Stages of Caregiving:
The Family Caregiver’s Emotional Journey

• Feelings of shock, fear, loss, denial, confusion and incomprehension of the magnitude of the change in lives taking place are very common.
• Typically caregivers think the elder’s insurance, Medicare or the insurance supplement will pay for care in the home on a long-term basis and are in disbelief to learn that is usually not the case.
• Caregivers are generally in an overwhelmed state whether they are coming out of the doctor’s office after a new diagnosis or from the hospital emergency room trying to absorb what they need to do and how they are going to get everything in place.
• Vacillating between offering comfort, reassurance and strength to the care recipient and reeling from one’s own sadness, grief and disbelief is often the norm.

Caregiver stories: Emily moved her elderly mother into her home from out of state after a hospitalization, where it was determined her mother could no longer live alone safely. Emily had held her emotions in check throughout the diagnosis in order to make a plan, move her mother in with her, begin the process of selling her mother’s house and taking time off from work. It was after this initial crisis that her emotions came to the forefront and overwhelmed her with the beginning of her understanding of what lay ahead.

• This phase has been described as arriving in a foreign land. The caregiver is trying to get his or her bearings, to learn the lay of the land, like what government programs are available and what the eligibility criteria for these programs is in this maze of government services.
• Feelings of frustration, incomprehension and not knowing where to turn precipitate caregivers reaching out for professional guidance frequently at this phase. Caregivers should contact the ASAP’s Family Caregiver Support Program, outreach workers at the local Council On Aging or private Geriatric Care Managers. Disease specific organizations like the Alzheimer’s Association also have care consultants, and employee assistance programs sometimes have social workers who can assist family caregivers as well.
• Finding a trusted guide to give direction, help set short-term priorities, offer contacts to begin longer term planning and plant the seeds for taking care of the caregiver’s emotional and physical health is vital to conserve the caregiver’s energy and help stabilize the situation.
• Sometimes caregivers are hoping for a magic answer or the right person to fix everything so they can get back to their lives. When this does not happen, it can evoke anger and despair.

Caregiver Story: Pat had been following up on many suggested services and possible programs from family and friends to get some help to care for her husband, who unexpectedly did not recover from surgery as planned and now was going to need lots of help on an ongoing basis. Pat was becoming exasperated with all of the information and seemingly endless contacts but not getting any relief in place.

• Fatigue is usually setting in and stress is increasing.
• The caregiver is often pleased that there is some kind of order, but not satisfied so they tend to reach out for help at this point.
• The care plan is still mostly comprised of family members.
• There is familiarity with doctors, pharmacy, hospitals, tests, labs and treatments.
• There is an increase in the caregiver's knowledge about the medical condition/illness.
• Caregiver has confidence with activities of daily living for care recipient like bathing, medication management, transferring from bed to chair to car, etc.

Caregiver Story: Joan was caring for her mother and also for her two children. She had been working on getting her siblings to help with the care. There had been a tragedy in the family which had created a lot of distance and Joan was hoping this caregiving situation for their mother would bring the family back together as well as provide the necessary care team. But it was slow going in getting the siblings to help out and Joan was becoming more and more tired physically and emotionally.

• There is a depletion of the caregiver’s internal resources.
• There are signs of caregiver health decline – irritability, weight gain or loss, decreased energy, increased blood pressure.
• Caregivers’ keep thinking if they could only be more efficient or get control of the situation, it would be better.
• Family dynamics come more into play when needs and stressors increase.
• Many family meetings take place at this point when the caregiver is trying to get others to listen and help more.

Caregiver Story: Jolly siblings visit from out of town telling the caregiver, the care recipient’s daughter-in-law, that she needs to lighten up, that their mother isn’t as bad as the daughter-in-law is stating. The daughter-in-law is exhausted and cannot break through their denial, which in her mind is the only way she is going to get help and recognition for all the care she is providing. Stress mounts.

• Bearing a heavy weight is the image most common for this phase. This is the place where caregivers are often brought to their knees and all supports are needed to work through these feelings.
• Emotions increase and push forward either internally to cause muscle tension, intestinal problems, increased anxiety and/or depression, as well as withdrawing or outbursts.
• Old coping strategies are tried like using alcohol, food or exercise. Sometimes that can help find short-term relief, but it is creating long-term problems if the caregiver is not mindful of the behavior.
• Effects are compounded when the desire for the old life and the realization of what this new life is now like confront each other head on. The caregiver is facing a great struggle. It can be very intense.

Caregiver Story: Stan had spent months researching and visiting assisted living facilities, and finally worked through all the pieces, including getting his mother to agree to move. He thought this was the answer and that he could get his life back. He was at a very low point physically and emotionally as he realized how much his caregiver role would be continuing.

Caregiver Story: Daughter moved in temporarily with her mother once her mother came home from the hospital. She continued to work, commuting a long distance, which was very difficult, and then tried to go to back to her home on weekends. That symbolized the desire for her old life and she was realizing how little of it she can actually have and was feeling guilty. She loves her mother, felt the duty and real satisfaction of being there for her in her time of need, but was struggling to hang on to her life.

• Incredible external and internal work has been done to get to this point, mostly unrecognized from the outside world.
• Caregivers are invisible. People pass them on the street, see they are showered, walking with a bag of groceries and have no idea of who they are looking at. They look like a regular person. But internally the caregiver is climbing a mountain cliff and hanging on, just unseen. These situations are monumental! What caregivers do is HUGE!!!
• It is crucial to build and utilize the team of supports to sustain you.
• This is the place caregivers are ready to hear about taking care of their needs.
• Great courage and growth can happen here.

Caregiver Story: David had been caring for his partner and had found some in-home help, learned about the illness and adjusted his work life. One year later he reached out again stating, “I think I’m at a place to be able to hear you, can we meet again?”

Caregiver Story: Tanya was caring for her father and her brother with special needs and working outside of the home as well. With some encouragement and permission to address her needs as well, Tanya worked on creating a quiet space in the house just for her as well as creating space in the daily routine to tend to her needs. Tanya had experienced a serious decline in her health from a previous caregiving experience where she had neglected her own needs and was reaching out to make a change to live and provide care in a healthy way for everyone. 

• Enlightenment – a lot of light bulbs are turning on.
• The caregiver is astounded by insights and ability to transcend these incredible barriers.
• Successful results are reaped by the caregiver after having tried so hard and been so vulnerable.
• Identified essentials: what connects you to joy, what connects you to who you are, what are the values you live out each day in caregiving; all placed at the core, the center; boundaries are being set and held to sustain health and new life.   

Caregiver Story: Bruce cared for his wife and built an incredible team of supports several layers deep for backup and emergency coverage. He had reached out and became a mentor for others, especially for men in his situation. He knew why he was continuing to be a caregiver and had found meaning in the care which sustained him.

Caregiver Story: Angela cared for her husband with a quiet resolve, her values constantly upholding the dignity and identity of her spouse who is losing his memory; this takes incredible strength to constantly set and maintain boundaries.

• Grieving is so important. And grieving not just for the most obvious loss of the person who died, but the many losses that are linked to the caregiving experience such as the relationship, the caregiver daily routine, the identity as caregiver, meaning from caring for another who is vulnerable and in their time of need, and the closeness and intimacy of knowing someone so thoroughly and being present for them.
• Review of the gamut of caregiving experiences. This is very personal and unique to each situation. This process of review can propel caregivers into a place of not only understanding what they personally went through and learned of the person they were caring for, the health care system’s maze along the continuum of care and the advocacy role they played, but also their own response to crisis in the short and long term, the knowledge they survived and the understanding of their past and new found strengths and vulnerabilities.   
• Caregivers will often translate the legacy of the person lost into meaningful ways to help others as a way of continuing that connection and that person’s contribution to life.
• It can be truly inspiring and a sense of great meaning can be instilled in each moment going forward with the caregiver’s perspective in the context of their knowledge and growth looking back and infusing that into the NOW.

Caregiver Story: After caring for her mother, Susan changed careers and began working with family caregivers offering emotional support to pass on what she had learned as well as to remain connected to what she described as “real work.”