Information and resources that support your role in caring for a loved one.

Editor’s note: The Caregiving Chronicles blog has partnered with Century Health Systems to bring additional expert information and advice to the MetroWest caregivers we strive to serve at CaregivingMetroWest.org. Century Health Systems, the parent corporation of Distinguished Care Options and the Natick Visiting Nurse Association, has allowed Caregiving Chronicles to get some valuable insight from its staff for our ongoing series of Q&A sessions with caregiving experts. 

In this entry, we discuss what new caregivers need to know with a crash course in caregiving. We’ll cover a wide variety of issues and concerns to consider and how to be prepared if you are suddenly thrust into the role of a caregiver for a loved one. Providing insight is Judith Boyko, MBA, MS, RN, who has served as the CEO of Century Health Systems since it was established in 2001.

Boyko holds a Bachelor of Science degree in Nursing from the University of Pittsburgh, a Master of Science in Public Health from the University of Massachusetts, Amherst and a Master of Business Administration from Clark University. She has been recognized by the Home & Health Care Association of Massachusetts as Manager of the Year in 1997 and received the Deborah Blumer Community Health Leader Award from the MetroWest Community Health Care Foundation in 2007. She can be reached at info@natickvna.org or 508-651-1786.

CAREGIVING METROWEST: What is the most important advice you would give to someone suddenly thrust into a caregiving role?
Take some time to care for yourself as you prepare to take on this role. Consider how you can best meet your own needs while still providing care to a loved one. Caregivers should not feel that their personal health (both physical and mental) needs to be secondary to the health of their loved one. And, you need to coordinate your work and personal responsibilities with your loved one’s direct care, attendance at medical/dental appointments, and need for socialization.

CGMW: What should they know about the caregiving journey they are embarking on?
 Know that there are lots of resources available to a “new” caregiver, including other people who can be involved in the care, written materials to give you helpful advice, and blogs and websites like “Caregiving MetroWest,” to help guide you on the journey.

CGMW: What is the first thing you should do once you know you will be caring for a loved one?
 Let others in your support system, e.g. family members, neighbors, friends, co-workers, etc., know about your new role and responsibilities. This will allow them to provide you with extra support as you take on this caregiving role. They may be able to offer advice from personal experience, as well as extra physical help, should you need it at some point.

CGMW: What are some good resources or places to reach out to for help?
Your local Area Agency on Aging, e.g. BayPath Elder Services; town senior centers; area Visiting Nurse Associations; private duty home care agencies; and hospital-affiliated programs and services are places to turn to for help and advice. Social Workers in these organizations are very knowledgeable regarding resources that can assist you in your caregiving.

CGMW: If you know it’s possible you could have to care for a loved one at some point, what should you do to prepare before that situation arises to be ready?
Seek out information from various sources, e.g. websites, libraries, Area Agencies on Aging, local home care organizations, etc. regarding services that are available to help in caregiving. Services might include home health care, meals on wheels, special transportation, assistance in securing needed supplies and medications, etc. It helps to have resources identified and even contacted prior to assuming your caregiving role. Prior planning aids in smooth transitions, too, from hospital or long-term care facility to home, or even if a loved one is moving to be closer to you.

CGMW: When a loved one is sick or injured, it can be difficult to think of doing anything but trying to help them. But why is it important for caregivers to take care of themselves and what are some ways to do that?
 If you don’t care for yourself, you will not be able to effectively care for another. Caregiver burnout   results in not only less effective care to a loved one, but also poor physical and emotional health for the caregiver. Make sure you take some time away from caregiving; arrange for extra help so that you can enjoy doing something relaxing or enjoyable for yourself, e.g. a meal out with a friend, a visit with grandchildren, attending a play or watching a movie, visiting a museum, or even just sitting and reading. You may be someone who goes to exercise classes or practices yoga or meditation; if so, build that activity into your caregiving week. And, make sure you eat well – stick to a healthy diet. Get adequate sleep at night; sneak in a nap if possible, if that helps energize you.

CGMW: Taking care of a loved one can drastically change the nature of the relationship you may have had with them. How should you navigate those changing dynamics?
 It often helps to have a frank discussion with your loved one, letting them know that you want to be able to provide them with needed care and assistance and that you want your loved one’s concerns, opinions, ideas, and feelings to be addressed – along with your own. That this is a journey you are taking together. You need to be open and honest with one another when it comes to feelings around this changing relationship. This is especially true when a child becomes the caregiver to a parent. It is sometimes helpful to seek out some professional advice as well, perhaps from a social worker or therapist.

CGMW: Caregiving can be a time-consuming and demanding task. How can you manage to find a healthy balance with that role and your other responsibilities or commitments to work, family and friends?
 It is important to build in time for yourself, for work, for family and friends, etc. This helps prevent caregiver burnout. Make sure you have weekly schedules established, including any time needed for work, other family and friends, or other commitments you have; then, utilize other resources that can free you up from day-to-day caregiving; e.g. home health care services, meal on wheels, other family, neighbors or friends, etc. Learn to ask for help in advance of when you need it. People are more willing to assist you if you can give them specific dates, times and responsibilities ahead of schedule.

CGMW: Why is it important to not try to do it all yourself, and instead ask for help and find support? How do you reach out for help and what are some of the support options available?
In some cases, it is more effective to ask for help and support, rather than try to do everything yourself. This is true, for instance, if a loved one has specific needs that require professional training and experience. For example, if someone has had a stroke or has had any orthopedic surgery, it would be best to involve rehabilitation therapists, e.g. physical, occupational and/or speech. It isn’t safe or best practice to try lifting, moving, or exercising a loved one unless you have had some instruction in proper techniques. Again, your area Visiting Nurse Association or other home care organization is able to provide this service, along with many others that can assist you. Calling your local Area Agency on Aging can also lead you to available support options in your community.

CGMW: What can you do to learn about the health conditions your loved one is dealing with?

BOYKO: Seek out information from various sources: library resources, websites (CDC, WebMD, etc.) your loved one’s physician, your local Visiting Nurse Association, the area hospital, etc. It is also helpful to talk with your loved one, to determine their level of knowledge about any health conditions they may have. Any lack of needed knowledge on the part of your loved one should be addressed through discussion with your loved one’s physician, any other health care providers caring for your loved one and/or other appropriate resources.

CGMW: What legal documents should you have in order to care for a loved one and what should you know about your rights as a caregiver and your loved one’s rights as a patient?

BOYKO: It is helpful for caregivers to have both health and legal and financial Powers of Attorney for a loved one. These documents are helpful when needing to speak with your loved one’s health care providers, lawyers, accountants and others who are involved with your loved one’s affairs. Often, if there are other family members in addition to the primary caregiver, then these legal appointments can be shared; one person can act on health affairs when the loved one is not capable and another person can assume responsibility for legal and financial affairs under similar circumstances. These Powers of Attorney protect both you – the caregiver – and your loved one.

CGMW: How can you find out about the care options that may be available to your loved one and the costs involved?

BOYKO: A good first connection to make is your Area Agency on Aging, which can assist you when exploring care options for your loved one. They can refer you to a variety of resources, including home health care agencies, skilled nursing and long-term care facilities, elder housing units and assisted living residences, etc. You can contact these resources, who can share their service delivery capabilities, their costs, the sources of payment/financial coverage for their services, and any application or admission requirements. Often, facilities will offer you an on-site visit – sometimes even a short stay for your loved one – to allow for real-time assessment of the facility’s environment, services and staff.

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