Getting involved in parent care does not mean controlling their lives. It means framing questions and helping them make choices. The best way to start this process is to learn about home- and community-based programs. This can be done by calling the local Area Agency on Aging (AAA) and by searching Internet caregiving and aging sites.
The next step is communication: Set up a family meeting in person, by e-mail, in private Web chat rooms or through telephone conferencing. Everyone possible should be involved: parents, adult children and their spouses, grandchildren and concerned relatives or neighbors.
“We need to break down communication barriers between adult children and parents that can leave a family at risk for exposure to financial, physical and emotional consequences when Mom and Dad need long-term care,” says Brenda Bufford, Chief of the California Partnership for Long-Term Care. “Children have a pretty good understanding of what parents desire in terms of death and dying and estate planning, but no idea of the dreams and visions for the years when they may need long-term care.”
Because it is not always easy to bring up these topics, approaches might include:
- Saying you are beginning your own family’s estate planning and need their advice.
- Sharing your emotional concerns directly.
- Assuring you do not want to take over their affairs but are concerned that needs will be met, especially if a crisis occurs.
- Giving them a list of questions and scheduling time to talk later.
- Admitting you are worried about their driving, for example, and offering to find alternate arrangements.
In many instances, caregivers encounter resistance from parents who are embarrassed or who don’t want to be a burden. In this case, it is wise to employ a third party professional such as a private geriatric care manager, a financial analyst, a therapist, clergy or an elder care attorney to facilitate the proceedings.
The meeting should focus on facts and issues, not on negative emotions or past conflicts. Each person should be allowed time to share concerns and suggest solutions. Then family members can agree to specific actions, such as what help is needed and who will provide it. Even siblings who live far away can handle bills, make phone calls or do Internet research. And remember that just because your parents have different views does not mean they are invalid. Here are questions to explore at the meeting:
- What are your parents’ perceptions about current needs and biggest worries?
- What are your parents’ health conditions today? Future prospects?
- Is their home still accessible, or does it need modifications for disabilities and hazards? Is a move warranted?
- Do they need help with daily chores, meals, bathing, errands? Can they still drive safely?
- What are your parents’ current and future financial needs? Do they need planning assistance?
- Have they executed the necessary legal papers (wills, trusts, powers of attorney), and are they up to date?
- Do they have adequate health insurance and long-term care insurance?
- What are their wishes for end-of-life care?
Not every family succeeds in getting their parents to do some early planning. But the risks of not
even trying to have this conversation are significant. Caregivers can become so overburdened that their physical health collapses; their fatigue and frustration can lead to depression and even divorce; a lack of sufficient legal and financial planning can send a family into bankruptcy. Not only are most of the costs of long-term care not covered by health plans, but many caregivers also cut back on work hours or quit altogether in order to provide care. In the worst of scenarios, some caregivers have even died before their loved ones because of the stress.
Brenda Bufford cautions that families need to make a paradigm shift in thinking about long-term care from the notion that remaining at home is always best to realizing that assisted living residences may be a better option, both financially and emotionally, especially if there are no caregivers available.
“We don’t walk away from our parents when there are physical, financial and emotional issues,” she says. “We step in and take care of them. This is about relationship.
For more information and free brochures on long-term care planning, contact the California Department of Health Care Services, California Partnership for Long-Term Care at (800) CARE445.
Beth Witrogen McLeod is a journalist, speaker, and consultant on caregiving, spirituality, and wellness at midlife. Her most recent book is “Caregiving: The Spiritual Journey of Love, Loss, and Renewal” (Wiley, 2000).