Keeping It Healthy

Reprinted from PN March 2011

Maintaining a good relationship between caregiver and care receiver takes time and work.

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Many people who have a spinal-cord injury or disease (SCI/D) may need daily assistance with their care. This may require a family member or an outside assistant (personal care assistant) to help with daily activities. Keeping this relationship healthy for the caregiver and care receiver can be challenging. It takes time and work.

Good communication along with mutual respect for each other’s needs is at the core of this relationship. At all levels of care and regardless of who provides it, communicating effectively with each other will strengthen the caretaker/patient relationship.

Setting expectations and boundaries up front is essential as well. Communicating these expectations clearly and explicitly will go a long way in avoiding problems down the road. Open, clear, and nonthreatening communication will be important to maintain.

Effective communication involves effective listening. Listening is not always an easy task. Active listening involves being attentive to body language, to how things are being said, and to what is being said and left unsaid. Inattentive listening can send a message that you are disinterested or you do not feel that what the other person has to say is important, and this can be very damaging to the relationship.

In many cases your caretaker may be a spouse, family member, or other loved one. When the role of caretaker is added to an existing relationship, the dynamics of the relationship have now changed.

Be Prepared

Having a checklist or guide for providing care will ensure that necessary procedures are not overlooked. Caretakers should educate themselves on the injury and its associated needs. SCI/D is often new to the individual as well as the caregiver. Complications can develop quickly, and knowing what to expect can help minimize problems. Knowing that approximately 85% of SCI patients develop pressure ulcers will help the caretaker realize how important it is to check the skin daily for changes or early signs that a wound may be developing. In addition, being aware of the unique care that may be associated as a result of the level of injury can prevent complications.

The injured person may not always welcome the caretaker’s help, even though the caregiver means well. A previously independent person who later becomes dependent may have difficulty coping with the change and the frustrations that come with managing daily activities.

Caretakers need to understand that these frustrations are not aimed directly at him/her but rather at the idea that the injured person now depends on care. This does not excuse disrespectful behavior or outbursts of rage; however, it does help explain what the injured person might be dealing with.

Problems will develop; when they do, it is important to work through them by identifying the issue and working together to find helpful solutions. Conflict is a natural part of relationships, and when it occurs, it can be resolved by understanding the cause of the problem from each person’s perspective, being respectful of each person’s views, and not attacking or becoming verbally or physically threatening. When the conflict is at a standstill, additional people may need to be recruited to help.

Time Alone

Giving breaks (or allowing personal time and space) to the caregiver helps allow time to recharge and can help relieve the stress that is sometimes associated with providing daily care.

Stress is common in any relationship. Some signs that a caregiver or receiver may be stressed are increased moodiness, fatigue, or anxiety.

Getting enough sleep and allowing adequate time for rest between activities—particularly with bathing, transferring, and outside activities—can help minimize mental and physical stress. Sometimes respite care may be appropriate for the caregiver to catch up on needed rest or to accomplish tasks that have been set aside. A back-up list for care coverage should be established in the event that the caregiver is unavailable. Working together to project and schedule availability and respite times can also alleviate stress.

Being overly needy or demanding can degrade the relationship and lead to resentment. Being respectful of the caregiver’s needs and challenges also helps maintain balance in the caregiver/receiver relationship.

For caregivers, knowing when a person’s required care is beyond their ability is critical. Don’t be afraid to ask questions concerning what he/she is thinking and feeling. A life-changing tragedy can have long-term effects on a person’s outlook on life. Keeping the caregiver/receiver relationship healthy can be challenging; it requires awareness, attention, and commitment to each other’s well-being.

Contact: PVA Medical Services and Health Policy, 800-424-8200.


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