Daily home hemodialysis requires the patient to have a partner to ensure safety and supportive care. The role of the partner is very important in the success for the patient. This is why the first evaluation for treatment approval requires that the partner be interviewed. The dialysis staff wants to be sure the care partner understands the demands and expectations that this modality will place on both the patient and the partner. It is important attention be paid as much to the partner as to the patient as to whether this treatment option will be appropriate and provide the best quality of life for both.
Just as in marriage, there may be a honeymoon period with starting home hemodialysis. Both patient and partner may start out star struck with the prospects for how great everything will be and don’t always fully understand the hard road that lies ahead. It is important that boundaries and expectations are set from the beginning so that it helps both patient and partner know their roles and responsibilities. This will help the partner to know their role as a caregiver and to maintain a sense of resilience and adaptation as the demands and needs of the patient change. It is important that as much responsibility as can be undertaken be placed on the patient from the beginning so that the caregiver will not be saddled with more burden that will lead to quicker burnout. Setting goals that are small and achievable help to provide a road map for progress and sustainability that one can measure. The roadmap can later be reviewed to see if another plan of care or treatment might be needed.
The first rule of thumb is for the partner to always have a reasonable and positive self-fulfilling attitude. This allows the patient to provide a level of self-care they need and can move toward independence and recovery. As the patient becomes more capable, the partner must allow and encourage the patient to do for themselves. If this does not happen, the patient will depend on the caregiver more. The caregiver must also recognize when the patient’s demands and needs become too great. It could cause the patient’s health condition to weaken to the point where more structured care is needed or other treatment and supportive options need to be considered.
Communication is also very important so that both patient and partner can talk freely and openly about how things are going and what needs each has and how these can be addressed. The caregiver must make sure to talk straight about what their needs are and when they might need to have a break. This situation is stressful and requires that both partner and patient maintain a focus on stress reduction and replenishing one’s energy and mental well-being.
Caregiver survival requires that the partner be able to deal with stress in whatever way is helpful for them. Personal techniques such as meditation, tai chi, yoga, praying, some form of routine exercise helps maintain resilience and replenish one’s ability to cope. Patients can also give themselves daily affirming messages so that they do not always drown in the negative. A caregiver needs to remember that they also have their life to live. They have to balance that with addressing the needs of the patient without assuming those needs onto themselves. As much as both patient and caregiver think about the future and what might lay ahead they must also remain in the moment and take things day by day. They should not let the next month or several months ahead weigh on them when they cannot at the time do anything about those concerns. Taking things as they happen keeps a person in the present and helps to lift the weight from worrying about things one cannot control. The patient and care partner must also try to have a sense of humor about things. This is also a good de-stressor and helps to keep you focused on being able to let go of expectations or dreams that might not now become reality. It also lessens the sense that you are the only one having struggles with life.
Taking care of yourself also requires that a person maintain forms of entertainment and enjoyment. Taking time to visit with friends and family is very important and cannot be overlooked or you will burn out quickly. The more narrow your lives become the less likely you will be able to consider other ways to effectively problem solve. Staying connected to your job, volunteer connections, or other social circles also keeps your mind off the constant focus that health care demands create.
In the end, the best advice is to always be true to yourself and your feelings. This openness and honesty will provide the guidance and direction in dealing with your role as caregiver. Also remember that taking a vacation from your role as caregiver is a good way to not only give yourself a vacation but also to stay more connected with changes in equipment and technology that keep advancing dialysis treatment and care.