Also read my article The Healthcare System is Biased

The care and healthcare systems lack sensitivity to the daily issues and emotional stress experienced by family caregivers and aging adults. Hospitals refuse to admit Medicare patients to avoid financial penalties or attempt to dump patients with little notice to families.

More shocking to families is that Medicare does not pay for all types of care. Costs of care are unaffordable without a plan and will continue to skyrocket annually with 3-6% increases.

Lack of early family caregiving conversations (why not wait for a crisis?) results in disasters for family situations involving spouses, adult children, and aging parents. The “let’s talk about it later,” or “I don’t need any help” delay tactic results in drastic care choices and limited options. Unexpected situations occur. Caregiving can be exhausting even when you love your parents. 

Caregivers lack credible experts to support problem-solving and decision making. Providing caregivers with a list of resources, a book, a pat on the back, and “good luck” is the usual response from social service and referral experts who have no direct practical experience. Book smarts fail caregiving situations.

Nursing home care, unless one has an advocate, is a situation of last resort. How many nursing homes have you visited where residents are sitting in wheelchairs bent over asleep lined up by the nurses’ station? How many hallways smell of urine? If Alzheimer’s is the diagnosis, the majority of nursing home staff are untrained in the skills needed to compassionately care for aging adults with memory loss.

Aging adults want to remain at home and out of nursing homes but many aren’t sure how to make that happen. Early signs that a loved one may need care are important to notice. 

Care and retirement communities are a blessing or a nightmare depending on leadership. Unreported falls, injuries, medications not given or given incorrectly, skin wounds, refusing to get out of bed to come to a meal, or sitting in urine or feces for hours are frequent occurrences for aging adults who need more than a hello or a quick check-in. Family members must show up or find someone to help with visits to make certain loved ones are receiving care. Staff may be supportive or judgmental of resident and family relationships. There is a long list of things that care communities don’t tell families that you should know. 

Professional caregivers experience poor treatment by management. Physicians lack bedside manner and are condescending not only to staff but to family members. Turnover rates of 50% are normal in care communities and care agencies. Many professional caregivers are burned out family caregivers struggling to make ends meet on low wages and absent benefits. Many of these caregivers have hearts of gold and love their jobs. More support and training is needed so the caregivers who are compassionate remain and advance within the industry.

In-home care, an option to delaying a move to a retirement or care community has similar issues. Turnover is high. Care staff comes and go. Training is minimal. Caregivers lack experience and professional boundaries. Successful situations occur when a family creates care plans, manages the caregivers, and establishes quality check-in points. Family caregivers lack the experience and time to manage care situations. Care of parents and aging family members are at the mercy of a care system that is rushed, too busy to care, and constrained by policies. Learning to manage in-home caregivers to get the result you want is necessary.  Click here to read Pamela’s article about 10 tips to managing in-home caregivers. 

Many aspects of “I Wish Someone Told Me” are beyond the obvious and lie in the small details of information, interactions, and care. By taking a step to become more informed, to learn to advocate and manage care, the stress, feelings of overwhelm, anxiety, and responding to the unexpected will feel more manageable. Caregivers and aging adults will feel more confident in decision making and problem-solving. Worries about making a mistake will lessen. Time will become more manageable. Family crises will become a past issue.

You may be thinking, “I can’t add one more thing to my schedule. I have no time.” Do you then have time to respond to more crises, more emergencies, greater health declines, not feeling well, increased anxiety and stress, worsened relationships with your family, and sleepless nights?” Making the time and putting for the effort to become more knowledgeable more confident is the solution.

Family battles and struggles exist when caregiving becomes a need. One family member usually steps up to bear the majority of the responsibility. Other family members watch from the sidelines and hold their breath, being thankful that they’re not having to invest time and effort to care for loved ones. Others family members are great at offering to advise but don’t lift a finger to help. Family members judge other family members for decisions and actions.

Aging parents can be difficult. Not feeling well can result in behaviors and being impatient with the caregiver. Until caregivers are in the situation of an aging parent it is very difficult to be empathetic with the health and memory declines that are associated with aging.

Pamela’s experience helps caregivers and aging adults gain a better perspective on how each feels and is affected by caregiving and needing care. There is no room for judgment in caregiving. Each situation is different and has its own complications and challenges.

Statistics prove that being a caregiver is stressful. Many caregivers are hesitant to express feelings of stress for fear of hurting the feelings of a spouse, aging parent or loved one. Caregivers don’t want to be judged by others for saying, “I’m having a bad day.”

The health and well being of caregivers declines and the decline continues for years after caregiving ends. Caregiving has significant negative consequences on health when caregivers become burned out. Caregiving support and programs balance the emotional and physical distress of caregiving. If you are feeling burned out and overwhelmed the time to get help is today.