Be Informed.
This brochure has been developed by Jackson Heart Clinic to give you guidance on how you can help when someone close to you has a heart condition. The cardiologists and staff understand that you can participate more in decisions about health care when you know the facts. Working with you as a partner, we can diagnose problems and start or continue treatment that will give you and/or your loved one the best possible outcome.
The information on this page is also available for download and printing for your convenience.
Click on the thumbnail to view the brochure (PDF).
What does it mean to have a heart condition?
When someone close to you has a heart condition, it means that there may be changes in your relationship as well as the possibility of loss. The degree of change depends on both the severity of the condition and whether the condition is chronic or acute. With chronic heart conditions, the timeframe is likely to be longer, with ups and downs along the way. When the condition is acute, the timeframe may be shorter (for instance, with heart surgery and recovery). The focus for chronic conditions is to avoid complications and enjoy life as much as possible. With acute conditions, such as recovery from heart surgery, there is an opportunity for better health and the prevention of additional acute episodes.
Often those with chronic heart problems have episodes of acute health issues along with the ongoing chronic illness. For caregivers, chronic conditions require a longer time commitment than acute conditions.
How can you help in the caregiver role?
Supportive relationships are among the most important factors that impact the health of a patient with a heart condition. If you are involved in the physical care and/or the emotional support of the patient, you have become a caregiver, an invaluable asset to the healthcare team. You not only help the patient, but you also help the professional healthcare team work with the patient more effectively and efficiently.
As a caregiver, you are not alone. A study by AARP and The National Alliance for Caregiving found that about 39.8 million adults in the United States have provided unpaid care to another adult in the prior 12 months. Of those, approximately 34.2 million Americans have provided such care to an adult over age 50.
What does it mean to be a caregiver for someone who has a heart condition? Your role could range from 24/7 caregiving to occasional acts of support. If you live in the same household, caregiving could involve literally everything it takes to support the patient.
If you do not live in the same home, caregiving might involve providing rides to the cardiologist’s office, coordinating in-home care, grocery shopping, exercising with the patient, or simply being available whenever a need arises.
Regardless of your particular role, keep in mind that you are really important during this time, and you can make the difference between life and death!
Caregiving can be stressful and emotionally draining, but it can also be very rewarding to be able to care for this person who is coping with a heart condition.
Assess your resources - what do you need?
For success in your caregiver role, it is important to assess your own resources as well as your own level of health. Ask the cardiologist what will be needed and make solid decisions about what you can do and what may not be possible without additional resources.
Questions to consider are:
The following paragraphs focus on typical caregiving tasks and provide tips to help during the process. Planning early for care needs is important. Using the information in this booklet, you should be able to create an overall care plan that includes the patient, healthcare
providers, family members, and others who may be active in the patient’s care.
What caregivers do.
Organize and Schedule
Much of caregiving is about organizing and scheduling. For instance, it is vital to find out where important documents are kept and have them available if needed. Examples include important phone numbers (including emergency and cardiologist), insurance papers, medical files, living will, and financial documents. In some cases, you may need to assist your patient to assure household bills are paid. Working with the patient you can find out how he/she usually handles these things and work out a plan to manage them. Whether you use a filing system, cell phone, or computer to organize, these steps can relieve some of the potential worries of both, you and the patient.
If you do not already know, find out what the patient’s usual daily schedule is like and work around that, making time for sleep, meals, exercise, and any other identifiable tasks that should be included in the plan of care. Scheduling trips to the doctor’s office and other outings takes time and energy. Try to schedule these outings when both, you and the patient, have the most energy. Also, be sure to schedule the time that you need to do things that do not involve direct care of the patient, such as household chores or shopping. When caregivers need a break to do shopping or other things, it can also involve finding temporary help for the patient while the caregiver is away. Use a calendar as a reminder for dates and times (either on paper, smart phone, or computer).
Medication Management
Most heart conditions require medication, and there may be many prescriptions needed. It can be confusing to anyone. How medications are scheduled and taken is really important to avoid emergencies. Reading the prescription instructions and then developing a schedule is an important role for caregivers because the patient may not be able to do this alone. Keep in mind how to schedule medications around meals, sleep, and other daily activities.
Your physician and pharmacist can answer questions about the medication, possible side effects, and any other questions that you may have. In addition, ask your pharmacist about the best ways to organize medications. You can also set alarms on clocks or cell phones to help you remember medications. Plastic containers to organize medications by day or time are also helpful.
Keeping all medications in the same place and easily accessible is very important. If your role as caregiver is for an extended time, you will want to make sure to get refills and throw away any outdated medications. Always let your cardiologist know if medications cannot be taken or if the patient cannot keep the medications down. Lastly, it is important to contact the cardiologist if you notice any possible side effects.
If in doubt about a medication issue, always ask.
Daily Activities
As a caregiver, you may be responsible for meals, helping the patient in and out of bed, dressing, and bathing. Additionally, helping with bladder and bowel issues and bathroom access are all part of daily routines. You may or may not have experience or be prepared for many of these tasks. Consider the following tips:
Providing three meals a day is a lot of work. Simplify by keeping meals easy, planning ahead, and cooking meals in large batches then freezing them in containers that work for the meal sizes needed. Often trusted family members, friends, and neighbors are willing to help out with care by preparing or shopping for food or sitting with the patient while you shop. Consider the local options for home grocery delivery and make sure that meals are in line with any cardiologist-ordered diet restrictions.
In addition to easy accessibility, focus on the prevention of falls and injuries. It is helpful to remove area rugs, add more lighting where needed, pick up clutter, and have needed items within easy reach for the patient. Consider installing handrails throughout the bathroom for added support. You may also want to include a bedside commode or a shower chair. If a wheelchair is needed, a ramp could be put in place to help with mobility in and out of the home.
Providing safe care for the patient and yourself is essential. As caregiver, you should be aware of proper mobility procedures to assist the patient in order to avoid injury during movement. Learning other processes that may be unfamiliar to you, such as changing a dressing or tending to a post-surgical wound, will help you provide valuable care when the need arises. Be sure to ask for help from your medical team when you are unsure of the best procedures. Don’t forget to take time for yourself to reduce stress. Refer to the list of resources in the back of this booklet to locate support organizations.
You can increase the care provided to the patient by adding other willing caregivers to your team. This will reserve your energy and help protect your health. Build a contact list of family members, church friends, and acquaintances that you can call on for specific tasks. Check with your insurance provider, sometimes your healthcare insurance will cover the costs of paid helpers.
Always encourage the patient to do whatever he/she can do on his/her own as this will build self-confidence and contribute to overall wellbeing. By helping the patient make decisions about care and everyday living, it will also make your job as caregiver easier.
Working with care providers.
The doctors and staff at Jackson Heart Clinic are here to help you in your role as caregiver. We want you to ask questions! We will gladly direct you to resources, as needed, that will help you with every step of the care process. Our goal is for the patient, while managing a heart condition whether chronic or acute, to have the highest quality of life possible.
Help us work with you as a team by asking questions…
Caring for yourself.
As rewarding as it may be, caregiving is not easy. It is often stressful and can lead to anxiety and depression. It may also cause your own health to grow worse. There are ways to minimize the downsides of caregiving. You can best help yourself with caregiving by realizing that you must take care of yourself and also understand that you cannot do all of the caregiving alone.
Consider the following:
When you are feeling the burden of caregiving rather than the rewarding feeling, it may be time for you to recharge. This means different things to each person. You most likely need to make sure that you have time for yourself, whether it is going for a walk, talking on the phone with friends, or other activities you enjoy.
Joining a support group facing similar situations will allow you to meet and talk with others who understand. You may find much strength and useful suggestions. Remember, taking care of yourself will help you in your role as caregiver and, in turn, will help the patient. Refer to the list of resources in the back of this booklet to connect to a group that may be helpful.
In Summary
Remember that we have made great strides in the diagnosis and treatment of heart disease, and this enables many patients with heart conditions to live their lives to the fullest. It is our goal to work with both, patients and their caregivers, to provide the highest level of care and achieve the best possible outcomes. We consider caregivers an important part of the care process.
References:
Everyday tips for caregiving WebMD Accessed December 10, 2018 from: https://www.webmd.com/healthy-aging/ss/slideshow-everyday-tips-for-caregivers
WebMD (2018) Caregiving After Surgery for Heart Failure Accessed 12/27/2018 from: https://www.webmd.com/heart-disease/heart-failure/aiding-in-recovery#1-2
Patient Resources:
American Heart Association
NATIONAL CENTER
7272 Greenville Ave.
Dallas, TX 75231
CUSTOMER SERVICE
1-800-AHA-USA-1
1-800-242-8721
American Heart Association Heart Caregiver Support Network:
https://supportnetwork.heart.org/s/topic/0TO4T000000TY29WAG/caregiver-heart
AARP
https://www.aarp.org/caregiving/home-care/info-2019/providing-homecare.html
WebMD (search for caregiving and heart disease) on main website:
https://www.webmd.com/
National Alliance for Caregiving
4720 Montgomery Lane, Suite 205
Bethesda, MD 20814
https://www.caregiving.org/
301-718-8444 PH
301-951-9067 FAX
info@caregiving.org