Desirable vs. Practical: The Balancing Act

When it comes to providing care for our loved ones, some of us go to great lengths to ensure as “perfect” a caregiving environment as possible, moving heaven and earth to create the kind of atmosphere we believe they would want. But what happens when what’s “desirable” is outweighed by what’s “practical”?

I knew of a case where a daughter was caring for her father with Alzheimer’s. His sundowning was out of control which meant his daughter and her husband were suffering not only a lack of sleep, but also a high-functioning anxiety due to her father’s argumentative outbursts—which occurred around the clock. When asked why she didn’t look into long-term care, she said her father had made her promise on her mother’s grave that she would personally care for him and never put him into assisted living or a nursing home.

It is crucial to assess the real needs of our loved ones—and balance those needs with what we as caregivers can actually do. Caregiving misses the mark if it fails to provide what the patient truly needs, but it also falls short if it places an undue burden on the functionality of the caregiver’s own life.

Some caregivers have emphatically stated that they would never allow their loved one with Alzheimer’s or another form of dementia to be put into any type of long-term care community. Some families are actually in the position of having enough money to pay out of pocket for assisted living, but they refuse to spend any of it because they argue they can do a better job than any “facility” could.

The goal is admirable, and some households do manage it with great success; but all family members involved must collectively count the full “cost” of keeping a dementia patient in their home. There are many factors to consider, such as how the caregiver’s spouse feels if the caregiver is spending every minute tending to a resident relative with cognition issues. What if the patient had early onset dementia, and the appointed caregiver still has teens or a young adult son or daughter living in their home? In situations like these, caregivers may be saving their money, but they might wind up with irreparable damage to their other relationships.

Sometimes families may have the emotional and relational support, but they lack the funding for long-term care. The sheer cost of assisted living can be a huge problem, and while hiring in-home nurses or using an Alzheimer’s day care sounds like a great idea, it can also be out of financial reach if resources are limited.

AARP stated that in 2019 unpaid family caregivers spent almost 20 percent of their own income (an average of nearly $7,400 per year) to cover expenses related to providing care for a loved one. It’s easy to see how quickly these care costs add up:

• Changes/updates to one’s home to safely accommodate the patient
• Co-payments for medical equipment such as oxygen, walkers, etc.
• Personal care expenses for the patient such as clothes and incontinence supplies
• Transportation expenses such as gas to medical appointments, or outfitting vehicles to accommodate wheelchairs
• Educational expenses such as consultations with lawyers or training to care for the patient in the home
• Paid help to provide respite to the caregiver (this includes adult day cares, counseling/therapy, geriatric care managers and hired companions)

So where is the money coming from? According to the AARP analysis cited previously, more than one third of caregivers have cut back on their personal spending in order to foot the caregiving bill; three in 10 have used personal savings; one in 6 have lowered what they put toward their own retirement; one in 7 spent less money on their own health care; more than 1 in 10 have gone into their personal retirement monies; and 1 in 10 have taken out a personal loan.

Caregivers should seek counsel from those who can give realistic insight into the day-to-day requirements of providing care—such as medical professionals as well as other seasoned caregivers. Try to be open and discuss all aspects of the job with family members who will be immediately impacted by the caregiver’s duties, deciding together what is the best and most practical way to proceed. A realistic look at the money (both the patient’s and the caregiver’s) can sometimes light the way by default, whether it’s to be full-time at home or supplementing care received from an assisted living or nursing home community. “Caregiving” should balance “care” with the “give” (and take) necessary in all our healthy relationships.