Balancing the Needs of Patient and Caregiver

Years ago, a friend who was dying said, “There are two patients-me and Dick,” the latter being her husband and caregiver. She could not have put it more aptly.

Caregivers are hidden patients themselves, with serious adverse physical and mental health consequences from their physically and emotionally demanding work as caregivers and reduced attention to their own health and health care. Supporting Family Caregivers in Providing Care 

A newly released study  points out that the elderly are more frequently cared for by their spouses (other elderly) versus their children. While much is made of the “sandwich generation,” those who care for parents as well as children, this turns out to occur far less than previously thought.

While there are various studies that identify the incredible health risks to caregivers, it’s a bit like the cartoon of the elephant in the living room who answers the phone by saying, “No, it’s the elephant.” We know it’s a problem, but the conversation of how to balance the needs of patient and caregiver doesn’t happen as much as it should. 

So this post is an effort to begin a much needed conversation

What patients and caregivers have in common: While they may be coming from different places, patients and caregivers share many similar feelings including:

• Isolation

• Burdened

• Overwhelmed

• Lack of control

• Afraid and fearful

• Guilt

• Fatigued and disturbed sleep

• Lowered immune function

• Depressed

• Worried about finances, their inability to meet expectations and responsibilities, of work, families and/or friends.

Unique to patients:  Dealing with what can seem like never ending ailments, such as pain, lack of mobility, fatigue, “brain fog,” pill burden, anxiety, depression and more can easily explain why patients try to exert as much control in their life as possible. Often times they can be so absorbed in what they are dealing with that they have no perception of how it’s affecting their caregiver, let alone what are realistic expectations of other people.

What is unique to caregivers: Putting their life and needs on hold to meet someone else’s needs can feel fulfilling at times, as well as very frustrating. Limited access to patient information, lack of education and training about the person’s condition and how they can provide the best care as well as having to deal with other family and friends who question what’s going on can make a difficult situation feel impossible. Continually viewing their charges’ needs and feelings before their own is a set up for disaster.  

Striking the Balance

• Caregivers need education about the patient’s condition, their needs and how they can best meet them.

• Patients need to understand the importance of their caregiver being involved in visits to medical and social service providers, being educated about their condition, as well as have the ability to speak with them at other times.

• Caregivers need to be clear about what they can and can not do. Medical and social service providers, as well as family, friends and the patient, need to accept this and not try to make them responsible for things they clearly are not capable or willing to do.

• Patients need to be clear about their needs and not expect caregivers to surmise what they are.

• Patients and caregivers need to respect boundaries of one another.

• Tools that help to coordinate the needs of the caregiver and patient-such as a Lotsa Helping Hands page  should be utilized as they benefit both patient and caregiver.

• Advocacy is needed by both patient and caregiver.