Caregiver Well-Being

I think my advice for other caregivers would be – you can easily get lost. To family and friends, I’d say, ‘Take care of the caregiver.’ Don’t worry about the patient, they’re taken care of. Take care of the caregiver.
from "Lowering a Child," in hear/say

Two of the biggest challenges for caregivers are finding the time and the energy to take care of your health. As a caregiver, you may feel you need to put your own needs and desires aside in order to meet the challenges of providing care to someone with dementia. You may feel guilty or selfish if you prioritize your own needs, or you may be so overwhelmed that you cannot find the time to care for yourself.

Scientific research has taught us that the stresses of caring for a person with dementia can lead to poor health outcomes for caregivers. Many caregivers suffer from depression and anxiety. They may delay or neglect treatment of their own health conditions. Self-care is crucial for preventing future health issues. By taking better care of themselves, caregivers may find they are able to provide better care for their loved one. Being a caregiver doesn’t mean the person has to sacrifice their own health and well-being.

Here are some strategies designed to help reduce the stress and burden of caregiving and foster effective coping, which may protect your health and well-being.

Tips for Caregivers

  • Respite (taking a break) is essential for caregivers. Dementia is a marathon, not a sprint. People with dementia can live for years with their illness, so take the time you need to care for yourself.
  • Try not to let your loved one’s illness always take center stage. Caregiving can be one of many aspects of your life. Schedule time for yourself regularly; it may be necessary to have help caring for your loved one to make this happen.
Yoga saved my life.
Wife Caregiver
  • Get exercise. There may be steps to take and arrangements to make in order for you to engage or re-engage in healthy activities. Getting to an exercise class, the golf course, or a hike with friends may necessitate finding alternative care for your loved one. Collaborate with your team to solve problems and explore ways to incorporate healthy activities into your daily life.
  • Get enough sleep. Prolonged disruption in your sleep can impact your overall health and well-being. Explore the reasons and causes for sleep disruption: are you lying awake, worried, and anxious? Is your loved one waking you up? Consider realistic strategies that may improve the situation, such as learning about the principles of good sleep hygiene, discussing the use of a mild sleeping medication for you or your loved one, and taking steps to reduce your worry and anxiety.
  • Get regular medical checkups. Ensure you have a healthcare provider (physician or nurse practitioner) that you trust. Confide in them and tell them you are a caregiver and what that means for you. Make a point of getting a yearly physical evaluation to identify any medical issues.
  • Stay socially connected with people you enjoy being with. Many caregivers are at risk of feeling lonely and isolated due to the demands of their caregiving responsibilities.
  • Watch out for signs of depression (sadness, excessive worrying, sleeping too much or not sleeping enough, lack of interest in activities you used to enjoy, and suicidal thoughts). Seek help quickly if you need it. Professional counseling and treatment may be necessary. At any time of the day or night, you can call (toll-free) the Alzheimer’s Association 24/7 Hotline at 1.800.272.3900, a service to provide education and support to people with memory loss, caregivers, healthcare professionals, and the public.
  • Ask for help. When people offer help, accept it. Remember, caregiving is not a one-person job. Getting help with caregiving does not mean you are failing as a caregiver: a team approach to dementia care is absolutely essential. Create a list of specific tasks you would like help with (e.g., grocery shopping, housekeeping, taking your loved one to a movie).
I realize, looking back, how many times people offered [to help]. People want to help but don’t know how.
from "Lowering a Child," in hear/say
  • Consider setting up an online care community site to help you ask for assistance, as well as manage your available friends and family. You can post times and tasks that you need help with, as well as provide updates on care for your family and friends. If you aren’t comfortable with technology, consider finding someone (such as a family member, neighbor, or friend) who can manage the calendar on your behalf. Examples include: Lotsa Helping Hands and Caring Bridge.
  • Explore the mechanisms for financial assistance you may be eligible for to help cover the costs of resources and services you need. Examples include short-term respite grants to pay for hired help, overnight care, or attendance at day programs (offered by the Alzheimer’s Association, Family Caregiver Alliance, and Hilarity for Charity). Read your loved one’s insurance policy to see if it covers assistance with caregiving. If your loved one has served in the military, he/she may qualify for benefits through the Veteran’s Administration.
  • Learn everything you can about your loved one’s illness so that you can communicate comfortably with healthcare providers and can prepare for the future. When using the internet, stick with well-established medical sites from reputable government or academic centers, such as this one.
  • Seek support and information from other caregivers. There can be great comfort in knowing you are not alone and that others have had similar experiences to yours. Fellow caregivers often have great tips and advice. And sometimes, they will make you laugh when you need it most. Support groups (in-person, online, and telephone) are a great way to make these connections. In addition to support groups, there are books and videos about caregiving.
  • Create a team. Your team may include healthcare providers, family, friends, neighbors, members of your religious community, and others. A good team should be able to provide necessary emotional support, guidance, help with decision-making, and respite. You may consider hiring a professional Care Manager who can assist you in creating a care plan and locating needed services. The Alzheimer’s Association offers a 24/7 telephone line, staffed by Information Specialists and Care Consultants, who can provide you with information and emotional support: 1.800.272.3900.
  • Learn about the different options for providing care. Knowing your options is an important step in facing your future. It is helpful to know what your loved one’s insurance plan will and won’t cover. Understanding the different levels of care (for example, home care, assisted living, memory care) can provide you with the support needed to find a balance between caring for your loved one and caring for yourself.

Your Emotions

Caregiving can elicit many emotional responses. Feeling overwhelmed, frustrated, impatient, sad, and angry are just some of the emotions you may experience as a caregiver. Caregivers also experience happiness, satisfaction, and contentment. While negative emotions are common, identifying effective strategies to manage them can significantly contribute to preserving your health and well-being. Below are some suggestions for dealing with negative emotions that we hope will lead to effective coping.

Consider exploring the topics at HelpGuide.

  • Feeling overwhelmed is very common for most caregivers. Talk to people who can offer you support, such as your personal network of friends and family, community groups, religious organizations, and your loved one’s medical team. Give yourself respite by asking or hiring someone to relieve you for a few hours or a few days at a time. You are not selfish to think about your own needs and feelings.
  • It can be frustrating to care for someone with dementia. When you are frustrated, it is important to distinguish between what is and what is not within your power to change.
  • Anger at the situation is very normal. Feel it, breathe slowly and deeply while counting to 10, and then try to engage in some physical exercise or other stress-relieving activities, such as meditation. Meditation helps keep your body relaxed and your mind calm. If you are experiencing prolonged anger, it is vital to seek professional help, as well as find ways to obtain regular respite (a break from caregiving).
I realized that even when we are together, I still feel lonely.
husband caregiver
  • Many caregivers experience loneliness and isolation when it becomes difficult to take time away from caregiving. Friends and family may drift away or not know how to help you. It is vital to strategize ways to take a break from caregiving so that you can spend quality time with others.
  • Guilt that you are not doing enough haunts many caregivers. It can be difficult to be responsible for decisions that are important to another’s welfare. There is no such thing as a “perfect” caregiver. No caregiver, no matter how skilled or empathic, can make dementia go away, as it is a progressive illness. Acknowledging all the things you are doing for your loved one is an effective way to quiet the feeling that you should be doing more.
  • Anxiety and worry are common. Try to narrow down exactly what is causing you to feel anxious. For instance, are you worried about protecting financial assets? Are you worried during the night that your loved one might wake up and leave the house? Are you worried about your physical and emotional health? Knowing the source of your anxiety can help you identify specific strategies for getting yourself to a less anxious space. Review and update your end-of-life plans. You may not need them for many years, but it may help your anxiety to know that there is a plan in place should something happen to you. Figure out what strategies work for you in dealing with anxiety, for example, exercise, meditation, respite, etc.
I think it’s important to note that I’ve been able to draw a lot of silver linings from this experience.
from "At the Bottom of It Is Love," in hear/say
Caregiving can be profoundly meaningful. It provides a sense of purpose. It can be very gratifying.
from "Valuing Underappreciated Assets," in hear/say