Alzheimer’s and Dementia Care: Help for Family Caregivers
Getting the help you need
The demands of caregiving can be exhausting and overwhelming. But there are steps you can take to rein in stress and regain a sense of balance, joy, and hope in your life.
While caring for a loved one can be very rewarding, it also involves many stressors. And since caregiving is often a long-term challenge, the emotional impact can snowball over time. You may face years or even decades of caregiving responsibilities. It can be particularly disheartening if you feel that you’re in over your head, if there’s no hope that your family member will get better, or if, despite your best efforts, their condition is gradually deteriorating.
If the stress of caregiving is left unchecked, it can take a toll on your health, relationships, and state of mind—eventually leading to burnout, a state of emotional, mental, and physical exhaustion. And when you get to that point, both you and the person you’re caring for suffer.
That’s why taking care of yourself isn’t a luxury, it’s a necessity. Cultivating your own emotional and physical well-being is just as important as making sure your family member gets to their doctor’s appointment or takes their medication on time.
Learning to recognize the signs of caregiver stress and burnout is important, so you can take immediate action to prevent things from becoming worse and start improving the situation for both you and the person you're caring for.
While caring for a loved one will never be stress-free, the following tips can help you to lighten the load, avoid the symptoms of caregiver burnout, and find more balance in your life.
Feeling powerless is the number one contributor to burnout and depression. And it’s an easy trap to fall into as a caregiver, especially if you feel stuck in a role you didn’t expect or helpless to change things for the better. But no matter the situation, you aren’t powerless. This is especially true when it comes to your state of mind. You can’t always get the extra time, money, or physical assistance you’d like, but you can always get more happiness and hope.
Practice acceptance. When faced with the unfairness of a loved one's illness or the burden of caregiving, there's often a need to make sense of the situation and ask “Why?” But you can spend a tremendous amount of energy dwelling on things you can't change and for which there are no clear answers. And at the end of the day, you won't feel any better. Try to avoid the emotional trap of feeling sorry for yourself or searching for someone to blame.
Embrace your caregiving choice. Acknowledge that, despite any resentments or burdens you feel, you have made a conscious choice to provide care. Focus on the positive reasons behind that choice. Perhaps you provide care to repay your parent for the care they gave you growing up. Or maybe it’s because of your values or the example you want to set for your children. These deep, meaningful motivations can help sustain you through difficult times.
Look for the silver lining. Think about the ways caregiving has made you stronger or how it's brought you closer to the person you're taking care of or to other family members.
Don't let caregiving take over your life. Since it's easier to accept a difficult situation when there are other areas of your life that are rewarding, it's important not to let caregiving take over your whole existence. Invest in things that give you meaning and purpose whether it's your family, church, a favorite hobby, or your career.
Focus on the things you can control. You can’t wish for more hours in the day or force your brother to help out more. Rather than stressing out over things you can’t control, focus on how you choose to react to problems.
Celebrate the small victories. If you start to feel discouraged, remind yourself that all your efforts matter. You don’t have to cure your loved one’s illness to make a difference. Don’t underestimate the importance of making your loved one feel more safe, comfortable, and loved!
Feeling appreciated can go a long way toward not only accepting a stressful situation, but enjoying life more. Studies show that caregivers who feel appreciated experience greater physical and emotional health. Caregiving actually makes them happier and healthier, despite its demands. But what can you do if the person you’re caring for is no longer able to feel or show their appreciation for your time and efforts?
Imagine how your loved one would respond if they were healthy. If they weren’t preoccupied with illness or pain (or disabled by dementia), how would your loved one feel about the love and care you’re giving? Remind yourself that the person would express gratitude if they were able.
Applaud your own efforts. If you’re not getting external validation, find ways to acknowledge and reward yourself. Remind yourself of how much you are helping. If you need something more concrete, try making a list of all the ways your caregiving is making a difference. Refer back to it when you start to feel low.
Talk to a supportive family member or friend. Positive reinforcement doesn’t have to come from the person you’re caring for. When you’re feeling unappreciated, turn to friends and family who will listen to you and acknowledge your efforts.
Taking on all of the responsibilities of caregiving without regular breaks or assistance is a surefire recipe for caregiver burnout. Don’t try to do it all alone.
Look into respite care. Enlist friends and family who live near you to run errands, bring a hot meal, or watch the patient so you can take a well-deserved break. Volunteers or paid help can also provide in-home services, either occasionally or on a regular basis. Or you can explore out-of-home respite programs such as adult day care centers and nursing homes.
Speak up. Don’t expect friends and family members to automatically know what you need or how you’re feeling. Be up front about what’s going on with you and the person that you’re caring for. If you have concerns or thoughts about how to improve the situation, express them, even if you’re unsure of how they’ll be received. Start a dialogue.
Spread the responsibility. Try to get as many family members involved as possible. Even someone who lives far away can help. You may also want to divide up caregiving tasks. One person can take care of medical responsibilities, another with finances and bills, and another with groceries and errands, for example.
Set up a regular check-in. Ask a family member, friend, or volunteer from your church or senior center to call you at a regular time (daily, weekly, or as often as you think you need it). This person can help you spread status updates and coordinate with other family members.
Say “yes” when someone offers assistance. Don’t be shy about accepting help. Let people feel good about supporting you. It’s smart to have a list ready of small tasks that others could easily take care of, such as picking up groceries or driving your loved one to an appointment.
Be willing to relinquish some control. Delegating is one thing, trying to control every aspect of care is another. People will be less likely to help if you micromanage, give orders, or insist on doing things your way.
As a busy caregiver, leisure time may seem like an impossible luxury. But you owe it to yourself—as well as to the person you’re caring for—to carve it into your schedule. Give yourself permission to rest and to do things that you enjoy on a daily basis. You will be a better caregiver for it.
There’s a difference between being busy and being productive. If you’re not regularly taking time-off to de-stress and recharge your batteries, you’ll end up accomplishing less in the long run. After a break, you should feel more energetic and focused, so you’ll quickly make up for your relaxation time.
Maintain your personal relationships. Don’t let your friendships get lost in the shuffle of caregiving. These relationships will help sustain you and keep you positive. If it’s difficult to leave the house, invite friends over to visit with you over coffee, tea, or dinner.
Share your feelings. The simple act of expressing what you're going through can be very cathartic. Sharing your feelings with family or friends won't make you a burden to others. In fact, most people will be flattered that you trust them enough to confide in them, and it will only strengthen your bond.
Prioritize activities that bring you enjoyment. Make regular time for hobbies that bring you happiness, whether it’s reading, working in the garden, tinkering in your workshop, knitting, playing with the dogs, or watching the game.
Find ways to pamper yourself. Small luxuries can go a long way towards relieving stress and boosting your spirits. Light candles and take a long bath. Ask your spouse for a back rub. Get a manicure. Buy fresh flowers for the house. Whatever makes you feel special.
Make yourself laugh. Laughter is an excellent antidote to stress—and a little goes a long way. Read a funny book, watch a comedy, or call a friend who makes you laugh. And whenever you can, try to find the humor in everyday situations.
Get out of the house. Seek out friends, family, and respite care providers to step in with caregiving so you can have some time away from the home.
Think of your body like a car. With the right fuel and proper maintenance, it will run reliably and well. Neglect its upkeep and it will start to give you trouble. Don’t add to the stress of your caregiving situation with avoidable health woes.
Keep on top of your doctor visits. It’s easy to forget about your own health when you’re busy with a loved one’s care. Don’t skip check-ups or medical appointments. You need to be healthy in order to take good care of your family member.
Exercise. When you’re stressed and tired, the last thing you feel like doing is exercising. But you’ll feel better afterwards. Exercise is a powerful stress reliever and mood enhancer. Aim for a minimum of 30 minutes on most days—break it up into three 10-minute sessions if that's easier. When you exercise regularly, you’ll also find it boosts your energy level and helps you fight fatigue.
Practice a relaxation technique. A daily relaxation or meditation practice can help you relieve stress and boost feelings of joy and well-being. Try yoga, deep breathing, progressive muscle relaxation, or mindfulness meditation. Even a few minutes in the middle of an overwhelming day can help you feel more centered.
Eat well. Nourish your body with fresh fruit, vegetables, lean protein, and healthy fats such as fish, nuts, and olive oil. Unlike sugar and caffeine—which provide a quick pick-me-up and an even quicker crash—these foods will fuel you with steady energy.
Don’t skimp on sleep. Cutting back on time in bed is counterproductive—at least if your goal is to accomplish more. Most people need more sleep than they think (8 hours is the norm). When you get less, your mood, energy, productivity, and ability to handle stress will suffer.
A caregiver support group is a great way to share your troubles and find people who are going through similar experiences each day. If you can't leave the house, many online groups are also available.
In most support groups, you'll talk about your problems and listen to others talk; you'll not only get help, but you'll also be able to help others. Most importantly, you'll find out that you're not alone. You’ll feel better knowing that other people are in the same situation, and their knowledge can be invaluable, especially if they’re caring for someone with the same illness as your loved one.
|Local vs. Online Support Groups for Caregivers|
|Local support groups:||Online support groups:|
|People live near each other and meet in a given place each week or month.||People are from all over the world and have similar problems.|
|Meetings provide you with face-to-face contact and a chance to make new friends who live near you.||You meet online, through email lists, websites, message boards, or social media.|
|The meetings get you out of the house, get you moving, provide a social outlet, and reduce feelings of isolation.||You can get support without leaving your house, which is good for people with limited mobility or transportation problems.|
|Meetings are at a set time. You will need to attend them regularly to get the full benefit of the group.||You can access the group whenever it's convenient for you or when you most need help.|
|Since the people in the support group are from your area, they'll be more familiar with local resources and issues.||If your problem is very unusual, a rare disease, for example, there may not be enough people for a local group, but there will always be enough people online.|
To find a community support group, check the yellow pages, ask your doctor or hospital, or call a local organization that deals with your loved one's health problem. To find an online support group, visit the websites of organizations dedicated to your loved one's health problem.
Family Care Navigator – Including eldercare services. (Family Caregiver Alliance)
Resources for Caregivers – Support for caregivers of adults, children, individuals with disabilities and mental disorders, veterans, and more. (American Psychological Association)
Elder Care Services Search – Services for older adults and their carers. (The U.S. Department of Aging)
Respite Locator – Services in both the U.S. and Canada. (Arch National Respite Network)
Your Guide to Care and Support – NHS services, including respite care. (NHS)
Support for Families and Carers – Resources and information. (Carers Australia)
Carers New Zealand – Help and advice, including guidance on respite care services. (Carers NZ)
Services for Seniors (PDF) – Including in-home support. (Government of Canada)
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