When You Become Your Spouse's Caregiver

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When the reality of your spouse's injuries settle in, you will face the prospect of starting a whole new chapter of your life -- a chapter that you hadn't expected. Becoming your spouse's caregiver will affect you both emotionally and physically. You may feel overwhelmed by all that is involved with caring for your spouse and wonder how you will keep it all together. At the same time, you may be mourning the loss of your old life and the relationship that you and your spouse had. At this point it's important for you and your spouse to accept that things have changed and to surround yourselves with resources and support.

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How you may be feeling

It's common to experience many different emotions when a loved one requires long-term care at home.

• Grief. It's natural to mourn the loss of your spouse's good health as well as your own expectations of what the future might have been like.
• Anxiety. You may be anxious that you won't be up to the task of caring for your spouse; that you and your spouse will lose your close, emotional bond; that you will not be able to keep up with your medical and household expenses.
• Fear. You may be afraid that this will not be a temporary situation and that you won't be able to cope or manage if this becomes a more permanent situation.
• Anger. You didn't choose to be your spouse's caregiver. It's not a position you asked for. It's normal to feel bitter about being handed a role you didn't expect or prepare for.
• Isolation. There may be times when you feel very much alone, and as though no one else could possibly understand what you're going through.
• Guilt. It's common to feel glad that you're OK but upset that your spouse isn't. It's also common to feel burdened by the role of caregiver even though you love your spouse and are compassionate.

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When to seek help

It's normal to experience feelings of grief, anxiety, fear, anger, isolation, and guilt when you are caring for someone you love. But if any of these feelings persist or feel overwhelming, talk to a health care professional about getting help.

Warning signs that you may be depressed or under too much stress include:

• persistent sad, anxious, or "empty" mood
• feelings of hopelessness, pessimism
• feelings of guilt, worthlessness, helplessness
• loss of interest or pleasure in hobbies and activities that you once enjoyed
• insomnia, early-morning awakening, oversleeping
• overeating or not eating enough, and/or weight loss or weight gain
• self-medicating or drinking too much alcohol
• decreased energy, fatigue, being "slowed down"
• restlessness, irritability
• roughly treating or neglecting your spouse
• difficulty concentrating, remembering, or making decisions
• persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders, and chronic pain
• thoughts of death or suicide; suicide attempts

Seek help immediately if you or your spouse have thoughts of death or suicide.

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Learning about your spouse's condition and available resources

Caring for a person with special needs is demanding and often frustrating. Caregivers who learn what help is available to their spouses and how to access that help tend to feel more in control of a difficult situation. Becoming knowledgeable about your spouse's condition and the resources that are available isn't just good for your spouse -- it's also good for you.

• Educate yourself about your spouse's condition. Become a knowledgeable member of your spouse's health care team by learning everything you can about your spouse's condition. This will enable you to ask health care providers the right questions, allow you to anticipate your spouse's needs, and help you to react appropriately when issues arise. It will also help you gain confidence and a sense of control.
• Learn to communicate with members of the health care profession.
• Be sure to write down questions on a running list that you keep nearby, and refer to the list when you speak with your spouse's health care provider.
• If you have many things to talk about with the health care provider, schedule a consultation and be sure to take notes during the meeting.
• Think about having someone else -- a friend or family member -- go with you to meetings with your spouse's health care providers. It can be difficult to understand and absorb everything you're being told. (You may still be in a little bit of shock at this time.)
• Learn the routines of your spouse's medical facilities. This will help you access the facilities more easily. Ask about office hours; the best time to reach your spouse's health care provider; what to do in the event of a medical emergency; and whom to contact after office hours.
• Keep good records. Have a central place, such as a notebook, where you can keep telephone numbers and e-mails of doctors and other care providers, information about special diets, and other pertinent information (for example, banking and insurance information, a living will, health care proxy). Bring copies of your spouse's health insurance card and the names and doses of your spouse's medications with you to health care appointments.
• Learn about assistive devices. Seek out information about devices and tools that will help make life easier for you and your spouse. There are many illness-specific resources available through the Internet and from various associations such as the Paralyzed Veterans of America at www.pva.org, and the Amputee Coalition of America at www.amputee-coalition.org. For computer assistive technology, you can also consult the DoD's Computer/Electronic Accommodations Program at www.tricare.osd.mil/capor by phone at 1-703-681-8813 (voice) or 1-703-681-3978 (TTY).
• Take advantage of supportive and skilled-care assistance. Different levels of assistance may be available to you and your spouse. For example, home health aides, home care aides, and nursing assistants can assist with activities of daily living. Occupational therapists, physical therapists, and registered nurses have a higher level of skill and can often assist with ongoing medical necessities that a doctor may have ordered.
• Find out about benefits available through the military, Department of Veterans Affairs, and elsewhere.

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Taking care of yourself

Caring for a loved one is exhausting work. Your own health and well-being may be the last thing on your mind, but if you're feeling drained, you may become impatient, run down, or at risk of making poor decisions. Taking care of yourself is the best thing you can do for yourself and your spouse.

• Know your strengths and weaknesses. You may enjoy preparing your loved one's meals, but dread helping him shave. If that's the case, take the stress off of yourself by asking someone more skilled with the razor to take over that chore for you if possible. There are also professionals who will make home visits to attend to your spouse's needs, such as beauticians, podiatrists, and therapists.
• Take breaks. Caregiving is all-consuming and demanding work. Give yourself down time to restore your energy and refresh your attitude. Even a long walk or a night out at the movies will take the edge off. But also look for longer getaways, such as a day or weekend away if possible. Ask trusted family members to take over care, or look into respite care (provided for a weekend, a week or even more).
• Take care of your own health needs. Make appointments (and keep them) for check-ups or when you're feeling sick. Sometimes it can be hard to take care of yourself when you're so focused on someone else's needs. If you become sick yourself, your situation can only become more complicated.
• Learn to lift properly. If lifting is part of your caregiving routine, have someone show you how to do it without damaging your back.
• Create a team of professionals to help you. To the extent that you can, assemble a team of professionals (health care professionals, financial and legal planners, clergy, family, friends, co-workers) to rely on. A team approach can help you feel more prepared and better able to handle the challenges of caregiving, which in turn can help reduce your own stress.
• Accept help. Neighbors, friends, co-workers, or people from your faith community may have asked how they can help you with your spouse's care. Accept their offers and give them specific tasks, such as cooking meals, picking up groceries, doing laundry, or even spending an afternoon with your spouse while you take a break.
• Hold a family meeting. Call together children and other family members, even if they live far away, to discuss your spouse's needs. Determine how each family member can contribute, either through direct care or by taking on specific household chores and responsibilities. This way no one person is shouldering the entire load alone. If someone lives far away, they can be given the task of making phone calls and following up so they can feel included in the process. They can also make tapes and send pictures if they can't visit.
• Set realistic expectations for your spouse and yourself. No one is able to do anything "perfectly" at all times, which is also true for caregiving and recovery. When you realistically adjust to your "new normal" and lower your own and other's expectations, your stress level can be greatly reduced.
• Subscribe to caregiving newsletters and magazines. Two helpful magazines and Web sites are Caring Today (www.caringtoday.com) and Today's Caregiver (www.caregiver.com).
• Connect with other caregivers. Whether it's a formal support group or an informal network of other caregivers, having people to turn to will ease feelings of isolation and help you get through this challenging time. People in similar situations can truly understand what you're going through as well as what might be ahead. Talking with them will help you vent your frustrations, learn caregiving tips, and gain insider's information about resources and services. You can also ask your health care provider or visit online resources such as the National Family Caregivers Association at www.nfcacares.organd the Family Caregiver Alliance at www.caregiver.org.
• Get professional assistance. It is very important that you're able to get objective help for your ongoing stress, frustrations, and sadness. There are even therapists who specialize in dealing with being a spouse's caregiver.

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Other resources

Your military support services

Each service branch sponsors information and support programs for service members and their families. You can call or visit any installation Army Community Service Center, Marine Corps Community Services, Fleet and Family Support Center, or Airman and Family Readiness Center regardless of your branch affiliation.

If you aren't near an installation, National Guard Family Assistance Centers are available in every state. The Local Community Resource Finder on the National Guard Family Program at www.jointservicessupport.orgwill identify your closest center.

Military OneSource

This free 24-hour service is available to all active duty, Guard, and Reserve members (regardless of activation status) and their families. Consultants provide information and make referrals on a wide range of issues, including caregiving. Free face-to-face counseling sessions (and their equivalent by phone or online) are also available. Call 1-800-342-9647 or go to www.MilitaryOneSource.comto learn more.

Written with the help of Marjorie Dyan Hirsch, L.C.S.W., C.E.A.P. Ms. Hirsch is a certified employee assistance professional and a board certified expert in traumatic stress. She is a corporate consultant and CEO of The Full Spectrum in New York City.

© 2005, 2010 Ceridian Corporation, Military OneSource. All rights reserved. 071410

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