Are you caring for a sick family member, or trying to meet your own chronic disease needs? I commend you! Being a caregiver is one of the greatest and most challenging experiences you can have in the healthcare journey. Love is what seems to be the key component that keeps the caregiver going through this sometimes overwhelming and often unrewarding challenge. It is often met with confusion and fear as you walk through uncharted territories. Take heart! You are not alone, and there are resources to help you make it through while developing skills that will benefit you and those in your care.
Now more than ever, baby boomers are choosing to care for their loved ones at home. As a 62-year-old baby boomer and retired hospital chaplain, I have seen both personally and professionally the emotional and physical demands this can have on caregivers. We recently buried my mother just days shy of her 96th birthday. My sister cared for our mother for eight years. She decided to take on the responsibility as mom was becoming increasingly unable to live alone. Love kept her illness at bay and I believe is the reason my mother lived such a long life filled with fun, purpose, and unconditional love in her last and most critical years. Love is so important but there was another important component; education. Utilization of information is a key factor for optimal success in caregiving.
I have been a hospital chaplain for fourteen years. I ministered to sick and dying patients and I attempt to continue to help through Cross Bearers Consulting, servicing chronic disease patients and their families as they walk through the process of illness. In our nation today, chronic disease affects approximately 133 million Americans representing more than 40% of the total population of this country. By 2020, that number is projected to grow to an estimated 157 million. (NationalHealthCouncil.org) Caring for our loved ones is becoming a top priority in our nation, and as this demand increases, it is imperative that we educate ourselves.
Education and utilization of resources are needed at the beginning, all along the care journey, and at the end of life. Remember, information is there to guide you, especially when times get tough, and emotions run high. You will want to be ready at every turn, with resources and knowledge at your fingertips.
Here are some brief pointers that can help you achieve your goals as you are caring for your loved ones. I encourage you to continue to build on this information ongoing:
- Have fun! Have activities and talks that can bring joy and laughter into your lives. Make it fun! People love to talk about their lives and the things that brought them joy over the years, especially our seniors and elderly population. Let them talk and keep a journal. This can even help build a legacy of information to pass on to other generations. People also enjoy revisiting the things that brought them pleasure in their lives, for example dancing and listening to music. Even if they can’t totally participate in physical activities, they can still enjoy activities that help them remember the good times.
- Have the tough talks. Serious topics also have to be discussed. Finding out what the desires and concerns are now, in the short and long-term, as well as at the end of life, is imperative. This information may change over time but having a conversation ongoing is very important. If your loved one is having a hard time communicating, start with baby steps. Tough conversations need to be dealt with patiently. Ask simple but open-ended questions. Write it down. Keep talking and interacting in a positive way. Begin this process as early as you can, as information may be hard to get later due to the progression of illness and/or memory issues.
- Get your Advance Care Plan (ACP) completed. Part of the tough talk is documenting wishes for healthcare. You can get this form on your state website. If you become incapacitated and cannot make decisions for yourself, your wishes for care need to be known and documented and a person designated as your Healthcare Agent to carry out your wishes. This document is important for every adult, no matter what age or physical health condition. We never want to think about any emergency situation taking us by surprise but it does happen. Help your family members, friends, or caregivers to be prepared if you need this kind of help. A POST (Physician’s Order For Scope of Treatment) form is an advanced directive that is filled out by a physician as a doctor’s order, for the aged and those in the end stages of illness. It will follow your loved one wherever they go. Ask your Primary Care Physician (PCP) for more information about this form. A copy of your ACP document should be given to your PCP, your Healthcare Agent and taken with you on hospital visits and admissions. Keep the original in a secure place with your other important documents. And remember, this form can be revised and updated at any time. Visit my website at crossbearersconsulting.net for more information. Follow me on FaceBook for Q&A sessions on Instagram Live and Facebook Live discussing healthcare forms. Do this for yourself and for your loved ones now. Don’t wait for a crisis, illness, or emergency.
- Get information about Palliative Care. This team consists of Physician, Nurse, Social Worker or Case Manager, Chaplain and other disciplines as needed. They come to your aid no matter what your stage in the chronic disease process. They are able to provide comfort emotionally, socially, spiritually and physically as the team comes together to assess your needs and provide information that helps you make informed decisions about your care. Palliative Care is available in most hospitals and is included in the cost of your hospital care covered by your insurance. Talk to your PCP about Palliative Care resources even while you are at home.
- Take care of yourself! It is so easy to try to do it all and not ask for help. You may end up burned out if you don’t pace yourself. You can’t be a help to those you are caring for if you are not taking care of yourself. It is important to eat right, exercise if even a short daily walk, take quiet time alone, and time with friends and family. Ask your PCP what is recommended to keep you healthy. It is easy to become consumed as a caregiver. Know your limitations and don’t feel guilty about them. Doing the best you can does not mean doing what you can’t. Again, ask for help. Most care facilities have Respite Care available to take your loved one for a few days and give you some quality alone time. If you have this option, please use it.
- Join support groups. Use the resources within your community to stay connected and engaged to learn about things that can help you. Stay abreast of the new information, technology, insurance updates, money and time-saving ideas that are out there for your benefit and the benefit of your loved one. You are not alone! There is a wealth of information at your fingertips.
- Get spiritual support. Talk with someone about your beliefs and connect with your spiritual leaders in the community. Ask questions about what this illness means to you, your loved one, your family. This interaction can address these questions: What is the meaning of life? Is God there for me and my loved one? How do I know? How do I deal with trials that come up in my life? What support systems do I have? Who can I trust? These and many other questions can be handled with the support of a spiritual counselor, pastor, or chaplain. Ask your church, your doctor, or friends for help in this area.
There is so much more information out there. I also recommend these books on the topic and contact me at my website below or email me with any questions:
- Care for the Caregiver: Comfort and Encouragement for the Journey by Cynthia Hill
- Hard Choices for Loving People by Hank Dunn