Guidance From Experts in Chronic Disease Care
Chronic Disease: Caregiving with Confidence
Nearly 30 million people in the United states provide caregiving to someone who is 50 years old or older. Nearly half of those receiving care are living with Alzheimer’s disease or dementia. Others are living with heart disease, diabetes, Chronic Obstructive Pulmonary Disease (COPD), Parkinson’s disease, or another chronic condition.
Caring for a spouse, parent of loved one who has a chronic illness can be stressful and overwhelming. Learning about your loved one’s condition can help you prepare for the challenges ahead and reduce the risk of complications.
Heart Disease in Florida
Heart disease consists of a variety of conditions that compromise heart health and function. The most common type of heart disease in the U.S. is coronary artery disease, a chronic condition that can lead to heart attack and stroke.
In Florida, more than 10% of adults aged 65+ are living with some form of heart disease, making it one of the most prevalent illnesses.
Your loved one will likely need to make long-term lifestyle changes to reduce the risk of heart attack and stroke that comes with heart disease. Diet and exercise changes can slow disease progression, alleviate symptoms, prevent future health problems and improve quality of life.
Take a look at some typical lifestyle changes and talk with your loved one’s doctor if you see any gaps in the treatment plan.
- Compliance with “doctor’s orders,” from stopping smoking to taking medications as prescribed
- Smoking cessation to lower the risk of stroke
- Exercise to increase energy and strength
- Weight loss therapies
- Diet low in saturated and trans fats, cholesterol and salt
- Limited alcohol
- Vaccines to help prevent infections that can cause complications and hospitalizations
Get The Practical Guide For Managing Heart Disease
If you’re caring for a loved one who has heart disease, you already know how serious the condition is. But you may not know enough to feel confident in your caregiving abilities. Take advantage of this free guide to prepare for the challenges.
Symptom & Medication Management
Frequent assessment of symptoms is recommended by Florida cardiologists for the management of heart disease at home. This can help inform minor adjustments to medications to prevent symptoms from worsening. The American Heart Association, for example, offers a Self-Check Plan for management of heart failure, a chronic illness that requires close monitoring and daily assessment of symptoms
Heart Attack Preparedness
First, make sure you understand heart attack symptoms. Many people associate chest pain with heart attack, but chest pain only occurs about a third of the time. Other symptoms are less well known. A recent study by the CDC revealed that only 27% of people knew all the major symptoms of heart attack in Florida. In addition to chest pain or pressure, symptoms to be aware of are:
- Shortness of breath
- Lightheadedness, dizziness or fainting
- Discomfort in the arms, back, neck, jaw or upper stomach
- Cold sweats
- Nausea or vomiting
Don’t let uncertainty about symptoms stop you from calling for help. When in doubt, it’s best to call 911.
Diabetes in Florida
More than 2.4 million people in Florida are living with diabetes and about 20% of them are over the age of 65. Diabetes has resulted in more trips to the emergency room for people aged 45 to 64 than for any other age group. The rate of ER visits for those 75 and older has also increased more than for any other group.
The body uses blood glucose (blood sugar) from the food we eat for energy. Natural insulin made by the pancreas moves glucose from the blood stream to our cells where it’s needed. If your body doesn’t make enough insulin, or your body doesn’t process insulin properly, glucose in the blood rises too high, and diabetes develops. Diabetes can’t be cured, but it can be well managed.
As a caregiver for a parent, spouse or loved one with diabetes, you know that blood glucose control is of primary importance, but maintaining it can be easier said than done.
As with heart disease, your loved one will likely need to make some lifestyle changes. It can help if you make the changes, too—eating healthier and exercising together, for example. Don’t feel like either of you has to make sweeping changes all at once. Set small goals like cooking a new low-carb dish this week.
If your loved one takes medication to control blood glucose, make sure you both understand the way it works and how it’s intended to help. Help your loved one remember to take medication by organizing a pill box and keeping supplies in easy view. It can also help to pair taking medication with an existing routine such as teeth brushing.
Diabetes Diet Tips
- Avoid skipping meals, especially breakfast
- Eat at regular times spaced out evenly every day
- Understand how what you eat and when you eat it affects blood glucose (especially on mealtime insulin)
COPD in Florida
Chronic Obstructive Pulmonary Disease (COPD) spans breathing conditions that include emphysema and chronic bronchitis. It’s more common in those who are 65 years old and older than in younger age groups.
If your loved one is living with COPD, the lung’s airways are inflamed, and airflow is blocked. The body doesn’t get enough oxygen, so it’s hard to breathe. Your loved one may have a tight feeling in the chest and a chronic cough. For more than 50% of those with COPD, the condition makes it more difficult to get a good night’s sleep.
While the heat and pollen growth can have negative effects on pulmonary function, Florida’s low altitude make breathing easier for those with COPD. Plus, Florida hospitals rank among the best for treating COPD, according to the U.S. News & World Report, including AdventHealth in Orlando, FL.
According to the Lung Institute, Florida is often ranked as one of the best places to live if you have COPD. Factors such as low pollution, sprawling metropolitan areas, and the Florida Clean Air Act, make Florida’s air some of the cleanest in the country.
As with heart disease, quitting smoking is a key lifestyle change for your loved one to make. Some people find relief from COPD symptoms with smoking cessation alone and don’t need medication. Battling a nicotine addiction isn’t easy, but nicotine replacement therapy, counseling and medicine is available to help.
If your loved one doesn’t smoke or quitting doesn’t bring enough relief from COPD symptoms, the doctor may prescribe bronchodilator medication given through an inhaler. Oral steroids may also be prescribed in short courses. For those with moderate to severe COPD, oxygen therapy or pulmonary rehabilitation may be suggested. Newer biologic medications may also be explored if symptoms can’t be managed through traditional approaches. Biologics help stop inflammation by targeted specific cells in the body.
As with other chronic conditions, a great way to help your loved one is to participate in appointments with the doctor. Arrive prepared with notes about symptoms, how current treatment is going, and any questions either of you have.
Parkinson’s Disease in Florida
If the parent, spouse or loved one you’re caring for has Parkinson’s disease, the level of dopamine in the brain is very low because the nerve cells (neurons) in the brain that produce them have been damaged. The exact cause of the damage isn’t yet know, but the condition can still be treated effectively.
What’s known is that Parkinson’s disease progresses through these five stages:
- Stage One: Movement symptoms such as tremor are mild and only affect one side of the body. Daily activities aren’t affected.
- Stage Two: Tremor and rigidity get worse and affect both sides of the body. Daily activities are affected.
- Stage Three: Movement slows, and there is a loss of balance. Falls are more likely, and daily activities such as dressing and eating are affected seriously.
- Stage Four: Symptoms are severe, and assistance is needed with walking. It’s no longer safe to live alone.
- Stage Five: Standing and walking may no longer be possible, and 24-hour nursing supervision is needed. Delusions and hallucinations may occur.
Different doctors may use different scales to help determine the stage of progression your loved one is in over time. The stage will help inform treatment decisions. Ask the doctor to explain the scale being used so you and your loved one can track.
Since no two Parkinson’s diagnoses are the same, it’s important to ask the doctor the right questions to plan for your long-term care.
Many medications have proven effective in helping control symptoms. Lifestyle changes around healthy eating and exercise may also be recommended. And some people benefit from alternative therapy programs in addition to traditional treatment. These can include massage, yoga and meditation. (Always ask the doctor before your loved one begins an alternative therapy.) In later stages, a surgical procedure called “Deep Brain Stimulation” (DBS) may be an option.
Helping Prevent Falls with Parkinson’s Disease
- Get rid of throw rugs
- Keep walkways clear of cords and clutter
- Light stairways and halls amply
- Put grab bars in the bathroom
A 2019 study indicated the state of Florida had the highest age-, race-, and sex-adjusted prevalence of Parkinson disease among Medicare beneficiaries in the US along with socio-demographic disparities in both care and outcomes.
Florida is also home to The University of Florida Health Parkinson’s Foundation Center of Excellence and offers world-renowned treatments and clinical trials for Parkinson’s disease and other movement disorders.
Alzheimer’s Disease & Dementia in Florida
More than half a million people in Florida are living with Alzheimer’s disease, the single most common cause of dementia. In the next 10 years, Florida is projected to be home to 720,000 residents with Alzheimer’s disease.
Dementia is a disease that causes damage to the brain. The impairment this causes creates confusion that can be baffling to the person and ultimately exhausting to the caregiver. In addition, it triggers a litany of other behaviors that can be distressing for both.
Understanding common Alzheimer’s and dementia symptoms and behaviors will help you care for your loved one in the home or in an setting. Strategies are available to help reduce stress, agitation, depression and isolation, and other confusing behaviors that can attend the onset of memory loss.
Caregiver Support
Caregivers need care, too. You’re not being selfish when you take a break to take care of other things—including yourself. Think of helping manage a chronic disease as a marathon, not a sprint.
Consider joining a community or faith-based support group to help you through the hard times. Some caregivers also benefit from professional counseling.
It can help to understand what causes caregiver burnout and make adjustments if you’re getting yourself into dangerous territory. One cause is sometimes referred to as “role confusion.” This means you are having trouble separating your role as a caregiver from your other roles in life such as a mom, wife or professional.
Stress Relief for Caregivers
- Make a time to connect with friends
- Do something you enjoy once a day—reading, playing music, trying a new recipe
- Start a journal to express your feelings
- Try an adult coloring book to relax
Symptoms of Caregiver Burnout
- Feelings of hopelessness or helplessness
- Loss of interest in activities you enjoy
- Social withdrawal
- More frequent illness
- Sleep problems
- Irritability
How To Avoid Caregiver Burnout
- Join a caregiver support group
- Set realistic goals for how much you can do
- Consider respite care to fill the gap
- Accept that with a chronic illness, the time may come for assisted living
- Make time for yourself
Caregivers also often come to the role with unrealistic expectations. They’re hurt and surprised when their efforts aren’t appreciated or don’t seem to pay off. They feel strapped for money and time. They’re frustrated by the weight of demands from their loved one or other family members. All of these feelings are common, and it is best to ask for help coping with them.
Don’t wait until you reach caregiver burnout to get the help you need. In-person and online support groups are available, as well as respite care services from senior living communities in Florida.
If your loved one’s needs become more than you can fulfill, and professional care becomes necessary, that’s not a failure on your part. It’s simply part of the progression of chronic disease. This is an important thing to recognize so you can think clearly about what’s best for you and your loved one.
Get The Practical Guide For Managing Heart Disease
If you’re caring for a loved one who has heart disease, you already know how serious the condition is. But you may not know enough to feel confident in your caregiving abilities. Take advantage of this free guide to prepare for the challenges.
Florida Resources for Caregiver Support
Florida Department of Elder Affairs
800-955-8770
Aging and Disability Resource Centers (ADRCs)
800-96 ELDER (800-963-5337)
AARP Caregiving Support Line
877-333-5885
National Center for Chronic Disease Prevention and Health Promotion
800-CDC-INFO (800-232-4636)
Alzheimer’s & Dementia
Alzheimer’s and Dementia Resource Center
407-436-7750
Byrd Alzheimer’s Center and Research Institute
813-396-0606
Alzheimer’s Association – Central and North Florida Chapter
800-272-3900
Alzheimer’s Association – Southeast Florida Chapter
800-272-3900
Heart Disease
American Heart Association
800-AHA-USA-1 (800-242-8721)
American Stroke Association
800-AHA-USA-1 (800-242-8721)
National Heart, Lung, and Blood Institute
301-592-8573
American Heart Association Online Support Network
800-AHA-USA-1 (800-242-8721)
COPD
COPD Foundation
866-731-COPD (2673)
American Lung Association
800-LUNG-USA
Parkinson’s Disease
Parkinson’s Foundation Florida
800-4PD-INFO (473-4636)
American Parkinson’s Disease Association – South Florida
800-223-2732
The Parkinson Association of Central Florida
321-348-7223
Sources
Caregiver Statistics: Demographics. Family Caregiver Alliance. https://www.caregiver.org/caregiver-statistics-demographics
What Is Diabetes? National Institute of Diabetes and Digestive and Kidney Diseases. https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes
2017 Florida Diabetes Report. Florida Health. https://www.floridahealth.gov/%5C/provider-and-partner-resources/dac/_documents/dac-report-january2017.pdf
8 Tips for Caregivers. American Diabetes Association. https://diabetes.org/healthy-living/loved-ones-caregivers
7 Tips on Taking Medications. American Diabetes Association. https://www.diabetesforecast.org/2012/mar/7-tips-on-taking-medications.html
Dining on Time. American Diabetes Association. https://www.diabetes.org/blog/what-can-i-eat
Basics About COPD. Centers for Disease Control and Prevention. https://www.cdc.gov/copd/basics-about.html
Management of insomnia in patients with chronic obstructive pulmonary disease. US National Library of Medicine National Institutes of Health. https://www.ncbi.nlm.nih.gov/pubmed/12558460
COPD Diagnosis. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/copd/diagnosis-treatment/drc-20353685
Chronic obstructive pulmonary disease: New treatments for COPD. Thorax. BMJ. https://thorax.bmj.com/content/58/9/803
FAQ for Caregivers. COPD Foundation. https://www.copdfoundation.org/Learn-More/I-am-a-Caregiver/FAQ-for-Caregivers.aspx
What Is Parkinson’s? Parkinson’s Foundation. https://parkinson.org/understanding-parkinsons/what-is-parkinsons
Stages of Parkinson’s. Parkinson’s Foundation. https://parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Stages-of-Parkinsons
Parkinson’s Disease. National Institute on Aging. https://www.nia.nih.gov/health/parkinsons-disease
State-level prevalence, health service use, and spending vary widely among Medicare beneficiaries with Parkinson disease. npj Parkinson’s Disease. https://www.nature.com/articles/s41531-019-0074-8
Parkinson’s Disease: Preventing Falls & Maintaining Balance. https://my.clevelandclinic.org/health/diseases/9390-parkinsons-disease-preventing-falls–maintaining-balance
Get The Practical Guide For Managing Heart Disease
If you’re caring for a loved one who has heart disease, you already know how serious the condition is. But you may not know enough to feel confident in your caregiving abilities. Take advantage of this free guide to prepare for the challenges.