Food Banks: Thinking Outside of the Box

by Jodi Gatts, Administrator of Healthy Habits Training Center at Greater Washington County Food Bank

grocery bagFundamental Needs

Food banking as we know it today started with a Phoenix man, John Van Henge, in the 1960’s. He saw a need, developed a plan to rescue food from area grocery stores, and started an organization that is unfortunately still needed today.

One might find themselves in a line for food because of many different reasons – loss of a job, fire, illness, loss of a loved one. A lot of people are only one paycheck away from needing the support of their local food bank. And it is a big undertaking trying to provide a supplemental food box that is shelf stable, nutritious and delicious for the hungry people in our neighborhood.

Regional food banks can offer unique services to support the needs of their communities. Members of the leadership team and staff often think out of the box to try to offer resources, education, skills labs, and opportunities to meet local needs. These services supplement the food boxes and take the willingness of professionals to share their expertise.

Food Bank_Greater Washington CtyGreater Washington County Food Bank (GWCFB), located  in southwestern Pennsylvania, is able to get food to deserving families all over Washington County thanks to federal and state programs. We also have the capability of stretching our dollars farther than the average consumer. For every dollar we receive in monetary donations, we can stretch that dollar to five. That gives us 5 times the buying power! GWCFB delivered more than 2 million pounds of food in 2016-17 fiscal year. More than 33,000 families visited our food pantry locations. Also, thanks to partnerships with Walmart and Sam’s Club, we are also sending fresh produce, meats and bakery to our clients.

Low-income seniors can benefit from the Commodity Supplemental Food Program (CSFP), a federal program administered by the USDA. Qualifying clients over the age of 60 can receive a supplemental box. Produce to People is a once a month distribution of fresh produce that works alongside of the food bank. Each family receives on average 35-45 pounds of extra food and they can go to more than one location per month unlike the food pantries where they can only receive food from one pantry a month.


GWCFB recently moved to a new location in Washington County which was 10 miles from our previous location at a retail store with an attached warehouse. GWCFB purchased this building and began construction on their vision of “more than food.” Through grants from Walmart and UPMC, a training center was built consisting of two residential training kitchens and a classroom area with desks, chairs, a smart TV and 10 laptops. Classes are being offered on subjects such as finance, computers, extreme couponing, how to use essential oils, gardening classes, cooking and nutritional classes. These classes are free to attend for our food pantry clients and a nominal donation is asked of non-pantry clients. In the retail section of this building we opened a thrift store. Country Thrift Market is where our pantry clients and the community can purchase clothes, furniture, household items, jewelry, some snack items, and new health and beauty items for a fraction of the cost. All the proceeds from the Country Thrift Market support the Food Bank so we can continue to deliver food to our 49 pantries sites.

tomatoesOur new building sits on 22 acres of old farmland. We are working with the local university to get interns that can help us create a working farm. We have started with a few raised beds and 70 fruit trees that were donated by The Fruit Tree Foundation of Pittsburgh, PA. We envision traditional row crops of tomatoes, peppers, corn, pumpkins and squash. Having fresh produce grown on-site will enable us to save money in gasoline, will cut down on exhaust emissions and will be providing healthy produce to our pantry clients. It will also give the pantry clients an opportunity to give something back by volunteering in the gardens. The knowledge they will gain by helping on the farm can be used at their homes and communities to start gardens for their families and neighbors. Expanding green space in cities and suburban spaces has proven to be spiritually uplifting, and good for the body and soul. We also have plans for the “future” farm. Shipping containers can be turned into hydroponic gardens that will yield as much produce in a 20’ x 40’ space as farming two acres. We are also working with a local school district that has one of these onsite, to engineer 2 to 4 shipping containers to put in production on our back lot. 1500 heads of lettuce can be harvested each week out of one container. Local restaurants have already shown interest in buying from us which will help them promote “fresh, local foods.”

We feel we are providing a well-rounded experience to those willing to come learn and participate in our programs. Starting at ground level, participants are working the soil, planting, growing, bringing the harvest in to cook and preserve, and then taking the biodegradables back outside to feed the soil. GWCFB has adopted a saying, “It takes more than food.” We believe it also takes knowledge. Our vision for the future includes workshops, classes and teaching opportunities, as well as to continue to provide healthy and delicious supplemental foods to the residents of Washington County.


It is critical to make appropriate patient referrals to food banks but there may be programs the patient or family members would benefit from as well.

So what is happening at your local food bank? How can you get involve individually or as an organization? Do you have a skill or hobby you would like to share with your neighbors? You can make a difference!

HHQI Resource:  Heart-Healthy Boxes for Food Banks

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Is Diabetes Your Destiny? It’s Not the Native American’s!

Promoting self-empowerment and change through healthy choices and policies.

Susan Gay_Nov2017by Susan Gay, M.A.Ed., CHES., public health training coordinator, Southern Plains Tribal Health Board

You may already know that some racial/ethnic groups have higher rates of diabetes. This is true for Native Americans who have the highest prevalence (existing cases) of diagnosed diabetes among racial/ethnic groups in the United States. What you may not hear often though, are the personal stories of those with diabetes. Travel with me to a small town in Indian Country (Oklahoma), meet Karen, and listen as she shares the story of her journey with type 2 diabetes.

“It’s been five years since I was diagnosed with diabetes. When I found out that I had it, I was devastated and scared. I couldn’t believe it. I remember feeling sad for a few months, but things got better when I talked to friends that had it and they helped me learn more about it,” shared Karen. When I asked her if she felt she was going to get diabetes because she is Native American, she replied, “I knew I might be at higher risk because a lot of the women in my family have it, and I tried to be more active.”

healthy food_asparagusShe also shared, “I have the information and resources I need to successfully manage my diabetes. In the beginning, I learned a lot from other people I knew that had diabetes, like my mom and friends. I started asking my doctor more questions and met with the diabetes program at our clinic and learned more about what diabetes is and what foods to eat. It was really hard to balance my life with diabetes sometimes, but I saw my A1C [a blood test for type 2 diabetes and prediabetes] go from an 11 to a 5.9 and stay there just by sticking with a few healthy changes. I felt better physically and emotionally.” She continued, “Now, to control my diabetes, I watch what I eat a lot more and make sure to take my meds and schedule my doctor checkups. I stopped eating most foods with added sugar and the “white stuff” like white bread, white pasta, and cut back on potatoes.”

She ended by sharing some advice, “Always get your blood sugar checked every year and ask your doctor lots of questions. Talk with other people who have diabetes and see what worked for them. Stick to eating more fresh foods like fruits, veggies, meats, nuts and seeds. I usually pack carrots, a piece of fruit, and some peanuts with me when I’m on the go because sometimes it can be hard to find healthy foods.”

I shared Karen’s story because putting a face to a disease helps us to better understand its impact. It may also encourage those struggling with similar issues. Here are some points resulting from Karen’s story:

  • After finding out that she had diabetes and feeling sad for a few months, she began to seek out information from her doctor and others with the disease by asking. It is important for people to empower themselves with the knowledge, skills, and resources to be able to manage their health condition.
  • They should see themselves as the most important person on their healthcare team, even ahead of their doctor.  They know the symptoms of their disease, how they feel, what works for them and what doesn’t, and thus, are in a better position to engage with their doctor who they may only see once a month.
  • Karen took responsibility for her own health and began making decisions that would help her manage. She made changes in her food choices by choosing healthier options. As a result, she saw a huge improvement in her A1C levels. This in turn affected how she felt physically and emotionally and likely increased her self-confidence in her ability to manage the disease.

What Karen did in taking responsibility for her health is called the individual level in health behavior change. This level has to do with a person’s knowledge, motivation, ability to act, and norms. The individual level is where most health care professionals focus in behavior change. Although it is important that people take the necessary steps to improve their health, it is not the only level that affects health outcomes. Good health depends on many things. Some of these things are:

  • Climate and Environment – Are people able to breathe clean air when they are physically active outside?
  • Neighborhoods – Do children and their families live in safe neighborhoods where they can walk to and from school, or do they fear getting shot or seeing criminal activity on the street corner? Are there parks, sidewalks, cross walks, and other areas where the community can be physically active?
  • Food & Nutrition – Do communities have access to the foods that contribute to good health, such as fresh fruits and vegetables, or are they surrounded by fast food restaurants that make calorie-dense foods more available?
  • Income – Do people with chronic diseases like diabetes make enough money to avoid having to choose between buying wholesome food, paying rent, or taking care of other family expenses?
  • Health Care – Are people with diabetes able to afford health insurance and other health care costs? Do they have to choose between medical expenses and other necessities such as food, housing, transport, and clothing?

American IndianThese are all important things to consider because they all affect health. In other words, health is also affected at the social environmental level (family, friends, social networks), the organizational and community levels (organizations, institutions services, products, leadership, etc.), and the public policy level (national, state, and local laws, economics, natural environment, etc.). These factors affect Native Americans.

Karen recognized that she was at greater risk for diabetes because it was in her family. She made a step towards being more physically active. After she developed diabetes, she took other steps such as changing the way she ate, which significantly reduced her glucose.

There is an important lesson here; though genetically Native Americans and some other races and ethnicities may be at greater risk for diabetes, it doesn’t mean that they must develop it. Taking a fatalistic or a “no-matter-what-I-do-I-will-eventually-get-diabetes” approach will most likely lead to a lack of self-empowerment in making healthy choices and changes. There is growing evidence to suggest that lifestyle behaviors such as inactivity and diet play a greater role than genes in developing diseases like diabetes.

Karen also took advantage of the resources that were available to help her manage diabetes, such as her tribe’s diabetes program.

Programs such as the Special Diabetes Program for Indians, the National Diabetes Prevention Program, and diabetes self-management education help people at risk for diabetes and those with diabetes by providing them with knowledge, resources, and skills that can either prevent them from getting diabetes or help them manage it. Both prevention and management are crucial to preventing diabetes-related complications.

Here’s what you can do:

If you have diabetes, empower yourself, ask questions, and advocate for your own health. If you are a health care professional, a community leader, a politician, or just have an interest in public health, think about health conditions like diabetes using a comprehensive approach that focuses on all levels, as previously mentioned. Advocate for a health-in-all-policies approach that seeks to deal with health issues upstream through policies and strategies that focus on prevention and not merely treatment and rehabilitation. Let’s work together to make the healthy choice the easy choice for all. Is diabetes your destiny? It’s not the Native American’s!

November Health Observances:

  • American Diabetes Month
  • Native American Heritage Month

southern plains  oklahoma area


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A New Appreciation for Physical Therapy’s Role in Rehab

by Misty Kevech, HHQI RN Project Coordinator

Carer Helping Senior Man With Walking FrameHHQI would like to specifically thank all physical therapists (PTs) and assistants (PTAs) in honor of National Physical Therapy Month (#ChoosePT). In home health, physical therapists are valuable interdisciplinary team members that provide care to more than orthopedic or mobility issue patients. Physical therapists can assist with disease management, such as heart failure, by improving the patient’s strength and endurance to allow for a higher quality of life.

I have been very fortunate to have worked or partnered with a great number of amazing and caring physical therapists from clinical to administrative settings over the years. Often home health agencies don’t utilize therapists to their full scope of practice, or clinicians work in silos of care vs. an integrated system. But I have worked with organizations that embrace the value of therapists as wound care specialists, educators, quality improvement experts, and as leaders. Integration of therapists into an active care management team goes way beyond interdisciplinary team (IDT) reports via email or phone; it is creating a true interdisciplinary care team.

Therapists come to the table with the perspective of evidence-based practices, objective measurement, goal setting, and a plan-of-care focused approach. Those skill sets are critical in our evolving healthcare environment to improve the quality of care, increase patient satisfaction, and to reduce costs (Triple Aim concept).

Primarily my experiences and partnerships with physical therapists have been in the home health setting. Recently, I was able to experience therapy from a patient’s perspective. I put off having knee replacement surgery as long as I could, but this summer, I could not put it off any longer. I was not worried about the procedure as much as how the process was going to affect my life and job during the rehab process. What surprised me the most was how much I learned during this process.

I really did not have much experience with a total knee replacement beyond doing the start of care, medication/pain/incision care education, and the removal of the staples. I have reviewed many knee/hip replacement patient records for quality improvement but did not understand the post-op process for a total knee from the lens of a patient.

My patient journey started with a pre-op class at the hospital which was taught by a nurse and a therapist. I was thrilled to see evidence-based practices integrated into the acute and post-acute care plans. I learned not just how to perform the pre-op exercises but why they were important for the success of my rehab. The therapists said that it would be very obvious to identify who did and who did not do the pre-op exercises (that was so true). We were provided with detailed information on what to expect with therapy, evidence-based practices, goals, and hospital mile markers toward discharge. A home assessment was completed weeks prior to surgery so that needs were identified early and strategies could be in place to facilitate a good transition home.

As a patient, it was reassuring to know what was expected and planned. The planned goal for the day of surgery was to walk to the door of my room. That did not sound so bad during class – and it really was not bad at all. In fact, I did really well and was able to walk down the hall. The rehab team had a mile marker magnetic board with a tennis shoe magnet for each patient to track distances, which was a great idea for a visual to get to the ambulation goal for discharge. So I was off and running! I participated in group therapy the next morning and found it to be very beneficial. Other patients shared previous experiences or tips for doing the exercises at home. Because my therapist recommended an early discharge for me, the team worked efficiently to obtain discharge orders and make an earlier outpatient appointment.

physical therapyMy outpatient therapy experience was great. The PTs and PTAs worked hand-in-hand to adjust my therapy, attend to my medical needs, answer my many questions, and encourage me toward my goals. I watched other patients who were similar to our home health population as they progressed through their rehab. The therapists guided and encouraged these patients with a caring attitude.

This year, National Physical Therapy Month is more meaningful to me. I have a higher appreciation of what all therapists do, no matter the setting.

HHQI would like to thanks all the therapists that we’ve had the pleasure to work with over the past 10 years. We would also like to share some great resources related to expanding the role of the physical therapists within their scope of practice.

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World Heart Day is September 29, 2017

By Cynthia A. Keely, BA, RRT, LRTR, Director, Quality and Systems Improvement, Get With The Guidelines, American Heart Association/American Stroke Association

Small Changes Can Make a Big Difference

Share the Power - Sept 2017This World Heart Day, we’re asking you to share how you power your heart and inspire millions of people around the world to be heart healthy. Cardiovascular disease (CVD), which includes heart disease and stroke, is the world’s number one killer. Each year, it’s responsible for 17.5 million premature deaths, and by 2030 this is expected to rise to 23 million. But the good news is CVD can be prevented by making just a few simple daily changes, like eating well, getting more exercise, and stopping smoking. So this World Heart Day, make sure you share the power and tell the world what you and your family are doing to make a lasting difference to your health.

Fuel your heart. Move your heart. Love your heart. And share the power!

Know Your Risk

Looking after your heart starts with understanding your risk, so make sure you know all your health numbers. Visit your healthcare professional and ask for a few simple checks. Remember, knowledge is power.

Fuel Your Heart

  • Eating and drinking well gives your heart the fuel it needs for you to live your life.
  • Try not to eat so many processed and prepackaged foods which are often high in sugar and fat.
  • Cut down on sugary beverages and fruit juices – choose water or unsweetened juices instead.
  • Swap sweet, sugary treats for fresh fruit as a healthy alternative.
  • Try to eat 5 portions (about a handful each) of fruit and vegetables a day – they can be fresh, frozen, tinned or dried.
  • Keep the amount of alcohol you drink within recommended guidelines.
  • Make your own healthy school or work lunches at home.

 Move Your Heart

Staying active can help you reduce your risk of heart disease and feel great.

Aim for at least 30 minutes of moderate-intensity activity 5 times a week

  • Playing, walking, housework, dancing – they all count!
  • Be more active every day – take the stairs, walk or cycle instead of driving
  • Exercise with friends and family – you’ll be more motivated and it’s more fun!
  • Before you start any exercise plan check with a healthcare professional.
  • Download an exercise app or use a pedometer to keep track of your progress.

Love Your Heart

Stopping smoking is the single best thing you can do to improve your heart health.

  • Within two years of quitting, the risk of coronary heart disease is substantially reduced.
  • Within 15 years the risk of CVD returns to that of a non-smoker.
  • Exposure to secondhand smoke is also a cause of heart disease in non-smokers. So, by quitting you’ll not only improve your health but that of those around you.
  • If you’re having trouble stopping smoking, ask for professional advice on how to quit.
  • You can also ask your employer if they provide smoking-cessation services.

For information on how to better take care of your heart, visit the American Heart Association at today!

For more information on World Heart Day, visit the following:

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National Immunization Awareness Month – Are Adults Currently Immunized?

by Shari Levine, MPH, Information Director for Infectious Disease, Vermont Department of HealthNIPHIC

Shari LevineVaccines – for you, me and everybody.

What comes to mind when you think of vaccines? I think of babies, toddlers and pre-teens with their heads shaking NOOO when it’s time for a shot. Next to those kids are their parents and pediatricians enthusiastically nodding yes to prevention.

Adults also need vaccines to protect against several serious and sometimes deadly diseases. Every year thousands of adults in the U.S. become seriously ill and are hospitalized because of diseases that vaccines can help to prevent. Don’t wait for an outbreak to get yourself protected. Take the initiative now, and enjoy the benefits of prevention in the future.

Which vaccines do you need? 116482902

The specific vaccines you need as an adult are determined by your age, job, lifestyle, health conditions, where you travel, and which vaccines you’ve had in the past. Throughout your adult life, vaccines are recommended for:

  • Seasonal influenza (flu) (for all adults)
  • Pertussis (whooping cough) (for all adults who have not previously received the Tdap vaccine and for women during each pregnancy)
  • Tetanus and diphtheria (every 10 years following Tdap vaccine)
  • Shingles (for adults 60 years and older)
  • Pneumococcal disease (for adults 65 years and older and adults younger than 65 who have specific health conditions)

Other vaccinations you may need include those that protect against human papillomavirus (which can cause certain cancers), meningococcal disease, hepatitis B, hepatitis A, chickenpox, measles, mumps, and rubella. Call your health care provider to check your immunization records and find out what you may need.

Why should adults be vaccinated?

Most people live in a community, and spend time in close connection with family, friends and colleagues. This allows us to share more than just meals and companionship – we also share germs. Vaccines help to create an invisible barrier around your body that keeps germs from making you sick, or lessens the severity of illness if you do get sick.

What are the benefits?

The Centers for Disease Control and Prevention (CDC) collects data to evaluate the effectiveness of vaccines. Based on information gathered each year from every U.S. state, we know the following:

  • Hepatitis B vaccine lowers your risk of liver cancer.
  • Human papillomavirus (HPV) vaccine lowers your risk of cervical cancer.
  • Flu vaccine lowers your risk of flu-related heart attacks or other flu-related complications from existing health conditions like diabetes and chronic lung disease.
  • Tdap vaccine protects pregnant women and their newborns from whooping cough (pertussis).

vaccineAre vaccines safe?

Contradictory information is written in the media about the safety of vaccines, but scientific research is consistently telling us that vaccines are safe and effective. Every vaccine must go through years of testing before the Food and Drug Administration (FDA) licenses it for use. Both the CDC and FDA continue to track the safety of all licensed vaccines as long as they are recommended for use by Americans. Like all medications, some people will have side effects that are usually mild and go away in a few days. The most common side effects include soreness, redness, or swelling where the shot was given. Severe side effects – such as an allergic reaction – are very rare.

What if I have a chronic health condition?

People who have asthma, chronic obstructive pulmonary disease (COPD), diabetes and/or heart disease are at higher risk of developing serious complications from vaccine preventable diseases such as influenza and pneumonia.

What could happen if you don’t get vaccinated?

  • Each year, an average of 226,000 people is hospitalized due to influenza.
  • About 900,000 people get pneumococcal pneumonia every year, leading to as many as 400,000 hospitalizations and 19,000 deaths.
  • 850,000 to 2.2 million people suffer from chronic hepatitis B, with complications such as liver cancer.
  • In the U.S., HPV causes about 17,000 cancers in women and about 9,000 cancers in men each year. About 4,000 women die each year from cervical cancer.

Where can you get vaccinated?

Vaccines are given at low or no cost in health care provider offices, clinics and pharmacies around the country. Most insurance companies and Medicare will cover vaccination costs. The CDC recommends that you speak with your health care provider about your immunization records, and then get updated on any missing vaccines.

If you are traveling internationally, the CDC encourages you to be sure you’re up to date on all routine vaccinations, and to check on which vaccines are recommended for the places that you will be visiting. Check the travel website to find out which vaccines are recommended based on your destination.

August is National Immunization Awareness Month, which is sponsored by the National Public Health Information Coalition (NPHIC). The goal is to raise awareness about the importance of vaccinations and to encourage people to make sure they’re fully vaccinated.

Don’t Forget!

HHQI’s Immunization & Infection Prevention BPIP 2017 Updated version to be released in September.

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Guilt – The Caregiver Nemesis

by Jane Marks, Certified Dementia Practitioner, Speaker, Trainer

July 2017_Jane MarksDo you recall the children’s movie that was a big hit a couple of years ago that had the theme song with the line, “Let it go, let it go.”? Yes, the one EVERYONE was singing and that you could not get out of your head for the rest of the day after hearing it. It is now, most likely, running through you mind at this brief suggestion. Good. Hold that thought.

You see, I have been thinking about guilt. I often feel guilty. It is one of my greatest talents. I have often commented that if only someone would pay me for feeling guilty and for needless worrying, I would be a bazillionaire. As a caregiver, these two – guilt and worry – seem to be boundless and unending. It was for me as I traveled my journey as a caregiver, and it seems so for most of the caregivers with whom I interact.

In the past few months, I have read two articles on caregiving that did not give me the insight or help that I had hoped, but did give me confirmation on how challenging these two emotions can be for caregivers. In one, the author called caregiving “a crucible”. That word does not have a positive connotation for me, but I decided to look up the definition to be certain. I equate the word with the play written by Arthur Miller (once married to Marilyn Monroe, for you trivia fans out there) about the Salem witch trials.  A more general definition that I found is, “a place or occasion of severe test or trial.” That certainly describes caregiving as I know it. The second article listed the top ten emotions to be mindful of if you are a caregiver. What was the number one emotion on that list? You guessed it, our friend guilt.

CareAs I pondered the crucible comparison, it occurred to me that the emotional burden of caregiving might be the greatest burden we carry as caregivers. It may very well be our number one nemesis. Yes, caregiving can be a test or trial that is physically exhausting and financially burdensome, but the emotional burden is the one that seems nearly impossible to manage. One may find ways to get some physical rest – a family member or a neighbor might give you a time of respite. Maybe you can afford to hire some help. If funds are scarce, it may be possible to sell property or valuables. Some families may choose to take advantage of a reverse mortgage to deal with the financial burden. I am not implying these challenges are easy. In fact, these very actions themselves may induce guilt. Different families have different solutions for those physical and financial challenges but guilt seems to be a universal commonality. In my nearly 20 years of working with caregivers and learning from them, there does not seem to be a concrete method, a specific formula, to ease that particular burden.

Guilt is also an emotion that – even when our caregiving task is over – hangs on with a vengeance. Several months ago, I listened to a United States Senator speak about her caregiving journey with both her parents. Both had dementia and both had passed away within the last year. She described how her family dealt with the early recognition that something was wrong, then how, later, they made the decision that her parents could no longer remain in their home. She shared details of their last days. In a broken voice she said, “I still worry that I did not do enough – that I could have, or should have done something more.”

Guilt may also be the reason some caregivers have difficulty setting boundaries. Terry is a good example. I met Terry at a caregiving event. As she began to tell me her story, her face, her tone of voice, as well as her body language indicated how frustrated and tired she was. I tried to listen objectively. It sounded as though Terry’s mother was quite demanding and manipulative. Her medical issues were not life threatening, she had financial means, and lived in a well-respected assisted living facility. Yet Terry was spending many hours running errands and trying to appease her Mother’s constant demands and complaints. In her caregiving quest to do her best, Terry did not seem to recognize that her mother was being unreasonable. She finally said, “My husband is furious. He says I care more about my mom than I do about our marriage. I am really afraid he is going to leave me.”

I advised Terry to set some boundaries. I suggested she weigh each demand and complaint as to how serious and immediate the need was, and then balance that with her own needs. She should not cancel dinner plans out with her husband in order to go pick up some ibuprofen for her mother as she stated she had done just a few days earlier. Those kinds of demands could wait until the next morning and in fact, I pointed out that the assisted living facility probably had some ibuprofen on hand. I suggested Terry set aside one day each week to do the errands for her mother and to be very clear with her mother about that schedule. I also suggested she urge her mother to ask the assisted living staff for more assistance (like when she needed ibuprofen). These suggestions may sound obvious, but Terry was unable to see on her own that those kinds of boundaries would be helpful. Her guilt was blocking her from thinking clearly.

Recently, I presented at a caregiver conference in another state. After my presentation, among the many that came up to ask questions or to comment was Shirley. She shared that she was caring for her 94 year old father. She told me a bit about their situation and asked for some advice about a particular challenge with her father. I offered some suggestions but as I looked into her eyes I was compelled to ask, “And are you taking care of yourself Shirley?”

Her eyes filled with tears and she responded, “Not really. In fact, I feel guilty for coming here today instead of being with my father.”

My heart ached for her. “Shirley, don’t you think you are doing the very best you can to care for your father?” I asked.

“Probably not,” she answered with a shake of her head and a tear on her cheek.

I reached out and embraced her as I said, “Shirley, you came here today. You arranged for someone you trust to stay with your father. You listened and took notes as experts offered advice on caregiving, pointers on how to provide better care, as well as information on local resources. That shows me you are trying your best and one simply cannot do better than one’s best! I hope you will remember that.” Shirley smiled and hugged me back.

I believe no family caregiver wakes up and says, “I am determined that today I am going to be the worst caregiver I can possibly be!” Yes, there are days when we fail miserably. Our temper, our exhaustion, our lack of knowledge, even our simple humanness will cause us to mess up sometimes. None of us will do it perfectly all the time, but each of us is doing the very best we can at any given moment.

In many caregiving situations, you are battling a condition or illness that is not curable. Yes, Dad may rehabilitate from that stroke but he may never recover completely. The autistic child may improve and develop life skills with work and proper therapy, but may never be completely independent. Those with Alzheimer’s, ALS, COPD, renal failure, or terminal cancer will only worsen overtime. Yet, I think, somewhere deep down, we think we can fix it. But we can’t turn back the clock, we cannot stop the aging process, nor can we cure illness. It is important for caregivers to realize we are only the umbrella. We cannot stop the rain. We are merely a person trying to provide comfort, care, and love to someone who is succumbing to an illness or a condition over which we have little or no control. What we can control is how we take care of ourselves.

I am sure I did not completely assuage Shirley’s guilt. I wish I had that magic powers to erase a tired caregiver’s guilt. I also pointed out to Shirley that if she wanted to be able to provide care for her father as long as he may need it, it was imperative that she take care of herself. She need not feel guilty about that. I do know, as a reader and a writer, that words have power. It is why we become so upset with some of the things we read on social media, most particularly those political posts! Seriously, we know how words can hurt and how words can make us feel better. When someone tells us, “Good job!” or “I truly appreciate you,” it sticks with us for a while and buoys our mood and spirit. We all recall those times when someone has said something hurtful or mean. It sticks in our craw and causes us to lose sleep. When the person with dementia for whom we care asks, “Who are you?” or says, “I hate you!”, we know the pain in our heart and soul those words can render.

I hope the words written here will help you. I hope you realize that someone does appreciate your role as a caregiver and understands the many emotions you feel. You are not alone on the emotional roller coaster of caregiving.

I want to share just a few more words, by someone wiser than I, that may help you. Maureen Johnson, a New York Times best-selling author, has said, “Guilt is a weight that will crush you, whether you deserve it or not.” This weight, this guilt, will not help you be a better caregiver. It will contribute to your exhaustion and your feelings of hopelessness. Other than that, guilt is useless. I will say it one more time – you do not deserve the heavy weight of guilt because you are doing the best you can. The mere fact that you are reading this post tells me you are seeking ways to be a better caregiver. You are giving of your time and your heart to try to ease life for someone else. You can’t do better than that.

heartA few weeks ago, I heard this quote from Buddha. I think it may be my current favorite. No matter your religious or philosophical beliefs, these are good words to live by, especially if you are a caregiver. “In the end there are only three things that matter: how much you loved; how gently you lived; and how gracefully you let go of things not meant for you.” So, this guilt thing, just let it go.

You can follow Jane’s blogs and articles on and Sandwich Caring on Facebook.


Nurses can earn 3 hours of free CEs by going to HHQI University and completing the Meeting the Needs of Caregivers and Care Receivers course. This course includes watching two excellent webinars:

  • “Alzheimer’s Disease:  A New Way of Understanding for the Home Care Worker” by Jane Marks
  • “The Universal Language of Caregiving: What We Need to Know Now” by Kim Linder








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The Struggles and Rewards of Being a Caregiver to a Loved One with Alzheimer’s

by Misty Kevech, RN, MS, HHQI RN Project Coordinator

June is the National Alzheimer’s and Brain Awareness Month. The Alzheimer’s Association also celebrates June 21st as the “Longest Day” which is about love – “Love for all those affected by Alzheimer’s disease.” Alzheimer’s is the most common form of dementia.

A study just released in May by the Centers for Disease Control and Prevention (CDC) indicates that the incidence of Alzheimer’s disease is rising as well as the death rates (55% increase). The large Baby Boomer generation is one of the reasons for the increase in disease, because age is the greatest risk factor for Alzheimer’s. Additionally, the burden of caregiving falls heavily on loved ones.

As healthcare clinicians, we provide or coordinate care for patients with dementia. Many of us also are either a caregiver or know someone personally that is caring for their loved one with dementia. It hits close to home, but we really don’t know the struggles or the joys of caregiving for a person with dementia until we have walked in those shoes.

I had the pleasure of visiting with a nurse of 36 years to discuss her story of caregiving. While she was happy to share her story, she and her family wished to remain anonymous. For the sake of the story, I will refer to the nurse as Sara and to her mother as Marie.

Marie began to develop signs of dementia at about the age of 65. The disease began at a slow progression until the age of 78 when it became clear she could not be alone all day. Marie’s sister moved in to help care for her for two years prior to Marie’s husband’s death, and she stayed on for several more years. Sara and her brother worked together to make it work.

Eventually, Sara moved in with her mother when her aunt relocated to another state and enlisted the help of private caregivers and outside agencies to supplement care. In 2011, Marie developed some serious health issues which advanced her dementia, and her physician said she could no longer be left alone. Later that year, Sara had made the decision to quit her job so that she could care for her mother full-time until they had her PDA Waiver in place, noting that the cost of private caregiving is quite expensive. Sara and her brother enrolled their mother in adult daycare in an effort to provide their mom with socialization and functional activities in a safe environment which allowed some respite for the family. Marie was always happy when she returned home from the daycare, even if she couldn’t say what her day was like.

There was still a huge burden on the family in coordinating Marie’s care, locating and enrolling her into the adult day care, determining how and when to use caregivers in the home, as well as managing her finances and medical conditions. In Fall  2012, the PDA Waiver was finalized and the family began using the adult daycare and caregiving agency for Marie on a more regular basis. Unfortunately, in early 2013 Marie had another serious illness and was frequently hospitalized. This led to another sharp decline in her mental status. When these types of declines occur, there is no return to a baseline. Nevertheless, Sara decided to return to work part-time that Fall. A year later, the medical problems exacerbated, and Sara was often called away from her job when her mother would become ill at daycare and be sent to the emergency department. As Marie’s dementia and health continued to decline, she was no longer a candidate for daycare, and the painful decision to place her in a nursing home was made. She is now very settled in the dementia care unit of a local skilled facility, and her family members visit frequently.

The emotions of caregiving ranged from anger to sadness to depression. The sadness Sara and her brother experienced included the feeling of losing the mother they loved and enjoyed being around. Turning a loved one’s care over to strangers is also a very difficult thing to endure. Looking back, Sara definitely agrees that she did have symptoms of depression while she was caring for her mom, but she didn’t worry about herself because her focus was always centered on caring for her mom. She missed her own physician appointments and didn’t address any of her own health needs. We know this often happens with caregivers but don’t think it will happen to us, especially since we are healthcare clinicians.

One of the surprising aspects of Marie’s disease was the toll that medical complications took on the progress of the dementia. The result of that lengthy 2011 medical hospitalization was clostridium difficile (C.Diff) infections which led to sepsis. Marie’s memory significantly declined during those months of infection and never returned. Caregiving needs increased during this time, but because she was contagious, external caregivers were remiss to continue their services.

In some ways, as the cognitive status declined, some aspects of care became easier. No more fighting over what clothes to wear, or where this goes, or how to use that. Sara’s mother not only listened to what she said, but looked to her for any suggestions and for all the answers that her mind could not provide. Marie’s sleep patterns were fairly good, but for safety reasons, it became necessary to sleep with her, which resulted in Sara not getting a good night of sleep for years. But that was ok – it was all for her mother and it was what she wanted to do, not what she had to do.

This past fall, after recurrent urinary tract infections (UTIs), Marie’s care became too much and a decision was made to place her with the help of an excellent social worker. One of the reason’s the social worker was so attuned to the needs of people with dementia is that she was caring for her own mother with the disease. It was the right thing to do, and the right time.

Sara’s father told her before he died, “Don’t lose your mother.” Her aunt told her that no one should ever pressure their children to promise never to put their loved one in a nursing home. She understood what a hard decision it is for family to make and felt that the burden of breaking a promise just compounded that tough situation.

Sara’s mother is now in a dementia care unit in that nursing home, and she seems happy there. While her functional status has declined, she is surprisingly well cared for and safe. Marie is followed by a geriatrician who has completely stabilized her medical condition of recurrent UTIs.

Sara is now working full-time and is enjoying her work in home health care. She is getting her life back in order and regularly visits her mom. One thing she has found is that there are always little things related to her mother’s care that she needs to handle as she remains her mother’s primary caretaker. Marie enjoys manicures, pedicures, facials, walks, being read to, and laughing at everything, even if neither knows what they are laughing about!

I asked Sara what she thought was the best part of caring for her mother. She said, “It has been my honor to care for my mother, and to pay her back for everything that I put her through when I was growing up. It has made me appreciate how caring for someone so disabled can actually bring one great joy and peace of mind and heart. I felt strongly that I was meant to care for her, and that I should not run from it, but embrace it. I do not regret it for one minute and feel so grateful she is still here. I am so thankful that we are able to have our moments of recognition and happiness together for what is left of her years on earth.”

HHQI wants to thank Sara and her family for their willingness to openly share their story. We also want to thank everyone who shoulders the tough but rewarding role of being a caregiver for their loved ones. We hope that this story will help you to support patient families who are caregivers, as well as yourself or someone in your family that serves as a caregiver.

HHQI University has a course, Meeting the Needs of Caregivers and Care-Receivers, which includes excellent webinars related to Alzheimer’s disease and caregiving. Three hours of nursing CEs are available for successfully completing this course.


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