Taking care of yourself
One of the biggest challenges for caregivers is finding the time and energy to take care of your own health. It can help to attend support groups, talk with friends, get exercise and plenty of sleep, eat well and participate in other activities to help maintain a balance. Taking care of yourself will allow you to provide better care for your loved one. Also, you may need to learn to accept help when it’s offered and ask for help when it’s needed.
Caring for the caregiver
Becoming a caregiver often sneaks up on you. You don't realize your doing it until you look back at the changes. Take strength in identifying yourself as the caregiver. You are making the best decisions you can for you and your loved one. Trust your instincts. Learning what you are good at and what you don’t do so well will help you decide when to say “no” and when to ask for help. Take pride in what you do well.
Caregivers often experience frustration, depression and stress. These emotions can hinder your ability to provide good care and eventually harm your own health. Therefore, commit to taking care of yourself in order to take better care of your loved one. Remember, dementia is a marathon, not a sprint; so take the time you need to care for yourself.
- Protect your health by getting enough rest, exercising, eating well and maintaining an active social network. Get regular respite and medical checkups.
- Watch out for signs of depression (isolation, sadness, excessive sleepiness, apathy, suicidal thoughts) and seek help quickly if you need it.
- Take charge of your life, and don't let your loved one's illness always take center stage. Caregiving should only be one aspect of your life. Be sure to get out and live your life. Schedule time for yourself regularly.
- Acknowledge where you are and work from there.
- Ask for help, and when people offer help, accept it. Make it easy for them by having specific tasks (i.e., grocery shopping, housekeeping, reading aloud, taking you to a movie). Caregiving is not a one-person job.
- Ask for financial help to pay for professional care.
- Utilize community groups that provide caregiver respite. If you are comfortable with technology, consider setting up a group calendar and email where you can post times and tasks that you need help with.
- Learn everything you can about your loved one’s condition so that you can talk comfortably with the doctors and medical staff. When using the Internet, stick with well-known medical sites. Write down questions that you can ask during appointments. Information is empowering.
- Seek support from other caregivers. There is great comfort in knowing you are not alone and that other people have been there too. Other caregivers often have great tips for you too. And just sometimes, they will make you laugh when you need it most.
Tips for dealing with your emotions
As primary caregiver, you are likely to experience a wide range of emotions. While your experiences are valid, finding ways to let go of the negative emotions will help your health and sanity.
- Feeling overwhelmed is very real and common for most people dealing with dementia. Talk to people who can offer you support – your personal network, community groups, religious organizations, medical support groups. 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 sometimes think about your own needs and feelings.
- Neurodegenerative disease can be frustrating. It can cause significant personality changes. When you are frustrated, it is important to distinguish between what is and what is not within your power to change. Frustration often arises out of trying to change an uncontrollable circumstance. You can only control how you respond.
- Anger at the situation is very normal. Feel it, but then try to either get some physical exercise or meditate so your body can relax, and your mind can clear again.
- You might experience confusion or absent-mindedness. If you are putting a great deal of emotional, physical and spiritual energy into caregiving, you don’t have much left over. Be sure to eat well and rest in order to refuel and restore your mind and body.
- Forgetting or losing items is common because your concentration level is not high while you are stressed and tired. Do not expect that you will be able to concentrate for long periods of time. Give yourself one job to do at a time and a longer period of time to complete it than you think is needed.
- Guilt that you are not doing enough haunts many caregivers. Just as there is no "perfect parent," there is no such thing as a "perfect" caregiver. No caregiver, no matter how skilled or empathic, can make dementia go away – it is progressive and incurable. "Caregiver" does not mean "healer." It's important to give yourself a break.
- Anxiety over what else you could be doing or what your loved one will do if something happens to you is also common. Know that you are doing your best with what you have. Review and update your end-of-life plans. You may not need them for many years, but it will help your anxiety to know that there is a plan in place should something happen to you.
The UCSF Osher Center for Integrative Medicine offers a Mindfulness-Based Dementia Care 8-week program specifically designed for professional and family caregivers of persons with dementia. It is also appropriate for health care providers and anyone interested in gaining a better understanding of dementia care from a mindfulness perspective. Learn how the practice of mindfulness can help you cope with the challenges and stresses of dementia care and improve the experience of the person in your care.
The UCSF Fitness, Aging, and Stress Study offers a 6-month physical activity intervention specifically designed family caregivers of persons with Alzheimer’s disease or dementia caused by another disorder. If you would like to do more physical exercise, contact the Samantha, the study coordinator, at firstname.lastname@example.org or (415) 476-3818.