My loved one was just diagnosed with an illness/disease. What should I do next?
Breathe! Becoming stressed will not change anything or help you make good decisions. Talk with your loved one and share your feelings and concerns. Seek professional advice for what to do next, with your loved one if that is appropriate. You don’t need to walk this path alone. Look for support related to your specific situation. VPAS can help you find these resources. Call us at 540.615.5341. Make a plan. It may change along the way but it is helpful to have a starting point. The Virginia Navigator Family Caregiver Solution Center can help you find local resources. Information from the Mayo Clinic on supporting someone with a terminal condition.
How can I prepare for the future?
Consider starting a caregiver notebook to track all these important details. This can be a simple spiral bound notebook or something pre-printed. Springwell provides this option free of charge. This can seem time consuming initially but may save a lot of time in the future. Check out these Tips on Caregiving Legal Basics from Daily Caring.
Health Care and End of Life Wishes: Make sure that both you and the person you are caring for have prepared the necessary documents. Sometimes this requires difficult conversations but it is so worthwhile and having all the necessary documents completed is truly a gift to everyone involved.
Talk to your health care provider about what documents are necessary. Some documents like the ones referenced below add helpful and comforting information that is not required. Once the documents are completed, make sure that health care providers and responsible family members know where they are kept.
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care.
The Institute for Human Caring offers a lot of information and the Five Wishes document
Review your Estate Plan: A legal plan should contain a high quality power of attorney, a health care power of attorney, up to date legal documents and a plan for finances and properties. Consult your attorney for specific advice.
Financial Planning: Long-term financial planning is important for the security of the caregiver and the patient with a chronic illness. For most people it is helpful to engage the help of a local financial planner. This information from the Cleveland Clinic can help you get started.
I would like to care for my loved one at home but need some help. What are my options?
First, assess what you must do yourself and what others can do. Take some time to really think about this and be honest with yourself. Next, list all the other tasks you know of that need to be accomplished. Once you know what kind of help you need you may be able to find help from family, friends or your faith community. You may also need to hire a paid caregiver. Options include contracting with a local home care agency for home care or home health care. Home care offers non-clinical help, such as meal prep and companionship, while home health provides professional medical assistance. Another difference is that home health is generally covered by Medicare or private insurance while home care is not. Some people are more comfortable hiring a private caregiver. VPAS can help you think through these options and talk with your family. Call us at 540.615.5341.
What questions should we ask when looking for a care facility?
The decision to move to assisted living or a long-term care can be daunting. Start by having a conversation about what is important to you, your loved one, and other family who are also caregivers who will be impacted by the decision. Continuing Care Retirement Communities offer a continuum of care from assisted living to long term care while other facilities specialize in one area such as assisted living, memory care or nursing care. Daily Caring provides a comprehensive list of questions to ask when looking for an assisted living facility. A Place for Mom has some helpful suggestions for choosing a nursing care facility. You may also want to choose a geriatric care manager to help with this process.
How can I help with care from a distance?
Living far away from your loved one presents challenges but you can still be involved in your loved one’s care. The Eldercare Locator, a public service of the U.S. Administration on Aging can connect you with services by entering the zip code where your loved one lives. You can also call 1.800.677.1116.
How can I manage my job and caregiving?
Working while caregiving can be incredibly stressful yet about 60% of caregivers are employed full time (AARP Caregiving in the US 2020). Be honest with your employer and find out what benefits or accommodations are available to you as a caregiver. Some employers offer flexible work hours, paid sick days, the opportunity to telecommute, programs to help caregivers, and paid or unpaid family leave.
This article may also be helpful when caring for parents. When It's A Child's Turn to Take Care of Mom or Dad: A Caregiver Agreement May Be in Order
I know that it is important to maintain my health as a caregiver. What should I be thinking about?
You cannot give what you do not have. You cannot pour from an empty cup. We have heard these kind of statements but it is difficult to apply them to ourselves consistently. It may be helpful to think of self-care as an essential part of your role as a caregiver. There should be no guilt in caring for yourself. Make a plan to include healthy eating, physical activity, relaxation and quality sleep into your life. It won’t happen all at once and there will be days when your plan falls apart, but make a plan to change one small thing at a time. Start now.
How can I advocate for my loved one with health care providers?
Go with your loved one to their health care appointments when possible. Ask questions, write down information, and speak up for them so you can both better understand their condition and get the care and resources you need. Use “I” messages such as, when you don’t take time to answer our questions in a way that we understand, I feel like we are not getting the information we need. Before any procedure, ask these questions suggested by Daily Caring.
Do I really need it?
What are the risks?
Are there simpler safer options?
What happens if I don’t do anything?
How much does it cost?
How to be an Effective Advocate for Aging Parents may also provide some valuable information.
What can I do to make our home safer?
It is important to install and use handrails – sometimes on both sides of the stairs. Make sure all hallways, stairs, and paths are well lit and clear of unnecessary objects. Sometimes this means more lighting and often it means a different kind of light. Remove or tape all area rugs to the floor so they do not move when you walk on them. Protect against fire and related dangers. Remove clutter and be careful with pets. You may want to consult with an occupational therapist or an aging in place specialist for a home evaluation. Check out National Institute on Aging, Aging in Place: Tips on Making Home Safe and Accessible.
What can I do to manage physical and emotional stress?
It may seem backwards but moderate physical activity can actually reduce fatigue. The recommendation is 150 minutes each week and this does not need to take place in large blocks of time. You may even be able to find activities you and your loved one can do together. Physical activity can also reduce emotional stress. Other ideas involve journaling, relaxation activities, deep breathing, and getting a good night’s sleep. Consider attending a VPAS Confident Caregiver Circle for more information.
This ten minute activity for stress relief from Daily Caring or this article on journaling may be helpful.
This Caregiver Self-Assessment Questionnaire can help you look at behaviors, health risks, and ways to help you make choices that benefit both you and the person you care for.
All this paperwork is overwhelming! Where do I go for help?
Maintaining a caregiver notebook can be helpful for managing paperwork and keeping track of all the details related to your loved one’s care. This can be a simple spiral bound notebook or something pre-printed. Springwell provides this option free of charge. Commit to keeping all your documents in one place and open your mail as it comes. When you receive a document that you don’t understand, seek answers as soon as possible. Call the hospital, insurance company, VPAS, or other professionals who may have answers to the questions you have. Write down your questions in advance of your call and always note the date and time you called and who you spoke with. You may also have a friend or family member who would be happy to help you with these tasks. Remember that you don’t have to manage this alone but it is important to ask for help and to be specific about what you need.
What are some activities I can suggest for my loved one at home?
Look for activities that engage your loved one emotionally, mentally and physically. Read a book, poem or short article and talk about it. Go for a walk, step outside, or breath in fresh air from the window. Do balance or chair exercises. Reminisce and laugh together. Go through photos or boxes where you have stored items from the past. Consider making a personal memory book including photos and mementos such as report cards, awards, and meaningful greeting cards. Think about hobbies and past interests and how they could be adapted to still provide enjoyment. Daily Caring offers ideas for activities for older adults with limited mobility.
How can technology help me as a caregiver?
From talking pill organizers to social robots and internet based home monitoring systems, technology can be helpful to caregivers. Medical Alert Pendants let caregivers know when a loved one has fallen. Digital technology like smartphones, tablets and computers can be purchased that are designed to be easier to use. However, none of these are helpful is your loved one is unable or unwilling to use them. Before purchasing a device of any kind, consider exactly what you need the device to do and if you have the necessary support to maintain it. AARP offers 6 Tips for Choosing Family Caregiving Technology.
What are some tips for managing challenging behaviors?
Take a break, even if just for a moment. Take a deep breath or a short walk, turn on some music, or repeat a favorite quote or poem. Try to imagine what your loved one is feeling and take time to put yourself in their place. If possible, talk to them about the difficult situation during a time when they are not agitated. Focus your anger on the disease itself and not on the person you are caring for. It is possible that they are also angry at the disease and are unsure of how to express their feelings. Look for resources that are specific to your loved one’s condition. VPAS can help with that. Call 540.615.5341.
What are some tips for using support services?
Maintain and expect ongoing communication with service providers. State your expectations up front and ask if they are reasonable. Keep documents and paperwork organized and include notes from conversations. It is also important to recognize that organizations and service providers have limitations and may not be able to provide for everything you need. Ask them to help you problem solve or make suggestions for another service that could help. Caregiver Support from USAGOV offers tips and information to help you care for your loved one with special medical needs, including programs for family members of veterans and people with disabilities to get paid to provide care.
Resources for medication management?
Make a list of all medications, who prescribed them, the date they were started, the dosage, and the purpose for taking them. Also include over the counter supplements, creams, drops and suppositories. Medication lists are sometimes available from your provider or online applications like My Chart. Use the same pharmacy for all medications. Your pharmacist has a wealth of knowledge and can answer your questions and watch for potential problems with drug interactions. This is especially important when your loved one is seeing multiple health care providers. Make and keep a routine for taking medications. Use a calendar, notes, or a reminder on your phone to help you remember. It can also be helpful to pair taking medication with a routine activity such as brushing your teeth, making coffee, or watching the news. Use a pill organizer or consider having medications pre-packaged by the pharmacy for each day and time of day. There are a variety of innovative pill boxes including talking, locking, weekly, monthly and more. Be informed. Check out the Beers List of potentially inappropriate medications for use for older adults. Daily Caring offers 8 Tips to Avoid Harmful Drug Reactions and Over-medication in Seniors