Caregiver Self-Care Tips

As actress and singer Lena Horne once said, “It’s not the load that breaks you down, it’s the way you carry it.” While we can’t change the nature of the “load,” or the stresses of dementia caregiving, we can help caregivers learn to carry it more easily. The tools, tips, information, and food for thought that follow are intended to keep you flexible, strong, and capable of carrying your load without being too weighed down by the burden.

Research confirms that caregivers of persons with dementia (PWDs) are at a much higher risk for depression than non-caregivers. Caregivers also often report high levels of stress and psychological strain. Some factors that may contribute to the emotional roller coaster so many caregivers experience are:

• The innate unpredictability of the disease. Never knowing what symptom or behavior will surface from one day to the next along with the inability to control the situation.
• Fear. Wondering whether you will have the energy or strength to face the progressive decline of the PWD.
• The constant shifting of your relationship with the PWD, of daily responsibilities and roles, or of your own emotions.
• Complicated feelings. The future is not what you anticipated; family members you thought would help shoulder some responsibilities are not as helpful or are not helpful at all. Perhaps you miss the relationship you used to have with the PWD — the intellectual stimulation, the companionship, the security.
• Loneliness/depression. As the PWD’s condition deteriorates, friends and family often withdraw. People are sometimes scared to see the PWD, unsure of how to communicate, and often retreat, leaving the caregivers to fend for themselves.

Know Yourself

Step back for a moment and think about your personality. What kind of caregiver are you and what effect might this have on the way you provide care? Examine who you are: how your personality impacts your caregiving, your sense of burden, your ability to solve problems, and your own health. Do you feel comfortable asking for help? Or do you feel like you have to do everything yourself? Have you chosen this caregiving role or have you been thrust into it? Do you feel like you have to be eternally cheerful? Can you get in touch with your own emotions, even the not-so-pretty ones? It’s normal to feel grief, anger, sadness, frustration, resentment, guilt, and many other feelings. You are not alone.

Consider Your Relationship With The PWD

Has it historically been a loving relationship or has it been contentious? Does she push your buttons? Do you have a strong attachment to her? All relationships are complicated and dementia further complicates things in the way it affects not only the person with the disease, but everyone involved.

Know Your Boundaries

It is not only okay to draw lines — what you will and will not do, can and cannot do — but having appropriate boundaries is essential to ensuring your own well-being throughout your caregiving journey.

Know Your Triggers

Understand what sets you off. Caring for someone with dementia can be very frustrating. Being able to catch yourself before you reach the end of your rope should improve both your quality of life and that of the PWD for whom you care.
Try not to immediately react to a stressful situation with anger. Take a breath, observe what is going on, and then respond in a thoughtful manner. Try to slow your words and actions down. Keep in mind your desired outcome, and evaluate whether your actions and words are likely to achieve that outcome. If you lose your temper, forgive yourself for being human and try again next time. This can be very difficult, and as with any new skill it will require time and practice.

Give Yourself Permission To Care For Yourself

Caregivers often put their needs last on the daily list of things to do. Here are some small things that can make a big difference in the quality of your day and in the way you are able to handle stressful situations:

• Nourishment – Make sure you eat and drink enough to maintain your blood sugar levels and energy. Breakfast is truly the most important meal of the day. If your response to stress is to eat too much, try to keep healthy snacks on hand to replace less healthy food items.
• Sleep – Try to get at least seven hours of sleep per night. When you’re fatigued in the afternoon, try to take a nap.
  Exercise – Even if the exercise is as simple as taking a walk around the block, or dancing in your living room, get your blood flowing so your brain and body can get the benefits of movement.
• Spiritual practice – Including prayer, meditation, or just sitting and being aware of the breath.
• Social connection – Reach out and call a friend, or attend a support group.
  Physical health – When was the last time you went to the doctor for yourself? It’s important to take care of your own health conditions because stress tends to make these conditions worse.
• Mental health – Who can you turn to for emotional support?  Putting a lid on unpleasant feelings of anger and guilt will only make them bubble up and boil over at another time. Look for healthy ways of acknowledging and expressing your emotions that are not directed at the PWD.

Educate Yourself And Others

Read books and newsletters, do research online, and talk to other people. Learn new techniques and strategies to help improve your quality of life and help sustain your relationship with the PWD throughout the course of the disease. There are some excellent books that have been written by authors who have dementia. Reading about the first-hand experience of dementia may give you valuable insight into what the PWD may be experiencing and feeling.

Develop Creative Problem Solving Skills

When caring for a PWD it is essential to consider what is truly important and let the other things go. Avoid arguing with the PWD — you probably will not win. Develop the art of being wrong. Saying you are sorry often ends an argument. Begin to try and accept the disease process and the changes it creates. Step into the PWD’s reality, understand her underlying emotional needs, and provide validation. Think outside the box and avoid reverting to reality and facts.

Join A Support Group

Explore your feelings and form connections with others caring for a PWD. CaringKind has nearly 100 groups with trained and experienced group leaders, which meet during the day as well as in the evening. We offer groups throughout the NYC metropolitan area for many different types of caregiving situations including groups for spouses, adult children, long-distance caregivers, and LGBT caregivers.

Meet With A CaringKind Social Worker, Or Seek Individual Counseling

Not everyone is a “group person.” Some issues are best dealt with individually or as a family. Our social workers are licensed and, like all of CaringKind’s programs and services, consultations with them are available free of charge.

Understand There Are No Perfect Solutions

Caregivers are human beings, and can never be perfect all the time. The care systems with which we interact (doctors, hospitals, home care agencies, day programs, and residential facilities) are often far from perfect. Your best efforts toward keeping the PWD safe and getting her needs met may not always have the expected result, but your best is all you can do.

Be Three Steps Ahead Of A Crisis Instead Of Continually Responding To One

While it is not always possible to avoid crises, taking certain steps can help keep them at bay.

• Take care of legal and financial matters. Complete a living will, health care proxy and power of attorney. Attend one of our Legal and Financial Seminars to learn more about transferring assets, supplemental needs trusts, Medicaid, and Medicare. Call the 24-hour Helpline to register for upcoming dates.
• Remove environmental hazards from the home that could result in harm to the PWD (falls, burns, etc.). Visit www.thiscaringhome.org for a list of tools and tips for safety, or contact our 24-hour Helpline for guidance.
• Keep a current list of the PWD’s medications with you for doctor’s appointments and in case of an emergency.
• Prepare for wandering. Keep a current photo of the PWD with you at all times. Enroll the PWD in the MedicAlert® NYC Wanderer’s Safety Program. Register yourself in the program, too, as a caregiver, so that if something happens to you, emergency responders will know that you are caring for someone who relies on your help.
• Remove important papers such as birth certificates from the home or keep them somewhere safe. Give the PWD a laminated copy of her ID card, insurance card, etc. in case she loses or misplaces her wallet or purse. Consider securing valuable jewelry or family heirlooms as well.
• If the PWD is at risk for spending large sums of money by responding to telephone calls requesting money or donations to charities, remove the credit card and checkbooks from the home or stop telemarketers from calling by registering with the National Do Not Call Registry at 1-888-382-1222 or www.DoNotCall.gov. Consider having mail sent to a forwarding address or P.O. Box.

Give Yourself Permission To Enjoy Life

You deserve it! Take care of yourself first and you will be able to better care for the PWD. If you are happier and more relaxed, the PWD will also surely benefit. What makes you feel good? When was the last time you had a good hearty laugh?

Take time to:

• Take your dog for a walk.
• Meet a friend for lunch.
• Sing songs (at the top of your lungs!).
• Go to a movie.
• Get a hair cut.
• Watch your favorite sporting event.
• Read a magazine.
• Take a class.
• Visit a museum.
• Take a vacation (If a vacation isn’t possible, try a “staycation” – take a weekend at home when you don’t have anything scheduled).
• Garden.
• Cook.
• Listen to music.
• Play.
• Make art.
• Keep a journal.
• Read a book.
• Sit quietly by yourself.
• Meditate.
• Pray.
• Exercise.

Connect With The PWD

The relationship that you share with your mother, father, spouse, sister, brother, or grandparent with dementia is now different than before, but it is still a relationship. Look for ways to honor and enhance that relationship. Try to find enjoyable activities, separate from day-to-day medications, meals, bills, and medical appointments, that you can do together. The goal is to have fun! Here are some ideas:

• Take a walk.
• Window shop.
• Look at family photos and reminisce.
• Create a scrapbook from images in magazines or printed off the Internet.
  Storytelling – check out Anne Basting’s TimeSlips program for ideas at www.timeslips.org.
• Movies – the PWD may not be able to follow the plot of an entire movie, but she may like short clips of famous scenes, or classic TV programs that rely on physical comedy such as The Three Stooges or I Love Lucy.
• Read out loud – jokes, poetry, or religious verses.
• Sing or dance together.
• Make art or look at art.
• Visit a museum – visit the connect2culture® page on our website for more information about local museum programs for people with dementia and their caregivers.
• Share a treat – ice cream, chocolate, or other favorite food.

Try to think of activities that the PWD historically enjoyed. The activities may need to be adapted for attention span, ability, and safety, but they can be an excellent way to reconnect with each other. Positive emotional and relationship benefits can be retained long after the PWD has forgotten about the details of the activity or outing.

Strike A Healthy Balance

Olivia Ames Hoblitzelle, author of Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s (2010), quotes a Tibetan Nun who is discussing balance:

“In Buddhism we talk about the principle of the two benefits. The idea is very simple. For anything to be of benefit to another person, it must also be balanced with benefit to oneself. We can get all trapped into giving too much of ourselves and lose the balance in relationships. That’s where this idea of two benefits can be a helpful reminder.”

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