Senior Alternatives

Care Management and Home Care Services
Adult Daughters: Our Nation’s Front Lines of Caregiving in the Era of Alzheimer’s

September 28, 2021

In honor of National Daughters Day, we wanted to share this quote from Daughters Unite: “If adult daughters went on strike tomorrow, our health care system would collapse.” Here’s why:
Mary Anne Sterling spent more than 20 years shepherding her aging parents through the health care and social services systems. From the beginning, she found herself in an adversarial relationship with both of these siloed systems. Why? Because she had information. She knew her parents better than the health care system knew them. She was a caregiver and translator, who just happened to be their daughter.
Times have changed for adult daughters. In the era of Alzheimer’s, we are desperately trying to deal with a disease we don’t understand, one that our best scientists and neurologists are still struggling to grasp. There are no good treatments. There is no cure. According to the latest numbers from the Alzheimer’s Association, more than 5 million Americans are living with Alzheimer’s, and another 15 million family caregivers are on the front lines caring for them. A growing number of these caregivers are adult daughters. According to some sources, more than one-third of dementia caregivers are daughters.

What Adult Children Caregivers Do

Being a parent to your kids is one thing. Being a parent to your parents is a completely different beast, and yet adult daughters are expected to assume this role with no preparation, no training, and no complaints. Some of us did not have picture-perfect childhoods with the Cleavers, so we end up caring for difficult parents while we struggle with our own emotional baggage.
Alzheimer’s and other forms of dementia present unique challenges to family caregivers. As the disease progresses, the person afflicted may become combative, wander away from home, or refuse to bathe. They may no longer recognize their family members. They often repeat the same story or ask the same question hundreds of times. Eventually, they can’t be left alone anymore without tremendous risks, which may include wandering, falling, leaving the stove on, or other life-threatening situations. For many, the disease is present for a decade or more. For adult daughters, this equates to a permanent change of life plans.
In addition, they are increasingly asked to provide care that was once reserved for nurses and other medical professionals — wound care, infusions, colostomy care — and caregivers struggle to manage the blood sugar of a parent who no longer understands why a needle is pricking their finger three times a day and becomes combative every time.

Experience Breeds Knowledge

Adult daughters are the information hard drives of health care. Adult caregivers have to assimilate knowledge that spans numerous domains in order to support loved ones. This includes medical, insurance, legal, and social services information. They are advocates, care coordinators, medical record keepers, medical decision makers, insurance navigators, medication administrators, and more. They frequently have to speak on behalf of their parent(s) who may have lost the ability to recite their medication list or describe the circumstances that led to a fall or illness. They are well-versed in how Alzheimer’s has affected their parent.

Overwhelming and Costly

The impact of Alzheimer’s caregiving on adult daughters is often devastating. What you don’t see are the consequences. The price of caring for someone with Alzheimer’s or other forms of dementia is high:
  • 1. Mom and/or dad move into your home. Your relationship with your spouse and children changes. You don’t have time for them anymore. Nothing prepares you for the stress.
  • 2. Your siblings are in denial or don’t agree with your care decisions. This results in endless arguments and the bulk of the caregiving burden falling on you.
  • 3. Friends and family eventually disappear as the disease progresses and caregiving consumes more of your time. Your ability to get away for lunch with friends or enjoy a movie or shop is non-existent.
  • 4.Your health suffers. You used to go to the gym, but that falls off the priority list. You aren’t eating as healthfully as you used to. You realize that you are depressed, but you don’t want to admit it. You soldier on. This eventually translates into chronic health conditions of your own.
  • 5. You leave the workforce, unable to balance complex caregiving and a career. This has financial implications that last for years: dwindling bank accounts, disappearing retirement accounts, and decreased Social Security benefits.

What Senior Alternatives Can Do To Help

Highly educated and trained care managers can help you manage and relive some duties as primary caregiver. Some of the services provided include medical advocacy, review of placement options, navigating complex family dynamics, and management of client and caregiver stress.  We offer a unique home care model where our caregivers are trained and supervised by our master’s level Care Managers.  Unlike most agencies, all of our Care Managers are social workers, nurses or gerontologists.  Additionally, our caregivers are thoroughly screened and registered with the California State Registry.  This combination of masters-level care management expertise and high-quality caregivers results in the highest possible home care and better outcome.  Our caregivers provide personal care, respite care for families, transportation to appointments and other situations identified in the individualized care plan developed by the Care Manager.

Our interdisciplinary Geriatric Care Management team is well versed in many areas and has years of experience working with those living with memory related disorders, including Alzheimer’s.  Senior Alternatives also cares for those with mental health and chronic medical challenges.  Since all of our Care Managers are masters-level, we have been able to take on even the most challenging cases.

Our commitment to excellence has always been our gold star standard.  We care for people wherever they call home and if we are not the right fit at the right time, we will help find someone who is!

*Ms. Sterling is a speaker and educator on family caregiver issues and dementia, and has been featured in Kiplinger, The New York Times, USA Today, and The Wall Street Journal. She is chief executive officer of Sterling Health IT Consulting. 

 

If you would like to join the Senior Alternatives team, we invite you to reach out to us! You can also make a donation directly on our team’s page. The more we can raise for researching this fatal disease, the closer we come to finding a cure!

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