A Family Dilemma: When You Are the Only Family Caregiver

When a family member becomes disabled from a chronic or terminal illness, another family member often becomes the primary caregiver. In many families, the initial response is to help in any way possible by offering respite time for the caregiver by taking over the patient's care for a day and by offering emotional and financial help.

However, as the patient continues to have health problems that eventually evolves into years and when health issues begin to mount, that initial response often becomes an inconvenient situation for those who do not live with or provide daily care for a chronic or terminally ill person - even if that person is a close or immediate family relative. Unfortunately, the individual who became the sole caregiver to the impaired person sadly discovers that help from the extended family unit in general is sparsely allocated, if any help is forthcoming at all.

Fact sheets on caregivers show that family members are providing 83% of the labor force involved with those receiving in-home care with over 24% living in the same home. Most have donated their own time and money to care for a loved one with little (if any) financial compensation. It has been estimated that this free labor (in 2007) to be worth over $375 billion dollars a year if it had been care provided by paid services. The amount per person (especially for women) in lost wages, insurance, social security, and retirement benefits total over $660,000 had the informal caregiver been employed outside the home.

Many caregivers find that they are unable to maintain an outside job and have to leave the work force in order to continue caring for their spouse or relative. Financial concerns then become yet another cause of anxiety for the caregiver when the source of financial stability is substantially reduced to only the income the patient may have. Even if the chronically ill family member receives Medicare disability payments, the primary caregiver is not paid to care for him or her.

The primary caregiver, which may be a parent, spouse, significant other, or part of the extended family unit, often becomes totally responsible for taking care of the family member that is ill. They spend almost every hour of their life managing doctor appointments, the disbursement of medications, finding activities for the patient to become involved with, and taking care of all the personal help care. This personal care covers everything that is needed from simple things like picking out the day's clothing to be worn, to giving baths, and feeding the patient. That does not count the time needed to prepare food, do laundry, clean the house, or to go shopping for necessities.

Although many caregivers refuse help from other family members, (sometimes erroneously) believing they can manage on their own, others find that asking for help only results in a sporadic response and may be flatly refused any help whatsoever from the family. In fact, over time even visits by other family members or friends often trickle down to no visits at all, leaving the caregiver (and the patient) in a situation similar to solitary and isolated confinement and the caregiver become solely responsible for everything that has to be taken care of.

In one case, when a caregiver asked her chronic and terminally ill husband's family for more help, she was told it was her problem and that it was even her fault that their son was ill with CML Leukemia, diabetes and for the resultant heart attacks, strokes, and diminished mental capacity. In fact, their denial of the son's illness created a situation where he was told he could not visit unless he could find his own transportation to and from the parent's home. His spouse (and his sole caregiver) was told that she did not need help and that, instead, she needed to find a "real job". That resulted in a family conflict that is ongoing and may never be resolved.

For many caregivers, the ability to cope with everything may turn into anger and resentment - even against the one for whom they are providing necessary and life-sustaining care. Often, this may result in abuse against the patient by the caregiver in the form of lessened or haphazard care and sometimes physical or mental abuse, all due to the stress placed upon one person with the responsibility of total care of another individual without any emotional support.

Caregivers, especially those who have become the only caregiver for a chronically ill patient, may become ill themselves. Burn out from being overworked and emotionally stressed, the sense of being overwhelmed, and the development of friction and strained relationships with other family members (who are seen as not helping enough) escalate into family arguments which may develop into partial or total estrangement from those in the family.

Stress, anxiety, worry over their own health issues, sadness, depression, and even feeling guilty for wanting to do something for themselves - are all emotions that the caregiver has to deal with. The result of poor health care, lack of exercise, and no outside interests may result in the caregiver needing physical and mental health care of his or her own. If the caregiver requires hospitalization, many times the in-home patient being cared for is placed into a nursing home or other facility - even when that solution was a step strenuously avoided and unwelcome by either the caregiver or the chronically ill patient.

Legislation needs to be enacted that will provide help for these caregivers with education, support, and financial assistance, along with a better understanding by Medicare and other government agencies on the problems and issues of being a caregiver. More support is needed for caregiver training, counseling, respite care, and recognition for the work being done by family members as caregivers. Many caregivers provide more than 80 hours a week in care - more than the hours required for two full time jobs - with no family, emotional, or financial support.

Most importantly, family caregivers need to understand that they have to take care of themselves and to take time away from their caregiver duties in order to recharge their own batteries. Caregivers should never feel guilty over finding time and hobbies away from home they enjoy doing. Caregivers must realize that they are also important as individuals and that their own continued physical and mental health is paramount to living healthy with getting enough rest and exercise, accepting and expressing feelings and frustrations with others or a support group, eating well, and finding other ways to de-stress. If family support is unavailable or denied, they should contact a caregiver support group and a respite service to help care for the patient and then take a much-needed break. Otherwise, they will not be able to care for themselves, let alone provide care for a loved family member.

Sources:
Caregiving Issues and Strategies, Fact Sheet; Family Caregiver Alliance, National Center on Caregiving, 2009
Caregiver Advocacy
Understanding Family Caregiver Issues
The Role Of Family CaregiversTaking Care of YOU: Self-Care for Family Caregivers