregivers. Another thing we hope you take away from the story is that respite is important. As a family caregiver, it is important that you take breaks. You might feel guilty about doing this, but by taking a break, you are doing yourself and your family a favor.

Have a safe and happy holidays!

Support group resources:

Read Laura Coger’s blog on expanding your circle of support.

Click here for support groups.

Self-care resources:

The Washoe Caregivers Guidebook offers self-care tips for the caregiver on page 4. Download your free copy here.

More resources:

Click here for resources on dementia. You can also visit the Alzheimer’s Association at https://www.alz.org/norcal .

For any other information, contact the Community Foundation at 775-333-5499.


Special thanks to: Margaret Stewart
Interview conducted by Luiza Benisano

Falls and Fall Prevention Among Older Adults

Falls are a major threat to the health and independence of older adults. Each year, one in three older adults aged 65 and older experiences a fall, and people who fall once are two to three times more likely to fall again. Every second of every day, an older adult (age 65+) falls in the U.S. Falls can be devastating, I know firsthand. Several years ago, my sister at age 50 fell down her stairs and died. Then, last year I fell, which resulted in brain surgery, a 5 week stay in rehab, and about a year to fully recover. Falls are the leading cause of nonfatal injuries among older adults. One out of ten falls causes a serious injury, such as a hip fracture or head injury, which requires hospitalization. Due to falls, every 11 seconds an older adult is treated in the emergency room; and, every 19 minutes an older adult dies. In addition to the physical and emotional pain, many people need to spend at least a year recovering in a long-term care facility. Some are never able to live independently again. I was lucky and have been able to recover.

Falls can be deadly. Among older adults, falls are also the leading cause of fatal injuries. Each year, many older adults die as a result of falls. The rate of falls and related deaths among older adults in the United States has been rising steadily over the past decade. Falls result in more than 3 million injuries treated in emergency departments annually, including over 800,000 hospitalizations and more than 32,000 deaths. Each year about $50 billion is spent on medical costs related to non-fatal fall injuries and $754 million is spent related to fatal falls.

Falls are preventable. People are living longer and falls will increase unless we make a serious  commitment to providing effective fall prevention programs. Falls are not an inevitable consequence of aging. However, falls do occur more often among older adults because fall risk factors increase with age. A fall risk factor is something that increases a person’s chances of falling. This may be a biological characteristic, a behavior, or an aspect of the environment. These risk factors include: Muscle weakness or balance problems; Medication side effects and/or interactions; Chronic health conditions such as arthritis and stroke; Vision changes and vision loss; Loss of sensation in feet; Behavioral risk factors; Inactivity; Risky behaviors such as standing on a chair in place of a step stool; Alcohol use; Environmental risk factors; Clutter and tripping hazards; Poor lighting; Lack of stair railings; Lack of grab bars inside and outside the tub or shower; Poorly designed public spaces.

Usually two or more risk factors interact to cause a fall (such as poor balance and low vision). The more risk factors a person has, the greater their chances of falling. These shocking statistics highlight the importance of preventing falls by taking deliberate precautions. Age related losses in muscle strength, flexibility, or balance reactions can be addressed through balance, strength assessments, or rehabilitation therapy.

Some issues associated with falls:

  • When an older adult falls, their hospital stays are almost twice longer than those of elder patients who are admitted for any other reason.
  • The risk of falling increases with age and is greater for women than men.
  • Annually, falls are reported by one-third of all people over the age of 65.
  • Two-thirds of those who fall will do so again within six months.
  • Alcohol or substance use;
  • Socioeconomic factors including poverty, overcrowded housing;
  • Among people aged 65 to 69, one out of every 200 falls results in a hip fracture. That number increases to one out of every 10 for those aged 85 and older.
  • One-fourth of seniors who fracture a hip from a fall will die within six months of the injury.
  • The most profound effect of falling is the loss of functioning associated with independent living. A growing number of older adults’ fear falling and, as a result, limit their activities and social engagements. This can result in further physical decline, depression, social isolation, and feelings of helplessness. 

Areas that we need to pay attention to:

Low vision: Many elders have vision problems like macular degeneration and glaucoma, making it hard for them to see obstacles or hazards when walking.

Weakness and Balance Issues: Without consistent efforts to improve strength and balance, older adults will become weaker, losing muscle mass, flexibility, and endurance. Balance deteriorates due to inactivity, which may increase the odds of a fall. 

Poor Lighting and Accessibility Features: Nighttime is a prime time for falls. Low lighting along the pathway to the bathroom, in particular, can increase risk. Missing bathroom accessibility features like a shower chair or grab bars make it difficult for a weaker person to bathe or use the bathroom safely. Adding adequate lighting to the bathroom and throughout the home is a cost efficient and easy update that will greatly improve the safety of the home.

Medication Problems: You probably think we can manage medications appropriately, just follow the prescription directions. Medication mismanagement is a huge problem leading to multiple issues for older adults.  Approximately 30 percent of hospital admissions are drug-related due to mismanagement and interactions. Here are some of the common medication issues that contribute to falls:

  • Even with proper medication management, many medications cause dizziness and lightheadedness. 
  • Mixing several different medications can cause balance problems. More than half of people age 65 and over report taking four or more drugs.
  • Most importantly, consult a “geriatric trained pharmacist” for drug interactions with other medications and over the counter meds.

Poor Hearing: This may not seem like a fall risk, but even mild hearing loss can increase falls. According to the American Speech and Language Association, the risk of a fall increases by 140 percent for every 1 decibel of hearing loss.

Doctor visit: Request a medication review (perhaps eliminating some medications is possible) and a hearing and eye examination. Check for dehydration, a common problem for elders. Dehydration can lead to low blood pressure and dizziness. 

Exercise: Gradual increase of activity is critical. The safest way to approach this idea is to ask for a physical therapy evaluation. A physical therapist can “start low and go slow” by evaluating your medical condition and making recommendations to increase balance, strength, and endurance. A healthier, stronger person is less likely to fall, and recovery will be faster if they do.

Grab Bars and Accessibility Additions: Waiting for a fall or some other crisis will leave you scrambling at the last minute, so be pro-active and have a physical therapist work with you to make your home safe.  At a minimum, think about installing grab bars in the bathroom, a toilet riser, stair rails, and a shower chair with a handheld shower nozzle. There are now plenty of beautifully designed grab bars and accessibility products that will blend right in while providing safety.

And lastly, stairs are hazardous, and many older homes are multi-level, requiring some significant renovations to eliminate the use of stairs. While this may be a larger change, it may be well worth it. At least, always have a hand free walking up and down stairs in case you need to grab on to the railing. 

Eliminate Clutter:  We are very attached to our home environments and we may not even realize that we have clutter. Start by making small, achievable steps. Get rid of throw rugs or make sure they have non-skid backing or a non-skid underlayment and that they don’t have edges that curl. Clear pathways to common areas like the kitchen and bathroom. Clutter is likely to return, so this needs to be made an ongoing effort. 

There are four essential components of a complete Fall Prevention program:

  • Education;
  • Behavior change;
  • An initial exercise intervention designed to improve to a certain baseline level those physical attributes that affect fall risk (balance, gait, strength and flexibility); and
  • An ongoing exercise program that you take part in indefinitely, and which is designed to maintain and improve the physical attributes that relate to falls.

There is no question that we all have to be aware of the impact that falling has on all of our lives and the community. Each one of us, as well as community organizations and government programs have to open our eyes and work on fall prevention. Prevention pays off in many ways.

Falls are preventable. Click here for more resources on Home Modifications and Medical Equipment.

For more information on other resources, please call the Community Foundation at 775-333-5499.


Lawrence J. Weiss, Ph.D.

Caring for my Father in the time of a Pandemic

Caring for her father during a pandemic, Bonnie read shares her story and why it is important to check on your loved ones daily.

Bonnie shares how difficult it was for her to have her father living in an Independent Senior Living Community during a pandemic. She writes:

“Thinking of him having no communication except for television, watching way too much news and politics, which leaves him with anxious feelings about a future he can no longer participate in, was worrisome for me.”

To alleviate her dad from feeling isolated, Bonnie made it a routine every Saturday morning to drop off goodies such as cookies, applesauce, and more! She shares just how important it is to check up on loved ones living in a facility as much as you can:

“It is so very important to call daily and lift the spirits of those who can’t leave the room due to quarantine! Imagine having to eat every meal alone, set dishes outside the door, and seeing NO ONE. The old folks can’t afford depression, they will give up, and it’s not okay to go out in a bleak spirit. I do my best to stay positive and call often to check on my dad,” she said.

Since Bonnie wrote about her worries of her father going through isolation, her father, Royce Read, has since moved back home with her. She shares with Aging and Awesome the big relief and gratitude she feels now that she gets to take care of her father during this time, “We want to get him closer to me and out of isolation,” she said. 

She also credits the Caregiver Support Initiative for being her go-to resource for caregiving. “I appreciate the opportunity to work with everyone involved in the Caregiver Support Initiative steering committee. Instantly, I realized I did not know as much about navigating the system as I should. I learn something new from every dialogue. We are all caregivers at some point. Through the guidebook and website, assistance has been given to thousands; I am convinced of that.”

To view Bonnie and Royce Read’s full interview, click here.

For more caregiving resources, call the Community Foundation at 775-333-5499.

Losing My Husband from Dementia and COVID-19

I’m writing this on Christmas Day, 2020. It’s my first Christmas without my husband of 43 years. He died earlier this year of COVID-19, but in reality, he’d been “gone” for longer, with dementia. He is infinitely better off as, ironically, am I, and I am genuinely happy for him, for his spirit. But if you are the loved one of a person with dementia, especially a spouse, their departure leaves some unsettledness behind. In my case, some of the questions revolve around whether I did the best I could for him. All who know us, friends and family, say an unqualified Yes, but I think about the times I was angry with him, when I locked myself in my bedroom and turned out the lights while he beat on my door rather than my trying again to diffuse his fear and paranoia. When I had to put a lock on the refrigerator to keep him from putting gardening tools and kitchen sponges in our food. When the policeman, who returned him to the house after a neighbor blessedly reported him walking down the street in a t-shirt and nothing else, sternly counseled me to install higher locks on the doors. And I did. And kept them locked all the time, keeping him a virtual prisoner in the home we built together 29 years ago.

A beloved friend and neighbor of ours whose husband had Alzheimer’s counseled me, “Don’t wait til you hate him”, in making a decision to move him to memory care. If you have confronted or are confronting this decision for a loved one, it’s likely the hardest decision you’ve ever made. It was excruciatingly hard for me and I vacillated and debated for a long time. There were a couple of “final straws” and the realization that my husband was potentially not safe in the house in an emergency because he would no longer follow my directions (couldn’t reliably get him out in a fire) helped me to make the decision. He had only been in the memory care facility for two weeks when he picked up COVID. My choice to move him there ended his life prematurely. My choice to move him there set him free. Depending on the day and time, either or both of these statements are true. The further I am from the immediacy of the circumstances, the more comfortable I am that, in the big picture, I did the right thing. For him. And for me.   

The last two years of Christmas, ’18 and ’19, I put Christmas lights outside but couldn’t decorate inside because my husband destroyed whatever I put out. Not because he didn’t like it, but because it was something new, something different in our house and “wrong”. This year I eagerly unboxed and put out the survivors, smiling and remembering their sources, how those various harbingers of the Christmas Season were collected over the years. 

My husband’s niece, one of my closest friends and his favorite family member, sent me an ornament for the tree. It’s a silver heart, flat with an open heart cutout in the middle and a little redbird hanging inside, with the inscription “Whenever a cardinal appears, a loved one is near”. In the note accompanying, she said that the uncle she knew had been gone a long time and now that he’s deceased there will never be a chance for him to be his old self. She mused that her statement was irrational, but it was incredibly comforting to me and I knew exactly what she meant. Her acknowledgment of her uncle’s long transition reaffirmed for me that it was he who changed and not me. As a caregiving spouse, it’s far too easy, especially early in dementia progression, to begin to question your own perceptions and, sometimes, your own sanity. It’s quite the gift to have a trusted loved one help in finding one’s True North.

If you are caregiving for a loved one with dementia, know there are others who have walked your path, understand, support, and hold space for you. You matter.

Alzheimer’s Association offers help and support groups for Alzheimer’s and Dementia patients. For more information, visit https://www.alz.org/help-support.

Click here for more dementia resources or call the Community Foundation at 775-333-5499.  

By Nettie Oliverio


Tips for Hiring a Caregiver

Hiring a professional caregiver can stir up a lot of emotions. I have heard everything from relief and a breath of fresh air, to fear of someone in their house or families fighting over how money is spent. My goal in this blog is to help you understand where to look, what to do, and over all a basic understanding in hopes that it might help, enhance, and/or keep your family (and sanity) safe.

So where do you start to hire someone? Well, first we need to understand that not all caregivers are the same. Some work with people with cancer, some amputees, some Alzheimer’s, some do only house chores to free up your time.

First, everyone should understand the care that is needed and then reach out too non-profits who help with it. Second, if you are part of a support group, ask around for who works well in town. Third, here in Northern Nevada we are close to each other, so I encourage you ask you friends or professionals you already work with on ideas of what company to look at. I would caution about using craigslist or Facebook ads as they may not be as they seem or have false ratings. Sites like Medicare’s Home Health Compare is a good online tool to start with. The goal is to find someone who is compassionate and responsible.

Now that you have some ideas on where to look, I really want to focus on understanding your needs and resistances that come with someone in the house. The purpose of hiring professional help is to alleviate tasks that either take up too much time for you to do, too risky, or too difficult.  It is important to remember, their job may not be to provide care for the person you are caring for but provide care for you! For example: If pushing the lawnmower is bad for your back, hire someone to do it for you! If you are informed you need to administer a prescription in an exact way that it risks people’s health, hire someone! If you need to go to work or tend to other family needs and you need someone around the house to help with toiletries or cooking, hire someone. I say this because most people who are being cared for do not want someone other than family caring for them as they may feel embarrassed. But if you are hiring someone to help ‘you’ that changes the conversation.

Let us talk about the types of professional caregivers.

  1. Personal care aids (PCA) and Home health aides (HHA). These types of people generally do basic house care and help with ADL’s (Activity of daily living). Since often not medically licenses, also the most cost effective for out of pocket. Though, due to that same reason are not often covered by insurances. If you need help around the house, PCA and HHA are where most people go.
  2. Certified nursing assistants (CNA) They work under a RN (Registered nurse) and can do wound care as well as ADLs. More affordable than a RN but cannot provide direct medical care.
  3. Skilled Nursing Providers (LPN – licensed practical nurses.) These people can provide medical care as well as help with ADLs. I would not hire an LPN to do housework as you can hire more than one type of caregiver, but if your loved one needs medical aid at home, and not in need of a RN, a great way to go.
  4. Registered Nurse (RN) Hire an RN when you need medical advice and help with all medical equipment in the home. Most RNs work with your doctor to help the doctor understand the medical needs of you loved one and may help direct other caregivers in your home if needed or you live out of state.

The interview. You should never EVER be afraid of telling the person you are hiring what you are paying them for or what to expect. The last thing anyone wants is to walk into a situation where they are told something different. It creates confusion and mistrust. Honesty is the best policy. Say that you need dishes done daily, or they will have to talk to your spouse about a subject for hours on end while they are there. Keep the communication open and expect the same out of the person you hire. Be Direct, Be Honest, and Be Respectful.

Hiring a company vs an individual. Both have their pro’s and con’s depending on the needs of your family. This can be a whole topic itself; So, I will keep it simple:

Hiring a company:

Pros: Should always have a caregiver if your regular is out sick, they handle paperwork, usually better insurance, and screening.

Cons: more costly, often no part time schedules, and you may not be able to pick the caregiver.

Hiring an individual:

Pros: Often more cost effective, you get to know the caregiver personally and you agree on schedules. 

Cons: You have to handle the billing and paperwork, if they are out sick no one is there to care for your loved on.

            And lastly keeping you, your family and property safe. I always say that “life happens.” Things go wrong we can never expect. So, I want to address problems that happen that most people don’t think of. First, a caregiver will probably never do things the way you would do it. That is fine. It may not be wrong but may make some feel uncomfortable. Second, If the worry of what is going on at home is getting to you, you may want to install nanny cam’s in and around the house. This may work as a double benefit if your loved one is at risk for falling, and you can use the cameras to see if they “fall”.

            I knew one family member that stopped by the house at random times during the day to check up on things and it made the whole family feel better knowing that the hired professionals will be randomly checked. I would say 99% professionals are good, honest caring people. It is that 1% that give the industry a bad name. Third, if you worry about theft, simply pull out the old smart phone and make a recording of what is in the house. The professional may tidy things up and put them where they don’t normally belong. So, ask them where an item is before accusing of theft, as it may create tension. Be smart about it and play detective if you are sure its theft. If you hired a company, ask the boss what is going on after you know for sure the item/s were not just misplaced.

If you did your homework, understand your needs, and work with people you can trust, you should find hiring a professional caregiver, (or lawncare/maid to help) a wonderful experience. Most people are grateful on the amount of time and worry that is alleviated from having the extra help.

There are plenty of ways you can do your research on finding the right caregiver for you. AARP offers extensive advice on steps to finding the right home care worker that will suit your needs. Read more here.

Washoecaregivers.org has resources on in-home care. To learn more, click here.


William Palmer

Caregiving During the Holidays

The holidays are the perfect time to connect with family, friends, and loved ones. The holidays are the time to be joyful. This year, unfortunately, rings different.

The luxury of being around family and friends is no longer encouraged due to the pandemic. With the recent surge of the Coronavirus in our community, it is highly encouraged to stay at home and to keep to a minimum gathering with family and friends for everyone’s safety.  

This new approach to the holidays can pose as a stressful time for everyone, especially caregivers.

Caregivers’ schedules during this time can also prove to be lonely. It can be harder to schedule and take time off to see their own family and loved ones. The holidays can pose as a stressful and lonely time for caregivers, rather than a joyful one.

If you are a caregiver, here are some tips to ease the loneliness this holiday season. 

  1. Instead of trying to duplicate the annual bountiful feast consider sharing an easily eaten appetizer or pumpkin/pecan bars instead of pies on the front lawn or sidewalk for a few minutes with family and friends before or after a designated meal hour. Seeing your loved ones, masked, from a distance, in person can be joyful and sharing food is still a celebratory act. The glow will linger as everyone retreats back to their respective homes
  • Buy stamps online and some Holiday cards. The effort spent signing your name and if you feel like it, a short message connects you to friends and loved ones in a more powerful way than a thumbs up on Facebook.

  • Volunteer. Giving back and helping others can be uplifting. There are plenty organizations that need volunteers especially during the holiday season.
  • Seek respite care. It is nice to just get a breather for yourself, to protect your mental health, and to take care of your overall well-being. Neighbor Network of Northern Nevada (N4) provides free respite care services to unpaid caregivers. Respite services can be provided in the home, or by taking the person into the community. To learn more, visit http://neighbornv.org/. Seniors in Service also offers the Senior Companion Program. Senior volunteers provide basic social support to seniors over the age of 60 who live alone or need respite care. To sign up, download Senior in Service’s volunteer application here.   
  • Ask for help. If you are struggling with isolation, reach out for more support. Call    someone you trust and let them know just how you are feeling. The Washoe Caregivers Email Discussion Group is a good place to connect with other caregivers. Join the Caregiver Support Initiative’s Email Discussion Group to connect with other family caregivers to give each other advice, ask each other questions, and discuss caregiving-related topics. To sign up, visit https://washoecaregivers.org/connect/.

The Alzheimer’s Association also offers caregiver support groups. To learn more about their support groups, click here or call 800-272-3900. For more support groups, click here.

Remind yourself that we are all in this together and that you are not alone. Take comfort in the realization that this year will pass, and we will eventually be able to share hugs and tidings of good cheer. 

Caregiving during COVID-19

The COVID-19 situation is an unprecedented time for everyone. People of all ages are at risk of contracting the Coronavirus, with seniors being the most vulnerable and at high risk, which can pose as a serious concern for family caregivers. Our current situation can also prove to be a stressful time for family caregivers in our community with having to plan ahead or be aware of the constant changes in information on resources. Here are some ways to help you and keep the person you are caring for safe.

Keep clean
The Coronavirus can be contracted by individuals by touching any surface that is contaminated, and then touching their eyes, nose or mouth. To avoid this, make sure you clean your hands after going out in public where you may have touched contaminated surfaces.

Be mindful of social distancing, and not isolation
One important way to keep your older family member safe is to avoid going out as much as possible, and to social distance if you are out and about. However, if your older family member is already feeling lonely and isolated, there may be activities you can do with them to avoid isolation. Going out for a quick walk, reading, gardening, and phone and video calls with their family members and friends are good ways to keep your older family member from feeling isolated.

Make Time for Self-Care
Author Eleanor Brownn, said, “Self-care is not selfish. You cannot serve from an empty vessel.” Which rings true for caregivers. The stress surrounding COVID-19 can be overwhelming, do not let yourself get burdened. Make sure you take breaks and be mindful of your health too. Read more on why taking breaks are important by clicking here.

Keep up to date with resources for caregivers and seniors
Information and resources are rapidly changing due to the current situation of COVID-19. A lot of businesses may have also modified their services. Make sure to call any place of business first to confirm business and the services they currently offer. Click here for family caregiving resources.

The COVID-19 situation is an unprecedented time for all of us. Keep yourself and the older person you are taking care of safe. For the latest information on Northern Nevada and a list of resources available to help individuals during this time, click here.

Disclaimer: The contents of this blog does not intend to give any medical advice. Please refer to the CDC guidelines for any health-related advice.
Visit https://www.cdc.gov/ or https://www.washoecounty.us/
for more information.

Preparing for End of Life and Death

End of life is inevitable. We all die, whether it is expected or not. When we prepare for our own death in advance, we are able to relieve the decision-making burden on those whom we love and create the opportunity for end of life and death that maintains self-control. If you are reading these words, the day will come when you will die, perhaps “pass on” depending on your spiritual beliefs, but let us use the word death, because that is what it is. Usually death comes expectedly, at the end of a long, well-lived life or at the end of a terminal illness. But, on occasion, death arrives without warning. Accidents, sudden illness, even becoming the victim of a crime can cause you to die without notice, without time to plan. Therefore, do not be caught unprepared. Your take home message here is to plan your death!

How do we plan for end of life and death? First, give someone close to you the durable power of attorney to manage your affairs if you become sick and unable to do for yourself. Who is going to pay your bills, deposit your checks and manage your financial affairs? Second, write a will and communicate this information to those involved, including family and friends. Third, write an advanced-care directive or living will, and give someone medical power of attorney to carry out your wishes about medical treatment at the end of your life if you cannot. Finally, ease the trauma of your death for survivors by preplanning your funeral or service. My mother spelled out exactly what, who, and where she wanted her service, down to the hymns to sing. It made it so easy for us children. In summary, plan!

Experts explain the steps you should take to make sure your family knows your wishes on everything from funeral plans to end-of-life care. The important thing is to start planning sooner rather than later. Only one-third of us have plans like our advance directives and only one-third of those are used. Why? We do not talk about “death” and our end of life wishes. We may fill out the legal form but we file it away somewhere. So, not only do we need to do our own planning through Advance Directives, Durable Power of Attorney, Living Will, POLST (Physician Order of Life Sustaining Treatment), and Five Wishes, but we have to discuss it with our family and friends.

We especially need to discuss your wishes and desired medical treatment at end of life; since we may not be able to make our own decisions. Physicians, EMTs, and other acute care health professionals are trained to provide all means of life sustaining treatment regardless of the outcome. In addition, I have seen many fights and disagreements among family about what Mom or Dad needs for medical care because their parents had never had the discussion with the family about what their wishes were for end of life care. In short, we need to fill out the legal forms and discuss them fully with our loved ones.

There are many benefits to having a discussion about end of life and death. Awareness of your personal choices regarding end of life arrangements gives you and your loved ones a better perspective. By taking the time to discuss your wishes in advance, your loved ones will not need to make difficult choices for you in a time of crisis, when emotions cloud our decision-making abilities. Having the talk with your loved ones can also save you money if you choose to not receive major medical care. Additionally, many families find that sharing their wishes with their loved ones actually strengthens their relationships and brings peace of mind. Something we all strive for.

Recently, the federal Medicare program instituted funding for physicians to receive reimbursement for providing information and discussion about Advanced Directives; which is really a good move. Unfortunately, it only covers information and a discussion. It does not actually include help in filling out the legal documents. They could provide the POLST if the person was close to death, but all other Medicare recipients need to do the planning and develop the legal documents. A website “theROYL.com” (ROYL = Rest Of Your Life), which I helped create, provides information about what legal forms are needed and what needs to be discussed. Clearly, our professional educational institutions need to incorporate better education and techniques for the communication and creation of the documents for the Advance Directives. In addition, since people turn to their friends and family before professionals, public education has to be addressed.

In a survey on end of life that I crafted several years ago, we found that Nevadans have taken some significant steps toward improving care at end of life.  This statewide survey indicated that the Nevada’s public perception and practice of advance planning, as well as palliative care and pain management, are above some national averages.  These measures still have a long way to go to fulfill the many issues facing us at end of life.  One-third of Nevadans have advance directives, higher than the national average, but clearly more need to have their wishes known and enforced.  Pain management and palliative care were generally well handled by our health care professionals, but one-fourth still needed significant intervention to have a good death.  People perceived hospice care much better than traditional health care for pain management, concerns about the illness, and symptom management.  Our public policy makers and health care professionals need to pay attention to these public perceptions and experiences of end of life care.  By doing so, perhaps we all can benefit by improving the quality of life, even at the end which will “add life to years”.

For more tips on planning for end of life, please visit washoecaregivers.org.

Dr. Larry Weiss
Center for Healthy Aging

One Simple Practice

One simple practice a friend shared with me has kept me from becoming overwhelmed.  It is simply, “Just focus on one thing.  One thing.”  When that feeling of overwhelm starts creeping into my consciousness, I literally say out loud, “One thing, Vic. Just one thing.”  Hearing that simple phrase re-centers my head and my next step lands more steadily. 

Caregiving is nothing but juggling bowling pins. I know that.  My desk occupies a list for the day, compiled from other lists that are compiled from a calendar that fills up with multiple, ongoing tasks for the days ahead.  To look at all of that can easily fake me out into feeling beaten before the day even begins.  However, if I say, “One thing, Vic. Just one thing,” I inevitably settle and breathe. This one simple practice helped me breathe and it also became my form of self care.

So how does this work when Alzheimer’s is nothing but unexpected, continual fires that ignite everywhere and need stamping out?  Obviously, I first put out the fire.  An example was shared in a recent blog where Mom forgot her house key.  I had to drop what I was doing and drive to her house to let her in.  This put all my other to-do’s aside, which of course, pissed me off.  I had to once again re-prioritize and move things to another time and day, which led to everything to backing up like an L.A. traffic jam.  And like any traffic jam, stress sits and idles.  Overwhelm starts to accelerate and before I know it, I’m doing the backstroke in a river of thick sludge.  Then Fear pulls up alongside me in its stupid dinghy, wearing a cap, whistle and megaphone, goading me to swim faster, faster, faster.  The pressure becomes so ridiculous I feel like if I don’t keep pace, the world will fall off its axis and all humanity will end forever. 

STOP.  “One thing, Vic. Just one thing.” 

What Is True For Me:   This principal cuts out the superfluous excess.  If I’m driving to the doctor’s office with Mom, that is my “one thing” for that moment.  Sitting in the waiting room is my “one thing” for that moment.  Making a phone call to the Insurance Company is my “one thing” for that moment.  Teaching my fitness class is my “one thing” for that moment. I practiced that until it became a natural thing to me. One simple practice was all it took to help me breathe.

Saying it aloud allows me and the Universe/God to hear those non-judgmental words.  They resonate and echo like a powerful declaration to support the intention and effort I do make.  Sometimes the result is as dramatic as the parting of the Red Sea.  Other times it is as subtle as just making it through one ore minute, hour, or day like any other ordinary person who is not a caregiver. Either way, I will have climbed the staircase, one step at a time, without losing my breath or losing my mind.  

For more tips on self-care, please visit washoecaregivers.org and download a copy of the Guidebook here.

For more simple practices, please visit:

When “Friends” Become Too Much

When do friends become too much? Following yesterday’s blog, “Authentic Independence,” I mentioned being cautious of certain individuals. 

Though they may be friends, be aware and beware of individuals who suck you dry emotionally.  Take inventory of who you are around and what they are doing to you, as well as what they are doing to your time.  Their presence in your life may very well be fine, I’m just saying to take a look.  They can help or hinder our energy that helps us take care of our own daily chores (in addition to caring for your loved one with dementia).  

If you are left drained, either think about limiting your time with them, or letting them go altogether. Is this a tough thing to do? Of course. Absolutely. But our time is too precious to be robbed on any level. Iyanla VanZant said it well, “We meet people where they are, and sometimes we have to leave them there.” 

Secondly, if you have trusted friends who give their support and offer their help, accept it.  Early on in my caregiving days/daze, I made the mistake of allowing the past to dictate my present. I didn’t have help navigating my husband’s alcoholism, therefore my current thought process with Alzheimer’s was, ‘Why in the hell would I have help with this?’  And to a degree, it was true, I didn’t have help, so I continued to do everything myself. I didn’t reach out, even when I was taking classes on dementia and included myself in support group.  

In a way, I was setting myself on fire to either save face, or not bother anyone, or I assumed they wouldn’t, or couldn’t, help. It absolutely was not the right thing to do because caregiving did almost kill me. The silver lining in finally asking and accepting help was that it allowed me to know how it feels to have someone truly stand by my side while I save myself and being able to do the same for others. 

If you find yourself in a friendship or relationship that is out of balance (excluding dementia and their inability to take care of themselves), be discerning about what it is costing you to be around them emotionally and spiritually, as well as what it’s costing you with your time.  If we stand by their side and help them on their “path,” and they take (in) your advice and support so they may save themselves, just be aware some will take and take and take, then do nothing to help themselves. Our path is just as important as anyone else’s, and it is up to us to have boundaries and self-respect to protect it.  It is a commodity we will never get back. 

WHAT IS TRUE FOR ME: I have let many people go in order to grow or do the things I have to do. “Caregiving” made that abundantly clear.  Of course there are people we have no choice in being around; co-workers, bosses, family members, etc.  I can be civil and kind, but I keep them at arm’s length. The people who hinder or who have sucked me dry emotionally, are gone – out of my life.  Funny thing is, not only does the Universe support me every time I have had to make this decision, these people seem to go on just fine without me. 


Vic Railton

The CARE Act

The CARE Act passed the Nevada legislature largely with help from AARP in 2015.  It employs three simple things to help family caregivers when their loved ones are hospitalized. First, caregivers are designated in their loved one’s medical record. Second, the caregiver is notified before the loved one is discharged from the hospital. Thirdly, the caregiver is instructed and educated about the medical tasks on the discharge plan that will need to be carried out when the loved one has returned to their home.

Did you know some 40 states, including Nevada, have enacted the Caregiver Advise, Record, Enable (CARE) Act? The CARE Act requires hospitals to recognize the vital role of Caregivers when care recipients (of any age) are admitted to a hospital (and after being discharged) by providing Caregivers with resources, training, and information to ensure that discharge plans are carried out successfully.

The hospital discharge staff need to instruct the caregiver on tasks such as preparing the home to ensure the home is safe for the loved ones return; setting up assistance in the home to prevent complications; cleaning wounds; managing the loved one’s pain; managing medications, scheduling and/or helping the loved one with physical therapy; ordering medical equipment; among other tasks.

Exploration of how Nevada hospitals and the other states are implementing the CARE Act and how consumers are responding is an important next step. If you are an identified caregiver, ask the discharge team for the discharge information and instructions on what you will need to do to responsibly care of your loved one. While this is just one step in one setting, we have the chance to help implement this law in the right way and leverage it into broader changes so that family caregivers are recognized and assisted in all parts of the health care system.

An estimated 44.4 million friends and family members in our country provide care for an older person, whether it is help with daily activities like bathing and eating, or long-distance care coordination, or short-term care for an illness or injury. Millions more are caregivers for younger disabled people and those facing serious illness.

A groundbreaking study by the AARP Public Policy Institute and the United Hospital Fund supported by The John A. Hartford Foundation revealed that nearly half of these family caregivers are performing complex medical and nursing tasks such as cleaning wounds, giving injections, and managing multiple medications. Little training, if any, is provided for these difficult tasks and this can be particularly dangerous after a hospitalization. Unfortunately, the CARE Act has no enforcement or penalty if it is not enacted.

These millions of people provide informal caregiving to adult family and friends. In 2000, informal caregiving had an estimated national economic value of $257 billion per year, greatly exceeding the combined costs of nursing home care and home health care. Certainly today, that figure has expanded phenomally.

Given Medicare penalties for 30-day hospital readmissions, which can be up to 4% of all Medicare revenue for that hospital, it may seem obvious that it’s in the best interest of hospitals to have family caregivers well-prepared. However, changing behaviors and habits is incredibly hard, especially in the often chaotic and fast moving world of hospital admissions and discharges. I have personally talked with several family caregivers of hospital discharged elder patients who have not been taught the details of the discharge plan by the hospital staff. This is why an enforceable law and public accountability are needed.

In addition to continuing to press for passage of the CARE Act in other states, there are many important areas of work ahead in implementation of Nevada’s 2015 law. We need strong outreach and education to the public, adequate training of hospital staff, and the appropriate development of regulations to help monitor and enforce the laws. Probably most importantly, states that have the CARE Act experience need to share their lessons and learning with other states that have more recently enacted the legislation. AARP is facilitating much of this sharing.

Lack of sufficient time might be a major reason why the 3 care elements identified in the CARE Act are not routinely addressed by the discharging team (which may include hospitalists, nurses, pharmacists, social workers, and other clinicians). However, there may be other reasons as well, including a lack of knowledge, confidence, or tools for how to best prepare the patient and family caregiver.

This is compounded by the absence of routine feedback loops for gauging the effectiveness of discharge preparation beyond a patient’s readmission to the same facility. If hospital-based clinicians were asked to rank order their daily tasks from greatest sense of professional gratification to lowest, discharge preparation would likely appear toward the bottom of the list.

Although current Centers for Medicare and Medicaid Services’ (CMS) Hospital Conditions of Participation for Discharge Planning do not require recognition or preparation of family caregivers, CMS’ newly proposed revisions emphasize better preparation of family caregivers to be active partners upon hospital discharge. New resources may be needed to implement the CARE Act. In the absence of a user’s guide, hospitals may wish to take advantage of valuable publicly available resources that encourage more effective collaboration between family caregivers and healthcare professionals.

Operationalizing the CARE Act may initially appear simple but in practice it is not necessarily easy. The first care element focuses on identifying the family caregiver, which hopefully happened before or at time of admission. The second CARE Act element entails informing the family caregiver when the patient will be discharged. At present there is no standardization of this practice. Many hospitals conduct interdisciplinary rounds, during which a discharge date is frequently estimated, this date needs to be communicated to the identified family caregiver.

The third care element needs to have educational tools designed to facilitate more productive interactions and guide the care team in understanding what common transition-related areas family caregivers would like to feel more prepared for or confident with. Hospital leaders might consider creating an interdisciplinary team charged with facilitating the implementation of the CARE Act. Similarly, for ongoing input and suggestions for how to further improve all aspects of hospital care, including the discharge experience, hospitals are encouraged to form and foster patient and family advisory councils.

Finally, when it comes to fulfilling the CARE Act and improving the hospital discharge experience for family caregivers, we have to be involved as health advocates. Be aware of the CARE Act and its functions, especially as a caregiver. Point out gaps in the hospital discharge planning process and, as a caregiver, request information and education on the plan of care. In this regard, we are all invested in improving the discharge experience, so speak up! What better way to “add life to years.”

Lawrence J. Weiss, Ph.D. is Founder and CEO of the Center for Healthy Aging. Dr. Weiss welcomes your comments on this column. Write to him at larry@addinglifetoyears.com or c/o Center for Healthy Aging, 11 Fillmore Way, Reno, NV 89519.