Best Caregiver-Friendly Practices Part I

Best Caregiver-Friendly Practices for Free Part I

Below is a list of the best caregiver-friendly practices other companies have used to support working caregivers. If you are an employer or a business owner, this is for you. By implementing a few simple practices in your work, you will be able to retain and provide support to your caregiver employees.

  1. Private Area for Phone Calls

If you have an open layout at your office, consider designating a private area for your employees to take phone calls. Caregiving tasks happen at any time of the day. Most of the appointments your caregiving employees must schedule can only be done during conventional business hours and a private phone area can allow your employees to make calls containing sensitive or confidential information.

 

  1. Flexible Scheduling

Offering schedule flexibility is invaluable. Allowing a caregiving employee to come to work an hour early so they can leave earlier to take a family member to the hospital can be very helpful. In what ways can your company offer flexible scheduling to be more accommodating?

 

  1. Affinity Groups

Affinity groups are gatherings for caregiving employees to share stories and advice. Affinity groups can be conducted informally by simply having caregiving employees meet without a specific format, but they can also be formally conducted by bringing in a healthcare expert to listen and share information. Many caregivers do not realize that others, even their coworkers, are in similar situations. Hosing affinity groups is an easy way for caregivers to share their knowledge and have their questions answered by coworkers. Affinity groups can be offered on a monthly basis, or whenever it is convenient for your company to host gathering for caregiver employees.

 

Remember, supporting caregivers is good business.  When you support caregivers in your workplace, your business will benefit too. If you or someone you know is new at caregiving, visit https://nevadacaregivers.org/where-to-start/getting-started/ or call the Community Foundation at 775-333-5499 for more information.

Caregivers, Include the Person You are Caring for

Caregivers, holidays and celebrations are perfect opportunities to include the person you are caring to help with preparations.

My mother was very helpful. When she moved in with me, I let her do her part. She loved to cook and do laundry. This also saved me from a lot of work.

She also loved to plant flowers and hang out in the garden. Her mobility didn’t allow for her to be on her knees, so I bought her a level so she can still plant her flowers. We enjoyed working alongside one another in nature and doing activities together.

If you’re a caregiver, you can brighten their worlds by giving them activities that have meaning. What better way to do that than make activities together more meaningful?

As a family caregiver, it would be helpful if you learned what they like to do, or what they find meaningful and what they value. Some people might like puzzles, nature, going for rides or maybe going to the movies.

As you age, you experience loss throughout your life. When you are the only one left in the family and have gone through all that loss, you need to have a reason to live and engage. It is important for the human spirit to make a difference. As a caregiver, it is important that you help inspire them to have something to look forward to.

Keep that spark lit for them. It makes the job of caregiving more rewarding. It is an extra touch that makes the person you are caring for feel valued to still be a part of this world.

For resources on wellness and recreation options, check out our community services resources. For information on caregiver resources, call the Community Foundation at 775-333-5499 you can also visit nvcaregiverscoalition.com. 

 

By

Deanna Hearn

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

Home Safety Basics and Home Modifications

The purpose of home modifications is to ensure the safety, security, and independence of the person(s) in their own household.

As a caregiver, you will want to make sure the person you are caring for is safe and their household is conducive to their way of living. If the person’s home is tailored to suit their needs, it will also be easier for you as their caregiver to care for them.

Home modifications may not be instinctive to new family caregivers. If you are a new family caregiver, you might not know what would impose as a safety hazard. This article is here to help you learn the basics of home modifications and how you can keep the person you are caring for, safe.

First, you must identify the disability of the person you are caring for. The person you are caring for and their condition could vary between a mild one, like a broken leg, or a chronic disease that will gradually get worse. Whatever the case may be, it is essential to have a plan in place.

Being proactive regarding the safety of the person you are caring for is essential. As a caregiver, you should be mindful of potential hazards in the home. In order for you to be proactive, you must understand the basics or what to look out for in a home.

Home safety basics:

  • Electric cords: Are they out in the open where someone with a walker can trip over?
  • Lighting: is the lighting conducive for the person living in the home? Too much lighting can be uncomfortable for the person with eyesight issues. If the light is too dim, it can also be a hazard.
  • Towel racks: Does the person you take care of hold on to towel racks after they bathe/shower? Towel racks are not strong enough and cannot be a substitute for a safety bar.
  • Comfortable sofa: This might be an unlikely one, but a comfortable sofa can pose as a potential hazard for individuals who are immobile. They can sink into the sofa and have a tough time getting up on their own.

If the person you are caring for needs equipment like a safety bar for when they get out of the shower, your home needs a modification.

Diane Ross, the CEO and president of The Continuum, talks about one of the programs they offer, the MOD Squad, The Continuum’s Home Safety Risk Team that provides modification services.

The MOD Squad specializes in home accommodation and modification services.

First, a physical or occupational therapist goes into the home to assess the needs of the care partners and offers recommendations. An installation person will then come to the home to make the recommended modifications and installations.

Over the last 20 years, the MOD Squad has gone into more than a thousand homes in the community to make their homes a safer place to reside. These changes not only help the care recipient, but they also decrease the burden of care for the caregiver.

“Be proactive, don’t wait until someone takes a fall. Avoiding injury is our goal here at The Continuum. It is so important to plan ahead and perform a home safety check at least once a year. In these situations, it is also helpful to work together with your care partner so that you have a better understanding of their needs. Work as a team. Afterall, it is really important for everyone to have a safe home.”

Diane Ross

For more information on home modifications and safety equipment check list go to

www.aarp.org/homesafety

You can read more on home safety in the Nevada Caregivers Guidebook.

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

AB190 for Caregivers

AB190 is the family caregivers sick leave bill.

With the AB190 bill having taken effect last month, family caregivers no longer have to fear losing jobs to take their family member to medical appointments. 

The AB190 bill was first brought to the Nevada legislature in 2017 and was supported by AARP. The bill was also championed by Shannon Bilbray-Axelrod. The bill went through three sessions before it got passed.

According to Barry Gold, Director of Government Relations of AARP, the pandemic has put in a lot of perspective on how difficult it is to be a family caregiver. He said the pandemic has helped shed light on the importance of supporting family caregivers working to keep their jobs while taking care of a sick loved one.

The AB190 will benefit plenty of family caregivers in the workforce with the flexibility it provides.

Governor Sisolak who signed the bill stated:

“Supporting caregivers by allowing more flexibility in sick leave use is critically important to Nevada’s families. This legislation will keep more aging Nevadans in their homes and ensure their family members can care for their loved ones without sacrificing the financial security of their families.”

Along with caregivers, this will also benefit individuals who want to continue living in the comfort of their home instead of transitioning to a facility at a higher cost. Businesses will have reduction in turnover and absenteeism, and most importantly, retain employees. This is a win for caregiver employees and businesses.

Nevada employees who are caregivers for immediate family – parents, spouses, adults with dementia, disabilities, or other chronic conditions, children with disabilities or chronic medical conditions, or family with COVID-19 will be covered with this bill.

“Nevada’s caregivers deserve this flexibility to care for their loved one without sacrificing the financial security of their families,” said Gold.  

For more information on AB190, please call the Community Foundation at 775-333-5499 or visit AARP’s website at https://states.aarp.org/nevada/

Interview conducted by:
Luiza Benisano

Special Thanks:
Barry Gold  

Caregiving and Advocacy for Elders

Advocacy for your family members is important. Families—not institutions—provide the majority of caregiving to chronically ill and disabled persons. These families know the enormity of the burden in caring for someone with Alzheimer’s or Parkinson’s diseases, stroke, traumatic brain injury, or other long-term conditions. They also know the challenges in locating appropriate advice, services, and respite.

Personal experience with community agencies, round-the-clock care, and financial hardships mean families know what the important issues are. This puts family caregivers in a unique position to act as advocates. Caregivers can educate providers about the care recipients needs as well aa elected officials charged with development of public policy and funding priorities.

Caregivers and care receivers serve as the source of information for the healthcare system for current and past health histories, surgeries, allergies, medications, and more. The time and effort involved to manage and coordinate care needs, depending on each situation, can approach the time and perceived burden of being a part-time or full-time job. The skill of advocacy is important to receive better than average care.

Advocacy is rarely a natural skill but is a learned skill. Expert programming specific to healthcare advocacy, caregiving, and care receiver issues is targeted to specific needs. Family members also lack an understanding of the fiduciary role of medical and financial power of attorney. These issues include managing the emotional ups and downs of care relationships, identifying reasons for refusal of care, identifying memory loss, the decision to take away the car keys, and other difficult situations that must be managed day to day. Many variables exist in care situations and many are unexpected and unplanned. Caregiving experts with years of direct experience offer real support and real answers to complicated care situations. Learning the skill of advocacy supports achieving desired results for caregivers and care receivers. Expert programming is ideal for caregivers and care receivers who want to increase confidence and the ability to manage daily challenges and care needs.

Caregivers themselves need to be educated to deal especially with medical providers, but in essence all services as well. Educating caregivers who may be unfamiliar with aspects of caregiving and healthcare promotes the need for advocacy. Caregivers and those needing care often feel vulnerable to organizations of which they have little knowledge, especially the healthcare system. This lack of knowledge places care recipients in a position of receiving inappropriate or substandard care. The caregiver needs to provide the healthcare service providers with information about the identified patient that they themselves cannot provide. This in turn will provide the care recipient with the needed and beneficial care.  

Case Examples: Lynda Hascheff

I spent a lot of time caregiving for my mother and my aunt through each of their journeys with cancer.  Besides watching someone you love die from a horrible disease, the experience with the health care system may have made it twice as awful.  

Some questions I’m left with:  When and why did our elders become irrelevant and invisible?  Why does their life experiences and contributions not come with some value and gratitude? When did the need to slow down and explain things to them, maybe repeatedly, become a bigger burden than their right to respectful care?  When did convenience of an office system (one practice had them signing in on tablets with NO ASSISTANCE and a lot of huffing and puffing when it wasn’t completed) become more important than the comfort of the patient who was already so sick they probably had a hard time keeping their head up (and their presence was keeping the practice in business).

I’m convinced that if my mother and my aunt did not have an advocate with a little knowledge and time to help them, they would have received far worse care and very little consideration for their needs and/or rights.  As it was, they were given care that put them within one breath and one step of losing their life without their health care team taking a good look at them when they came in for treatment to notice how poorly they were doing before starting their procedure.  And all the while they continued to be pumped full of chemo and/or immunotherapy treatments regardless of their blood pressure, or their ability to barely say a word or keep their head up, but FOR SURE there was time to discuss the bill and copays at the end of the visit.  At times they waited HOURS on a health care professional to see them.  It’s as if the elderly person standing in front of them never registered in the eyes of the medical staff as a human being, but just as a task and/or a number.  

I have spent enough time in the waiting rooms of oncology offices to know that the majority of the patients being treated are elders.  When I ask the medical staff how many studies had been done on the efficacy of the treatment they were receiving on people their age, I was greeted with dirty looks and ‘crickets’ for an answer.

There have been many, many times we were told to go to the ER when my loved one couldn’t keep water down or spiked a fever.  Once there, we waited literal HOURS before anyone could help or get them into a room.   By the fourth or fifth trip I refused to take them (as they were also placed in the path of other people waiting who may have infections or colds).  However, many times they were admitted to the hospital and were typically given hydration and steroids, which seemed to temporarily improve their condition a little bit.  After about the fourth trip to the hospital, on discharge I asked for steroids ‘to go’ and the ability to get regular hydration treatments for my loved one.  The discharge doc actually said to me “I can’t prescribe you steroids as they are very dangerous….”  I literally laughed out loud and asked “more dangerous than stage 4 renal cancer”.  At that time, my aunt had been admitted to the hospital 5 times that month and given the same palliative treatments?  Needless to say, my aunt has been prescribed daily steroids as the (very expensive) immunotherapy killed her pituitary gland and her endocrinologist said she never should have been prescribed that treatment…. 

Every time my aunt was admitted to the hospital I stayed by her side 24/7 as she is allergic to SO much medication, bandage ingredients, food, etc., and I was worried they would not pay close enough attention of her allergies, and they didn’t disappoint me.  One time I was in the room and the nurse rolled in her with computer with bandage tape hanging from the monitor and a cup of pills to give my aunt.  I asked her what the medication was in the cup and what kind of tape was hanging from the monitor.  After she answered I said “oh, are you going to give those pills to my aunt and use that tape?”  The nurse said “I sure am” to which I said ‘no you are not as she is allergic to both and I have asked it to be added to her record every single time we’re here – which is often”!  Oy Vey!!!  Needless to say, I was not very popular in any medical setting.

Another time my mother had been admitted to the hospital (she had multiple myeloma and her spine was crumbling) and there was an alarm on her bed because she was a fall risk.   I never left her side while she was there, and one night she had to use the restroom and I couldn’t handle her by myself without causing her a tremendous amount of pain, so I stood her up and the bed alarm went off.  It took over 20 MINUTES for anyone to show up to help.  What kind of care is that?!?!

I often think about other elders in similar situations who do not have family near or friends that can help them, and wonder how they fare in these situations.  I can’t help but conclude they do not get the care they deserve and that makes me very sad.  And it makes me very angry.  

For tips on how to communicate with health care professionals, see the Nevada Caregivers Guidebook. You can call the Community Foundation at 775-333-5499.

 

By

Lawrence J. Weiss and Lynda E. Hascheff

Paper Bags and Caregiving Isolation

There is a good reason why all caregivers need their paper bags… For caregivers, there is a different weight that comes with knowing you are responsible for another person’s health and wellbeing, which can result in feelings of stress and isolation.

It is important for caregivers to care for themselves to fulfill their caregiving responsibilities while being able to care for themselves also. Oftentimes, however, caregivers put themselves and their mental health in the back burner simply because there isn’t enough time around the clock. Feelings of isolation seep in.

Lily is 70 years old and works as a caregiver in California. She has been a caregiver since 2001 and has cared for a lot of people over the years. Caregiving has always been a fulfilling journey for her, but as of late, she has been feeling burnt out from caregiving due to feelings of isolation.

As soon as she gets home, she starts caring for her sister who recently got diagnosed with stage 4 breast cancer. Lily and her sister both live in Oxnard, California and have limited support system. Most of their family are either out of state, or live a few hours away, leaving Lily the primary caregiver for her sister.

Lily voiced out how she started to feel physically exhausted from having to work as a caregiver by profession and being the primary caregiver for her ailing sister. She expressed how isolating it felt.

Eventually, she got sick and was hospitalized for more than a week.

Another family caregiver, Laura, shared with me why family caregivers end up feeling isolated. Aside from lack of support, they refuse to seek help from other people because they feel like they would be the best at caring for a family member.

Laura became a caregiver for her niece who suffered a stroke. She shared she felt isolated because becoming a caregiver was overnight.

“I feel that the reason why caregivers are isolated are for various reasons. For one, they don’t want to ask for help because caregivers want to show they can do it on their own. Caregivers are afraid of getting judged when it comes to how they care for a family member,” Laura shares.

Laura advises caregivers to not be afraid of what people think and not to isolate themselves. Instead, to work on expanding a support system and to ask for support even if that means asking for help. Expanding your support system is key to avoiding caregiver isolation.

Her advice for people like Lily is to make things easier on her end when it comes to caregiving. For example, asking someone to cover for her an hour a week, or perhaps order food once a week to give herself some reprieve.

Laura also advises caregivers to try to do something fun each day, no matter how small it is.  

“Laugh, make phone calls to friends and family. And if you don’t get things right all the time, don’t beat yourselves up and don’t be afraid of getting judged. Ask and accept help even if that is through blogs, or a quick search on the Internet.”

Laura also stresses the importance of expanding your support system so that you can take turns with caring for your family member.

Laura shared that over the years, she would share a paper bag to fellow caregivers, the caregivers stress relief bag. The paper bag could contain anything that makes them smile and relax.

“I would give all caregivers a simple paper bag and ask them to put in the paper bag whatever helps them relax. I would then tell caregivers to keep their paper bags handy whenever they need time to themselves.” 

If you don’t have any family or friends close by, you can always attend support groups and meet other family caregivers for support. Perhaps share with them your paper bag.  

Click here for more information on:

Interview conducted by:
Luiza Benisano 

Special Thanks:
Lily Martinelli and Laura Coger

Caregiving for Veterans with PTSD

At the beginning of my interview with Tod Sherman, he mentioned he was on the phone with me from inside his car. He said he needed a break. Aside from the everyday stresses that come along with caregiving, he was also dealing with a myriad of things that involve taking care of another family member.

But his primary care recipient is his wife, Dawn, a veteran who suffers from PTSD.

Post Traumatic Stress Disorder or PTSD, is a disorder a person suffers from after experiencing a traumatic event. According to webmd.com, “PTSD is a lasting consequence of traumatic ordeals that cause intense fear, helplessness, or horror.”

He says every day for him is planning and navigating around PTSD. For one, he plans around his wife’s certain triggers. The doctor she sees is someone she needs to have established rapport and be familiar with. Otherwise, a visit to the doctor can turn into a bad situation that involves yelling and screaming. At home, they don’t just let anyone enter inside. They are also careful with who they let in to avoid potential exposure to any types of viruses, most notably, the coronavirus.

On days that are more difficult than others, he drives his wife around the neighborhood, creating short spells of relaxation. He also encourages her to think of things they can plan for – something as simple as doing grocery shopping.

Caregiving for someone with PTSD, according to Tod, can be overwhelming at times because there is no cohesiveness or predictability to it.

“PTSD is not just for veterans; many individuals suffer from PTSD. There are plenty of people with PTSD, but veterans who suffer from PTSD are wired differently,” he said. “their training experience, structure, and response are different from everyone else’s.”

To help himself manage through the everyday journey of caregiving, he created an acronym as a guide for himself: A.A.R.P – Aware, Alert, Respond, and Positivity.

According to Tod, it is critical to be aware of the care recipient’s needs. To be aware, you must listen and listen to their story because PTSD sometimes hinders them from speaking their mind. “You need to listen because whatever information they are sharing with you, you might be able to gather context clues of what they may be really asking for,” he said. “You also have to realize that when you are caring for someone with PTSD, it is about them and not about you. So, ask questions and take in the answers – whatever that may be.”

He also advises for family caregivers to try to offer different, positive alternatives, and to get rid of anything that may be emotionally unhealthy for them.

“As a caregiver, I need to be protective of my wife,” he said. “I am blessed that I love my wife so much that I take my time to not let her mind take over.”

Tod says staying positive has helped him with caregiving journey. He encourages caregivers to come up with three things in the morning they are grateful for. He stresses the importance of not letting negative talk get in the way of yourself and taking care of others.  “There’s always something to be thankful for,” he said.

Click here for more veterans’ resources.

Interview by Luiza Benisano

Caregiving: A life on hold?

Caregiving can be rewarding and challenging.

When an individual is diagnosed with a progressive neurological disease like Alzheimer’s, Parkinson’s, or multiple sclerosis, it’s staggering, not only for the patient, but also for their family and friends. Many do not know where to start or how to move forward. Caregivers need all the extra support they can get so they can provide better care.

Recognizing the impact these impossibly difficult diseases have on families and the community, the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, NV provides no-cost educational and support programs nationwide. We believe education and awareness brings power and the ability to more readily cope. We involve the community to raise consciousness and enhance support for patients, as well as caregivers.

Most of the diseases we treat at our clinic have an eight to twenty-year trajectory. That is a long time to try and put a life on hold. We recommend patients and families stay as active as possible for as long as possible. As devastating as it can be to hear the diagnosis, it’s important to persevere and keep living to the best of one’s ability. Continue to do the things you’ve always loved individually and with your care recipient. Practice the principles of wellness at any age or state of the illness – eat a healthy diet, drink water, incorporate physical activity into your routine, visit with family and friends, minimize the risk of falls, implement a bedtime ritual to prepare for sleep, and finally, think about ways to reduce daily stress. 

After diagnosis, the first, best steps are to put one’s legal house and a financial plan in order. Consult with a lawyer. If you haven’t already, put advanced directives into place. These might include a living will, durable power of attorney for health care and financial matters, and Professional Orders for Life Sustaining Treatment (POLST). Next, learn as much about the disease you are confronting as possible. This will help you anticipate what is coming and develop a plan to pro-actively manage the obstacles ahead. Build a care team around you. Include medical professionals, physical, occupational and speech therapists, disease specific resource groups, family members, neighbors, friends, clergy and other people in your faith communities. When someone asks if they can help, let them. Have a list of things others can do to support day to day needs. If no one is asking, reach out and request help. If you are caregiving, it is vital that you are in tune with yourself. Listen to your body and your heart and make sure your needs are also being met.

Ongoing medical care is an important component of dealing with a chronic condition for the patient. However, caregivers must also be mindful to not neglect their own personal care. Make those annual check-up appointments. Follow through with recommended tests. Join a support group. Take a joy break. Sign up for respite. Get your hair done. Schedule a manicure/pedicure. Ultimately, love yourself so you can love another. Caregiving is a big responsibility. You want to make sure you are not neglecting yourself in the process.

Finally, learn about and take advantage of caregiver support services. Cleveland Clinic has several art, therapy, exercise, education and support programs available nationwide. All are free and open to the public. As is the case with most organizations, since COVID-19 reared its ugly head, our programs have migrated to virtual platforms. This has actually become beneficial as we are no longer bound by geography. We are able to provide services far and wide.

Our programs include a weekly lunch & learn livestream covering topics related to the diseases we treat, healthy aging, or community resources, featuring doctors, nurse practitioners, and therapists, as well as community leaders and other professionals. We provide three art programs. Mind in Design – an art making program where materials and supplies are sent to each household prior to meeting in a zoom room for an art making session; Conversations to Remember – an art discussion group where select art pieces drive the conversation relating back to each person’s individual story; and The Learning Arts – virtual tours to various museums, gardens, zoos and science centers across North America.

We have both an onsite library and e-library with extensive resources designed to support and inform patients and caregivers. Visit our e-library at www.keepmemoryalive.org. You will find selections under the caregiver resource tab. Email louruvolibrary@ccf.org to obtain a patron number.

Several evidenced-based caregiver support workshops are presented multiple times throughout the year. They include Powerful Tools for Caregivers, Improv for Care, Managing MS, and Dealing with Dementia.
These caregiving tools are helpful to have, especially for first-time caregivers.

Numerous support groups are available such as caring for a person with memory loss, Lewy Body Disease, FTD, PPA, Parkinson’s, PSP, Huntington’s, and multiple sclerosis.

Music Therapy is offered daily, and Rhythmic Reminiscence – a Music and Physical Therapy collaborative meets once a week, as does Yoga for Parkinson’s and Yoga for MS.

Options are numerous. We encourage you to try one or more. If you are interested in participating, or would like more specific information or to be added to our monthly newsletter, please call the education line 702.271.9563 or email louruvosocialserv@ccf.org

Caregiving and providing support to a loved one with a progressive neurological condition can be rewarding and challenging. To be successful, one must be prepared to learn new things, adapt to changes, plan for the short and long term and expect the unexpected. Trust yourself, believe in yourself and remind yourself every day that you are doing the best you can in the moment. When you feel like you’ve failed, forgive yourself and carry on. Remember to carve out time to pursue your own interests and passions. Hand the care baton to others on your care team as often as possible. And finally, let the language of love direct your thoughts, words and actions toward your care receiver, but mostly toward yourself.

Click here for more information on Alzheimer’s Disease and Dementia, or call the Community Foundation at 775-333-5499.

By Verla Niebuhr

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.

By

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.

Family Caregivers During a Pandemic

Family Caregivers Chris and Maria Ward have been long-distance caregivers for Chris’ sister since March of 2016. They talked to us about the challenges of keeping her safe while combating isolation over the last year.

Every caregiving situation is different. Please tell us some more about your role as family caregivers.

Chris: We used to travel the 1,000-mile round trip to visit my sister at least once a month, until it became clear that she could no longer live alone. The rotation of hired caregivers became confusing and she eventually agreed she needed more help. We moved her to a care setting a little closer to our family in Northern California over the Fourth of July holiday. 

Can you share more about how things have changed over the last year, and what impact the pandemic has had on your family?

Chris: My sister went from being a hard-working, successful businessperson to someone who could not find her way home from the mall in a relatively short period. The onset of the pandemic underscored the loneliness and confusion she was experiencing and the need for a higher level of care, albeit at the risk of losing her independence. We were no longer a bridge to resources and an antidote to loneliness; we became responsible for her safety and wellbeing.  

How have you responded to the changes?

Maria: We used to be able to visit in person and arrange for other friends and family members to check-in. Since the move to residential care, our priorities are to make sure she is fed and safe. We have to address the confusion that has set in since the move, and that can be challenging.

She struggled to adapt to her new home and was uncertain where she was for many weeks after moving. We have been able to arrange some limited social interaction for her, but we are not able to visit or connect other than by phone. We are in regular contact with the care staff and, for the time being, we can only advocate, communicate and hope things will improve enough for us to be together in person before too long.

We maintain the things that help, such as family traditions, spiritual connections and changing up the limited variety of activities. Even a weekly manicure can help lift her spirits.

Which programs and services offered by the Alzheimer’s Association® have you accessed over the last year? How have they helped you as caregivers?

Maria: We participate in a monthly support group and have found help, ideas, tips and tricks from others who are also caring for loved ones from a distance and have “been there.” The connection has been especially meaningful because we can share our experiences openly and in a safe environment.

We meet by Zoom but we can see each other’s faces and have a real conversation. We have also attended online education classes and made use of resources such as tips on choosing care providers and help for caregivers during Covid-19.

What would you like other caregivers to know?

Maria: We would encourage caregivers to contact the Alzheimer’s Association and take advantage of their free programs. Then do what they can to develop a relationship with the staff who care for their loved ones, so they understand more about who they are. Learn about them, connect with them, play games, provide companionship, engage other family members and think of creative ways to help overcome the isolation. That is the hardest part.

By Niki Rubarth, Executive Director of Alzheimer’s Association

The Alzheimer’s Association provides care, support and education to all those affected by Alzheimer’s or other dementia. Contact us at 775.786.8061 or at alz.org/nevada to learn more.

For Alzheimer’s Association’s support groups, visit: https://www.alz.org/help-support/community/support-groups

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

For more information on Alzheimer’s Association’s support groups and education classes, see below.

For more information on Alzheimer’s Association’s Education Classes, click here.

Alzheimer’s Association’s Support Groups for March

Reno Adult Children Caregiver Support Group – MEETING BY ZOOM AND TELEPHONE

Date: Wednesday, March 17, 2021

Time: 12:00 PM – 1:30 PM PDT

Delivery Method: Phone/Webinar

To register, click here.

Reno Spousal Caregiver Support Group – MEETING BY ZOOM AND TELEPHONE

Date: Wednesday, March 17, 2021

Time: 1:00 PM – 2:00 PM PDT

Delivery Method: Phone/Webinar

To register, click here.

Renown Caregiver Support Group – MEETING BY ZOOM AND TELEPHONE

Date: Friday, March 19, 2021

Time: 1:30 PM – 3:00 PM PDT

Delivery Method: Phone/Webinar

To register, click here.

Perceptions in Caregiving

Particularly in the world of caregiving, I am firmly yet gently advising never to take anything personally. Whether our hurt feelings result from something our loved one said or did or something that any one of the players in our day said or did, i.e., family, friends, doctors, staff, co-workers, we must remain vigilant in knowing that other people’s perceptions are just that, other people’s perception.

One of my favorite books is by Don Miguel Ruiz, “The Four Agreements.” This is the second Agreement.

Mr. Ruiz says, “Nothing other’s do is because of you. What others say and do is a projection of their reality. When you are immune to the opinions and actions of others, you won’t be the victim of needless suffering.”

Although he speaks of Life in general, his words give even more validation and reason to not take anything personally in our world of caregiving.

For me, caregiving amplifies this lesson among many other tough life lessons I would have otherwise learned under different circumstances over a more extended period of time, maybe even a lifetime.

Consider another clear example of someone who is undiagnosed bi-polar, or suicidal, aggressively autistic, or mentally challenged, or has Asperger’s. Wouldn’t it be a bit absurd to take their negative behavior towards us personally? Maybe we have crossed paths with someone who just lost a child or just lost their job. Or perhaps someone doesn’t have such extreme scenarios, and they are just having a tough time or a rough day.

Any number of these scenarios can cause others to do or say things that may be hurtful. Just remember it is where THEY are at, where THEY are coming from, not where WE are at or something that WE have done TO them.

Learn to separate yourself emotionally from their perspective and world, because it is their perspective and world.

My Mother’s Alzheimer’s not only taught me how to understand this concept but also how to better navigate the dynamics of other family members, or a doctor’s lousy bedside manner, or an insurance or bank agent having a bad day, or opinionated friends. I make it a point to keep in mind I did not cause their grief therefore I can’t take it personally.

Easier said than done, I know. Have I mastered this? Hell no. Am I a highly evolved person unaffected by hurtful words or actions? Of course not. But I’m better at it because of caregiving than I would have been otherwise.

Try and remember this Agreement. Remember it is about their dementia, their perception, attitude and situation from this disease. You did nothing to cause their hurtful words or actions, so take comfort in this truth of Don Miguel Ruiz’ words of wisdom in today’s quote.

If you are feeling overwhelmed by caregiving, joining a support group may be helpful for you. Click here for resources on support groups.

Sign up and learn more about The Community Foundation’s virtual support group for family caregivers.

For more blogs from Vic Railton, visit forgive-and-forget.com.

By Vic Railton