Families & Caregiving

By Cathy Brady, LMSW & Suzann Ogland-Hand, PhD

Caring for a person with a dementia, like Alzheimer's disease, can be more demanding, frustrating and time-consuming than many can imagine. This article will focus on how you can provide the best care, while maintaining your own health and well-being.

YOU ARE NOT ALONE
Many adults find themselves faced with responsibilities of caring for aging relatives. Trying to figure out how to manage these multiple roles is a challenge. Remember you are not alone, and resources are available to help both you and your loved one.

CAREGIVER TIPS
This process can become more manageable. Here's some direction on how to survive and thrive as a caregiver.

Get a diagnosis as early as possible. If you are noticing a change in your loved one's personality or routine behavior, make a note of the change and raise it as an issue with them. Seek a comprehensive evaluation from your primary care physician and a neuropsychologist. A physical will rule out any medical reasons for the symptoms. A neuropsychological evaluation will identify abilities and deficits in functioning, how to live with deficits, rule out mood disorders, as well as giving a clearer sense of the diagnosis. Pine Rest Senior Care Clinic (616/222-4500) can schedule and provide a neuropsychological evaluation, which can occur in conjunction with your primary care physician.

Educate yourself about the disease. Get up-to-date information through books, the library, the internet (try WorriedAboutMemoryLoss.com or FamilyCaregiver.org for their health condition library), or your regional Alzheimer's Association (toll-free 800/272-3900). A wealth of information is available.

Do legal and financial planning. Consult an elder law attorney on such planning tools as obtaining durable power of attorney for health care and financial issues, guardianship and conservatorship, to empower you to act on your loved one's behalf when the time comes. It is very important to do this as soon as possible, while your loved one is able to fully participate in this planning process. Don't wait for a crisis. Plan ahead.

Learn about available resources. Know what resources are available to help you supplement your care. The clinicians within the Pine Rest Senior Care Clinic and Pine Rest Center for Senior Care (616/222-4515) can help you identify your needs and connect you with the appropriate community resources.

Tap your social resources. The support of family and friends can be an enormous help. When people offer, "Just give me a call if I can do something," think of specific tasks with which you need help (an hour off, something from a store, etc.) and ask them. If people don't volunteer, make a direct request yourself. For example, "It's new for me to ask others to help me out, but I could really use a break. Can you sit with mom while I go get some groceries?"

Develop contingency plans. What might need to happen if you were unable to care for your loved one? You need backup plans for times when you might be sick, on vacation, emotionally not able to give care, or even pass away. What is your "Plan B" if this should happen?

Be aware of your stress level. Be aware of where your body carries tension. Stress can show up with changes physically (such as headaches, high blood pressure, digestive problems), emotionally (such as frustration, fear, easy tearfulness, "short-fuse") or behaviorally (such as sleep disruption, appetite changes, depression). If stress is not identified and is allowed to persist, this reduces your ability to provide adequate care to your loved one. Taking care of yourself is important and necessary. Take the Caregiver Stress Test in this article for a measure of your own current stress level.

Take care of yourself. It's easy for caregivers to devote themselves totally to their loved ones and neglect their own needs. Don't fall into that trap! Be aware of the following:

Make YOUR health a priority. Get to your doctor and keep on top of your health issues. If you aren't here, you won't be able to provide care to your loved one.

Take time for relaxation and exercise. Continue doing things "good for you," that you enjoy on a daily, weekly, and monthly basis.

Get enough rest and eat properly. It's easier to keep yourself going daily when you're well-nourished and well-rested. If this is a problem for you, seek help.

Maintain your religious beliefs and spiritual values. Spiritual practices and communities of faith can help and provide comfort.

Be realistic. Take one day at a time. Be patient with yourself. Set reasonable goals. Give yourself credit for doing what you can.

Be good to yourself! Maintain your sense of humor and look for ways to enjoy your days.

CAREGIVING CAREER
Experts tell us that caregiving is sometimes defined as a "career" - a process that changes and unfolds over time. It is a dynamic process with changes occurring along the way, depending on the health and functioning of you and your loved one.

Awareness Of Your Role As A Caregiver
As your loved one's dementia progresses, you will soon begin to define yourself as a caregiver. Having awareness and understanding of this role shift can be helpful for you as a spouse or you as an adult child, now in the role of giving care to a loved one.

It is helpful to be aware of the seven stages of caregiving (see sidebar on left) so you can plan ahead in researching and using resources in the community. If you are able to plan for the future, you will avoid hasty decisions brought on by a crisis, such as hospitalization of your loved one, sudden uncontrollable dementia behaviors, or becoming unable to continue caregiving duties.

DEPRESSION: A RISK FOR CAREGIVERS
When any person experiences chronic stress over a period time, it can lead to depression. Persons providing care to a loved one are exposed to the stresses of caregiving, which makes them a 'high risk' group for experiencing depression. In fact, some studies show that up to 50% of caregivers develop an episode of major depression during their caregiving career. This means if you are a caregiver, you are at risk for the problem of depression.

Symptoms of depression include sadness or anhedonia (inability to enjoy pleasurable activities) for two weeks plus four out of eight of the following symptoms:

• Sleep - too much, too little, or a disruption in sleep
• Lack of interest in activities
• Feelings of guilt or worthlessness
• Lack of energy
• Appetite changes - eating too much or too little
• Decreased concentration, indecisiveness
• Your body feeling slowed down or keyed up (agitated)
• Suicidal thoughts, plans, attempts

Remember, depression is a common problem that is treatable, sometimes with psychotherapy, sometimes with medication, or both. Among caregivers, it is also a preventable problem. By consistently addressing your own needs on a daily basis and understanding how your thoughts influence how you feel, caregivers can help manage frustration, and help prevent depression.

Self-help resources are also available for caregivers, such as the books, Control Your Depression by Lewinsohn et al, Feeling Good by David Burns, and Learned Optimism by Martin Seligman. These resources are available in your local library for free and at your local bookstore in paperback. Additionally, good therapists in your community specializing in caregiver issues, like those found at Pine Rest's Senior Care Clinic, can also help you when times are tough.

CONCLUSION
Being a caregiver for a loved one is a good thing. Caregiving can provide a lot of meaning to your life. Perhaps nothing is quite as personally satisfying as the reward of seeing that your loved one is getting good care. And we are here to assist you, if you need help with difficult times.