Last week I had received an unusual email from someone coping with their own disabilities, who is concerned for the wellbeing of their Family Caregiver. These two individuals have been friends for 20 years. Three years ago the dynamics of the friendship changed when a good friend became the Family Caregiver to a friend in need.
Eventually, the stress of caregiving can take its toll and the friendliness of relationships are in jeopardy of becoming strained. The loved one in care must feel very vulnerable of not only losing a caregiver they must rely on for quality of life, but are also concerned of losing a good friend forever. This emotional loneliness and vulnerability must be overwhelming.
Family Caregivers may eventually feel imprisoned in their caregiving relationship where they no longer have crucial boundaries to maintain their identity. Their relationship with their loved one in need becomes symbiotic with their loved one in care. Over time as the medical care of the loved one in care increases, the caregiver’s identity becomes non-existent as they are forced to focus much of their efforts on their loved one in care. A struggle ensues when the caregiver tries to maintain their energy levels, their rights and identity against the odds of the ongoing hardships incurred by caregiving.
The responsibility of caring for another person eventually erodes the caregiver’s personal freedom and identity which over time causes feelings of resentment, yet caregivers also feel shame should they walk away from a loved one in need who desperately relies on them. Many times Family Caregivers must give so much of themselves to their loved one in care, and for such long periods of time, which can go on for years, the Family Caregiver loses touch with their own life, forfeiting their life as they struggle to meet the demands of caring for another person.
The medical system covers the care for loved ones in need, yet Family Caregivers are paid minimal wages at best, and in many instances no wages or financial compensation at all, yet they are left to struggle with their own medical concerns and expenses should they become ill. Nurses or care aides on the other hand receive medical coverage usually through their employer and are cared for should they become ill, injured, or experience burnout, or Post Traumatic Stress Disorder. Family caregiving can require caregivers to take on the same responsibilities as professional nurses and care aides with the same health risks, yet they do not receive the same financial compensation for medical and dental care.
Thankfully over the years many community support groups for Family Caregivers are opening up. Ironically, many Family Caregivers become so isolated from society that many do not even know what programs are available to them. Since this article includes Family Caregivers from across North America, and the programs available will differ in each state and province, the best resource is to locate these programs through:
• your family doctor,
• community nursing agencies,
• social service programs in your community,
• searching the internet for resources within your community,
• stay connected with other Caregivers, even asking strangers you see on the street,
• phone church groups or hospital chaplains,
• advertise on Craigslist seeking information on Family Caregiver groups in your area.
Family Caregivers need to remain connected with other Family Caregivers to share their heartfelt stories and to learn from other Family Caregivers how best to cope with their responsibilities. Family Caregivers must learn they too have rights and must learn to protect their identity and boundaries. The more Family Caregivers stand up and talk about their hardships the more the public to politician will take notice to provide Family Caregivers with additional programs to help them with the responsibility of caregiving.
It is important for Family Caregivers to talk to someone who is a professional. Talking to a friend who has little experience in Family Caregiving is not advisable, as the stress and nature of caregiving can be overwhelming, even unimaginable, to those have not experienced Family Caregiving themselves. Keep your friends for friendship and share your caregiving concerns with those who have experienced what you are going through.
To the kind hearted person who emailed me, concerned for their Family Caregiver, I commend you for taking the time to do so. Thank you for sharing your concern.
Please sign the petition and pass this notice on to friends and family. The link to sign the petition is below.
The 65 million family caregivers in the US need respite. It is among the most frequently requested support services, yet 90% of family caregivers are not receiving respite of any kind. The consequences can be serious. Without support, many family caregivers of children and adults with disabilities and chronic conditions face stress-related physical and emotional illnesses, marital discord, and even higher rates of mortality. The effect on government programs and on the overall economy can be devastating. Respite can help improve family well-being, the risk of abuse or neglect, and help avoid or delay more costly hospitalizations, emergency room use, or foster care and nursing home placements. Keep respite funding in place and make it easier for family caregivers to find, use and pay for respite when and where they need it.
I signed the petition; you can sign, too, by clicking the link below: