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First a Partner, Then a Caregiver

– by Alison W. Henderson, MS, and Rhonda M. Williams, PhD

Many individuals commit to love their partner/spouse “in sickness and in health.” However, major illness or injury, such as amputation, can tax even the strongest relationships. No matter what the cause, limb loss can affect mobility, vocational opportunities, recreational activities, comfort level, and mood.

These changes can be transient or enduring, and they differ from one individual to the next. Functionally, having an amputation (or a disease associated with amputation, such as diabetes) may cause problems with getting around or performing activities of daily living, changes in work and finances, pain issues, changed social networks, and increased medical appointments. These types of changes may understandably cause frustration, questions about typical family roles, social withdrawal, mood changes, and anxiety.

Some people with limb loss may try to minimize the help they need in an effort to maintain maximal independence or because they are concerned about feeling like (or being treated like) a “burden.” Others may worry about not finding enough help to meet their most basic needs. There is no single “best” or “right” way to cope.

The good news is that while having an amputation can tax a relationship, some couples report that they are ultimately able to deepen their bond as a result of the experience. Good communication skills are the key to maintaining an intimate bond while partners balance the roles of partner/spouse and giver or receiver of care. While good communication is the job of both partners, the following tips are tailored for amputees who want to improve their relationships with their partner-caregiver:

  • Listen. Good communication and good will starts with deliberate listening. Practice listening actively to your partner, focusing on his or her words, body language, and voice tone. Practice reflective listening, where you repeat back to your partner what you just heard from him or her. This, along with asking clarifying questions, will help you ensure that you understand.
  • Keep the 5-to-1 Ratio. Research shows that successful relationships maintain a ratio of at least five positive interactions for every one negative interaction. A positive interaction can be almost anything, such as giving your partner a compliment, thanking him or her, spending quality time, doing a small favor, showing affection with hugs, leaving a cheerful note, or just calling to say hello. Negative interactions can also be almost anything, including arguing, criticizing, showing contempt, ignoring each other, blaming, insulting, or treating your partner unkindly. Do your best to make sure that the positive interactions outweigh the negative exchanges by at least five to one!
  • Know thyself. You are the best judge of your own internal experiences. Before you ask for what you need, pause and look inward. Try to identify your true feelings and needs accurately. For example, try to differentiate between whether you are physically uncomfortable or emotionally distressed. This will help you ask for what you need more precisely.
  • Use “I Statements.”. State your feelings and thoughts using “I statements.” Starting a sentence with “I feel …” demonstrates that you are willing to take responsibility for your own feelings and your own goals. Imagine how your partner might respond better to your stating “I feel lonely when you run errands without me” than to accusations like “You always leave me at home.”
  • Make requests, not demands. If you value the person who is helping you, you can do this very powerfully by using the most basic courtesy. Statements like “Please, would you help me with …” and “Thank you very much” are worth their weight in gold.
  • Be specific. When making a request of your partner, try to be as specific as possible. A common problem in almost every intimate relationship is expecting our partner to be able to read our mind. Many problems can be avoided by simply saying exactly what you need. For example, “Would you be able to give me a ride to my doctor’s appointment tomorrow, please? We would need to leave the house by 9:30.”
  • Correct, don’t criticize. If your partner does not help you in the way you would like, try to offer suggestions for next time rather than criticism. Offering correction in a positive manner will allow your partner to listen to you without feeling defensive. Try “I appreciate you trying to help me cook dinner. Next time, I think it might work even better if you help me gather the ingredients and then just supervise while I cook” instead of saying something like “You are always getting in my way when you try to help me make dinner.”
  • Recognize the person as a partner first and a caregiver second. Although few would choose this, we sometimes slip into taking our partner for granted. When experiencing a major health problem, it can be easy to regard our partner as a personal attendant, responsible for meeting our every need. It is often difficult for both individuals to recall that their relationship is foremost a partnership. Set aside “couple” time every week when you and your partner can interact as a couple, not as a patient and caregiver.
  • Give back. When ill or injured, you may need a little extra help and care from your partner. One of the ways to ease this situation for both partners, though, is to remain mindful that it is both possible and necessary to give back to your partner, even if you are ill or injured. Think about ways you can take care of him or her. This might include providing companionship (e.g., playing games or doing social activities together), emotional support (e.g., listening to your partner, expressing encouragement and warmth, or expressing gratitude for their care and empathy for their experiences), or informational support (e.g., investigating resources for family projects or making phone calls). What is the best way to find out what your partner-caregiver needs? Ask!
  • Set expectations. Sometimes, it is unclear how much help a caregiver needs to provide. Well-meaning partners may offer to do too much or perhaps not enough. It is difficult to know how to preserve your independence while still getting needed help. Tell your partner which tasks you need help with, and be clear about which things you can do independently. Ask your other care providers (e.g., doctors or physical therapists) if you are uncertain if you need help or supervision for a particular task.
  • Consider additional help. Even the best caregiver needs a break. Consider hiring a home health aide for several hours a week so your partner can have a break and re-energize. Respite care provides a caregiver break for a longer duration. Enlisting unpaid help is another alternative, and social support networks of friends and family may be able to provide some aspects of your care.
  • Know when to get professional help. Some relationship problems are more difficult to resolve than others. It may be helpful to have a more objective outside perspective. Meeting with a psychologist, social worker, or licensed therapist who specializes in couple therapy may be very beneficial to your relationship. There are also a wide variety of books published for couples. One popular book is The Seven Principles for Making Marriage Work: A Practical Guide from the Country’s Foremost Relationship Expert, by John M. Gottman, PhD, and Nan Silver.

About the Authors

Alison Henderson, MS, is a doctoral candidate in clinical psychology at the University of Washington. She is currently a psychology intern at the Veterans Administration of Puget Sound Health Care System (VAPSHCS), Seattle Division.

Rhonda Williams, PhD, is an assistant professor in the Department of Rehabilitation Medicine at the University of Washington. Since 2000, she has also worked as an attending psychologist within Rehabilitation Care Services at the VAPSHCS.

Disclaimer: The following information is provided and owned by the Amputation Coalition of America and was previously published on the website http://www.amputee-coalition.org or the Coalitions Newsletter, inMotion.

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