Now that you are beginning to understand the challenges of caregiving, have identified and assembled your caregiving team, had the difficult conversation with your aging parents about their visions of the future, and emphasized again and again the need for open communication and feedback, you are ready for the next steps.
Some More Fundamentals
Some of these suggestions may seem premature while others may strike you as unnecessary, but the following is a distillation of the needs and approaches shared by others who have taken on this essential caregiving role. (Where needed, you will find links to sources that provide more detailed information). You can also seek specific guidance from others who have faced similar quandaries about how to deal with a specific caregiving issue in our Senior Care forum.
- Contact (in person if possible) health care providers on your team, including doctors, nurses, pharmacists, as well as the bankers, investment advisors, and lawyers who handle your parents’ financial affairs. You need to locate and collect health and life insurance policies, a list of prescription medicines and where they are filled, and bank account and credit card information. Ask for usernames and passwords if your parents have important documents or accounts stored on their computer. Once you identify and locate all these documents and materials–and this may not be a complete list for your situation–make a complete record and store the documents in one secure place.
- From your parents and other health professionals, find out about current medical diagnoses and prognoses, perhaps during a scheduled appointment. Physicians will need a signed release form from each of your parents in order to discuss medical issues with you. So you can stay abreast of any medical changes, ask the medical providers to put your parents’ medical records online. (For more information regarding online medical records, visit the HealthIT.gov website, a government website on storing, sharing and retrieving health care information). Ask about whether medication monitoring is needed.
- You need to know what their insurance policies cover and how and when premiums are paid. Is this a job you need to take on, or should you delegate it to a team member? Do they have long-term care insurance? If so, what does it cover and, if not, would purchasing long-term care insurance make sense? Do they have a durable power of attorney and a living will? Do you need a medical power of attorney to enable the kinds of future care decisions you and your family may have to make?
- You also need to reach out to your parents’ friends and neighbors and include them, at least informally, on your caregiving team. Solicit their help in alerting you when something–anything–seems wrong. Does your father seem more forgetful than usual? Is your mother limping more? Are their living quarters more cluttered and chaotic than usual? Friends and neighbors can notice changes you may not notice–or that your parents want to hide from you. Make a list of all those you have contacted, with email, phone numbers and addresses to share with members of your team.
Finding the Best Living Arrangements
Maybe your parents are doing just fine where they are, for now, but as physical and mental conditions change, their care needs will change too. To prepare for this, you need to explore the many different living situations and variations of levels of care currently available, with more on the horizon to meet the demands created by this ever-growing segment of the aging population. (Read our Resources page for online links to organizations that can help you search for the best housing options.)
- This starts with the contemporary emphasis on “aging in place,” which, if possible, may be the best option. Most aging parents really don’t want to leave a longtime home, but the desire to “age in place” presents its own set of challenges. You may have to “parent-proof” their home, eliminating potential stumbling hazards like scatter rugs and electric cords and making sure needed kitchen equipment is within easy reach. Pay special attention to bathrooms, where statistics show most falls occur.
- If your parents will need part-time help to clean, shop, do laundry, cook or whatever is needed to stay in their home, find and hire a reputable and responsible helper.
- But when the need escalates from part-time to full-time help, you and your team will be confronted with another series of decisions. Can they or your family afford full-time help? If so, can their home accommodate live-in help or will you need to find help for three eight-hour shifts?
- At this point you may need to consider other living arrangements. Can your parents–or will they–move in with you, or can you move in with them (something clearly impossible if you have a family and small children)? Is there a nearby assisted living community or facility that they can afford and which has room, or does it have a long waiting list? Some facilities specialize in Alzheimer’s and/or dementia care. If that kind of care is needed, check these out and see what’s available. A nursing home is another alternative, one that will be required if one or both of your parents need round-the-clock nursing care and supervision.
- Ask the health providers and social workers on your team, as well as the local aging agency, about other options that may be available in your community. Is there a local “village” that residents have joined so they can “age in place” with support services? Is anyone constructing living “pods” so aging parents can live in your backyard? Check out “dementia villages,” even those in another country, which may be less costly alternatives for quality, full-time care.
A MAJOR Question: Who Pays?
Once the various types of settings are checked out and compared, communicate the findings to family and other team members so there is less confusion when it comes time to review the options and make a decision if new living arrangements are indicated. Cost is a key consideration in many housing decisions. How will these costs be covered, and who will pay? Do your parents have sufficient funds and assets to cover the costs? Can/will family members chip in? Medicare pays only in limited situations and while Medicaid may step in when other resources are drained, the government expects to be repaid before estates are settled. If Mom and Dad were in the armed services, look into what coverage the VA will provide. How much?
The government website Eldercare Locator. provides information on facilities and payment options, and The National Council on Aging offers a free service that identifies benefit programs that pay for medications, health care, utility bills, and food.
Another program, PACE (Program of All-Inclusive Care for the Elderly), is a Medicare program and Medicaid state option that provides community-based care and services to those who would otherwise need a nursing home level of care. It offers a full range of health care services from prescription drugs, doctor care, transportation, home care, checkups, hospital visits, and nursing home stays when necessary, adult day care services, meals, physical therapy, dentistry, social work consulting, and laboratory and X-ray services.