Share, Learn, and Connect at National Caregiving Conference

We invited Denise M. Brown to author an article for Senior Care Corner® because we believe her conference is a valuable opportunity and resource for family caregivers. In addition, in the article she offers a number of resources family caregivers will find valuable sources of support now and in the future.

Denise began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support them. She’s the author of several books including The Caregiving Years, Six Stages to a Meaningful Journey.

 

We often hear that we need to take regular breaks from our caregiving responsibilities. Often those suggested breaks include ideas for self-care which mostly focus on pampering.

Pampering is more than manicures and pedicures.

Our National Caregiving Conference feels like pampering for your heart and soul. When you join us at our conference, you join a community that understands you and that welcomes you.

Often during our caregiving experience we can feel disconnected, wondering where we belong because our lives feel so much different that our friends, co-workers and neighbors.

At our conference, you connect with others in a similar situation and with those who totally get it.

Connecting and Learning

Because you connect with those who understand, you can develop deep and meaningful relationships with other attendees.

Elizabeth Miller, who helps care for her mom and operates her own business, HappyHealthyCaregiver.com, returns to our conference every year to re-connect with friends she met at our first year conference. She also will present for the third straight year because she wants to share what she learned the hard way about self-care.

Sharon Hall, who cares for her husband and cared for her mom until her mom’s death in March, presents at our conference to share what she’s learned about her husband’s disease, frontotemporal degeneration. She knows how confusing the FTD behavior can be and wants others to know that they can manage the difficulties. If you care for a family member with FTD, networking with Sharon will provide a sense of relief that only someone who truly understands can give.

At our conference, we’re not just educating each other. Professionals and researchers attend to learn from us what caregiving is like. Last year, researchers from Purdue University and Johns Hopkins University attended our sessions to hear directly from family caregivers about their experiences.

We’re the experts in caregiving which is why health care professionals and researchers attend our National Caregiving Conference – to improve their work by receiving our expertise.

This Year’s Conference

This year’s conference, which will take place November 7-10 at the Chicago Marriott O’Hare, will honor our amazing difference to our family, our carees, our community and ourselves.

This year, we want to create an experience that leaves you feeling different, either about yourself, your caregiving experience or your future.

We also want you to return home with new relationships which continue to pamper your heart and soul until our next conference in 2020.

Caregiver Resources

We understand that attending our conference can present a financial hardship. Visit CareGiving.com regularly to learn about contests you can enter for a chance to win cash and free nights at our conference hotel. Each year, we’ve given away at least $4,000 to help family caregivers and former family caregivers attend our conference.

In addition, you can check out these organizations if you need to hire or have help for your caree so you can attend:

  • Check with your local Area Agency on Aging to find out about programs which help you get a break.
  • Call the Department of Veterans Affairs National Caregiver Support Line at 1-855-260-3274.
  • Hospice offers a five-day respite benefit so the primary family caregiver can take a break.
  • Contact your local assisted living facilities and nursing homes to learn about short-term placement for your caree while you attend the conference.
  • Disease-specific organizations, like the Alzheimer’s Association and ALS Association, may offer respite programs.
  • Easter Seals offers programs for adults and children with disabilities.

If you cannot join us in Chicago, we hope you’ll watch our live, free broadcast of select conference sessions on November 8 and 9. As you watch our live broadcast, you’ll feel connected to a community that understands.

To learn more about our conference, please visit our conference webpage.

 

Eating Well While Growing Older – Family Caregiver Quick Tip

As we age, many older adults tend to change the way they eat. This change may be intentional for many and while for others it is done unknowingly.

Many will eat less thinking their bodies don’t need as much food because they aren’t as physically active as they once were.

This way of thinking may be true for overall number of calories but not for nutritional content.

Some older adults experience more trouble with chewing and swallowing foods when they eat, taste foods differently, don’t feel like preparing meals for one, feel lonesome during meal times, fear ‘healthier’ foods are too expensive, or overly restrict what they eat because they are trying to control a chronic disease.

One or all of these reasons may be influencing what your senior loved one is eating (or not eating) and impacting not only their health but, also unknowingly, their quality of life.

Caregivers can help by identifying potential gaps in their senior loved ones’ nutrition and then filling those gaps for their health.

Aging and Impaired Nutrition

A large percentage of older adults (those over 65) have multiple chronic diseases that can affect their nutritional status. According to the National Council on Aging (NCOA), 80% of seniors have at least one chronic disease and 77% have two or more.

A poor diet while aging can lead to frailty which results in becoming nutritionally compromised, making it harder for older adults to fight sickness or stress. Reduced muscle mass leading to impaired functional status and even malnutrition (undernutrition) can also occur.

A loss of muscle mass and strength can lead to falls. A senior falls every 11 seconds. Unfortunately, falls are the leading cause of fractures, head trauma, hospitalization and injury deaths for older adults, per the NCOA.

Cognitive impairment can worsen nutritional health because unintentional weight loss is common in those with dementia. Lower food intake, increased physical movement (pacing, etc.), reduced resting energy expenditure (metabolism), or a combination contribute to weight loss and impaired nutrition.

Getting enough healthy food, especially foods that include protein and essential nutrients, such as calcium and B vitamins, can make independence harder to maintain as our senior loved ones age.

Caregivers Can Help

Older adults may need help staying healthy, especially when their appetites begin to wane.

Family caregivers can help older adults stay on track, eat nutrient dense foods, shop for healthy foods on a budget, and facilitate putting meals on the table when they can’t always do it for themselves.

Here are ways family caregivers can help seniors eating well everyday from the National Institute of Aging and the Academy of Nutrition and Dietetics (association of Registered Dietitians). Get them to…

  1. Eat a variety of foods from all food groups, don’t skip important foods
  2. Choose fruits and vegetables at each meal. Use fresh, frozen, or canned to stay in budget and make preparation as easy as possible.
  3. Eat a rainbow of foods to get the maximum amounts of essential vitamins and minerals.
  4. Include whole grains, protein, and dairy foods at each meal.
  5. Drink plenty of fluids, including water. As we age, our sense of thirst diminishes so we need to drink often. Avoid sugar sweetened beverages.
  6. Invite friends and families to share a meal to reduce loneliness and boredom. Most seniors will eat more when they have someone join them.
  7. Flavor food with herbs and spices instead of salt. The tastier a food is, the more they may eat.
  8. If dental problems are keeping your senior from eating a variety of foods, it is time for a dental checkup.
  9. If they aren’t eating enough, talk with the doctor about starting a nutritional/vitamin/mineral supplement.

Additional Resources

Caregivers can get creative when helping seniors eat a more nutritious diet.

Here are more ways you can help your senior avoid malnutrition that could keep them from aging in place successfully.

 

 




Improving Health Through Participation in Clinical Trials

How many people do you know who have participated in a clinical trial?

A clinical trial or research study involves human volunteers (also called participants) and is intended to add to medical knowledge. There are two main types of clinical studies: clinical trials and observational studies.

Family caregivers may not realize that clinical trials/studies not only help their own older adults learn more about their disease process but can help others when science is advanced toward improved treatments and even cures.

People who may qualify to enter clinical trials don’t have to be at the end of their life, grasping for a miracle.

Clinical trial research can help learn more about diseases affecting older loved ones, including dementia, Parkinson’s, pain, migraines, eczema, rheumatoid arthritis, and Crohn’s disease, to name only a few studies currently ongoing.

With so many opportunities available, what keeps many of us from joining the fight to help those suffering from chronic diseases or at risk in the future?

Barriers To Clinical Trial Participation

Speaking to caregivers and those who could benefit from research studies, it becomes clear there is not only misinformation about research studies but also fear of participating that keeps many from becoming a part of a study.

  • Awareness of what to expect, time involvement in both duration of the study and travel, potential risks and benefits, how your data is protected, and lack of learning about how you have impacted change are often cited as reasons that keep people from joining.
  • There may also be a lingering belief that trials are only for those with end-stage medical diagnosis, such as terminal cancer. This is no longer the case, as science yearns to discover the cause of disease, how to prevent illness, how to best treat specific diagnosis, how family members of someone with a chronic disease such as dementia may progress themselves, best courses of action to adjust pharmaceutical interventions, or test non-pharmacological means such as lifestyle changes, formulating vaccines for prevention, or cures to stop debilitating diseases in their tracks.
  • Technology and global scientific collaboration have done much to advance scientific knowledge of disease and treatment. But are they effectively communicating with potential participants?
  • Frustration with clinical trials for those who have once participated because they never heard from researchers again once their piece of the process was completed may keep others away from joining too. Perhaps someone you know never heard if the medication or treatment worked or will be used to treat others. Most people want to know the outcome, but researchers often don’t share the data or results with participants once the trial is closed.
  • Oftentimes, reading research trial information about eligibility requirements and actual involvement in the trial (what it hopes to accomplish and how it will be achieved) can be confusing and difficult for most people to understand, which keeps them from moving forward to join.

These factors can become obstacles that people, especially family caregivers, don’t have time or energy to try to overcome, especially because long-term benefit of doing so is hard to assess.

Fortunately, there are ways to learn more about clinical trials and their benefits that don’t require us to be scientists to understand.

Plain-Language Summaries Improve Understanding and Transparency

Medical jargon and scientific terms can be difficult to the point of being unreadable for many people, limiting their enrollment in research studies or even impacting their effective participation once enrolled.

There is a movement to make information sharing about clinical research trials accessible to every person and it is called plain-language summaries (PLS). These summaries are written so that the pages of scientific terminology in a research study are condensed into a short form that is easier to understand.

PLS provide the lay public with information about clinical research in language that is easy to understand and are required by law in the European Union (EU), although not currently in the United States.

In the EU, plain-language summaries must be provided for one year after the close of the trial. They are required to be provided in all languages of the countries in the union, as are the materials provided at the start of the study, with inclusion of an English version for all.

In the US, it is up to trial sponsors to provide plain-language summaries, and many are now making this information available to increase participation so that the study can yield meaningful results. But not all researchers do so, which means helpful (and hopeful) clinical trials are still not accessible by some due to the inability to be aware of and comfortable about the particular study.

Some truly beneficial studies may even be hard to find, as the use of jargon instead of everyday speech impedes their discovery.

Plain-Language Summaries Encourage Participation

Many people are disappointed when they are not fully informed or able to understand the results of the trial they helped or to be provided any information once the study closes. However, PLS can offer understandable results after the close of a study, which most participants appreciate.

According to a 2017 Perception and Insight Study by The Center for Information & Study on Clinical Research Participation (CISCRP), ninety-one percent of study participants indicated that wanting to learn the results of the study is very important. Unfortunately, only about half of participants are told the results once they are done.

A PLS will contain information for potential participants or their family caregivers in digestible chunks, in an easy-to-understand format. Everyday language, instead of medical or scientific terminology, is used. There are also often images to help explain or illustrate information for better understanding.

If more trials had PLS, it is very likely that more caregivers and seniors would feel comfortable and in control of their decision about entering a trial, as well as sharing their experiences with others to encourage them to do the same.

Having information that reduces fear and increases awareness will hopefully increase the participation rate, yielding benefits that can be achieved when clinical trials get the amount and diversity of participants that are needed to successfully run a research study.

Questions to Answer Before Joining

If you or someone you know is interested in joining a clinical trial, here are some questions from CureClick (adapted from resources provided by ClinicalTrials.gov, a service of the National Institutes of Health) you may find helpful to aid in your understanding of the program and the importance of your participation.

  • What is being studied?
  • Why do researchers believe the intervention being tested might be effective?
  • Why might it not be effective? Has it been tested before?
  • What are the possible interventions that I might receive during the trial?
  • How will it be determined which interventions I receive (for example, by random selection)?
  • Who will know which intervention I receive during the trial? Will I know? Will members of the
    research team know?
  • How do the possible risks, side effects, and benefits of this trial compare with those of my current treatment?
  • What will I have to do?
  • What tests and procedures are involved?
  • How often will I have to visit the hospital or clinic?
  • Will hospitalization be required?
  • How long will the study last?
  • Who will pay for my participation?
  • Will I be reimbursed for other expenses?
  • What type of long‐term follow‐up care is part of this trial?
  • If I benefit from the intervention, will I be allowed to continue receiving it after the trial ends?
  • Will results of the study be provided to me?
  • Who will oversee my medical care while I am in the trial?

There are many diseases that family caregivers and seniors would like to see an end to in their lifetimes.

Through participation in clinical trials that advance science to find effective prevention, treatments, and cures, we all benefit.

Giving Holiday Magic to Seniors in Need, Now & Throughout the Year

The holiday season often leads to thoughts of what we can do to assist others in need, especially when we have what we need for our own senior loved ones.

The data from the last census tells us that one in six seniors lives below the federal poverty level. At 16%, the proportion of seniors living in poverty is also higher than the proportion of all Americans in poverty according the data.

The bottom line is that millions of seniors are suffering while trying to meet their basic needs.

Many of us are familiar with the work done by food banks, soup kitchens and those who provide holiday meals in shelters that are found across the country. But what about those seniors who are homebound, have no access to transportation to get to these sites, are disabled, or have no family to provide enhancements whether they are living at home or in a facility?

Who is thinking about helping them or giving them some treats of the season?

How about you? Do you have time or money to give to help seniors in your community during the holiday season but don’t know where to look?

Programs Helping Seniors in Need

There are many programs we have found that are reaching out to seniors who might be alone and in need of a little extra attention (and supplies) during the holidays.

There are seniors in your area who are in need of help and outreach projects that are serving them, but here are just a few examples of programs to which you can offer your support.

The Humanitarian Service Project –  Senior Citizen Project

This project serves seniors in DuPage County, Illinois who have limited access to transportation and few, if any, family ties. The Senior Citizen Project delivers to seniors over 100 pounds of nutritious food each month. Fresh produce includes 15 assorted fruits and vegetables, 7 different frozen meats, fresh bread, 6 bags of non-perishable food, and paper products including toilet paper, paper towels, and facial tissue.

Seniors also receive household products, personal care items, and special gifts from their Secret Pals. Volunteers deliver these items right to the homes of the needy seniors at no cost to them.

The wish list program invites the senior to request items like televisions, microwaves, couches, refrigerators, and vacuum cleaners to make everyday living more comfortable, or medical assistive devices such as wheelchairs, etc.

DOROT’s Thanksgiving Meal Delivery

DOROT’s holiday meal delivery program “Brighten the day of a senior! Deliver a traditional Thanksgiving meal along with a gift to an older person and visit for about an hour.” Located in New York.

Volunteers needed to help elderly live with dignity at home, generation to generation caregiving.

Seniors have the option of coming to share a meal with the group at the center or have a meal delivered to their home for Thanksgiving.

Seasonal Home Maintenance at Housing Opportunities & Maintenance for Seniors (HOME)

In the city of Chicago you can help weatherize the house of a senior in need with the H.O.M.E. program. Help seniors prepare their home for the harsh winter to come. Training and materials are provided.

The goal of this program is to facilitate aging in place as long as possible and practical for each senior.

The Angel Tree Program

The Salvation Army’s highest profile Christmas effort was created in 1979 by Majors Charles and Shirley White. This program can be found throughout the country and serves not only children but seniors in need as well.

You select an angel from the tree for a senior which include their wish list. You fulfill the wish and return the gifts it to the site of the tree. Volunteers then deliver the gifts near the holidays.

Look for an angel tree in your community or contact your local Salvation Army for more details.

Catholic Charities

The programs sponsored by Catholic Charities in your area also sponsor families and seniors who are in need of some Christmas cheer. You can locate the agency nearest you to see if you can assist their program.

Holiday Dinner Baskets for Homebound Seniors

This program from So Others May Eat (SOME) says “Would you like to help a homebound senior this holiday season? You can provide holiday food baskets! Filled with all of the trimmings, these baskets will be delivered to low-income seniors.”

This group works in Washington DC. You make the food basket using the list they provide and drop off to them for distribution.

Meals on Wheels

Through Meals on Wheels, across the country meals are provided to homebound seniors throughout the year. Volunteers deliver meals and socialize with the seniors they serve.

At the holiday, usually special holiday meals and even treats are given through this program. Contact your local program to see how you can help using this locator.

Support Senior Programs in Your Community

The programs we discussed above are just a sampling of programs that have caught our eye over time. There are many, many more great ones providing benefit to seniors across the country.

We urge you to seek out and support programs in your own community. These programs are only going to see more demand for their services as the senior population grows and puts a greater strain on all the resources available to serve them.

As with many things, you might learn the most about what is in your community with a quick Google search. Of course, local government agencies and senior centers might also point you in the right direction, but you may get the most full picture from a web search. Keep in mind. some programs operate on a shoestring budget and may not have a web presence, but most today are at least on Facebook, if they don’t have standalone sites, finding being online is needed in many eyes to have credibility.

As with donating to any cause, you should check out senior programs before you lend your support. Visit them or ask around to ensure the program is legitimate and one you will feel good supporting.

Keep in mind, too, that money is not the only way you can support local programs. They may find any time you can give them even more valuable than money!

Holidays Aren’t the Only Time of Need

During the holidays, we want to share the spirit of the season with those in need of some help. However, it is nice to remember that most of the programs that help vulnerable seniors could use our help at other times during the year. Most food banks give meals every week, Meals on Wheels are delivered daily during the week, and aging service organizations have opportunities to volunteer in many ways.

If you have the time, you could share your talents (or treasure) with organizations near you that help our seniors.

Family caregivers are very busy people who don’t always have extra time for other ‘jobs’ and could often use help themselves. Still, if you have the resources and desire to help seniors you will be reminded that in giving to others we end up being the recipients of something special ourselves.

Happy Holidays to you and your senior loved one!

 

 




Honoring Veterans With Access to Benefits They Have Earned

We are reminded on Veterans Day to honor those who served us by serving in the United States Armed Forces.

We honor those men and women who served with parades, events, monuments, and by simply saying “thank you” when we see them – – and meaning it.

Veterans Day Parade, Savannah GA

There are many other, more personal ways, we can honor our own loved ones who are Veterans.

We want to discuss one way of honoring them you may not have considered, one which in many cases will provide them something that helps them live better for years to come.

Ensuring our senior loved one who are Veterans are aware of the benefits available to them through the Veterans Administration (VA) and utilizing them, if appropriate, both honors their service and helps them in their everyday lives.

Majority of Veterans Not Using VA Benefits

According to a recent report from the VA, less than half (48%) of all Veterans are using even one of the VA benefits or services available to them as of 2016. That, though, is an increase from 38% in 2007.

Veterans Memorial, Washington, DC

Only 21% of Veterans utilized multiple VA benefits and services in 2016.

When you consider there were more than 20 million Veterans in 2016, that means a lot of men and women are not taking advantage of the benefits available to them.

These statistics don’t even consider the many millions of surviving spouses and children of Veterans, who have served their nation and us in their own way. They are also entitled to certain benefits due to the service of their Veteran.

In the mini-podcast below, we discuss helping senior loved ones who are Veterans or otherwise entitled to VA benefits to understand and, if appropriate, seek the benefits available to them.

Click on the ▷ below to play the podcast (note: you can continue reading while you listen if you want)

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Additional Information from the Mini-Podcast

In the mini-podcast, we discuss statistics from the 2010 National Survey of Veterans. This is the most recent survey performed by the VA and can be found here if you are interested in learning more.

Also, we made several mentions of our conversation with Victoria Collier, an Elder Law attorney who joined us for a previous podcast, Conversation with an Elder Law Attorney – Insights for Family Caregivers.

 

We hope you find this information helpful, as it can be particularly gratifying when we assist senior loved ones in learning about benefits they might not be aware are available to them especially our brave veterans.

 

 




 

Alzheimer’s Disease Update for Family Caregivers on World Alzheimer’s Day

Every September 21 for the past 7 years we have marked World Alzheimer’s Day.

The campaign hopes to further raise awareness of a disease that has affected millions worldwide and impacted families who face the daily challenges it causes.

Alzheimer’s is one type of dementia, but the most common. Dementia, a neurodegenerative disease, impairs cognitive function, ultimately impacting functional abilities.

It is irreversible, incurable, and has no effective treatment. Researchers believe the root of the disease is a combination of genetic, lifestyle, and environmental factors.

Hallmarks of the disease include:

  • Memory loss
  • Language difficulty
  • Poor executive (brain) function
  • Behavioral symptoms including delusions, agitation and depression
  • Decline in functional status – inability to complete self-care and activities of daily living such as eating, toileting and grooming

Eventually the person afflicted with dementia will lose the ability to remain independent and care for themselves. Therefore, caregivers will be a necessity.

Partners in Alzheimer’s Care

While it is vitally important that family caregivers provide much needed care to persons with dementia, the research and health communities must also partner together to ensure that people with Alzheimer’s and their caregivers are supported.

Here are a few ways that partners are joining the fight:

  1. Healthy Brain Initiative — a multifaceted approach to cognitive health. Their Road Map prepares all communities to act quickly and strategically by stimulating changes in policies, systems, and environment. They have a Complete Care Plan that can be used to help caregivers.
  2. National Institute on Aging Alzheimer’s Disease and Related Dementias Education and Referral Center (ADEAR) — Created by Congress in 1990 to “compile, archive, and disseminate information concerning Alzheimer’s disease” for health professionals, people with AD and their families, and the public.
  3. Alzheimer’s Association — their stated mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and, to reduce the risk of dementia through the promotion of brain health.
  4. Alzheimer’s Foundation of America — provides education and support to individuals and family caregivers living with Alzheimer’s disease; funds research
  5. Research — around the globe researchers are studying the cause, potential treatments, and prevention strategies for dementia. It is largely funded via public sources, but many private foundations, such as the Bill & Melinda Gates Foundation, and individual donors are adding to the funds being used to learn more. Sharing data will help advance our knowledge. Participating in clinical trials will also help researchers learn more hopefully for effective treatments and an eventual cure.

There are of course, many agencies, organizations and universities that are active in not just researching the disease, but supporting caregivers with education, training and resources. They are too numerous to mention but their work is heralded.

Hopefully, caregivers are participating in education and benefiting from support services in their local communities.

Learning more about dementia, understanding its trajectory and receiving emotional support from others will help caregivers on their journey.

 




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Care Plans – Ensuring Caregiving Addresses Wants and Needs

Have you or your senior loved one done an advance care plan?

You may have urged your senior loved one to execute legal documents that spell out their wishes at the end of life. You may have also completed documents such as a DNR (do not resuscitate) order to dictate how you wish to receive medical interventions. But has your senior (or you as a caregiver) set forth your personal desires for caring?

Making wishes known, not just about who gets the desk or car, but how you want to be cared for when you can no longer express your wishes is important for family caregivers and seniors to document no matter their age.

These decisions are very personal and should be guided by your values, preferences, and life beliefs.

Caring for older adults, as well as considering our own needs as caregivers, should involve creating plans for care.

Common Desires to Include in a Care Plan

One in four households currently includes at least one person who is serving as a caregiver.

As we all age, the prevalence of chronic disease increases, affecting our need for care.

About one-fourth of people with chronic conditions are limited in their capacity to live independently and to do everything for themselves that needs to be done, such as personal care, housekeeping, or medication management. We may need help accomplishing these daily activities.

We usually have a specific way we like things done, too. Those should be spelled out in your care plan.

Here are some of the most common desires we all have as we age that should be included in our care plan:

  • Controlling our pain
  • Honoring our wishes
  • Be treated as a whole person
  • Receiving care in a homelike location instead of a facility
  • Being surrounded with people we love (or restrict those we don’t want to care for us)
  • Having enough money to cover our costs without leaving family to pay the bills
  • Living with dignity as we age up until death
  • Communicating effectively between person, family and healthcare providers

There are other things we can include in our personal care plan such as:

  • Arranging for your pet when you can no longer do it
  • Stating your desire for fresh flowers in your room
  • Wanting to keep certain family or friends involved or refusing them to be involved, depending on your relationship
  • Specifying the type of music to play when you are confined to your bed
  • Listing any other type of special consideration that is important to you or your senior loved one and could be easily overlooked when you can’t tell them what you like

Keeping Your Care Plan Updated

Your wishes expressed in your care plan can change as circumstances in your life change. They are not written in stone.

As a matter of fact, they should be reviewed regularly (at least annually) and updated as often as things or people change.

Perhaps the person you anticipate will give you care becomes incapacitated or moves to the other side of the country. You should change your wishes so that those needs be fulfilled by someone you designate.

Did you know that Medicare has a provision to pay your doctor or other healthcare provider to help your senior complete any advance care planning, either as part of their annual wellness visit or as a separate Part B service? It can be billed as many times as needed with no limits set on frequency by the Centers for Medicare Medicaid Services (CMS). Take advantage of this time to discuss future medical changes or potential long-term needs so that the care plan can reflect these issues.

Communicating the Plan to Everyone

Just as you would with legal documents for the end of life, once you and your senior loved one have created a personal advance care plan, it should be shared with significant family members, the established healthcare proxy, and the healthcare team.

As many as one third of us do not want to have CPR or other heroic measures but most of us do not share our wishes with our healthcare provider.

Older adults in the early stages of dementia are able to make decisions about future care on their own. However, the majority eventually will be unable to articulate their wishes for advance care planning and must rely on someone else to do so.

It is important to create an advanced care plan while cognition allows them to make decisions and make those decisions known. Once cognitive loss progresses, the ability to communicate decisions about their desired care will be lost.

Care Planning for Caregivers

Advance care planning is not just for those who are aging. An accident can happen to us at any age.

We should all have a plan, regardless of our age or health status. A life changing event can mean that we will be unable to express our own desires and need someone to speak for us using our personal care plan.

Important questions that should be addressed by family caregivers, but are often overlooked, include;

  • Who will care for your senior loved one when you are unable to do so?
  • Who will manage their care?
  • Where will they live?
  • Who will help pay the bills?
  • Who will be their advocate?

Enlisting the aid of the entire family will be an important part of seeing that not only your senior’s care is defined, but also yours as a family caregiver.

You may feel that taking time from your daily duties to consider and create an advance care plan is selfish. In reality, other family members will be thankful that you were thoughtful enough to guide them in providing care when the time comes.

Decisions about care made in advance are easier to follow than trying to think of what you (or your senior) might want family members to do.

It actually relieves their burden.

 




Elder Orphans — Raising Family Caregiver Awareness on the Senior Care Corner® Podcast

Millions of older adults receive care and support from loved ones. For many, it’s those family caregivers who enable them to age in place successfully.

But more than 20% of current seniors — and even higher percentages of future seniors — don’t have spouses, partners, or children to care for or about them.

In addition, many other seniors have family members who live a long distance away or are estranged. Either way, they aren’t around to provide the caregiving many of older loved ones need.

In an unfortunate irony, many who will face this situation in the future are — or will be — family caregivers themselves, providing for the needs of their parents or other senior loved ones.

What are these “elder orphans” to do when they need help with those things, big and small, they can no longer do effectively for themselves?

In this episode of the Senior Care Corner® Podcast, we want to help raise awareness and let current and future elder orphans know there are many others facing challenges similar to theirs.

Click on the ▷ below to play the podcast (note: you can continue reading while you listen if you want)

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Raising Awareness

Raising awareness of elder orphans is important, first, because many of us may know one who could use some help and not realize it. Understanding their situation is a step toward connecting them with what they need.

Promoting awareness in family caregivers and others who be elder orphans in the future enables them to start planning to meet the needs family caregivers might otherwise provide, things they might not otherwise consider in advance, such as these.

  • Determining who would care for them or where they would go if something happened to make them no longer able to care for themselves.
  • Establishing a network of people with whom they can communicate and socialize to help avoid isolation.
  • Arranging transportation for activities such as shopping, healthcare appointments, social activities, and more, should the elder orphan no longer have the ability or desire to drive.
  • Naming a healthcare proxy, someone to make medical decisions should the elder orphan become unable to do so.
  • Setting up emergency procedures, such as someone who will check in to ensure the elder orphan is okay, such as after a storm, during a heatwave, or simply after time has past without any interaction.

There are many more things current and future elder orphans should consider doing in advance to help them age successfully.

Conversation with Carol Marak

Carol Marak

When we decided to focus a podcast episode on elder orphans, we knew a conversation with Carol Marak was the only way to do it.

It is through social media interactions with Carol that we first learned of this hidden minority among our growing senior population. Finally, we got a chance to meet her at Aging in America this year, where she shared her insights as part of a panel.

After being a family caregiver to her own parents, Carol realized “there is no one who will do that for me.” Since then, she has researched, written, and spoken on the topic of elder orphans.

Carol also created a Facebook group for elder orphans, a place where members can interact and share experiences with others who understand what they are facing.

Links from This Episode

 

We look forward to sharing more about elder orphans in the future and hope you will check back with Senior Care Corner often for future podcasts and other articles.

 




Senior Hunger & Food Insecurity — What Family Caregivers Can Do

A continuing obstacle to staying healthy for seniors who age in place is food insecurity.

Family caregivers worry their senior loved ones may not be eating right but some, especially those who are long distance carers, may not realize how serious a problem they may be facing.

Worse, that this problem may be beyond their control without a little help from others.

Having food insecurity is not the same thing as senior hunger, although one can lead to the other. Hunger is a physical symptom of pain when there isn’t adequate food consumption which is usually temporary.

What is food insecurity?

Food insecurity is not having access to a sufficient quantity of wholesome, nutritious food that is affordable. It is a cultural, social and financial state which is often permanent.

Factors Contributing to Food Insecurity

It is estimated by the 2010 census that as many as 24 million people in households over 40 years old have some degree of food insecurity.

A major obstacle to accessing healthy food for many of our senior loved ones is money. Fixed incomes may not stretch to cover the cost of housing, medical care, medications, and food.

They may be forced to decide between prescriptions and food every month.

Maybe what they bought on their last shopping trip didn’t last until the next check arrived, so the funds weren’t sufficient to meet their eating needs. This could lead to skipped meals or eating smaller portions than they should for health.

Older adults may try to make their money go further, thinking that purchasing cheaper food will keep their budget in control. However, this means they are avoiding healthier food because it might be more expensive. Just having some food which isn’t nutritious enough to meet a senior’s physical needs isn’t the answer.

Another reason seniors may be food insecure is that they simply do not have healthy food sold near them. Perhaps they live in a rural area where the closest grocery store is too far from them. Sometimes living in a large, bustling city can also mean no grocery chains are close, instead only convenience foods sold in local markets or bodegas.

Areas without available healthy foods are known as food deserts.

Seniors may also have difficulty with transportation to go to and bring back healthy foods. They may no longer be able to drive and there may be no public transportation in their location. Paying for rides to get food could be out of question on a fixed income.

It is common sense that is proven by statistics – poorer people have more food insecurity.

Those living in the south also have higher food insecurity. This tends to illustrate the greatest problems resulting in food insecurity: economics and physical access due to geography.

So Many Affected by Hunger

Feeding America has created a map to help us all learn who is affected most by food insecurity and the number of people who are food insecure is shocking. This video explains more:

Older adults who receive SNAP (formerly called food stamps) have even higher levels of food insecurity according to an AARP 2015 Food Insecurity Among Older Adults Report.

Recently the NHANES (National Health and Nutrition Examination Study) study reported that SNAP participants were not choosing healthy foods and ate only 1.3 servings of fruits and vegetables (lower than recommendations of either 5 A Day or DASH plan of 7-9 per day) and drank more sugar sweetened beverages than others.

SNAP has no restrictions on the nutritional quality of the food purchased with the benefits.

Consequences of Food Insecurity for Seniors

Why should family caregivers be worried about food insecurity?

The AARP report finds that households suffering from food insecurity are more likely to have adults with long term physical health problems, higher numbers of chronic disease, and greater frequency of depression.

With chronic health conditions and increased medical needs as a result of poor nutrition, costs for healthcare increases leading to a downward spiral and less money for food.

Lack of adequate nutrition to maintain health is a challenge many older adults can’t overcome.

What Family Caregivers Can Do to Fill the Gap

Awareness of Food Insecurity

Family caregivers initially should observe whether or not your senior loved one is food insecure.

Ask yourself a few of these questions:

  1. Can they afford nutritious food in addition to costs of living and healthcare?
  2. If they have adequate funds, are they making healthy food choices?
  3. Can they get themselves to the grocery store, carry the food home, and prepare their own meals?
  4. Is healthy food accessible in their location or do they live in a food desert?
  5. Do they have a disability that compromises their ability to access healthy food?
  6. Does their mental status impede their self-care, that is, are they too depressed to care whether or not they eat?

Once you determine the prevalence of food insecurity and the potential root cause, it is time to take action.

Acting to Solve Food Insecurity

How can you help your senior overcome food insecurity?

Some solutions:

  • Complete the Benefits.gov checkup to be sure your senior receives all the financial help the government has available for which your senior is eligible.
  • Food pantries or banks – are there any local food banks either operated by a faith-based organization or community agencies that your senior could use to fill the gaps?
  • Online grocery shopping and food delivery – can you help your senior who may be too far from the grocery store get food delivered via online company?
  • Food assistance via SNAP (supplemental nutrition assistance program) – getting them in the system and their benefits could be something caregivers can facilitate for seniors
  • Get knowledge about which foods are healthy, how to make the most of your food budget and ways to manage or prevent chronic disease through healthy eating and encourage seniors to follow a healthier lifestyle
  • Arrange for a meal delivery system such as Meals on Wheels to get them a nutritious meal
  • Enroll them in a senior center near them to get more information on nutrition, companionship, socialization and a hot meal daily.
  • Bring them foods for their pantry or hot meals and schedule other family members to do the same.

Helping them get what they need to stay healthy is important for seniors to remain independent as they age.