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 

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 .

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.

Elder Abuse during the time of COVID-19

Another growing concern brought on to us by COVID-19 is the surprising uptick in reported cases of elder abuse during this time. Experts say the reasoning behind this could be the fact that these seniors are quarantined and isolated, therefore making it difficult for signs of abuse to be detected.

Unfortunately, there are various types of abuse. There is physical abuse, wherein the symptoms are more direct and obvious – and when noticed, would immediately prompt inquiries from family and the senior’s immediate support system.  

And then, there is the subtle type of abuse that has become prevalent during COVID-19 – financial abuse, which elders have become a prime target of.

With the uncertainty that COVID-19 has brought upon us, there are plenty of individuals who are unemployed, but have family members that are well to do. The temptation to take advantage of seemingly unknowing family members is difficult to resist.

Expert Advice

Lora Myles, a lawyer who works with elder adults, shared that one of her clients, was duped by his own grandson. His grandson shares the same name as his father, grandfather, and great grandfather, and used the opportunity to collect Social Security checks from all three of them simultaneously. Thankfully, her client became eventually aware of what was going on and took the right steps in reporting his grandson. His grandson is now serving time for fraud and sits in federal prison.

Lora’s advice is to call Adult Protective Services immediately if you suspect an elder adult being abused. She also shared that there are benefits in getting to know your neighbors also as they can be the one to call for help when an elder adult is subject to abuse. Oftentimes, Lora shared, elder adults are on the fence about reporting their own family members even though they have knowledge that they are being scammed by their own family. When Lora’s mother, Jean Myles, became aware that one of their neighbors was being abused, she contacted authorities immediately.

William Palmer, financial advisor, attributes the reason why plenty of older adults are falling prey to abuse is due to the fact that they are isolated. The isolation affects them in such a way that they become desperate to have an open communication with individuals, even if they are strangers – this is when scams such as romantic scams come into play. Like Lora, William advises individuals who know elderly seniors to advise them to talk and reach out to someone, especially in times when they feel isolated.


If you or someone you know might be a victim of elderly abuse, call Adult Protective Services at 888-729-0571 for statewide and all other areas.

If you suspect that someone you know may be immediate danger, call your local authorities right away.

For More Information

The Community Foundation’s latest initiative, Preventing Financial Scams, was created to help protect the community – our seniors. If you would like to learn more about how to protect yourself, or your community from financial scams, please visit or call the Community Foundation for more information at 775-333-5499.

By Luiza Benisano, Jean Myles, Lora Myles and William Palmer

Mental Health for Seniors During COVID-19

The COVID-19 outbreak has caused uncertainty, fear, and anxiety for a lot of people, which can be detrimental to anyone’s mental health. Now that we are going slowly transitioning back to our new norm with most going back to their regular schedule, there are still residual events from having experienced the world in a pandemic – anxiety, depression, stress over finances, unemployment and re-engaging with the world are some of the issues we will still be dealing with after the pandemic. Going through a pandemic is traumatic enough for all of us.

For seniors, it can be twice as harmful as majority of them have already been isolated before the pandemic.

With news of outbreaks in senior homes, facilities have taken extra steps in keeping the safety of seniors. Facilities have stopped allowing family and friends to visit as a precaution. Instead, they encourage for virtual visits through Facetime, Skype, and through other social media platforms.  

With this barrier put in place, it may be an even more detrimental time for seniors.

Seniors are the most vulnerable population of COVID-19. For caregivers, their main priority is the safety of the person they are taking care of but taking care of their mental health is also an important topic to be discussed. Helping seniors maintain their overall health is vital.

As a caregiver, the person you are taking care of most likely spends a good amount of time with you. Being their companion can fill in the gap of physical socialization they have been cut off from for the time being. Talking about family, their life story, asking about their opinion on certain things such as current events can help them feel like they are cared for and connected with people other than family and friends.

Making the most out of the situation by adding a bit of fun for the person you are taking care of can also add a lot of positivity to their day. Activities such as creating art, writing and drawing, or even practicing mindfulness can be relaxing and mentally stimulating.  Other simple activities such as taking a quick walk outdoors can also be an activity shared with the person you are taking care of – this can also help them re-engage with the world simply by seeing their outside environment, which can help make them feel less isolated.

These unprecedented times do not have to be a difficult time for seniors. By making their mental health also a priority, they can thrive better during these times.

For more resources for seniors, please visit:

If you would like to connect with other family caregivers to share advice, or ask questions on caregiving-related topics, please join our email discussion group and sign up here:     

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 “” (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

Dr. Larry Weiss
Center for Healthy Aging

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

Preparing for the Unexpected

Preparing for long-term care should be mandatory due to a lot of unexpected factors that could arise. Health care is expected to remain one of the biggest expenses in retirement. Medicare, along with Medicare-approved insurance plans such as Medigap or Medicare Advantage, may cover a large part of traditional medical expenses. However, it does not cover all health care expenses. Long-term care is potentially the largest of these. That’s why it is important to include potential long-term care costs as part of your retirement strategy, whether you are preparing for retirement or are already retired.

How Much Could It Cost?

    While many people associate long-term care (LTC) with a nursing home, long-term care can come in many forms. If long-term care is necessary, there may be options to control where care is received – this includes at home, or in an assisted living facility, adult day care, as well as a nursing home. In fact, more people receive long-term care services in their homes than anywhere else.¹

Annual costs can vary dramatically based on where the care is administered. Other factors such as your age, gender, state of residence and level of care also can affect the cost of long-term care services.

What Is the Likelihood I Will Need Long-term Care Services?

    So what’s the risk of needing long-term care services? According to the U.S. Department of Health & Human Services, about 40% of individuals over age 65 receive some form of paid in-home care, with an average care period lasting less than one year. However, about one-third of the population receives care in a nursing home; of those individuals, about half stay less than one year, 30% stay between one and three years and 20% stay longer than five years.¹

    As highlighted above, not everyone will need long-term care. But, because of the high cost and relative risk, we recommend you plan for two to three years of long-term care expenses as part of your overall retirement strategy. Depending on your gender (women tend to need longer coverage) and/or your family medical history (for example, if your family has a history of dementia), you may want to incorporate a longer potential stay. In addition, since the cost of care continues to rise, we also recommend you include inflation in your estimates, which could help cover the potential, much higher cost of long-term care in the future, particularly for people in their 50s and 60s. Additionally, since costs can vary significantly by region, it is important to ensure your strategy incorporates the cost of potential long-term care expenses based on where you live.

Preparing for Long-term Care Expenses

You can prepare for long-term care expenses by:

• Incorporating the potential costs into your projected retirement expenses (“self-insuring”)

• Transferring the risk to an insurance company through an insurance policy

• Combining self-insuring with insuring through a policy; for example, you could plan to self-insure the expected costs of one year’s worth of long-term care expenses and buy insurance for additional expenses.


    When considering self-insuring for long-term care expenses, it’s important that you work with your financial advisor to run retirement strategy scenarios. For example:

  1. Can your retirement strategy cover two to three years (or more) of potential long-term care expenses without derailing your retirement goals?
  2. How might these potential costs affect your spouse and family, both financially and emotionally, in the long term?
  3. How might other financial goals be affected by your decision to self-insure this need? For example, do you have specific legacy goals or have a goal that a specific need is covered? Would your plan meet such goals if you have to self-insure several years of long-term care expenses?

Working with your financial advisor can help you better understand the effects self-insuring has on your ability to reach your goals and determine the role, if any, insurance might play.


    You also have several options if you want to insure against the risk of long-term care expenses. Using traditional long-term care insurance historically has been the primary way to insure against such expenses. Long-term care insurance is still available and can provide the highest amount of coverage per dollar of premium. But concerns about premium increases and the “risk” of paying for insurance you may not use has resulted in the creation of additional insurance options. Some of these options combine features of life and long-term care insurance, such as hybrid/linked benefit insurance and life insurance with long-term care/chronic illness riders.

These insurance options can provide for a long-term care need by accessing the death benefit early and could even provide for long-term care needs over and above the value of the death benefit in the case of hybrids. But they also provide the traditional life insurance death benefit if long-term care services are not needed. Each of these options has different features and trade-offs that may be appropriate depending on your goals. That said, it’s important to know under which conditions the policy may be used to provide for your care. Not all chronic illness riders are the same; some policies require that your chronic illness be deemed permanent before you can use it for a long-term care need. We do not view permanent chronic illness riders as long-term care insurance.

When to Plan for a Potential Long-term Care Need

    While long-term care services are typically needed later in life (more than 60% of new claims occur after age 80²), we believe there are benefits to planning for long-term care earlier in life, particularly between the ages of 55 and 65. This is especially important if you decide insurance is an appropriate solution, because:

  1. You may have more flexibility with insurance premiums. The younger you are, the more likely you are to have lower premiums and the ability to spread the premiums over a longer time frame.
  2. Your health may be better, increasing the likelihood of either lower premiums or ensuring coverage can be obtained.
  3. You may still be working and be better positioned financially to pay the premiums.

Ultimately, the earlier you plan for a potential long-term care need, the more flexibility you may have to decide what type of solution works best for your situation.

Long-term Care and Your Family

    Another consideration as you plan for long-term care expenses is the potential impact on your family. For example, often the primary caregiver initially may be a spouse or family member, such as a child. This could put physical, mental and/or financial strain on the family caregiver. For example, studies show retirement balances for women are generally lower, in part because they may need to leave the workforce for a few years to care for an aging parent. ³ Consequently, your decisions on how to prepare for long-term care affect not only you but your family members who may be caring for you.

    In addition, it is important to consider the effect on your spouse’s retirement strategy if you are married. Assets earmarked for daily living may have to cover the cost of unexpected care for you and/or your spouse. Incorporating long-term care expenses into your retirement strategy may help you be better prepared for this scenario. Should you have legacy desires, you may also consider life insurance as a potential asset-transfer strategy. Using life insurance will allow a planned amount to transfer to your beneficiaries while allowing other assets to cover additional unexpected health care costs.

A Healthy Retirement Portfolio

    While some health care costs may be beyond your control, you can control how you prepare, which includes a strategy for covering traditional health and long-term care expenses. While long-term care may be a difficult topic, discussing in advance not just how you might want care to be administered but how to cover these costs can better position you, your family members and your retirement strategy should the need arise. Your financial advisor can work with you to better understand your desires and run different scenarios to help ensure your strategy can provide for you, and your potential care needs, over the long term.

Other Important Long-term Care Insurance Considerations


    When considering insurance for long-term care expenses, it is important to understand whether you can afford the premiums – today and in the future – relative to your overall budget. For example, if your retirement assets are less than $250,000, trying to insure long-term care expenses may be cost-prohibitive unless most of your income needs are already met by a pension and Social Security.

Activities of Daily Living (ADLs):

    You cannot use your LTC insurance for just any care-related expense. Generally, a physician must certify that you can no longer perform at least two of six activities of daily living (ADLs) – eating, bathing, dressing, walking, transferring and toileting – or deem you severely cognitively impaired before you can qualify for an insurance benefit.


    We generally recommend planning for expenses that are significantly more than current costs of care, particularly the younger you are (e.g., in your 50s and 60s).


    For hybrid and life insurance with long-term care riders, the premiums are typically guaranteed to remain at a fixed amount, unlike for traditional long-term care insurance. However, premiums are generally higher and may require larger up-front payment(s) relative to traditional long-term care insurance. Life insurance policies with a long-term care rider generally offer the most flexibility over how to pay your premiums, but they do not have options such as inflation protection or the ability to add additional long-term care coverage above the value of the death benefit, such as with hybrids.

Spousal Planning

    You also must determine whether to insure one individual or both. Women, on average, tend to use more paid long-term care services, due in part to a longer life expectancy. Age, current health and family history are also important considerations when determining who needs more coverage and whom to insure. It may be helpful to run different scenarios with different coverage options — for example, budgeting long-term care expenses for each partner – to understand which options make the most sense from a financial standpoint.

A Permanent Chronic Illness Rider Is NOT Long-term Care Insurance

    A long-term care rider on an insurance policy is often referred to as a “chronic illness rider.” This rider allows you to access the death benefit on the insurance policy for medical reasons. However, there are two types of chronic illness riders: chronic illness riders and permanent chronic illness riders. It’s important to understand the difference.

    Usually, a permanent chronic illness rider requires a doctor’s evaluation that your condition is permanent, and you are not expected to recover. This definition is different from what we would consider a long-term care rider, because long-term care riders don’t have a “permanent” requirement. If your covered condition is expected to last for at least 90 days and be recoverable (mild stroke, orthopedic surgery, etc.), a long-term care rider may provide benefits; a permanent chronic illness rider would not. Although the requirements are more rigid, a permanent chronic illness rider can provide a benefit if the permanent qualification is met. Because of this difference, we do not recommend permanent chronic illness riders as a substitute for long-term care insurance.

1 Source: U.S. Department of Health & Human Services

2 Source: MetLife

3 Source:

William Palmer III

Financial Advisor. A.A.M.S. ®

Respite Care for Caregivers

The dictionary describes respite as, “A short period of rest or relief from something difficult.”

Being a caregiver for an adult, whether that adult is a parent, spouse, child, other family member or life partner, is one of the most difficult tasks that life hands to people. Caregiving is a 24-hour job, 7 days a week.  Taking care of yourself while being a caregiver is all important. A caregiver simply cannot work without rest or a time off to care for themselves and to do the things they need to attend to without interruption. 

At the end of my caregiving, I hired professional caregivers from 10:00 p.m. until 6:00 a.m. so that I could sleep through the night in another bedroom in the house.  They would wake me up when they ran into a problem.  My days were so intense that I needed that sleep. 

Many areas in Northern Nevada offer respite care for caregivers, giving them time to do the things they need to do for themselves. With that said, most respite care personnel do not offer nursing services. Check on the website for “Resources for Family Caregivers to Seniors in Washoe County” for respite care information.  If the person you are caring for is on hospice, hospice offers respite care during the day, but not at night.  

Being able to go to your own medical or dental appointments is all important while caregiving, as is simply taking time out for yourself from caregiving chores.  Having a respite care person come in to sit with your loved one so that you can go shopping, have lunch with a friend, go to a concert, go for a walk or simply take a nap gives you time to breathe, and plan for the days and weeks ahead.  If personal care is needed, make certain that the respite care person can help the patient with personal care.

Some skilled facilities offer respite caregiving for days or even a whole week, so that families or individuals can take a well-deserved holiday.  This time also gives the person being cared for a change. Several skilled facilities are listed on the website.  Call and ask if they will take people who need caregiving services for several days, then visit the facility to make certain that you are comfortable with the care and services they offer.  Many of the in-home-care services offer 24-hour care. It is expensive, but well worth the cost so that the caregiver can take time off. 

One family I know shares caregiving.  To keep their mom from being confused, the son and daughter each have a room with a bathroom in their home that is exactly alike, with everything the patient is familiar with in the same place.  They simply take their Mom for a drive or to a medical appointment when it is time to shift caregiving chores, then take her to the other house. The arrangement works very well for them and gives both families respite time for themselves.   

All too often, a caregiver will collapse under the stress of caregiving, and it is stressful, believe me. There are many services in Washoe County to make the caregiver’s life an easier one.

Respite care is whatever works for you so that you have time to maintain your friendships and social contacts during caregiving, so that your own lifestyle does not change.  This is all important. Your life does not end when caregiving ends.




Jean Myles      

Why Support Groups Are Essential For Caregivers

Many people are born with an innate sense of selflessness; one that motivates people to go out of their way to help others before they help themselves. We all know someone like this; maybe it’s the neighbor who always shovels a pathway through the snow on your driveway the morning after a storm, that one friend that is really good at checking in and offering their time when you need it,

or even the cashier at the grocery store that will help you carry your groceries to your car, which isn’t in their job description. It seems that people who are helpers and always giving often neglect time for themselves, an integral part of reducing burnout and increasing quality of life.

The same holds true for the unsung heroes in every community in the world: caregivers. Most caregivers in the United States work either full or part time in addition to serving as a care partner for family or friends. Usually caught between multiple professional and personal obligations, caregivers are the perfect example of a population that regularly fail to take care of themselves.

Though there are many small changes a person can make to care for themselves while caregiving, seeking out support can be a small commitment that makes a large impact. Studies have shown that support groups for caregivers not only have a positive impact on their feelings towards being a caregiver, but also for the person they are caring for.

Support groups are not always facilitated in a circular-everyone-is-forced-to-talk structure. Many times, a support group can be meeting for coffee or attending presentations all while talking about the successes and challenges each caregiver has faced. It is merely a place where you are able to openly share your story and feelings with others who may be going through the exact same thing; a place for you to be heard. Anecdotally, there are many people who find joy in attending support groups, but there are also proven benefits to seeking support.

The Mayo Clinic says that support groups can reduce feelings of loneliness and isolation, reduce stress, fatigue and anxiety, and allow members to gain hope and feelings of empowerment. Additionally, the National Institutes of Health share that support groups for caregivers can actually delay nursing home placement—a win-win situation for care partners!

In Washoe County, it is easy to find a support group for your current caregiving situation. Parkinson’s, Alzheimer’s, various cancers, and grievance support groups are available to the community. Check out the list on Washoe Caregivers website to find the best group that works for you. For rural caregivers, there are still options to get connected through the resources in Washoe County, but online support groups are also available, offering flexible help when you need it most.  

Jumping into a new atmosphere is hard when someone is already feeling tired and isolated, especially if that has not been the norm for a long time. Taking time for one’s self is not selfish—it’s necessary! Consider checking out a support group and taking a fellow caregiver as a personal challenge for 2019, something that will surely help you to be the best version of yourself in the long run.

“Taking care of yourself doesn’t mean me first, it means me too.”
– L.R. Knost


Kelli Hirt

Becoming Someone Else’s Hero

The truth of the matter is, when you are a caregiver, you go beyond your job. You go beyond yourself. You become a nurturer and a healer. You learn how to become empathetic and compassionate to those in need. You learn the virtue of being patient. You learn to be flexible with your time because you also have to consider other people’s time and what they need from you.

My mom is a very hard-working woman. Before she became a caregiver, she was a flight attendant for 23 years. Needless to say, hospitality and caring for people came naturally to her.

After she retired from working at the Philippine Airlines for 23 years, she relocated to the US. To make a living for herself, she embarked upon her journey as a new caregiver. She has since then been a caregiver for 18 years.

Caregiving was something my mom took pride in. More than a job, she became fully invested in the people she took care of. After all, she spent most of her time with them. Grocery shopping, salon appointments, lunches and dinners, you name it.

So it was very disappointing for my mom to hear that there were people who looked down on caregiving, who viewed this occupation as a less than ideal job.

Her friends would ask her tactless questions like, “Do you really clean up after someone for a living? I wouldn’t want to do that! I don’t know how you do it.”

Much to my mom’s dismay, she was disappointed at how her own friends were condescending of her livelihood. To my mom, she saw caregiving as rewarding and honest hard work.

Besides the fact that what she does for a living went beyond any other person’s comfort zone, her job entailed something else entirely worth noting: sacrifice.

I cannot even tell you all the times she would tell me how isolated she felt because she couldn’t see friends or her sister because she had to be with the person she was taking care of for the majority of that day, and maybe only had a day or two to herself out of the whole week to be able to do her own thing.

I cannot even tell you how many Christmases, New Years, Thanksgivings, and family gatherings she’s missed because she had to be with the person she was taking care of. I cannot even tell you how many times she has cried to me over the phone because she would have rather spent the holidays with her family rather than having to be with someone else’s.

Besides having the job description of caring for, giving time and attention a hundred percent to someone more than their own family, caregivers also have to sacrifice their time with their own family.

I think some people look down on caregiving because it is not a glorified one. It is a lot of hard work. Oftentimes, dirty work. And it can be a thankless job. It is not the kind of job where you walk in an office suit, or the type of job that entails going to glamourous, social events.

The truth of the matter is, it is a job so much more than that.  

When you are a caregiver, you become someone else’s hero.

So to all the caregivers out there, thank you. Thank you for all the sacrifices you make. Thank you for choosing to be someone’s hero.

“Kindness can transform someone’s dark moment with a blaze of light. You’ll never know how much your caring matters. Make a difference for another today.” 


Luiza Benisano

Honor Jones: Family Caregiver and Volunteer

Family caregiving takes many forms. Some caregivers take a parent to doctors’ appointments and pick up prescriptions. Others become 24/7 caregivers, proving for all needs of a family member. Caregivers often enter their situation unexpectedly, lacking knowledge of available resources and unsure how to navigate the caregiving role. Everything can seem fine until it is not. Then, the caregiving begins whether you are ready or not. An example is Honor Jones.

The unexpected happened and their lives took an unexpected journey. The following section highlights Honor’s experience as a caregiver and later her involvement in the Caregiver Support Initiative.


Honor Jones became a 24/7 caregiver for her husband, Max, practically overnight. Max began experiencing a loss of strength and mobility of his arms. Sometime before, he had fallen off a ladder and struck his head. Thinking it might be pinched nerve but puzzled by his loss of strength and diminishing muscle, Max and Honor visited several doctors with non-conclusive results. Initially, Max was diagnosed with “man in a barrel syndrome.” Lyme Disease was also considered. Max and Honor finally went to the University of California, San Francisco ALS Center, but Max’s condition remained undiagnosed. On one visit, Max felt a heaviness in his chest and walking pneumonia was suspected.  Max was admitted to the UCSF Medical Center and diagnosed with pneumonia. He aspirated on a protein drink fed to him. He was immediately transferred to the ICU where he was placed on a ventilator. Continued ventilation required a tracheostomy and a percutaneous (PEG) tube for nutrition.

After a month in the ICU, Max’s lungs were clear, but he had been diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s Disease. He was transferred to Tahoe Pacific in Reno, where he stayed for two months. Max’s discharge instructions required placement in a subacute ventilator rehabilitation center, except there were none in Northern Nevada!  Faced with moving to Las Vegas or California, away from their home, their family, and their social support system, Honor set her mind on finding a way for Max to remain at home.  She loved Max.  They were nearing their 50th wedding anniversary, Max’s 90-year-old father was alive and well, and more grandchildren were on the horizon.   Honor would figure out a way to manage his care.

Like many caregivers, Honor did not know where to begin. There were more questions than answers. Honor shared, “There was no information; there was no manual or guidebook. I wasn’t familiar with the area’s social and community resources.  It all hit so fast, I went to the basics. I kept a spiral notebook with notes of everything I was told by the doctors, nurses and case workers. But, there really wasn’t a definitive roadmap for care for someone in Max’s situation. I had to ask questions, investigate and research to figure this all out, which I did. I requested that the staff train me in the hospital. I stayed day and night, watching and learning about all of his required treatment and equipment and how to handle it.”

Honor and Max were faced with many decisions after Max’s ALS diagnosis. Max decided to retain the trach tube and ventilator since he knew he would eventually be on the ventilator fulltime. Honor suddenly had to tend to all of Max’s needs. Honor shared that Max, “had been a very self-sufficient individual and had a strong will to live.  As time went on, I would say that it enhanced our relationship although the stress and challenges were at times overwhelming.  I remained positive.  I had told myself, ‘I would not, in any way be negative about this.’” Their lives had a new normal.


“I stayed day and night, watching and learning about all of his required treatment and equipment and how to handle it.” 


ALS affects motor neurons that control muscle movements, ultimately leading to total paralysis and loss of speech.  Mental acuity and sensory faculties remain intact.  Max was entirely mentally alert and could feel temperature and pressure. Overtime, his muscles deteriorated, and he became fully paralyzed. Through it all, Honor connected with Max.  She danced with Max in his power chair. And, she recalls, “We also kept our cuddle time. Touch is extremely important to a person that can feel. I would take his hand and pet his dog and give her a cookie. I would watch the news with him every night and cuddle, lay next to him, feel him, touch him, talk to him.  You have to connect with the person you’re caring for physically and mentally.”

Honor embraced her challenges as Max’s primary caregiver. She hired assistant caregivers to tend to Max and allow her some respite.    Honor was always vigilant, waking up in the middle of the night to the faintest noise and would check to make sure Max was alright.  She became a “ventilator engineer.”  She was there 24/7.


Building Empathy

When asked about her most treasured memories as a caregiver, Honor responded there were many but seeing her grandchildren’s easy acceptance of Max’s condition and watching them navigate Papa’s power chair are certainly some.  Honor stated she endeared, “watching how the grandchildren accepted Max’s disability as normal and how they carried this acceptance to school.  Students from a special needs class would leave at the same time.  I watched my grandsons accept them with interest and concern regarding their disabilities, when other students sometimes did not.  We talked about their disabilities versus Papa’s. And I said, ‘It’s just a disability, that’s all it is.’”

Honor found that caregiving, “is something that we don’t talk about or think about until it happens.”  When asked how she survived her caregiving experiences, Honor’s advice to other family caregivers is first to accept the situation.  Second, develop coping skills.  And, third, keep up with a few vital interests of your own.”


Joining the Caregiver Support Initiative

Honor was the first caregiver to join the Caregiver Support Initiative when it commenced in 2016.  At the time, Honor had cared for Max for 10 years. When asked about her first impression of the Caregiver Support Initiative, Honor stated, “I knew there was a tremendous need.  I harken back to my spiral notebook where I wrote everything, every person, and every phone number down, over and over, as I learned about contacts, resources, and specific care requirements.   When I stayed overnight, I even drew the equipment in my notebook and labeled it all.  I had to learn it all and it was a crash course!”

Honor knew other caregivers were facing the same challenges and believed in the Caregiver Support Initiative.  Honor explained that when she first got to the meeting she thought:

“Yes, we definitely can put this together to help other caregivers on their journey.” Honor has regularly been involved in the Caregiver Support Initiative and observes:


“The Community Foundation brings awareness to the public.  As I see it, the Community Foundation is one of the most empathetic, caring, community-minded organizations there is. There are many philanthropic entities, but the Community Foundation stands out through the initiatives it undertakes, such as the Caregiver Support Initiative, resulting in resounding education and public awareness.  The Caregiver Support Initiative could not be in better hands.  The best of the community’s social services, medical entities, and medical school members and staff joined the Community Foundation to bring the Caregiver Support Initiative to fruition.”


Sharing the Initiative with Max

Because Honor consulted Max on decisions, she naturally told him about her involvement in the Caregiver Support Initiative. Max always took pride in what his family did.  “I’d go over something we discussed at one of the meetings and I’d say, ‘Do you think that’s right on?’ And he would tell me through blinks, two blinks were no, one was yes. He communicated that way because he could no longer nod his head or use his eye gauge computer to respond. At the end, he could only blink his eyes.” At first Honor was not sure if Max understood the scope of the initiative. However, when Honor showed him the Washoe Caregivers Guidebook, Max, an engineer, grasped its entirety.  “This was right up his alley,” said Honor.

Max passed away on September 9, 2018. Honor was Max’s primary caregiver for 12 years after they were told on discharge that he had three months to live with an ALS diagnosis. Honor credits Max’s longevity to his strong will to live, the excellent care and meticulous hygiene she required of herself and others, and of course, the spiral notebook. Although Max and Honor’s lives dramatically changed, they maintained their strong relationship, and went on a different and unexpected journey.  They were still able to enjoy each other and their family, experiencing many milestones along the way, including their 61st wedding anniversary, birthdays and the arrival of more grandchildren.