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Caregiving 101: for those who are new to the role

November is National Family Caregivers Month. We’d like to thank Caregivers of New Jersey (CNJ) for providing this guest blog.

Many families and loved ones across the nation are held together by the support of their caregivers. Day in and day out, these brave individuals are the ones making the sacrifice to ensure the well-being of so many.

According to “2020 Report: Caregiving in the U.S.,” a May 2020 research report from AARP, there are an estimated 63 million caregivers in the United States, and this community continues to grow. With aging generations needing more to support their healthcare, many people are finding themselves becoming caregivers.

An intimidating role to step into, being a caregiver is no easy task – especially during a global pandemic. There are many struggles and challenges to face. However, as a nation and as a caregiving community, we are united in resilience to meet them head-on.

Over the years, the caregiving community, healthcare community, government and so many others have come together to bring resources to our bravest individuals – our caregivers. Whether in our homes or on our frontlines, there is always help. Let us show you.

Getting Started
The caregiver role can take many shapes. It could be someone caring for an aging parent, a loved one with a disability or even a young adult caring for a relative. You could be getting groceries, helping with physical therapy, arranging appointments, administering prescriptions/medical care and much more. No matter what role a caregiver has, there are several first steps that every caregiver should take:

• Get a solid diagnosis: Having an accurate distinction of the disability or medical condition your loved one is facing will help you become a better caregiver. You will have more of an understanding of what you can do and what you should research to provide the best standard of care.

• Research: The more you know about the condition/disability, the better. This will prepare you for the care you can provide and allow you to have deeper communication with medical staff. Additionally, you can find and connect with caregiving resources that are more central to the needs you find (see below).

• Talk with Family/Loved Ones: It is important to include those who are relevant to your loved one throughout this process. The treatment your loved one receives and how the process is handled can become very personal, and tough decisions may need to be made. Having open and honest discussions can create a better circle of support and understanding as you all go through this together.

• Finances: There should be clear outlines of a financial plan to care for your loved one. Again, this involves talking with those who are relevant to the person needing care, as well as medical providers and insurance. Creating a well-thought-out budget will help you focus on the more important parts of being a caregiver, which will minimize stress.

• Complete Legal Paperwork: This might include a Power of Attorney, Advance Medical Directives, POLST form, wills, etc. Having these documents completed ahead of time will provide answers to questions down the road if the condition worsens, and alleviate stress. It is always better to be prepared, even if these are difficult conversations to have.

Connect with your Local Community
There are 63 million caregivers nationwide, and you are never far from help. All across the country, there are people just like you who have come together to create resources for the community. Doing some research to find out what is available in your area can be extremely helpful when it comes to answering questions, finding the best care or even just finding someone to listen to. Locating your closest caregiving coalition, such as Caregivers of New Jersey, can provide you with a more personal level of support and resources.

Caring for YOU
Caring for someone 24/7 is no easy job. When you spend so much time caring for others, you may forget to take care of the most important part of caregiving – YOU!

According to a 2020 AARP survey, 26% percent of family caregivers described their situation as “highly stressful.” High levels of stress can take an immense toll on personal health. As AARP notes in their updated May 2020 article, titled “Caregiver Burnout: Steps for Coping with Stress,” 4 in 10 caregivers experience depression, mood swings and resentment due to their position.

There are many resources that can help you avoid this burnout. One of the main things caregivers need is simply time away. This is where respite care steps in. Respite care is short-term or temporary substitute care to relieve the primary caregiver. This can be found through Caregivers of New Jersey, some senior residential facilities, Veteran’s associations, local adult daycares, your local Area Agency on Aging, or even just family and friends.

Do not be afraid to ask for help! The help is there; you just need to speak up for yourself. You cannot be a good caregiver if you cannot care for yourself first. Practicing this “put-your-oxygen-mask-on-first” metaphor is not only better for you but better for your loved one.


Caregivers of New Jersey (CNJ) (njcaregivers.org) is dedicated to providing a central point of contact on caregiving issues, resulting in more effective information dissemination, increased support, awareness and advocacy. CNJ offers a wide array of resources for the caregiving community in counties across NJ, including support coordination, coalitions, and advocacy, as well as training and events. CNJ always puts the caregiver’s best interest at the heart of everything we do.

Caregivers of New Jersey was formed in response to the growing number of caregivers within the state. With more than 1.3 million caregivers in the state, CNJ will work to shed light on the mounting needs of caregivers and the increased need for support.

How to Age Well: Planning Your Path, Part 2: Home, Health, and “After I’m Gone…”

By Mason Crane-Bolton

Have you planned for future health and home changes? | Photo via pexels.com

 

There is no way to get aging “right”…

 

…But it does help to plan.

Something is happening each and every day across New Jersey. Across the United States. Across the entirety of the planet.

We are all getting older.

Like it or not, each and every one of us is on a journey of aging. From the moment we are born until the moment we die, we are aging.

We tend to think of aging as being something saved for an arbitrary age, like 50, 60, 65,…etc. We could list off the ages at which society (for one reason or another) has decided we’ve hit a certain benchmark in aging. Whether it’s Social Security benefits, Medicare enrollment, retirement, “senior citizen” discounts, or a screening your doctor now wants you to undergo, we tend to have these changes attached to specific ages or with “being of a certain age.” We think of them as being times in our life when a monumental change has occurred, a mark of “aging.”

But the truth is, regardless of what arbitrary number might be assigned to program enrollments or coupons, we don’t age in random, sudden leaps. We age constantly and gradually. While this might make it tempting to wait to plan for your later years, you should plan now. No one wants to be caught unawares by changes as you age or a sudden health crisis, so it makes sense to plan for your later years as early as possible. Think of planning now as training for becoming an older adult.

What if you already consider yourself an older adult? That’s not to say this blog doesn’t apply to you too! It absolutely does—no matter where you are or where you consider yourself to be in your path of aging, it makes sense to plan now for the road ahead, whether that road is two days or twenty years from now!

Having plans in place will mitigate much stress and bad decision-making in emergency situations. Much heartache and avoidable stressed is caused by being forced to make difficult decisions in the heat of the moment; time spent worrying about what the best decision is and then wondering if the right decision is the one you made.

What are some priorities to focus on? We’re so glad you asked. In this three-part series we’ll cover different aspects of how-to age well as we lead up to our 21st Annual Conference. If you’d like to register for the conference but haven’t yet, go to www.njfoundationforaging.org for more information.

This week we’ll cover: home, health, and “after I’m gone.”

 

Home

Wherever you live, there are changes you can make today for a better home tomorrow. A home that’s better suited to your future self.

Area rugs may be soft on your feet, but they can be a major trip hazard. Remove area rugs to prevent falls and cut down on your number of tripping hazards. If you still want something soft for your feet, consider installing carpets—these aren’t as trip-free as hard floors, but better than area rugs. Also, stay in the habit of wearing secure shoes instead of open-toed sandals or loose slippers around your home.

Although we covered many changes that may be needed due to mobility changes in the first part of this blog series (How to Age Well: Planning Your Path, Part 1), it’s also worth considering what changes you may want to make for your own comfort or peace of mind.

If your home is too large for you to comfortably handle, you may want to consider downsizing. Constant upkeep and cleaning of rooms that aren’t being used can take a toll on your energy and your money. If you’re concerned about having rooms available for visiting friends and family, let them stay at nearby hotels, motels, or Airbnb listings while they’re visiting. Not having to pay for extra heat, air conditioning and electricity, or regularly clean an infrequently used room, will make the visits more fun for everyone.

And if you missed it in the first part in our series, we have a link to help you find an aging-in-place specialist in your area: Living in Place.

 

Health

Whether or not you consider yourself to be in good health now, chances are that sooner or later you’ll have to face potential health issues. And even if you’re blessed with good health for the rest of your life, it’s a good idea to plan for a potential emergency. Whether it’s the diagnosis of a long-term illness or a broken ankle after a tumble on a running trail, illnesses and accidents happen—it’s best to be prepared.

First, learn your family medical history as best as you can and share this information with your medical providers. Is there a family history of cancer? Heart disease? Glaucoma or cataracts? Dementia or Alzheimer’s? Have you been previously diagnosed with any conditions or illnesses? Your medical provider should be alerted to any family or personal health history you have—this isn’t a guarantee you’ll have the same conditions, but a way for your physician to know what they should pay special attention to and screenings or treatments that could best benefit you. And remember that routine screenings and hygiene appointments, such as dental exams and cleanings, should be done regardless of age.

Interview your medical providers. If they don’t have a good understanding of aging in medicine or make you uncomfortable, look for a provider better suited to your needs. Many in the community of aging professionals now recognize the benefit of annual screenings for changes in cognitive abilities for early detection of possible dementia and Alzheimer’s—ask your provider if they do such screenings and any other screenings you have concerns about. Stay on top of changes in your health and don’t delay bringing them up with your provider; bring any questions you may have to your provider and make sure you get answers for each question. Bring your list with you and something to write on and with (don’t trust you remember everything when you get home) or ask your provider to send you home with additional information materials or resources. If your provider is unwilling to answer your questions, they are probably not the right provider for you.

Plan too for future caregiving needs and needed adaptations to changes. If you need caregiving, who will provide it and how? Will it be a nurse or a friend or family member? Will you need to pay this person? How often will you need help? You can ask your provider what insight they might have into your future needs, but also plan to have these discussions with spouses/partners, family, and yourself.

In addition to these concerns, you may think about bringing someone with you to your medical appointments—especially if you find yourself getting overwhelmed during exams or need some assistance in understanding procedures or doctor recommendations. If you have a caregiver or think it would be beneficial to have someone in the exam room with you, bring this up with your provider. Ask them if you could have a trusted person or caregiver with you.

As long as you’re planning, you should also plan what you would like in your medical care and end-of-life care. Seriously consider creating an Advance Directive and POLST form (Practitioner Orders for Life-Sustaining Treatment). You can learn more about these and fill the forms here NJ Advance Directive and POLST. Having an Advance Directive or POLST form often makes people uncomfortable because they believe the form is only for declining further medical care. This is not true. These forms allow individuals to express, in writing, when they are mentally and physically capable of making decisions, what they would like their medical care to be. Individuals can choose to have as many OR as few life-saving measures they would like to be taken in the event they are not conscious to tell doctors or loved ones their wishes. The POLST form also travels from doctor to doctor, allowing individuals to make their wishes known without having to fill out the form over and over again.

 

“After I’m Gone”

A former co-worker of mine, a planned giving attorney, used to use the phrase “If I get hit by an asteroid crossing the street tomorrow…” when talking about all the things we’d need to know if he died suddenly (he liked it as opposed to, “If I get hit by a bus,” because it seemed so much less likely!). In his line of work he was constantly discussing wills and estates with the organization’s supporters. This wasn’t as morbid as it may sound—the conservations were much less about death than a way for these supporters to tell my co-worker how they wanted to be remembered.

We don’t need to necessarily dwell on death with morbidity, but it’s healthy to recognize it will, inevitably, happen to us all. Whether or not we’re planning to give away money or large assets when we die, it’s not only wise, but necessary to plan what will happen with ourselves, our loved ones, and our things before and after we’re gone.

If you’re an adult, you should have a will. Regardless of how many assets you have or don’t have, whether you own a car or a house, a pet, or you have only the clothes on your back, it makes sense to dictate who will get what in a will. You can make this will as secret or as public as you’d like, give it all away to a favorite school or organization, or pass it along to family and friends, but you should make a will. Make sure you also have your will and wishes reviewed by an attorney to ensure your wishes can be carried out.

Even though most of us may be reluctant to discuss our own deaths, it’s worth remembering that our loved ones will have to process taking on additional household and/or financial responsibilities in addition to processing the emotional toll of our deaths. To make things easier for loved ones, it’s wise to write a list of passwords for bank accounts, utility accounts, etc., and to create other lists, such as where household objects are stored, how to maintain appliances or accounts, and other useful information your spouse/partner or loved ones might want to have access to.

Also consider having conversations with your loved ones about how you would like to have your death recognized. Let your loved ones know if you have religious/spiritual or personal practices that you would like incorporated into any kind of memorial service, song or story requests you may have, and any other details about your preferred type of service. If you face reluctance from loved ones in discussing matters of death, try to gently and compassionately remind them that these conversations are going to make things easier and are, ultimately, about love.

 

As we said in the first in our series, there is no one solution to deciding how you will cope with your home, health, or end-of-life decisions. Just as your life changes, so may the appropriate solution—having a plan, or even considering your current or future needs, is the first step to aging well.

 

Stay tuned for our next blog post, the third and last part in our “Planning to Age Well,” series: money and retirement.


Mason Crane-Bolton is Communications Manager for the New Jersey Foundation for Aging. His writing has appeared in EpiphanyUU WorldTo Wake/To Rise, and others. 

Are you prepared? What is an Advanced Directive?

Are you prepared?

What is an Advance Directive? Why would you need one? Where do you get a form? These are all important questions for anyone, but especially for older adults. You know your rights as a patient and that you can make your own decision about medical treatments, you discuss them with your physician. But what if you were not able to discuss them with your doctor? What if you became incapacitated and were incapable of conversation or comprehension?

That’s where an Advance Directive can help you. They have many other names and come in various types. Some people refer to them as Living Wills, or Instruction Directive, this type of Advance Directive allows for you to make a statement about your treatment preferences. Another type, Proxy Directive or Durable Power of Attorney for Healthcare, allows you to name a proxy, someone you trust to make decisions for you if you are not able. There is also a Combined Directive, in which you may give instructions as to your care if you are incapacitated but also name a proxy to care out those wishes and make decisions based on your treatment preferences.

An Advance Directive can be as simple or specific as you wish. In New Jersey there is no specific form that must be followed for an Advanced Directive and you do not need a lawyer to prepare one. It is suggested that if you have questions you could consult a lawyer or medical professional. There are many models available for Advance Directives and there will be links at the end of this blog. An Advance Directive can simply be a letter stating your health care wishes or it can be a detailed list of treatments that you would or would not want. It is important to remember that an Advance Directive can be used to request treatment not just withhold or withdraw treatment. It is a legally recognized document that can make your wishes know to your family in the event that you are unable to speak for yourself. It only requires your signature and two adults to witness your signature. You can have it notarized or signed by a legal authority but this is not necessary to make it a legal document.

You should share copies of your Advance Directive with your doctor, with family members and if you name a proxy or healthcare representative, you should share a copy with that person as well. Under New Jersey Law, medical staff must honor any written Advance Directive, they are only in effect when you are not capable of making your own decision. It is recommended that you review your Advance Directive every 5 years, you should initial it and have a witness if you make any changes.

The time to think about an Advance Directive is when you are healthy and able to make clear decisions. This way you can make your own decisions and/or appoint someone you trust to make those decisions.

Some resources:

Advance Directive Forms from Legal Services NJ

 

Brochure from New Jersey Ombudsman for the Institutionalized Elderly for more information call 1-877-582-6995 or 609-943-4023

New Jersey Hospital Association

Medical Society of NJ