Caregiving Decisions: When No Choice is Ideal

 

There is no perfect time to make caregiving decisions, especially when no choice is ideal. Unexpected situations, misinformation, feeling overwhelmed, anxious, depressed, angry, fearful, stuck between a rock and a hard place, a lack of planning, and trying to figure out what were parents or caregivers thinking at the time culminate into a big ball of stress for families.

There are times when decisions have to be made about the care of a loved one. Due to a lack of planning or because of advancing health conditions the available choices may be less than ideal.

You’d rather not make a bad decision, but none of the decisions seem great. How do families manage when the choices are difficult? Many caregivers find themselves faced with emotional distress, guilt, regret, and more than a few sleepless nights.

4 Areas of Caregiving Decision-Making

A variety of choices surrounding care situations exist early in the process. However as health or other challenges become increasingly complex, choices can become more limited. Here are the main four areas where choices must be made about care:

  1. Financial ability to pay for care
  2. The complexity of the health diagnosis specific to planning for care needs
  3. Family or other relationships—who will provide care
  4. Adjusting to changing care needs

Reasons Caregiving Decisions are Delayed

Caregiving decisions are delayed for the same reasons many choices in life are put on the back burner. The time never seems right. The decision doesn’t seem to be that important. Why make a change if it’s not absolutely necessary?

In many cases, elderly parents don’t see the benefit of making decisions that will result in change. Family caregivers, friends, and others are in denial or disagree about the extent of the care needed because of their own personal or emotional reasons. Struggles within families result in challenges with dealing with reality and the time sensitivity of planning until disaster strikes.

Lacking the financial ability to pay for care can make decision-making agonizing

Medicare is assumed to be the payor of care for older adults. When families realize that Medicare is limited to emergency or medical care only they are shocked to realize that aging parents did not save appropriately for the costs of care in retirement.

The time when parents need care may also be the point where adult children caregivers realize that they have not adequately saved for their retirement. Finances become a focus when there is no money to pay for the care needs of parents. Adult children providing care are caught between a rock and a hard place trying to help elderly parents, work, raise their families, and pay their mortgages.

Parents and their caregivers may be unaware of public assistance program through Medicaid, called by different names in each state, that reimburses for some home-based services and nursing home care. This is when deja-vu arises and children remember promises made of never putting parents into a nursing home.

Parents may also make bad financial decisions in appointing a child, they thought they could trust, as an agent under power of attorney. Siblings may eventually discover financial abuse in the way of misused funds, loans, or a second mortgage and then find themselves scrambling to manage a parent’s health and financial matters.

Health conditions can be difficult to manage

Health conditions, like memory loss or advancing chronic disease, will result in difficult choices that may include moving a parent into a care community when care cannot be provided in the home. When care planning is done in the early stages, discussions around individual responsibility to remain as independent as possible should occur.

Aging parents may not realize, through their daily habits, the effect they can have on remaining physically and mentally able. Difficulties with activities of daily living are often the initial reason parents need help.

When health conditions exist and worsen, this increases the type and amount of assistance needed. Early interventions through ongoing medical care and oversight can prevent many issues from worsening if parents are willing to make changes in their daily routines and habits.

For children who are agents under a medical power of attorney, decisions to decline surgery when there is no clear benefit or to refuse aggressive measures to preserve life can be emotionally distressing. The relationship with the end-of-life decisions for aging parents is different for each caregiver. When parents have clearly spelled out their wishes in a living will, making the decisions may be easier, although not emotionally filled for the child named agent.

Family relationships and who will provide care

When difficult decisions are presented, the ease or difficulty of resolving the situation relates to the quality of the caregiver’s relationship with the person needing care or support and other family members. Wives and daughters are often the first-line caregivers.

Other family members may wish to give advice without being directly involved. This absent but interested relationship can cause friction within families and between siblings.

Families are separated by distance and drawn back together because of a caregiving crisis. Distance and unfamiliarity complicate caregiving decisions.

Many family caregivers believe they are alone functioning in dysfunctional situations. This is rarely the truth. Some of the greatest stressors in family caregiving situations are poor family relationships.

If you are in a challenging caregiving situation and decisions are present or in the near future, becoming educated about your options is important.  Decisions made in haste without adequate information are often regretted and can be costly.

Adjusting to changing care needs

The ability to be flexible to adjust to changing care needs is another challenge for caregivers. Not knowing what to expect day to day or week to week leaves some decisions up in the air.

Instead of feeling that the care path of an aging parent is uncertain, there are components of care planning that can be put in place so that backup plans are available when situations change.

The importance of having early family discussions about caregiving decisions cannot be underemphasized. It is these early discussions that can give spouse caregivers and adult children caregivers peace of mind to know that they are making the best decisions possible.

© 2012, 2014, 2022 Pamela D. Wilson, All Rights Reserved.

Article by: Pamela D. Wilson, MS, BS/BA, CG, CSA is a national caregiving expert, educator, advocate, and speaker. More than 20 years of experience as a court-appointed guardian, power of attorney, and care manager serve as Wilson’s platform to increase awareness of caregiving as an essential role in life. She is a content developer, author of all articles on this website, and videos on her YouTube Channel. Wilson hosts and produces The Caring Generation® podcast and is the author of the book The Caregiving Trap. You can reach Pamela by completing the Contact Me Form on this website.

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