When your spouse incurs a severe injury or debilitating illness, you face the prospect of starting a whole new chapter of your life – one that you hadn’t expected. Becoming your spouse’s caregiver presents a unique set of challenges that can affect you emotionally and physically, and can often seem overwhelming. This article contains information about common reactions to becoming a caregiver, resources for support and help and tips on taking care of yourself throughout the caregiving process.
Common emotional responses
It's common to experience many different emotions when a loved one requires long-term care.
- 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 might feel anxious that you won't be up to the task of caring for your spouse or that you and your spouse will lose your close emotional bond.
- Fear. You may be afraid 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 will likely be times when you feel very much alone or as if no one else could possibly understand what you're going through.
- Guilt. It's common to feel glad that you're okay 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.
If you feel overwhelmed, it's important to talk with a health care professional about getting help. Warning signs that you may be depressed or under too much stress include:
- A persistent sad, anxious or "empty" mood, feelings of hopelessness, pessimism, guilt, worthlessness or helplessness
- Insomnia or oversleeping
- Overeating or not eating enough, or weight loss or weight gain
- Self-medicating or drinking too much alcohol
- Decreased energy, fatigue or feeling "slowed down"
- Difficulty concentrating, remembering or making decisions
- Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders and chronic pain
Seek help immediately if you or your spouse has thoughts of death or suicide.
Learning about your spouse's condition and available resources
Caring for a person with special needs is demanding and often frustrating. But you don't have to go it alone. Caregivers who learn what help is available and how to access it tend to feel more in control of a difficult situation.
- Educate yourself about your spouse's condition. Become knowledgeable by learning what 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 react appropriately when issues arise.
- Learn to communicate with members of the health care profession. Be sure to write down your questions on a running list that you keep nearby and refer to the list when you speak with your spouse's health care providers. 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.
- 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 and what to do in the event of a medical emergency.
- Keep good records. Have a central place, such as a notebook, where you keep telephone numbers and emails of doctors and other care providers as well as other pertinent information. Bring copies of your spouse's health insurance card and the names and doses of your spouse's medications to health care appointments.
- Learn about assistive devices. Seek out information about devices and tools that help make life easier for you and your spouse. There are many illness-specific resources available, such as Paralyzed Veterans of America and the Amputee Coalition of America. For computer-assistive technology, consult the TRICARE Computer/Electronic Accommodations Program.
- 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.
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 for making poor decisions. Caring for yourself physically and mentally will make you feel better, help you take better care of your spouse and make you more resilient.
- Know your strengths and weaknesses. You may enjoy preparing your loved one's meals, but dread helping him or her bathe. Take the stress off of yourself by asking someone more skilled to take over that chore for you if possible. There are professionals who will make home visits to attend to your spouse's needs.
- Take breaks. Caregiving is consuming and demanding work. Give yourself down time to restore your energy. A long walk or a night out at the movies can 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.
- 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.
- 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 and co-workers) to rely on. A team approach can help you feel more prepared and better able to handle the challenges of caregiving.
- Accept help. Neighbors, friends or co-workers 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 or even spending an afternoon with your spouse while you take a break.
- Hold a family meeting. Call together 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 responsibilities. If someone lives far away, that person can handle the task of making phone calls and following up.
- 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. Talk with your health care provider or visit online resources like the National Family Caregivers Association.
If you're overwhelmed with your new role as caretaker to your spouse, help is available.
Military OneSource can provide you with further resources and can help connect you with a counselor. Additionally, military and family life counselors are available to provide non-medical counseling services. Contact them through your installation's family support center.